Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Occipital-atlas-axis joints fused or not

Hello everyone,

I am new with AS Dx and my main problem has been the lost of ROM and pain in my neck. Only 15% left, right, up and down.
My last PT told me that 50% or neck rotation is performed by Altas axis joint so I would like to know if there is and image test that can show the actual damage in that area. Sometimes I think that the exercises can be causing more damage than benefits but no sure, if that area is already fused then is not possible to increase the ROM in my opinion.
How do I know if my atlas axis joint is already fuesed?

Thanks
Alex

Hi there,

First of all welcome to the forum!
This is a great place to absorb tips from fellow patients and find out about new developments surrounding our disease.

Also I am not a medical professional giving advice but will share my experience being a patient myself asking the same questions as you.

The most important question I would have to you right now is how long you had symptoms? Did the symptoms start in the recent few years or were they ongoing for a long time? (5-10 years)

Untreated inflammation can cause significant loss of ROM as well. The best way to confirm if the joint you asked about is fused would be to request a CT-scan, which should be the most sensitive image test to bony growths.

However if you don’t yet have treatment you should ask your doctor about options, for example a TNF-inhibitor or IL17-inhibitor to lessen inflammation and improve mobility.
If you are currently on treatment an MRI can confirm if you still have active inflammation ongoing in your joints, which may contribute to your loss of ROM.

My cervical rotation almost doubled over a 3-year period with humira and Paleo/AIP diet. My left cervical rotation is now almost normal (70 degrees). My right a little less so (60 degrees). I have some structural damage already that my rheumatologist says was caused prior to my Humira treatment, as my MRI shows no inflammation ongoing.

I am personally a bit split about physical therapy. All research and medical advise points to PT being an important part of pain management and maintaining or improving mobility. There is a biomechanics professor who held a talk for SAA that said “motion is lotion” and should never be bad.
Although poor posture (sitting/standing/sleeping) may cause mechanical stress that degrades our joints as well. It may be worth seeing a spine specialist to discuss. I think in the absence of inflammation/spondylitis, joint degradation is classified as osteoarthritis and the end station being “sclerosis” (thickening of bone) which is an early stage structural change as opposed to “ankylosis” (fusion of bone) which is a late stage structural change.

Theoretically, if our disease is in remission with no inflammation nor prior structural damage, it should not be possible to advance past sclerosis - although that is just my theory and needs to be confirmed by an expert or more experience patients than me.

Take care,
PsSpa

Hi PsSpa

Thanks for your answer, I am having this symptoms for about 8 years and the lost of ROM has increased over the years, i went to different specialists including a reumy and the diagnostic was always degenerative because my blood tests were normal (hla-b27 negative, esr sed and c reactive protein normal)
and there was no pain in the lumbar area. They also took x rays and mri of the cervical and lumbar and only prescribe me PT and medications with mo improvements.

A month ago I had pain and swollen in my left wrist and right knees so I went to a new reumy and after a new blood test my esr sed and c reactive protein were high and he told me that the past x rays shows some sclerosis in the sacro joints so he is confident that I have some type of inflamatory spondiloarthritis so he want me to start with enbrel. I am waiting for the insurance approval.

I was reading a lot through the forum and found great stories and information here that is going to help me to manage this better.
I think I am a classic example of delay/misdiagnosed case and I hope to get some improvements with the biologics.

Thanks again
Alex

Hi Alex:

It sounds like we were in a similar situation. I went to a dermatologist regularly for my psoriasis and I have notes as of 2013 that my CRP was within normal range and no apparent joint issues. Years went by and in 2015/2016 I noticed reduced cervical ROM and stiffness and tried with exercises. In 2017 my primary doctor and radiologist thought syndesmophytes in my x ray was osteoarthritis and I was sent to PT. It took another year before I was diagnosed with spondylitis by a rheumatologist. High CRP, high ESR, hla b27 negative. I spent 6 months on NSAID with some improvement, 1 month on AIP w/o NSAID with even better results, and then finally in June 2019 on biologics.

My CRP and ESR stay low with Humira as long as I don’t eat gluten or too much processed/sugary food. Whenever I eat gluten my CRP always goes up (data points at two times the last few years after I ate gluten). So what I found is that diet is an important part of my treatment.

As I wrote earlier the lower inflammation has contributed to increased ROM in my case. I remember feeling awful before I was diagnosed with spondylitis with limited neck movement. Now I have a lot higher quality life and my neck movement is much better than what it was 3-3.5 years ago. It has been a gradual/slow improvement over the months and years and I have not felt any quick improvements over a short period that some patients report. I guess we are all different in how we respond to medication.

In your case the CRP and ESR might be elevated also due to swollen peripheral joints? The best way to answer your question about axis fusion is to get a CT scan I think.

Also if you can bring CRP/ESR under control with biologics and diet then you should be able to regain quite a bit of ROM. Inflammation did more than I thought to my movement and quality of life.

Also enbrel has a financial support page that can reimburse most out of pocket expenses of the medicine

https://www.enbrel.com/financial-support

Take care,
PsSpa

Hi PsSpa

My rheumatologist told me he want to start the biologics and see how it goes before taking the decision of a ct scan because he don’t want more radiation in my body (3 different set of x rays in the last 3 years).
I am trying to start with LSD or AIP but the problem is the lost of weight and lack of energy. Did you have that type of problems? How is a regular day of your diet?
I was on sulfazalasina 2000 mg and indomethacin 100 mg daily for about 3 months and I can said there was and improvement in ROM but just minimal.

I never had psoriasis before but I remember I used to have some type of eczema around my face but no one took that as important.

Thanks for the tip of enbrel support the rheumatologist office is applying also through AMGEN.

Another question, how is/was your ROM looking up and down?

Thank you so much again you are giving me some hope I can improve my quality of life.

Alex

HI Alex, welcome again to the forums. I have spoken with people that said they thought their limited ROM was permanent only to find out that it improved after starting a TNF. I"m not on a biologic, so I'm not speaking from personal experience.

My ROM is limited and there is fusing is all along spine including neck. For me, exercise and yoga improves my ROM. For me, I feel that the exercise and yoga helps me utilize the ROM I have and helps maintain posture in the long term. you may have seen photos of people with severe fusing in a position that makes looking ahead impossible. I believe that wont happen to people that are able to start effective treatments within the first ten years of symptoms.

There is low dose CT scan that shows very small details of syndesmophytes. I'm only aware of NIAMS that does this as part of an AS study. You may see if the study is still open on clinicaltrials.gov. search Michael Ward.

Even if you could see the fusing, I'm not sure that would change the recommended treatement of exercise.

I'm not aware of studies that show SSZ is effective for spine, including the neck. I believe it's mostly used for skin and periphery joint issues.

hope this helps.

Another thoughts, if you want to talk to others with AS, the education/support groups are meeting via zoom. There are lots of great groups around the country. I'm in the Los Angeles group and we meet the 2nd sunday of the month from 2pm - 4pm. Since it's zoom, you can join any group's meeting.

Hi Alex

I’m happy to be here to help. I recall how difficult the time around diagnosis is and all the questions that I wondered myself too.

Between January 2020 and April 2021 I was on the AIP diet. I made a couple of exceptions at a few special occasions for general Paleo/non-inflammatory foods which went fine. The first 3 weeks on the strict AIP were the most challenging with some GI changes, random food cravings (especially sugar and saturated fat), and some occasional tiredness. Especially when I had a food craving I tried to distract myself by starting listening to some music, going out for a walk, or just doing something to distract the craving until it was less impactful.

After the first 3 weeks it was awesome. Anxiety was gone, energy levels really stable, inflammation results in low normal range (w biologics simultaneously), and my general sense of well being increased. A seasonal cough that I used to have every winter for 15 years was suddenly not coming back at all anymore. Best part was that when someone else indulged some processed normally well tasting food I didn’t even crave it! It was so easy to abstain at that point. I lost a bit of weight but got a better overall body composition.

A normal diet day would look something like this

Breakfast: Soup based on bone broth/cooked wine/fish sauce or salt/spices/+ vegetables, herbs, squeeze of lime and sometimes meat. You can vary this a lot according to your favorite flavors and get really skilled at cooking awesome soups to start your day.

Snacks: carrots and blueberries

Lunch: usually variety of vegetables + meat (today I had paleo gyros and broccoli)

Snacks: oranges / fruit

Dinner: varies but usually salad, smoothie, guacamole or something like that. A bit more elaborate Friday-Sunday dinners

I am also taking vitamin D, omega 3, magnesium daily. Plus collagen and organic boswellia. I use neck heat pillow to relax muscles and stiffness.

My ROM up / down is about 30-35 degrees up and 70-80 degrees down. My down motion used to be a lot worse and more painful before biologics + diet, now it is basically normal. My up motion just improves marginally but it was worse a few years ago. I believe i have previous structural damage which limits up movement specifically.

The most important thing for me with using biologics is that my smile and laugh started to return more and more over time. Some days when I’m off from work and enjoying myself with family and friends I don’t even remember that I have this disease. Those days are so wonderful. The months leading up to my diagnosis was really hard with neck getting worse. So there is hope to be in a better place after you biologics treatment + lifestyle changes.

Take care
PsSpa

Hi there

Rahmba I think I should be close to 10 years of the first symptoms so hopefully I am still on time, base in my previous x ray my spine is straight in the neck and almost normal in the rest, I think that was one of the causes of the diagnostic delay because the damage is mainly in the neck. You are right about the treatment I am going to need biologic regardless there is fusion or not so I am not going to push for a ct scan. Where I can find the links for the zoom meetings? I am in Florida.

PsSpa I am going to include the bone broth in my regular diet, do you made the bone broth or you buy it from places like Walmart or amazon?, I was reading some people buy it but also other people said that it contains preservants.
I think that carrots contains some starch so don’t know if include it as snacks.

Thanks both of you and I will report my progression

Alex

Edited: Do you think gelatin is a good food for AS? I try to eat it everyday first time in the morning

Hi Alex

Most often I cook my own bone broth. Debone a whole chicken, paraboil, and then cook a couple of hours in instapot with water, cloves, ginger, salt, and bay leaf. Some star anise (not AIP) and honey for extra flavor. Some people roast the bones in the oven first. Fish bone broth (boiled with the head and fins) is really good as well, especially if cooked with some white wine and lime. The cooking process boils away the alcohol. Although the fish bone broth doesn’t smell too good while you boil it, it tastes a lot better in the final soup product. :-D Unless you don’t like seafood.

I also buy Collagen Great Lakes that I add to my daily round of green tea. A couple of scoops. I am not an expert but some products may be lower quality, especially big box gelatin. Here is an in depth article by the paleo mom:

https://www.thepaleomom.com/gelatin-vs-collagen-vs-bone-broth/

About carrots, it seems to be listed as a starchy vegetable but if you look at the actual nutrition carrots have just marginally higher carbs than broccoli and about the same amount of fiber. At the same time, carrots have about half the carbs of potato/sweet potato. So it is a bit of a greyscale. Carrot is a good plant source of vitamin A which is important for healthy T-cells (one of our immune system’s infection and cancer fighters).

Although I don’t really eat much (even non-grain) bread, rice, potatoes etc anymore due to high starch. Don’t miss it in the diet at all, high carbs low nutrition typically.

Sorry I can go on about nutrition and food all day. I really got an interest in cooking, nutrition, functional health etc after starting the Paleo/AIP diet 2 years ago ^_^

Keep us posted about how it goes!

Hi PsSpa

I never in my life had concerns about my nutrition I used to eat anything without reading the labels and only trying to keep a healthy weight but now this disease is making me read and understand a lot of about what we eat.
I started the strict AIP, I started with 36 hours fast and in only 3 days I am feeling and improvement on my left wrist and hand, knee a little improvement and neck still stiff, don’t know if it is a placebo or because of the diet but I don’t care
I am going to keep the same routine for about a week and in the meantime I am going to look how to add healthy extra calories because I am also loosing weight, I was reading about the coconut milk and would like to know your opinion about it, back in time I was taking almond milk but it does not have the calories I need.

Happy to found something is starting to work because so far the medicines did not much, anyway still waiting the biologics approval.

Thanks Alex

Hi Alex

Same here, I used to eat tons of stuff on the S.A.D. (standard american diet): coke, pizza, hamburgers, chips, etc. Now I don't miss any of that.
Getting diagnosed with spondylitis changed my diet forever and not only that, my lifestyle as a whole.
I would never want to go back eating "normal" foods regularly, whoever decided that eating artificial ingredients and ultrarefined products with all fiber and micronutrients stripped away, is supposed to be normal.

Actually 3 days is about the turnaround of the microbiome, so it is a good sign if you already noticed a few differences.
Good question about calories. I lost about 25 lbs myself from 150 lbs to 120-125 lbs on the AIP diet. My mom and my nurses/nutritionists were in panic about it but I personally never felt better! And I lost a bunch of visceral fat that is supposed to be unhealthy anyway.
I think the obesity in our society shifts the perception of a normal weight too much. Just my 2 cents.

During my first year on the AIP I consumed about a can of coconut milk a week. It turned out to elevate my cholesterol quite a bit, especially LDL, although not past the recommended threshold. There is also a lot of debate about whether high LDL cholesterol is actually that bad, apparently there are subcomponents LDL-a and LDL-b where only one is bad for us but the clinical tests don't measure LDL subcomponents. My peak HDL cholesterol (the good cholesterol) occurred during the first year of AIP.
The reason I bring up LDL-a/LDL-b is that there are some population studies on indigenous populations eating high saturated fat diet (largely from coconut) who has less prevalence of heart disease as compared to the western world, where we eat more carbs.

Personally I cut back on the coconut milk consumption to maybe a can a month or so? And it has stabilized my cholesterol on a pretty low level again which I am happy with. Also Trader Joe's has a low-fat coconut milk option, mostly coconut water with some fat, if that would be an option for you.

Here is a quick research talk on the link between diet and microbiome (dysfunction of the microbiome is likely causing spondylitis). The lecturer also addresses your question about caloric intake:

https://www.youtube.com/watch?v=MyoJ3Z02U_s&t=957s

The research on resistant starch/fibers is one reason I don't go full out no-starch and still eat some none-grain starch through AIP/Paleo.

Take Care,
PsSpa

Hi PsSpa

Great video I concluded that everyday more Dr’s are supporting the relevance of the microbiome in autoinmune/autoinflamatory diseases but there is still a lot of unknowns on that area.
I continued the diet with the improvement on the wrist/hand but the inflammation of the right knee has increased. Also I am starting to feel some symptoms that I relate to hypoglycemia, not sure yet but I think my body is missing the sugar and I am having a hard time doing the transition, will see how it goes the next days.

Thanks Alex

Hi Alex

During my first time on the AIP I had psoriasis flares 3 weeks in (?!) that I couldn’t explain which then subsided after a while and stabilized after 6-8 weeks. keeping up with all hidden sources of inflammatory compounds is not always easy.

My GI tract was rioting the first 6 weeks on the AIP before it was stabilized on the new diet. If you eat enough fiber (30 gr-35gr per day) then that will help. Also that keeps you feeling full. Avocado is a great source. Also all kinds of vegetables.

It took a long time before I started feeling improvements with my joints. Probably also synergistic effect with biologics which I had started 6 months prior to AIP.

The quickest signs of improvement for me was lower body temperature (I used to get really warm when I was inflamed), increased sense of wellbeing, less headaches (too little sleep used to generate that), clear nose/throat, no coughing and eventually subsided psoriasis. I almost completely clear of psoriasis these days.

To this day my GI gets unstable on yoghurt (the probititics I assume) and processed stuff like meat sticks.
Also through AIP I found out that gluten, many grains, added sugars and peanuts make me flare. I also found out that I can tolerate dark chocolate, wine, and cheese which was awesome.

Take care,
PsSpa

Yummy, dark chocolate, wine, and cheese all of them are delicious to me right now, anything different of what I am eating sounds like an exotic meal 😀
Right now I am taking the following
Breakfast: smoothie with strawberries, blueberries and coconut milk
Lunch/dinner: chicken or salmon( 2 or 3 times week beef), spinach, lettuce as salads
Snacks: orange, apple and sometimes carrots
2 or 3 EVOO per day

Pretty boring but if this work I will be more than happy to quit everything else. Anyway I am thinking to stick to it and then try to reintroduce other foods, cheese and chocolate would be great.

Thanks Alex

Hi Alex

There are many good recipes to try on AIP that might even change how you think about cooking. I wasn’t too good of a chef before AIP but became a better one during the diet since I had to cook everything.

Paleomom is a good source of recipes but also other sites. Basically if you think of a dish you would like to eat, type it in and add “AIP.” I made gyros, cauliflower risotto, liver pate, coconut curry, artichoke saute, nomato sauce with zucchini bolognese, whole roasted chicken etc on the AIP.

In the end of the day, the goal of AIP is to find foods that cause you to flare and to transition you to Paleo which is easier to follow long-term. Find a good indicator of what might be flares to you - pain, stiffness, swelling/inflammation - etc and monitor that as you reintroduce food one at a time. I spent about 8 months on the AIP before I cheated with Paleo foods the first time (went well) and then another 4-5 months before I went on Paleo for a longer time. Has been going well as long as I avoid foods I react to. Also if you will cheat over the holidays with certain non-Paleo foods you can schedule a lab test directly after the holidays to see how that affected your CRP.

Also - a cervical specialist that I saw today mentioned that there is a particular x ray you can do for a series of atlanto-axial joint images while in motion. So if you find that your joint is not fused then you could monitor it with this type of x ray. The cervical specialist also said that PT is not hurtful as long as you don’t do quick/sudden motions and don’t cause pain as you do it. Also acupuncture may help for stiffness.

In your case you might want to get inflammation under control with biologics and diet before you do too much PT.

Take care,
PsSpa

Hi PsSpa

Still hanging into the diet, the symptoms still there, let’s said some symptoms are been reduced or disappear (pain in lower back and sacroiliac, swollen knee, body temperatura and fatigue) and others are still the same ( neck pain stiffness, wrist pain swallow).
Also still trying to avoid loosing weight but I think I am reaching the floor around 132 pounds, let’s see.
Before my AS diagnostic I was reading about cervical issues and I know that there are a type of X-ray called digital motion x ray ( DMX ) but since my main problem is my limited range of motion I don’t see logic to going through this test, maybe when the inflammation is under control I can think about if, this video explain the procedure
https://m.youtube.com/watch?v=R1l7sVMTV7o

I know that AIP does not allow nut but in the keystone book low starch diet level 3 they allow a minimal amount of nuts daily, had you tried to include some nuts in the diet, thinking it could be a good source of calories.

The enbrel approval is still on process but I think I should get it over the next weeks.

Thanks Alex

Hi Alex

Nuts are OK also on the extended Paleo (after initial AIP) although it is initially excluded as part of the elimination phase. Some people have sensitivities to certain nuts. I found out peanuts cause my psoriasis to flare.
If you are excluding most starches while on the AIP, maybe it would not hurt to try a nut type or two for energy supplementation, like walnuts, which is supposed to be anti inflammatory.

Something to keep in mind is that, I believe, the no starch approach assumes the Klebsiella bacteria escapes out in the body to generate an antibody response and trigger immune reactions in the first place. The AIP/Paleo is supposed to heal the gut barrier (tight junctions) to prevent that escape of microbes into the body from occurring at all (which may cause additional health effects other than just AS). Although that is just a theory from my side, safest is to exclude most starch as well since it is proven starch does feed Klebsiella. Just make sure to get enough dietary fiber through other foods like avocado, vegetables, nuts/dark chocolate etc.

Some motion x rays could help review if there is any joint instabilities. Although would be best after a few years on biologics perhaps.

I feel you regarding neck stiffness. That took a long time to improve for me with gradual small steps week after week month after month. Exercise and biologics also important to reduce stiffness.
For us stiffness may not completely go away but can improved to have less impact on daily activities.

Also be kind to yourself, set realistic goals and have a lot of patience. Just as the pandemic, we may not ever get back to normal, but we can do what we can to live with a new normal. It may be 30 or 45 or 60 degree of cervical rotation instead of the 80 or 90 we once had.

Take care
PsSpa

Hi PsSpa

I received the approval for Enbrel I am going to start next Friday so let’s see how it goes.
Went to a new PCP today and he ordered allergies test because he saw some inflammation when was checking my mouth, the tests were for food and environmental allergies, the environmental test was only moderate positive to mold and for the food allergies I have to wait the blood work results, don’t know if this will help but at least is something to rule out.
About the goals I understand and I don’t set and specific goal I have been many years with minimal ROM and minimal pain but lately the pain is the main problem so I realized I need to increase the ROM to decrease the pain and spasm, need to free the neck so I don’t stay in a bad posture most of the day.

About the diet I am going to keep a couple of weeks more with salmon/chicken/beef, lettuce/spinach and strawberry/blueberries coconut milk smoothies after that I am going to start including other foods.

Will report the progress with Enbrel

Thank Alex

Hi Alex

Great news that you were approved for Enbrel! Hopefully that will help bring additional relief. Let us know how it goes. It usually takes up to 3 months before the medicine really built up in the body. I have been on Humira for 2.5 years and had very few side effects. Some unexplained scarring on my back a few times (unless I unknowingly scratched against something) but other than that basically nothing. Humira + diet brings down my CRP to lowest detectable level and ESR to 4 mm/h. My inflammation markers came down after about a month on Humira but the joint improvements have taken a lot longer than that.

Sometimes when I eat foods that trigger an inflammatory response (by my mistake or lack of alternatives) then I feel the Humira wearing off earlier and I end up longing for the injection in my second week. That happens for example when I eat certain grains and processed products, and definetely gluten, which I try to avoid at all costs. Gluten triggers my inflammation markers to jump up way above normal even if I take Humira. I know this because I made myself take a celiac test during these 2.5 years on Humira (you have to eat gluten for that test...) and another time when I got gluten by my mistake over the holidays, which were the only times my inflammation markers were not normal. With exception of ESR being a bit high around 15 mm/h when I got too little exercise early in the pandemic and did not supplement with omega 3.

I have been curious to test fasting sometime just to see how it compares to Paleo/AIP but due to job, travelling, family, etc. I never really to get a point when there is a good time to test that.

Take care,
PsSpa

PS Here is an AIP recipe that I made last week. For meat I used ground turkey

Raw fried artichoke
6 servings

16-20 Jerusalem artichoke hearts
Extra Virgin Olive Oil (cook on low heat)
2 pinches sea salt
2 cups grated cabbage
1 small leek
2 yellow onions
2 tablespoons apple cider vinegar
200 gr fresh spinach
400 g cooked meat (eg ham, minced meat, or chicken)
1 bunch finely chopped parsley

1. Rinse and divide the Jerusalem artichokes into smaller wedges. Keep the peel (there is a lot of fiber and nutrition). Saute them in oil on medium-low heat for about 10 minutes or until they have softened slightly. Salt and set aside.

2. Sautee the meat and set aside.

3. Grate the cabbage and shred the leeks. Finely chop the onion. Sautee cabbage, leeks, and onions in oil. Pour over the vinegar and let it steam off.

4. Put the Jerusalem artichokes back in and add the spinach.

5. Add the meat and sautee everything. Taste and salt a little more if necessary. Sprinkle with parsley.
Possibly it can be good with a little squeezed lime juice also for the sake of freshness.
Also if you don't like sour flavor, you can exclude the vinegar or balance it with a little bit of honey.

6. Serve with pickled beets or pickles.

Hi PsSpa,

I am on my first week of enbrel(started last Friday), so far some improvements in the wrist and hand (just little inflammation there), better sleeping through the night and the neck a little better but still painful specially if I don’t take some rest during the day. The best improvement is in the left wrist and left hand, I almost don’t feel there was a problem there but that was also the place I was getting better improvements with the diet, before enbrel I was able to reduce the inflammation a lot so probably is the combination and also because there is not to much mechanical damage there.
With the neck I am waking up moving a little bit more with lot of pop and grinding sounds and during the day it get more stiff and painful.
Other good thing is that I am tapering down the indomethacin and was able to start swimming again ( I stopped like 2 months ago because the knee and hand inflammation).
So like you said nothing miraculous overnight but moving in the right direction.
I am going to continue with the strict diet for about some weeks more and definitely will start to elaborate different dishes, thanks for the recipe.

Tomorrow is my second enbrel so let’s see how it goes

Thanks
Alex

Hi Alex

The popping and grinding is probably because more areas of your neck is moving now as the inflammation is lessening. It may be like that for quite some time before it stabilizes and make less noise. It may never completely go away, some of us are just more prone to joint popping due to body mechanics. I have several joints that make popping sounds occasionally that are not affected by inflammatory arthritis.

Also as inflammation lessens it is even more important with regular exercising. It is maybe one of the most important things aside from medication and diet. Joints are meant to be moved to keep ‘em healthy. We just have to be careful not to over stress them so they get unstable or damage ligaments (like elite athletes who push themselves so hard).

Interestingly I feel my cervical joints become better after running. I think it is because it is the up and down bouncing movement that activate the discs in the joint. Biking, swimming, walking may not vibrate the joints enough.

When you mentioned swimming I realized that when I was a teenager, my body was never aligned well with the water surface. In hindsight it might be because my extension (look up) wasn’t full range already then. So this disease may have started a lot earlier than I thought. In subtle ways. It is really a lifelong disease. Sometimes I dream myself away hoping that in the future they can just artificially replace these damaged joints with 3D printed ones from your DNA. But then i realize that is probably not for our generations and that we have to do the best of it during the time we have.

Here is a cheerful research article for the long run
https://academic.oup.com/rheumatology/article/54/7/1210/1850347

Basically it says that spinal mobility keeps improving for 5 years after the initial dose of TNF alpha and maybe longer. The average participant increased cervical range of motion
about 20% with a disease duration of 10-12 years.
So maybe in your case you could get up to 30-45 degrees each side. If you mainly have inflammation and less structural damage, you can probably expect up to 60-75.

Either way, you will hopefully see your quality of life improve and help you find joyful activities that makes you think less of the burden of the disease.

It is nice to chat with you as well. Good to share experiences.
Do you mind me asking how old you are and what you do for a living?

Take care
PsSpa

Hi PsSpa

I am glad also to speak with you, I feel my disease very similar to your (mine later diagnosed) and It is inspirational to my all your experiences.
I am a software developer although I am currently in FMLA ( can not be a couple of hours in from of the computer) I think that staying in the computer 8+ hours daily is the reason why my neck is the most affected area, also most of the doctors when they know my type of work first thing they think is a mechanical issue.
2 years ago before getting worse I used to jog 45 minutes daily and I felt what you described after finishing but then I had an mri that said my cervical discs were dehydrated (black discs, still preserve height) so I stopped any impact activities, still don’t know if it is good or not. I can relate what you said about other joints popping, my right ankle is making sounds all day and I don’t have any problem there.
Swimming is the activity I am feeling better, sometimes I even felt similar relieve when I finish to swim like I had after jogging. I only do crawl style but without moving my neck to much because I use the full face mask so it allows me breath without putting stress in my cervical joints.
I think finally I found the right balance in the diet, I added a can of sardines in the breakfast and last days the scale showed I gained and extra pound, I would like to get at least 5 more.
I am also thinking to do some weight lifting to gain some muscle (lost a lot through the last 6 months) but I will go carefully.
Today was my third dose of enbrel and in 2 weeks I will have the work blood to check if the CRP and ESR decrease.

Thanks a lot
Alex

Hi Alex

I also relate a lot to what you are writing. I am an engineer and like yourself I sit by my computer for long periods of time Mon-Fri. Although I do get to go out on site visits every now and then but not at all to the degree I would need. My old not-so-good computer habits were to have tense shoulders and lightly forward stretch with the neck which likely contributed to my cervical region being most affected. Also my sleep posture was curled for periods of my life, going back to childhood, which is not good either.

However, with that said I also feel daily stiffness in the lumbar/thoracic regions (w/o radiologic changes except bilateral sacrolitis), which improves temporarily with daily exercises and when I have days away from the computer. It is the static positions that are not good. Trying with standing desk as well to change things around but find it hard to stand at work regularly when you are mentally stressed. I much rather be physically active when I work in that case, i.e. a completely different job. Maybe start a Paleo restaurant or work in a grocery store? ^_^ Maybe not right now, but my medium-term plan is to get away from full-time office work and do part-time consulting/teaching or a more active job so I can control the long-term course of this disease. Health is more important than work or money. Japan's PM Shinzo Abe resigned due to his ulcerative colitis relapse a year and a half ago. That inspired me to create an exit pathway for myself as well.

In the meantime I am trying to manage with daily aerobic exercises (biking / running / hiking) and doing my physical therapy every morning and evening, regardless of how busy my job is. Ironically today I feel better than in the middle of the week, when I was supposed to have highest humira serum concentrations after injection. I think it is due to a combination of biking home from work yesterday (13 miles up and down hills :-D) and that I am eating AIP during the week. I have been experimenting with the diet and cheated with some expanded foods over the weekend this year, including alcohol and some starchy foods like potatoes, and I don't think my gut can take cheating foods every weekend so I need to maintain a long-term low-starch AIP with some strategic Paleo foods.

My cervical discs are also dehydrated (or desiccated as the radiologist said) and one of them is mildly bulging. I love to use neck heat pillow, also showers, sauna (I have Finnish ancestry), and hot baths are great. My rehab doctor said that dehydrated discs are normal as we age. Although, that is also what the radiologist said after my first cervical x ray in 2017 prior to my DX ("normal wear & tear"... syndesmophytes at 28??! + I have psoriasis), so sometimes I think doctors are just dismissive to patients unless you present with multiple obvious symptoms that align with their guidelines for prescribing mediciation, which is probably why they rarely find anyone at early stage of spondylitis.

Good idea of adding sardines to the diet. That's omega 3 and good amount of calcium. It is easy to get calcium deficient on paleo diets so good to find the calcium rich foods. Eventually as you go beyond AIP you could start drinking things like Almond Milk that is high in calcium and eat cheeses.
I'll eat more sardines too, it is low in mercury too so not bad to eat regularly like the bigger fish.

Take Care,
PsSpa

Got my first blood work results after 24 days with enbrel and 45 days of strict aip/nsd and happy with some results
CRP 0.3 and ESR 2(fantastic decrease), vitamin d spike from 34 to 72 the only problem is the low blood white cell count that is 2.8 and under 3.8 is considered low, it was 3.7 before I started with enbrel and 5.2 at the end of December. I got covid at the beginning of January and I am thinking maybe my body is not fully recovery. I will have a follow up with my rheumatologist this Friday so let’s see what he think.

I hate the phrase “normal wear and tear” or “x percent of people with your age has the same X-ray mri results with no symptomatology”, totally agree with your opinion about doctors they don’t like patients that do a research but a lot of them looks like they were diagnosing and prescribing with the first results from google.

So far happy with the results with a some concerns about the white blood cells

That's great, good job. I was down to 4.2 for white blood cells last year and my rheumatologist was not concerned at all, she said that it is likely just a sign that I have less inflammation. It sounds like your white blood cells were low to start with. Also some of the reference intervals might be a bit arbitary or reflect a large historic population group generally eating a lot more inflammatory foods than we do, so I think that is also important to keep in mind. Maybe 2.8-5 is normal for you or following an anti-inflammatory diet?

Some research articles conclude that CRP<0.5 (time-average) is a predictor of radiographic non-progression. This is the only factor that we can really try to control, as the other two predictors for radiographic progression are male sex and radiographic changes at baseline. At the same time, I read that the disease could still be active with a low CRP, although maybe wouldn't lead in radiographic progression in a short time frame.

I was able to keep CRP at 0.1 for almost 2 years during the pandemic. Now as things are relaxing I gained some weight/visceral fat with less strict diet (mostly during the weekends), my CRP has been at 0.4 a few months. So I am going to loose all my excess visceral fat to see if that brings CRP back down to 0.1. There are some research articles suggesting that overweight spondylitis patients have more active disease. Other research articles suggest general association between visceral fat and CRP levels.

Also I got very interested in fasting. My brother's sister-in-law has long-COVID symptoms and health care can no longer help her. So she is trying the 16:8 method (fast during 16 hrs, eat during 8 hrs) and AIP. I did the 16:8 method too this week and it was surprisingly easy. Even did 22:2 over the weekend now. No problem, barely felt hungry. When you eat though, you still eat what you would have done in your normal day so you get your calories. Some researchers like Dr Sinclair is arguing that there are ancient signal proteins called "sirtuins" which regulate things like metabolism and DNA repair in the body. These sirtuins are associated with longevity but it really is anti-aging or anti-inflammation as inflammation drives aging, and the disease we have ages us way in advance even if it is only locally at joints. I have the neck of someone 40-50 years older than me maybe. Some researchers at MIT and elsewhere found that fasting also makes stem cells more active and regenerative, potentially repairing some of the damage by our disease, although there are fewer stem cells in the joints/cartilage.

There are some Ramadan-fasting research articles that shows both inflammation markers and PsA/spondylitis disease expression dropped by up to 1/3 at the end of ramadan, without changes to diet and with biologics. That would be a fantastic supplement to biologics if true!!!

There are some posts on this forum which attest to fasting as a way to control flares and limit crippling pain.

So anyway I am trying fasting as a tool right now to loose weight and get my CRP under control again, while eating AIP/Paleo. Also I am curious to see if it helps in general with the disease, if not to heal cartilage, at least stop me from loosing more.

This far I felt some improvements with less pain/stiffness and less joint cracking although not sure if is too early to say. Ramadan-fasting usually lasts 30 days I believe, so I have 3 weeks to go. ^_^

Hi PsSpa

Still in my journey of healing and improvements.
I had the follow up with the rheumatologist and he didn’t pay attention to the low white blood count, he just indicated to continue with enbrel(looks like is working) and told me to move the neck to try to gain some mobility(no specific exercises), the next follow up is in 3 months so I am going to follow up with my PCP about the white cells, don’t want to to wait too much time. In general I am much better some days I don’t even remember problems in my wrist or knee so the neck is going to be my long battle. The brain fog and tiredness is also better. I think my body already adjusted to the diet and is working better.

About the fasting I tried to not eat anything between 6pm and 8am I also read documents about how to increment the stem cells in the body and before I was diagnose with AS my focus was more in exercises, fasting, diets(no aip or no starch just healthy foods) and supplements, I even thought in PRP or stem cells injections trying to regenerate cartilage (maybe in the future the stem cells can be an option to us) now my normal fasting is only about 14 hours and Fridays I am doing 24 hours fasting, I am skipping the Fridays dinner and Saturdays breakfasts, the documentation suggests that the activation of the stem cells starts around 22 or 24 hour of fasting so maybe in the future I will increase to 36 hours.

It’s been 38 days since my first Enbrel and 60 days on the diet and even when I am still with limitations the improvements are remarkable, my family suggest that is only the medication because the diets in the past did nothing I said that I had different diets but never removed the starch or had this low levels of carbs. I don’t care, for the moment I am not going to change anything not even include any new foods if my blood works shows everything is fine I am going to stay like this for long time. I am reaching the point that it is even a habit for me I don’t feel any stress or cravings other foods so it is my new normal 😀

Hi Alex

Good to hear the update. If the rheumatologist didn't bring up the white cell count they are not worried about it. Although I think it is a good idea to follow up about it to ensure the doctors really look into it. How are you feeling with the neck range of motion, flexibility, pain, movements now? Any changes? Good to hear the brain fog/fatigue disappearing, those are among the first symptoms to fade after the diet switch.

My rheumatologist also doesn't make any comments about PT exercises nor any expectations of mobility outcomes. She keeps referring to PT & rehab. Make sure to get a good PT because their competencies do vary a lot. My very first PT, before I got diagnosed properly, was joking about me like I was some rusty old car in the morning. Not OK. My second PT kept saying each appointment, how her friend is on Humira and get sick all the time. This made me overly worried about the biologics. Also not OK. My third PT was finally good, about the same age as me, with a doctorate - and took my disease and training seriously, finally properly measuring my range of motion. So be picky about who you see, there are a lot of substandard professionals in health care unfortunately, in my experience.

I think the 24 hr fasting rule of thumb comes from an MIT article comparing GI stem cell regeneration in mice (link below). The main conclusion seems to be that the stem cell activity was triggered by the metabolic cell switch from glucose to fatty acids. Metabolism is an ancient mechanism we share with a lot of animals so this would probably also be applicable to humans. So maybe time is less important but the metabolic switch more important, i.e. having your liver produce glucose from stored fatty acids rather than having the glucose-state triggered by frequent eating (a metabolic state which then stores fat & causes inflammation in the process). The question is, does stem cells in cartilage take longer before they activate? Or are they just fewer? I guess they should be equally affected by the metabolic switch but who knows. I read some research article hypothesizing that limbs we were historically more likely to loose (like ankles) have more stem cells than limbs we were less likely to loose (like hip & spine). This is all emerging research so a lot more studies and year needed.
https://news.mit.edu/2018/fasting-boosts-stem-cells-regenerative-capacity-0503

A separate discussion is the sirtuin activiation, involved in regulating metabolism and also DNA repair. Some sirtuins are activated by dietary choices others by fasting. I also read some articles that inflammation is prevalent in the glucose-metabolic state, which would explain why a lot of people see improvements when the metabolic state is switched away from the glucose state.

I don't want to wait for years for conclusions on this which is why I also will fast regularly. Human biology evolved for a long time before we had regular food supplies, so maybe it is better for our health to live in accordance with the evolutionary conditions of our DNA, where fasting may have been a frequent involuntary condition.

Regarding your family's doubt about your improvements stemming from medication or diet or both, show them my data below. The columns are "dates/CRP/days since last test/ESR/days since last test/medication/other notes". Especially compare the 2019-03-29 data points to 2019-05-09. I.e. AIP without NSAID, was a lot more effective of depressing CRP as compared to NSAID without AIP. Also look at the 2019-12-04 and 2020-01-04 data points, even though I was on Humira my inflammation markers skyrocketed when I didn't eat Paleo/AIP. Especially 2020-01-04 was bad because I ate lots of gluten for a celiac test, which ironically came out as gluten tolerant. Due to the effect on my inflammation my rheumatologist recommended me to avoid gluten.

I was initially skeptical to the effect of diet but my actual hard-data convinced me otherwise and will keep me on lifetime healthy eating. If this is the effect on my inflammation, what other effects do healthy food have in the body? Probably a lot we barely know about.

The other data points tell you that
- ESR is mainly depressed through humira, Omega 3 and exercise
- CRP is mainly depressed from humira and diet (visceral fat/weight TBC, which are the two most recent data points)

Hopefully this helps.
Keep me posted how things go! I will also update you as soon as I have more to report as well ^_^

Dates CRP, mg/dl Days since last test ESR, mm/h Days since last test Medication Diet

2022-03-03 0.4 64 4 64 Humira Paleo, Vit D, Omg 3, Boswelia, ACV
2021-12-29 0.4 63 4 63 Humira Gluten free, Vit D, Omg 3, Boswellia, ACV
2021-10-27 0.1 118 4 118 Humira Paleo, Vit D, Omg 3, Boswelia, ACV
2021-07-01 0.1 62 4 62 Humira Paleo, Vit D, Omg 3, Boswelia, ACV
2021-04-30 0.1 76 4 76 Humira Paleo, Vit D, Omg 3, Boswelia, ACV
2021-02-13 0.1 64 5 64 Humira Paleo, Vit D, Omg 3, Boswelia, ACV
2020-12-11 0.1 59 7 59 Humira AIP, Vit D, Omg 3, Boswelia, ACV
2020-10-13 0.1 64 7 64 Humira AIP, Vit D, Omg 3, ACV
2020-08-10 0.1 60 9 60 Humira AIP, Vit D, Omg 3, ACV
2020-06-11 0.1 40 16 40 Humira AIP, Vit D, ACV
2020-05-02 0.1 64 12 64 Humira AIP, Vit D, ACV
2020-02-28 0.1 28 10 28 Humira AIP
2020-01-04 2.8 31 28 31 Humira Holiday foods, gluten/dairy/processed
2019-12-04 0.7 42 8 42 Humira Holiday foods, gluten/dairy/processed
2019-10-23 0.1 42 9 42 Humira Anti-inflammatory + avoid gluten
2019-09-11 2.5 39 16 39 Humira Some junk food, some healthy food
2019-08-03 0.1 40 4 40 Humira Anti-inflammatory + avoid gluten
2019-06-24 2.2 46 38 46 Naproxen Elim. junk food, chinese herbs
2019-05-09 0.9 41 30 41 None AIP
2019-03-29 2.1 78 32 78 Naproxen Anti-inflammatory
2019-01-10 2.9 48 56 48 Meloxicam Elim. junk food
2018-11-23 4.2 50 60 50 None Junk food, SAD

Hi PsSpa

A little bit down here.
I know this disease is a roller coaster but these last 2 days I had some steps back related to tiredness and brain fog, maybe is stress of being 24/7 focus on the disease and what can I do to improve it. Looks like I am a patient without too much patience.
Last week I had a colonoscopy and everything looks ok in my colon, no polyps no inflammation so far, so between the preparation and the procedure I did like 36 hours of fasting, just water and bone broth, after the procedure I ate normal and during the next days I was feeling better till yesterday I started again the heating in my neck area and ears and the tiredness and brain fog, not as bad as it was a month an a half ago. Even yesterday in the morning I was thinking that enbrel started to improve the neck ROM (I don’t have any specific device, I tested in front of the mirror and back in a wall to avoid compensation and I knows the areas I can see when turn left or right) I was seeing far as my normal but then the tiredness make me feel bad again.
I know I have to be patient but when I feel better (no pain) I tried to move my neck more often and push to reach more ROM and don’t know if that can make my condition worse.
Today I got my 7 enbrel and 42 days since started and even with the steps back I am continue seeing positives effects.

Question about the fasting theories: does the stem cells that are activated in the intestines after 24 hours of fasting can travel to different part of the body to regenerate (joints for example) or the activation process is a signal that activate stem cell that already exists in each place of the body.
Anyway I am planing to continue doing 24 hours of fasting one day a week.

Other question besides your neck and the psoriasis is there other symptoms that you would consider chronic? I know the disease is chronic but for a long time my only problem was my neck and since 8 or 9 months the tiredness and brain fog but the other joint problems (hip, hands, knee…) is in general good and only affect my if I overuse it.

Good method to keep track of the inflammation markers, I am going to create and spreadsheet with notes.

Thanks
Alex

I feel ya, Alex. Over these years there were moments I didn’t know if I got better or worse due to fluctuating pain levels and flexibility. The good news is that looking over time, things did get better. As compared to when I was diagnosed things are significantly better. It can be hard to see the small steps when you are on a long journey. Here are some reasons to stay with a positive outlook:

- you responded well to enbrel, inflammation markers dropped. The medicine is working!
- usually it takes up to 3-4 months for the medicine to reach peak serum concentrations
- most research studies point to pretty big improvements 6 to 12 months after first injection
- long term research studies point to gradual/small improvements even after the first couple of years and up to 5 years and maybe longer (few research studies went on for that long, however I believe there is one 10 year study in progress)

Going back to the start of the thread, even if your AA joint is fused, you should still have at least half your neck ROM left. That is assuming worst case scenario. Best case AA joint is not fused and you can get more than half ROM back.

Is the colonoscopy age related cancer screening or why did you have to do that?

I am not an expert on stem cells but from what I read stem cells exist in different tissues throughout the body but don’t travel or relocate.

Regular Exercise is important for us, I think especially when inflammation is down and we started healing. There are some research articles that state that physical therapy and aerobic exercise can help improve range of motion and flexibility by 25%. Some patients on this forum have stated that exercise might prevent fusion as well. I read some where that even physical therapy can have an anti inflammatory effect in the joints.

Other symptoms: I have some stiffness/light pain in my back intermittently.
It is at early stage and non radiographic at this point. I am hopeful it can remain like that over time with medicine, diet and exercise.

Before I started AIP/Paleo/anti-inflammatory diet I used to have seasonal coughing that lasted for weeks on end (doctors thought that was asthma and rhinitis). I also had frequent headaches and daily anxiety with periodic minor depressions. All of that is completely gone since I switched diet away from the western style way of eating. These other symptoms have been gone for years now. When I tried eating bread and a few other inflammatory diet staple foods a few times, I felt anxiety coming back within a day or two. Not even mentioning my psoriasis, which becomes very red, inflamed, and extensive when I eat gluten. Also my whole body becomes warm when I am on that inflammatory state. Other minor issues can be that nose clogs up when I ate something I have some allergy to. So diet switch is life long for me, don’t miss the old way of eating at all.

Take care,
PsSpa

Hi PsSpa

I think I am again on track of the healing path. Yesterday I had the busiest day I remember in probably a year, based on my Fitbit I was 11 active hours and that does not include about 1.5 hours driving that for my sometime is more uncomfortable than other things. At the end of the day the neck was achy and stiff but not as regular days 2 months ago with much less activities.

I am getting my enbrel Friday so maybe the medicine was wearing off and the one I got last Friday helped me to feel better or the fasting I am doing between Friday and Saturday or maybe both, who knows but at least the recovery time was short, usually in the past it took me days even weeks to recover from a flare.

The colonoscopy was due the age related and family history of cancer not related to any symptoms, I never had problems just some constipation but not too frequently(even with no complaint since the diet I feel like some minor symptoms disappeared, is hard to be specific but my whole digestion process changed for better) I read about leaky gut, colitis, crohn and the relation between gut and the immune system so I was curious to see if everything was ok there, it was good to know that at least there is not signs of inflammation.

I agree with you about the diet I am thinking to keep it forever and I am even enjoying my sardines can in the morning and not missing the bowl of milk and oatmeal I took for years.

Thanks
Alex

Nice to be out staying busy/active! Aerobic exercise is a great tool in the healing pathway. Sorry for the late response, had a few busy weekends involving tax filing and a relative moving to a new place. (which btw resulted in quite good aerobic exercise - 18 000 steps and sore arms last Saturday... Can still feel it) Also I had my COVID booster shot last weekend so per ACR recommendations I withheld administration of Humira for 1 week, without worsening symptoms, which I take as a good sign for now, although always second thoughts that the medicine is going to loose its efficacy.

If you have a family history of colon cancer, it is definitely worthwhile paying close attention to daily fiber intake. Since you are on AIP/Paleo you are already eating the most nutrient-dense foods on the planet but it is good to check just that the overall diet meets daily fiber targets.

An easy way to prioritize would be to just divide the # of calories in a food with its fiber content. For example

1 Average Orange
62 calories
3.1 gr fiber
= 20 calories/gr fiber

1 Average Avocado
322 calories
14 gr fiber
= 23 calories/gr fiber

Fewer calories/gr fiber is better as it will result in higher fiber intake for an isocaloric diet (energy intake does not change regardless of diet).

For a 1800 calories diet with a recommended intake of 38 gr fiber, any foods with higher caloric density than 47 calories/gr fiber would not be preferred.
Of course some foods like meat or fish contains no fiber but we have to eat it anyway for protein and micronutrients but that is why it is good to compensate with fiber heavy foods, far below 47 calories/gr fiber, to ensure we get enough fiber overall.

Unfortuantely most people following the standard american diet, does not meet the daily recommended fiber intake.

Actually, according to a gut researcher from Stanford that I found on YouTube presenting on a conference, humans used to eat a lot more than 38 gr of fiber per day during evolution. Lots of fibrous roots, nuts, etc. put the fiber intake more at 100 gr fiber per day, which is what our gut microbiota might be adapted for.

So maybe today's recommendations are more minimum guidelines with today's high-energy foods, rather than something that necessarily is best for our health.

Anyway, short side story.

Keep up the good job. I am curious to follow your journey because I believe your symptom history that you described, offer quite a opportunity for symptom improvements, especially having low CRP for many years. So please keep us posted on how it goes!

Thanks,
PsSpa

Agree with the fiber intake but since I am not having GI issues I am going to continue focusing in the inflammation and neck issues. I bought a goniometer in Amazon to measure the ROM of the neck at home, I was noticing some minor improvements but it is easy to measure with this device, my wife is taking the measurements and even when I know is not a profesional and it can have some errors is something that will help me to check the progression. For my surprise the neck left/right is reaching around 40 degrees, I remember in the bad days I was even at 15 so this is something good even if there are errors in the measurement.
During the last weeks the eczema/dry scalp(maybe psoriasis) I had around mouth, nose and forehead is showing up suddenly and disappeared in about 48 hours I don’t know if it is any specific food or related with the stress levels. Also thinking that maybe is related with the cycles of the enbrel because Wednesday and Thursday (Enbrel is on Fridays) are also the days I feel the increase of the symptoms.
About your break of humira thinking positive is that maybe you reach the point that with the diet and lifestyle you can keep most of the symptoms at bay, that would be a great.
Based on what I read we have to be ready to switch the biologics at some point or even stop it for some time so always good to know if we can have a decent quality of life without it.

Next week I am going to see my PCP to check the white blood levels again because I don’t want to wait till the next rheumatologist appointment.
Will keep the thread updated.

Thanks
Alex

That's good, always go with your most positive measurement and build your momentum. The most important thing is feeling things are going in the right direction. Hopefully the PCP can find out the root cause of the white blood cells or commit to monitor your levels.

In other news, here is an interesting article on Vitamin D (note D3, better than D2) and omega 3 supplementation:
https://acrabstracts.org/abstract/v...n-the-vital-randomized-controlled-trial/

Articles like this come in handy if anyone you meet during your journey try to dismiss supplements as waste of money. A double-blind, randomized-control trial (neither patient nor doctor know what the participant is taking = the gold standard) from Harvard with 25 000+ participants is as good as it gets in the medical research world.

Eliminating autoimmune disease in a population by 20-40% depending on # of years and Vitamin D/Omega 3 supplementation would be fantastic news, given how cheap Vitamin D and Omega 3 is relative to most drugs and late-stage symptom relief with traditional healthcare.

Some early investigators in the Paleo/AIP community talked about Vitamin D and Omega 3 long before articles like this came out. Also it will probably be long time before health care picks up on studies like this.

So I am going to keep happily taking my Vitamin D and Omega 3 supplements, hoping it helps control my disease and wade off other potential comorbidities.
(*for Omega 3, just make sure to get quality products, as some "fish oil" supplements contain mercury - trace element present in most fish. for Vitamin D, may be good to moderate intake at around 2,000-3,000 IU per day or a higher dose every other day, and focus on D3)

Hi PsSpa

Last week went to my PCP and like the rheumatologist he did not take the low white cell seriously, he did not order blood work to follow up so I have to wait my next appointment with the rheumatologist, I already have the blood work order that is at the end of May. The PCP told me that all the allergies test were ok and he agree with AS diagnostic even when my x ray and mri don’t looks like the usual AS (bamboo vertebrae etc etc). He also gave me some advices about try to avoid change the biologics to often, keep away of chiropractic and be careful with the type of physical therapy.

About vitamin d my level at the end of February was 74 so the rheumatologist told me I can stop the supplementation I was taking 1 pill of 50000 U weekly and now I am taking the same biweekly, omega 3 I am eating one can of sardines everyday and in the label show that it has 1700mg of omega 3 not sure if it is true.

The diet is almost 3 months and even when I think I don’t miss any food I would like to increase carbs intake, right now I am around 50 g daily and would like to be around 100g, that is still low carb and I think it can help with energy levels. Last week I included one orange daily and so far does not note any reaction.

The main issue my neck is stable between 30 and 35 degrees left/right and allowing me be more active during the days, the pop and grinding is still there and even when in a week interval I don’t notice any improvement looking back 2 and a half months ago there are significant changes. Still not able to sit at the computer for one hour but I think if enbrel and the diet continue working maybe in two months more I can go back to work at least part time.

Thanks
Alex

Hi PsSpa

I would like to know the type/brand of magnesium you are taking and if you take it because magnesium can help with the joints regeneration or something else.
Also the link for collagen and organic boswellia.
I was taking magnesium and collagen in the past when I was treating the disease as osteoarthritis and I am thinking to start it again.
Over the last week I am having and increase in the anxiety and stress, not sure why since I don’t change anything I can recall. I am waking up around 3 and 4 am and it is taking me around 1 hour to get sleep again. I was thinking that magnesium could help with the sleep quality. During the day I am also feeling weak and mentally worried and I think is due to the anxiety and the poor quality of sleep.

Hi Alex, how are you doing now?
Sorry for my late reply here. I was travelling for much of April and caught up on busy work/personal after.

I take a form of "chelated magnesium" which is supposed to be easier for the digestive system to absorb. This is a transparent pill with a thin film that contains powder magnesium. (as opposed to the hard mineral pills)
The reason I take magnesium is that most people are deficient (similar to D vitamin) and it helps with muscle spasms and relaxation/sleep. Early on during my treatment I had quite a bit of muscle spasms in the neck/cheek area.

Below is the variety I bought in the past:
https://www.amazon.com/dp/B002TU58Q...0Z9LIRWZC&amp&sprefix=chelated+m

It wants you to take 2 pills daily for 100% RDI but I just take 1 pill per day, assuming my diet can get me about 50%.

For boswellia I was trying a few different ones, the samsara organic powder I used the most. It is a good painkiller and removes the remaining chronic pain that humira doesn't take care of. I thought it must be better than NSAID (which could damage the gut barrier).
There are no good studies on the long term effect of boswellia, so it is hard to know how long to supplement or dosages.

Recently I also tried boswellia pills with turmeric and bioperine, like the ones below:

https://www.amazon.com/dp/B07GFSPXC...C4W3W2V6S4&amp&sprefix=boswellia
https://www.amazon.com/gp/product/B07JR5KB6N/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1

The second one has a California Prop 65 warning second time I was going to order it, so abstained.
The first one did not have Prop 65 warning and was US lab tested, so thought it should be OK.

I take a pill every other day or so. That helps remove most of the residual pain for me.

Collagen peptides:
https://www.amazon.com/gp/product/B005KG7EDU/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&th=1

I am not sure collagen makes much of a difference. Although it is supposed to be beneficial in general. Old Asian women take it for skin care.
It is supposed to be just the same amino acids you get from any meat. Although I read that some amino acids (like glycerin) may be downregulated in certain circumstances and thus maybe important as part of an arthritis treatment plan.

A lot is unclear with arthritis-specific supplementation as few medical researchers and big pharma companies are interested, since that could threaten their corporate profits and future funding for research studies. Also humira is a blockbuster billion dollar drug and helps a lot of patients live a good quality life... so the incentive to study low-cost supplements is small.

Lastly I just wanted to share my recent "heart health" (everylwell home testing) results from following a Paleo diet low in coconut milk/coconut oil. Maybe best way to describe my diet is grain-free mediterranean. Better than my first year when my cholesterol was slightly too high. Also good to see my CRP came down 50%, I lost about 5-6 lbs since my slightly elevated reading. Since then I lost an additional 5 lbs, so I am hoping my CRP is now less than 1 again. Will check labs next week.

HDL: 53 mg/dL (normal > 40)

LDL: 90 mg/dL (normal < 100)

Total Cholesterol: 156 mg/dL (normal < 200)

Triglycerides: 68 mg/dL (normal < 150)

HbA1c: 5.2 % (normal < 5.7%)

hs-CRP: 1.9 (normal < 3)

Hi PsSpa

Good to hear from you and glad to hear you are continuing a “normal life”. You inspire me I can reach that point in the future.
On mi side I continue my travel with ups and downs.
Good news is I am seeing some results in my neck ROM, my home measures increased a little bit from around 35 to around 40, if I push hard and with a little compensation I can reach 45, still a lot of grinding/crush sound but I think is the way.
Bad news is that anxiety/stress is still high and sometimes when I am standing or sitting (up right positions) for more than 1 hour I have a weird feeling that make me wish to lay down and rest. Is a mix of short breath with dizziness and little headache. That does not happen to me when I am swimming, I have a follow up appointment with the rheumatologist next week and I am going to ask I he think it is anxiety or some neurological issues.
I am also thinking getting back to work part time and I think that is creating some stress also.

Let’s see how I can overcome this symptoms.

Thanks
Alex

Hi Alex

I am happy if I can offer some inspiration. I know how it feels to be in your situation and fighting every day to get better. There are no activities I feel I can't participate in due to my disease. I also think you can too! Especially with the support of state-of-the-art medicine, diet, exercise, and fasting. Over Memorial Day weekend I biked approximately 50 miles, focusing to maintain good spinal postures. Biking and hiking are the physical activities I enjoy the most :-) Running occasionally.


I think you will continue to see improvements on mobility and also grinding/crushing (which may take the longest time to improve). I used to have a lot of grinding a few years ago but not too much anymore. It might also be because I am supplementing with boswellia, which is supposed to be helpful for joint popping.

Even though I lost 10 lbs from 145 lbs to 135 lbs my CRP still remained stubborn at 0.4 mg/dL, slightly elevated and higher than the home test (I assume home tests are jus less reliable). So, weight does not seem to be important in my case. This is motivating me to go back to eat strict AIP again. I have been eaten liberally, including dairy products, chocolate, and wine, since last Fall. Looks like I have to make those become rare treats instead of weekly treats and keep AIP as my mainstay diet.

Also I noticed that I have a couple of knuckles that got bigger on my right hand. Swollen knuckles is a possible symptom of psoriatic arthritis. I will check with my rheumatologist if it is really arthritis or maybe just soft tissue build up. A few months ago I had a mild case of COVID-19, which I think I got at work from a coworker who came in with a cold; viruses can change the course of diseases so ever since I had COVID-19, I have been vigilant for any changes. I had just been boosted the week before that, so it first did not strike my mind it might be COVID-19, until I tested myself.

In the end of the day, it is going to be very hard to go through a lifetime without catching any viruses, so I guess I just have to do the best of this if it turns out I now have onset of peripheral psoriatic arthritis. Future will tell.

Thanks,
PsSpa

Hi PsSpa

When I quoted your normal life I meant even when you can do everything there is always a reminder sometimes in form of pain or discomfort that will let us know to be careful with some activities but glad to know that you feel great to do almost everything.

I went to the rheumatologist to my 3 months follow up and all the blood work was ok, CRP 0.3 and ESR 2.0 it was the same numbers than 3 months before so I don’t know if that is the minimum level that Quest can measure. The white blood cells were also ok, 4 when minimum is 3.7, only the neutrophils little low 1452 and the minimum is 1500, so looks like it was the covid and I am still recovering. The rheumatologist also took an x ray to check if enbrel was not affecting the lungs and heart, everything was ok.

I also started to work part time 4 hours daily and the first days was better than I expected, during the memorial weekend I was even in Orlando and I was walking and standing 10+ hours daily during Saturday and Sunday, also had to drive about 3 hours each way, even with pain and discomfort it was also better than expected.

But as always I can not have to many days without a down, yesterday I was out with family for about 4 hours and we went to a restaurant (only eat steak and water) where the chair were not to comfortable and that was enough to make me return at home with stiff neck, headache and warm body I just took an antinflamatory went to bed and slept for about 9.5 hours, today I wake up better but still some headache.

I insisted my rheumatologist about other options I can do to improve my condition but he is only looking the blood work and just telling me move your neck and walk to help with your other joints.

The diet is still the same not thinking to change it. I think my skin is seeing some benefits because some dry scalps I use to have frequently are now less frequently.
I started the turmeric boswellia supplements so let’s see if I can get an extra benefits from it.

Thanks and will continue logging my journey, this thread also help me to review my all posts and remember how things has changed over the time.

Hi Alex!

Summer greetings! Hope you are able to be out a bit and enjoy the season.
How is everything going on your end?

Some good news here, my enlarged knuckles are not arthritis. The x ray showed "no significant degenerative changes." My rheumatologist recommended a review by a dermatologist as well to check if it is any skin condition (not psoriasis). I also did not see much red / inflamed color since I started eating more on AIP.

With that said, my CRP is stubbornly at 0.4 which I am convinced is because of not adhering more regularly to strict AIP/Paleo. My diet the last 10 months has been low-starch and no-gluten Mediterranean diet (including dairy, alcohol, legumes). I actually tested to go cold turkey to AIP approximately 96 hrs before the most recent blood draw, as I read that the microbiome turnaround time is around 72 hrs and the CRP half life time 19 hrs. If the CRP elevation would just be due to a microbiome producing inflammatory compounds, the CRP should have dropped with the AIP switch.

So likely the CRP elevation is caused by something else - maybe "leaky gut"? In which case I probably need at least a few weeks or maybe a month to heal it on AIP.
After a trip to Europe in August, I am planning to go back on AIP this fall and heal myself back to 0.1 CRP and then see how much I can venture outside of AIP while keeping my bimonthly inflammation tests at bay.

Since I restarted Boswellia supplementation I also notice subtle improvements in joint movement and low pain. Especially more flexibility.
Also generally speaking the more I move, and the healthier the food, the better I feel.

Thanks,
Ps_Spa

Hi PsSpa

Still fighting here with ups and downs. Working part time (4hours per day) which is good because during that time my mind does not think in the desease. I will have the follow up appointment in September but if the blood work is ok don’t think the doctor will change anything.
After 6 months on enbrel/diet I can said that definitely there are improvements and I noticed what you mentioned that I am smiling more and there are days that I can enjoy without thinking in the disease too much, still not a whole day but at least partially is good.
The diet is still the same just added sometimes goat cheese, oranges, grapes and removed the coconut oil because I am stable at 140 pounds.
Neck mobility stable around 40 degrees and lot of crunch but allowing me doing more things during the day.
I think the inflammation is under control and the problems I am dealing is previous damages that maybe it can heal with time. Anxiety, brain fog and sleep is also better but still bothering.
If I continue getting better slowly during the next 6 months I think I can reach a good point. Let’s see how it goes.

Happy to see you have everything under control on your side there is hope for me :-)

Thanks
Alex

Hi Alex!

Season's Greetings! Hope you are doing okay without too many downs and still seeing improvements in your wellbeing and quality of life.

Here is an update from me: During my bimonthly CRP/ESR testing before Thanksgiving, my CRP was still stubbornly at 0.4 mg/dL even though I was mostly eating AIP during the weeks with some minor cheats over the weekends (like coffee, soymilk, nuts, chocolate, etc..)

So on Black Friday, I purchased an "InsideTracker" test and went on a 2-week 22:2 / 20:4 fast on strict low-starch AIP the 2-4 hrs per day I was eating. The bloodmarkers ater the 2 weeks: My CRP finally came down to 0.11 mg/dL!!!! This is my first result less than 0.4 mg/dL in over 14-15 months. Just wanted to share this uplifting news, that it is possible to change the course of things even after a long time.

It is mind-boggling what the impact of slight diet adjustments are. During Christmas/New Year's I will cheat with the diet a little again but then back on AIP and fasting.

The InsideTracker test also gave me some more valuable insights:

- My SHBG was too high and my testosterone/free testosterone on the low end of "optimal." Too high SHBG is associated with various diseases like cardiovascular, cancer, etc. In my case likely because testosterone decreases during fasting so the hormone carriers (SHBG) build up. So I will try adjusting fasting periods and caloric restrictions to see if I can avoid overdoing fasting when I do it.

- My LDL was too high pushing up my cholesterol overall. I had this issue in the past on the AIP & Paleo, it is associated with the increased use of coconut products, mainly coconut flour as I use that for starch-free or low-starch baking. Also consider this: Coconut oil has 70% more saturated fat per gram as compared to cow butter and coconut cream has 2.5 times the saturated fat per gram as compared to cow cream. So, moving forward, I will cut out coconut oil and coconut cream completely except for very rare usage. Coconut oil is easy to substitute for olive oil but coconut cream does not have any substitute on AIP, so I just have to avoid it, so I can still use coconut flour sometimes.

Also my weight is normal now at about 132 lbs. I could loose a 5-6 lbs overall without issue but not much more.
According to the InsideTracker test I am 1 year younger than my chronological age... LOL! Oh well, it is just a number but a fun factoid. If I improve the SHBG and LDL issues, maybe could improve aging a little further. Interestinly my immunity scores were pretty good, especially neutrophils and lymphocytes, so my immune system seems pretty healthy. Also blood sugar, iron values, etc. were good which I attribute to the nutritious food on AIP. I will continue to track this but mainly to ensure my overall health is good to minimize the risk of any comorbidities as I really don't want other diseases on top of PsA/AS.

How is everything on your end?

Take care,
PsSpa

Hi Alex, how is everything going for you? Hope things are okay.

Sincerely,
PsSpa

Hi PsSpa

Hope everything is going ok for you.
Me personally still fighting the disease trying to find my new normality and adapt to it.
Was taking some time out intentionally trying to avoid social network and electronic devices.
Good things is that the inflammation I think is under control with the enbrel and the diet. The blood work are ok just the low neutrophils level but for the rheumatologist that is not important. Other good things is that the neck mobility is still around the same level between 35 and 40 degrees of rotation.
My back and hips are also ok I am wearing a Fitbit watch and everyday I do more than 13k steps.
Bad things is still the neck pain when moving, lot of pop and crunch , I feel like I have to do everything in slow motion to control every movement and the last gift is a tinnitus in the left ear and some light headaches. The PCP told me that the small bones in the ear can be affected also and cause the tinnitus so waiting for an ENT appointment.
During this time had some issues in my right eye, pains and redness, went to an eye doctor and told me it was episcleritis and not uveitis some steroid drops and is ok so not sure if was an issue related to the disease.
About the diet everything is similar, sardines, chicken, salmon, beef, kale, broccoli, carrots,pistachio, walnuts, strawberries, blueberries and grapes sometimes.
Supplements D3, K2, magnesium and turmeric
Other good thing I forgot is that the sleep quality is getting better 7 hour average.
The work increased to 5 hours daily but doing breaks during the day.
So still don’t know what is going to be the final outcome but will continue trying everything I can.

Thanks for keeping in touch
Alex

Thank you for the update, good to hear from you.

Hi Rahmba,

Last Friday I had my blood work and finally my neutrophils increased to around 1800 since 18 months was always under 1400, everything in the blood work was fine, I am adjusting the D3 supplements because I realized that 2000u daily is not enough but 50k weekly is too much so probably 5000u daily would be my final dose.
Now in the last days I am having redness and pain in my left eye, i did an step back in the diet and eating only meat , walnuts, blueberries and strawberries till I resolve it. My next appointment with the rheumatologist is this Friday and I am going to ask if that is a possible side effect of Enbrel or because enbrel is losing the effectiveness
In the meantime continue fighting

Thanks everyone
Alex

thanks again for the update. I like hearing back from people.

Uveitis is a possible side effect of enbrel just FYI.

Hi Alex

Thanks for the updates! It is good that the mobility gains you made are still there and maintained over time. Sorry to hear about the tinnitus and uveitis. I have mild tinnitus too and read somewhere that lower blood fats and lower blood pressure could potentially make tinnitus symptoms less noticeable. (trying to do that as I had a bit high LDL and blood pressure this year)

From what I read, lower neutrophils might also be a sign of better immune system function. I believe medical researchers look at "NLR" or "Neutrophils-to-Lymphocytes" ratio. NLR<3 is helps with better prognosis in several different diseases. When I did AIP for a sustained period of time I noticed my lymphocytes went up and neutrophils came down, almost to the point I had NLR=1.

Have you tried taking a combined turmeric/boswellia supplement? I find whenever I take boswellia for a few weeks, neck pain goes down from 3-4 to 1-2.

I try eat AIP whenever I can and returned to cooking breakfasts and lunches for the week every weekend, after spending most of the spring and early summer eating all types of restaurant food (including on a Europe vacation).... which I found is no good for my health!! Weight goes up, inflammation goes up. My psoriais broke out in ways I haven't seen for years. So last few months I have been focusing on getting on a better path again. In addition to diet, I try fasting 18 hrs per day and bike 12 miles every Friday afternoon from my office to my home.

My dad has type 2 diabetes and unfortunately had severe COVID-19 2.5 years ago, just weeks before he was supposed to receive a vaccination. Dad was hospitalized and had a few critical days with high-speed oxygen. Fortunately he made it through all that. Although ever since, he had fatigue and deteriorating walking/balancing that got worse with time. Doctors have not found what it is yet and tested for a range of neurological conditions. It might be a combination of diabetes, post-covid, and pinched nerved.
As part of researching how to help him, I found this supplement "ALA" (Alpha Lipoic Acid), which my dad is trying out for neurological improvements.
As I read it could be beneficial for LDL and CRP, I also tried it out myself too.
This far my LDL has gone down and CRP was cut in half just after a couple of weeks of supplementing. It helps make my neck symptoms less noticeable too, similar to the effect of boswellia. In case you would like to try as well, just wanted to share it had been helpful for me!

Sincerely,
Ps Spa