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Re: Occipital-atlas-axis joints fused or not
Alex_j01 #284971 03/21/22 02:53 AM
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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


41 yo, main problem stiffness and pain in the neck since 33 and always be treated as osteoarthritis till reach 41 years old
Hla-b27 negative, CRP y ESR always normal till 41 yo and 6 months when spike, sulfasalazina and indomethacin from July 2021 till December 2022, enbrel from February 2022, nsd and autoinmune paleo diet from January 2022
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #284972 03/29/22 03:16 AM
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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


Background: 32 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #284973 03/31/22 03:12 PM
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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


41 yo, main problem stiffness and pain in the neck since 33 and always be treated as osteoarthritis till reach 41 years old
Hla-b27 negative, CRP y ESR always normal till 41 yo and 6 months when spike, sulfasalazina and indomethacin from July 2021 till December 2022, enbrel from February 2022, nsd and autoinmune paleo diet from January 2022
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #284979 04/05/22 04:53 AM
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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)

Last edited by PsSpa_M_1989; 04/05/22 04:57 AM.

Background: 32 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #284988 04/13/22 12:20 PM
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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

Last edited by Alex_j01; 04/13/22 01:56 PM.

41 yo, main problem stiffness and pain in the neck since 33 and always be treated as osteoarthritis till reach 41 years old
Hla-b27 negative, CRP y ESR always normal till 41 yo and 6 months when spike, sulfasalazina and indomethacin from July 2021 till December 2022, enbrel from February 2022, nsd and autoinmune paleo diet from January 2022
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #284991 04/16/22 02:36 PM
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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.

Last edited by Alex_j01; 04/16/22 05:40 PM.

41 yo, main problem stiffness and pain in the neck since 33 and always be treated as osteoarthritis till reach 41 years old
Hla-b27 negative, CRP y ESR always normal till 41 yo and 6 months when spike, sulfasalazina and indomethacin from July 2021 till December 2022, enbrel from February 2022, nsd and autoinmune paleo diet from January 2022
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #285001 05/21/22 03:28 AM
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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)

Last edited by PsSpa_M_1989; 05/21/22 03:29 AM.

Background: 32 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #285002 05/24/22 03:17 PM
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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


41 yo, main problem stiffness and pain in the neck since 33 and always be treated as osteoarthritis till reach 41 years old
Hla-b27 negative, CRP y ESR always normal till 41 yo and 6 months when spike, sulfasalazina and indomethacin from July 2021 till December 2022, enbrel from February 2022, nsd and autoinmune paleo diet from January 2022
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #285005 06/05/22 03:37 AM
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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

Last edited by PsSpa_M_1989; 06/05/22 03:40 AM.

Background: 32 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
Re: Occipital-atlas-axis joints fused or not
Alex_j01 #285006 06/06/22 07:19 PM
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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.


41 yo, main problem stiffness and pain in the neck since 33 and always be treated as osteoarthritis till reach 41 years old
Hla-b27 negative, CRP y ESR always normal till 41 yo and 6 months when spike, sulfasalazina and indomethacin from July 2021 till December 2022, enbrel from February 2022, nsd and autoinmune paleo diet from January 2022
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