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

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