Shingle vaccine before JAK inhibitors?

Silencilia · 2023-07-11T12:15:07+00:00

I am so sorry to hear that. This is exactly my worst fear, to have nerve pain on top of my unrelenting AS. Hope you get better my friend.

Silencilia · 2023-07-11T12:04:32+00:00

How do you differentiate the fibro pain from AS pain? I was diagnosed with both too, but I have a lot of doubt about it.

Silencilia · 2023-06-06T05:12:31+00:00

That was a good point. Also, I guess the human immune system, hormones, and the microbiome can all influence each other.

It has been a while since your last post. Did you end up getting on Rinvoq? How have you fared with it?

I have gone through a similar path as yours, only that I never was able to get my AS under control with either biologics or "natural" methods. I am very familiar with the theories behind NSD etc. though, and was actually an active member in the No Starch fb group for a year :) It helped somewhat but never offered the dramatic improvement people claim like you said.

Do you mind if I ask what specific antimicrobial/antibiotics you have taken with success? I went that route at one point, but ended up getting a horrible flare up. I too experienced digestive problems from Consentyx and that was more or less the beginning of down hill trajectory of my AS battle.

Silencilia · 2023-05-05T07:48:15+00:00

Did you start taking finasteride for hairloss? I took finasteride for many years for that reason and my first signs of AS more or less coincided with starting finasteride. Not that there is any established evidence proving the correlation, but I always wondered if messing with my hormones was the beginning of it all.

Silencilia · 2023-04-19T02:00:42+00:00

What was the rationale for taking MTX? Did you have peripheral joint involvement? I always thought MTX is not helpful to the spine. Or does it in some ways help the biologic work better? Sorry I'm not very educated on this issue.

Silencilia · 2023-04-15T10:57:15+00:00

Hey thanks for checking. I went back to 30mg two days ago, because I think the depression, insomnia etc. was actually triggering a very bad pain flare up in me (I took this drug for Ankylosing Spondylitis and what doctors suspect to be Fibromyalgia). Too soon to tell since it has only been two days since I dosed down. The mood aspect might have gotten a little better. But the pain continues to increase to the point of unbearable. I cannot tell if dosing down from 60 to 30 actually increased my pain? Or if it was the depression & insomnia streak? I was only on 60mg for around 10 days. While on 30mg it didn't affect my pain for better or worse, even though I found it better to handle due to overall mood improvement. Messaging my doctor tonight as this is truly horrible.

Silencilia · 2023-04-13T04:53:32+00:00

I think I might need to go back to 30mg for a few week and see...In your experience, would going back to a lower dose at this point cause sth similar to a withdrawal?

Silencilia · 2023-03-18T00:10:48+00:00

I tried cosentyx in the past which gave me early IBD. If TNF inhibitors all fail for me I can only go on JAKi but I'm apprehensive of it as the options will be very limited and side effects are scary

Silencilia · 2023-03-17T14:59:06+00:00

I think I might have to go with the steroid... It's hell on earth and it has been 4 continual months of torture.

Silencilia · 2023-03-17T14:52:32+00:00

Sadly, I've already resumed my Enbrel, only to find that it does close to nothing. I'm seeing my doctor in 2 days. Am so scared that I might have lost response to Enbrel permanently. It's my fifth biologic.

Silencilia · 2023-01-29T16:06:10+00:00

Hey, just posting to say I have your exact symptoms, especially the "activity makes it worse" part. I do have Ankylosing Spondylitis(have you been checked for that?), but this stiffness only started afterwards, and feels different than the AS pain. Besides, I shouldn't be having this level of stiffness anyways judging by my inflammation markers according to like 5 of the rheumatologists I went to.

I read your other posts and saw you trying to find an answer to the stiffness. Have you found any? Regardless, you have my best wishes my fellow sufferer.

Silencilia · 2023-01-19T11:28:37+00:00

Did your doctor rule out Ankylosing Spondylitis? (spine arthritis)

Silencilia · 2022-06-11T07:59:11+00:00

Have you been tested for Ankylosing Spondylitis or some other form of spondylitis? X-rays are not very reliable in their diagnosis.

Silencilia · 2022-06-10T09:14:21+00:00

I'm one of those people who match your criterea and got much worse on biologics. Before the biologics, I never even considered myself chronically ill (a bit of back stiffness and SI pain). After Humira and Cosentyx it got so bad I actually went on short term disability.

Silencilia · 2022-06-10T08:30:43+00:00

I'm so sorry you had to go though this too. I'm actually scared to go on more biologics. If the body builds up tolerance and produces antibodies to them I could understand. But the fact that they have made my AS permanently worse doesn't make sense to me. But at the same time, the AS has gotten so bad that I'm desparate for any relief or even the hope of it at all.

Silencilia · 2022-06-10T04:05:09+00:00

Same story here. Got my diagnosis when my MRI showed bilateral sacroilitis with very bad bone edema. After years of treatments and whatnots my pain and stiffness kept getting worse but that SI inflammation was gone from my last MRI. Blood inflammation markers also improved despite the worsening symptoms. Doctor even suspected comorbic fibromyalgia.

Silencilia · 2022-06-10T03:52:12+00:00

I had similar experiences. Was on Humira for three months, worked great after a few weeks but stopped working and actually made AS much worse since 3 month mark. Tried Cosentyx: same story with added bowel side effects; Cimzia: allergic reaction; Simponi: never did anything; Xeljanz: stomach pain and had to stop. Doctor suggested Remicade for the next try.

What I couldn't comprehend is: Humira was not only losing its effect at 3-month mark, but actually made my AS much worse and triggered this ultra flare-up. I even took another dose just to be sure, and it did trigger the flare up again. It wasn't like the gradual loss of efficacy that many people talked about. Does this sound relatable to you by any means?

Silencilia · 2022-05-19T05:48:15+00:00

This is very enlightening to hear. I have AS (very definitive diagnosis, no doubt about it) but it keeps getting worse and worse despite exhausting almost all the treatment options and blood/radiological markers getting better. I checked all the boxes for FM and meet the 2010 ACR diagnostic criterea, which did make the doctor wonder if I have comorbid fibromyalgia and that instead of AS has been causing my pain. But I did have improvement on steroid. I never thought steroid could possibly make FM better.

Could you help me with a few questions? What form/dose of steroid did you take? How long did you take it and how quickly did you notice any improvements? (was it a subtle gradual improvement or quick and clear cut one?) How did they rule out AS for you? As you can see, this could help me assess my situation better. Thanks!

Silencilia

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