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

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