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#519606 - 05/01/19 04:20 PM In need of guidance and advice on how to treat AS.
Caturday Offline
New_Member

Registered: 01/29/19
Posts: 5
So apparently I have had Psoriatic Arthritis (axial involvement),official diagnosis... since I was about 21 or 22 years of age i'm 31 now.....I have experienced very little pain but some stiffness here and there mostly around my neck...

My SI joints show extremely mild erosion back from x-rays (bilateral damage so sacrolitis)... in November 2018 I was recommended to take some NSAIDs but I never took them due to fear of getting ulcers in my stomach long term. My rheumy was a bit shocked I had damage to the SI joints perhaps not being in a lot of pain wasn't a big cause of concern?

Even 6 months later I'm not in a lot of pain either but the pain and stiffness is progressing along my shoulders, neck, right second toe, and lower back but it still feels very mild to me as I don't wake up with agonizing stiffness. I only get very stiff if i don't exercise and i sit on a chair for like 12+ hours... and my entire rib cage seems stiff at times but it's not overwhelming. My rheumy recommended I take humira but I was concerned about side effects... went to a dermatologist and I got approved for Cosentyx!

Now I have 2 biologicals to choose from. I'm not sure which one works best for AS long term. I feel like I dropped the ball not getting treatment right away... I wanted to go a more natural route. I cut out starches but i haven't seen the benefits yet. In fact I take nothing for my pain or stiffness but it's been pretty much the same over the past 6 months i'd say it's at a 1 or 2 on most days. I have no uvetis, no numbness, no tingling sensations, stomach issues, but i do have sulfur intolerance to foods though. Only thing is stiffness in my neck that's become constant over the past 2 months.

I have spent a lot of time on the facebook and reddit groups. The facebook groups make me want to cry... it seems like everyone is disabled or dying from comorbidies from this condition. Every post is someone going to the ER or being in unrelenting pain this stuff gets me really depressed... and i'm already a glass half empty type of person with bad anxiety and depression.

The good thing since getting this diagnosis i have been swimming almost everyday... for about an hour and fifteen minutes as vigorous as I can go. I do physical therapy and weight lifting (not too heavy), and i'm stretching everyday. I am now sick because I think I worked out too much sinus infection I planned on starting cosentyx or humira this week but it looks like i'll have to postpone to the following week. I'm not sure if this is something I should be worried about but...

My uncle had severe MS and i'm hlba 27-negative of indian origin. Should I be worried about getting induced MS on humira? The worrysome factor while taking cosentyx is getting IBD too. I wish there were more options for us. I know in the future it will be through the gut microbiome, FMT, and Crispr... FINALLY WE WILL KILL AS TOGETHER!

I do get worried that i'll end up disabled and in a wheel chair when i'm in my 40s or 50s as I know this disease gets aggressive at that age if not treated properly. Seems like the body just can't handle the stress and goes nuts on us. I wish I caught this when I had no changes to my SI joints even though they are very very mild to the point that the radiologist thought it was normal lol. Luckily my spine is totally fine as are my hands, feet, and left shoulder.

I was officially diagnosed with psoriatic arthritis with axial involvement. Is this the same as AS or is it different? Does PsA + axial involvement = less radiographical damage and severity compared to regular AS? I have psoriasis too had it since i was 11 its severe now covering about 20% of my body, and the patches on my back and SI joint that's where the inflammation is... so 20 years of psoriasis is something that I need to deal with too but it's mainly plaque and it doesn't itch or burn at all.

I have an mthfr issues too so i can't eat foods high in sulfur too much and i'm an fut 2-nonsecretor apparently according to my genetic snps. So I guess my body doesn't get rid of toxins well?

I eat a lot of coconut flour for fiber I don't think coconut has starch but i'm not sure. I do take curaphen and quarcetin as a supplement but i don't think it has starch either....

Is there anyone on here who had similar issues as me and mthfr issues too that has tried diet, gut microbiome analysis, genetic snps, or traditional meds that worked or did not work for you? Any information or tips would be greatly appreciated thank you all!

So I hope it's not too late to change the trajectory of my disease. I know i'm at the mid point due to confirmed x-ray damage of both SI joints I wish I caught this sooner.. I guess i'm at the mid point now of this disease.





Edited by Caturday (05/01/19 04:38 PM)

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#519622 - 05/08/19 02:26 PM Re: In need of guidance and advice on how to treat AS. [Re: Caturday]
Dotyisle Offline


Registered: 03/07/02
Posts: 9422
Loc: Rosario, Argentina
Hello Caturday,

I do not think your diagnosis is the same as AS.. but I am not a doctor either.

My father had AS, doctor told him he would be in wheel chair by age of 50.. never happened. He had a pretty good life living with AS for 40+ years. He was entirely fused and had all the classic symptoms other than be hunched (emphasized posture so fuzzed straight).

I have lived with AS now for half my life... 25 years and still doing well.

Take one day at a time and do what you can. Chronic disease is a constant battle and do best each day... my dad always told me cannot worry about the future, it will come either way.

Even if you do not have AS, treatments may be similar. Do what you feel comfortable with. Even if no starch diet does not work, I think eating healthy helps everyone... I would eliminate processed foods, junk foods/sodas, limit alcohol. I would emphasize veggies and fruits... if eating grains, only whole grains and introduce probiotic foods.

For eating I live under 2 mottos nows... eat to live and not live to eat and garbage in-garbage out.

Best to you on finding what works for you, will be a personal decision. For me azulfadine worked very well for 7 years (sulfur based you appear to have issues with).. but afterwards became too much for liver. Since then I focus on diet, stretching and short fasts and occasional pain pill if over due it.

Keep on kicking,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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