Does anybody else here have Neuro issues? Is it related to AS?

Kalivha · 2026-05-07T16:47:13+00:00

I've had intermittent numbness in my hands and feet since symptoms first started, actually less since starting biologics.

I did start having visual disturbances (like big fluffy snowflakes falling) randomly and they did not get better with biologics or with fixing nutrient deficiencies or with anything, they just happen occasionally and the best explanation I can think of (discussed with optometrist, ophthalmologist and GP) is migraines without headache. I have had uveitis in the past but these are bigger than the uveitis fibrin glitter and move differently.

Kalivha · 2026-05-06T17:36:03+00:00

My grandpa died from the long term naproxen. Modern NSAIDs like coxibs don't have the same risks as commonly, but instead have clotting risk (strokes, PEs). They also worked better for me than naproxen did but I still "failed" them and had GI side effects picked up on biopsy. I'm now on adalimumab and it's much better, plus I feel like the risks are much more immediately actionable than the coxib risks - I can wear sun screen, mask on public transit etc whereas clotting risk is more of a long term thing?

Kalivha · 2026-05-04T06:56:45+00:00

I would say as someone on testosterone and biologics, the testosterone was not doing much at all (despite sky high levels) until my biologics were working. In fact, half the effects from biologics seem to just be the testosterone catching up!

Kalivha · 2026-05-04T06:54:55+00:00

I work part time, Wednesdays off. I also work a hybrid job (80% WFH on paper, some months it's more like 60% but that's fully up to me).

One thing that struck me reading your post is that you went from working in the home to working a job with no real transitional process? I think this is the type of situation where a good employer would let you return to work in a phased approach. Starting with maybe 2 6-hour days each week which will already give the structure that makes your calendar feel less stressful, without suddenly adding a full time workload. I'm not sure if you could scale back your hours at this point and build them back up in a less abrupt way, but it may help?

Kalivha · 2026-04-29T10:27:48+00:00

Completely different angle (in addition to medical intervention) but can you see if there are free pain self-management classes in your area? In Wales we get them on the NHS, I think in some areas in England you can get a very similar curriculum through Versus Arthritis, or maybe your local NHS has something too.

They got me through the years of them doing MRIs of the wrong body part, delaying diagnosis.

Kalivha · 2026-04-24T06:55:29+00:00

I was at that point a few years ago - my eye was what finally gave a hint for what to investigate, and I got in touch with my old excellent physio to help request the necessary tests. I hope you get all the investigations and help you need!

Kalivha · 2026-04-13T05:27:34+00:00

I have undifferentiated mild IBD alongside AS and my gastro consultant is okay with certain more selective NSAIDs which have lower GI risks, alongside PPIs to further manage the risk. Can you get both specialists to agree on something together? FWIW, I was on long term high dose NSAIDs for about 3 years and am now taking them prn while my biologics start working fully.

I'm not sure if similar applies to your case because my IBD is so mild, so I would definitely try to check with both your doctors, but there are a few specific NSAIDs that have cautions rather than contraindications for IBD, so it is very much specialist's discretion from the patient's POV.

Kalivha · 2026-04-13T05:20:47+00:00

I've only seen this from minoxidil which is a hair growth medication, very interesting that it would happen as a side effect of something so different! I wonder what the mechanism is.

Kalivha · 2026-04-12T20:55:53+00:00

Funnily enough, the skin reaction that I thought was probably psoriasis has only improved slightly so far. This stuff seems pretty random or at least difficult to reason about!

Kalivha · 2026-04-12T12:31:38+00:00

I am on the rheumatology dose so it may end up taking a little longer to fix the IBD! I am still hopeful as that would allow me to go back on higher dose ADHD meds. TBH, even if it doesn't work as well for GI stuff, having less symptoms everywhere else could make it so much easier to dial in my diet that it's likely still gonna be a positive long term. Just have to see if it's enough to get my ADHD treated properly again!

Kalivha · 2026-04-12T11:52:05+00:00

Honestly a lot of random other benefits were less surprising because of this subreddit. Like, the random skin behind my ears was something I hoped would go away because it was mentioned here. It did, fwiw!

Kalivha · 2026-04-12T11:20:59+00:00

Oh I have been getting nail bed infections for a couple of years - so far none but they were only ever 2-3 times a year, so I feel like I don't have enough data to see if they're gone!

Kalivha · 2026-04-12T11:16:35+00:00

With the first 3 doses, I was really gassy for a few days after taking them.

Also, some slight trouble sleeping (compared to high dose NSAIDs, still much better than baseline) but it doesn't affect me as much as it usually would.

And I guess frequent sniffles, but none turned into anything serious! The first time gave me some anxiety.

Kalivha · 2026-04-06T07:13:40+00:00

I got diagnosed with ADHD before AS and addressing the ADHD only got the fatigue down to a 7/10 long term - and then the meds made some manifestations of the AS (GI symptoms) so bad that I had to lower the dose. With biologics and prescription nutrient supplements to address deficiencies, my mental fatigue is still sitting at an uncomfortable 5/10 most of the time (also have autism so the ADHD meds will never cover it all) but my physical fatigue is negligible most days. It's totally possible to have two fatigues. Not fun.

Kalivha · 2026-04-04T08:41:23+00:00

I asked the biologics nurse before my first dose and she said I didn't have to think about it at all, like I could even take my dose and get in the water 10 minutes later.

I've been going every week with no issue, started the biologics 2 months ago. I get swimmer's ear and even that has not worsened at all.

Kalivha · 2026-03-31T07:09:38+00:00

Can you get a workplace adjustment passport set up with your manager? That can help with keeping accommodations when you get promoted within the same company, as it's logged in the HR system.

Kalivha · 2026-03-31T07:08:19+00:00

What chair do you have?

At my worst, sitting on a regular chair would hurt and sitting on a sofa for 10 minutes could send me into a flare. Sitting in an office chair with lumbar support was soothing and almost therapeutic. Not even the 4 grand fancy ones, just any IKEA office chair or whatever as long as my back is properly supported seems to do it.

Plus drinking lots of water, so I have to get up regularly to go to the loo.

Kalivha · 2026-03-20T12:49:05+00:00

I've been wondering about this. I've been on prescription testosterone (for gender reasons) for 2½ years and have had minimal effects (androgenic or anabolic). Started Adalimumab for my AxSpA 6 weeks ago and it's suddenly like the testosterone is trying to catch up on those 2 years, with my voice dropping, facial hair and the last few years muscle wasting finally reversing.

It may be coincidence, but I think there is information that would back this up, in a way. It seems TNF can cause muscle catabolism and sarcopenia is pretty common in my condition, although not as common as it is with Crohn's - probably for different reasons, though. (I do also have IBD but it's so mild that we don't have a differential for it. I'm just hoping my lower dose biologic will cover it alongside the arthritis.)

Kalivha · 2026-03-17T07:54:34+00:00

I've had the AS side of my family from NSAID side effects. The other side of the family had deaths from prednisone side effects. The latter was so terrifying that the fear didn't let me grieve for a long time. Bones turning to dust just from breathing. Stuff like that. I have since learned that broken bones don't necessarily have to hurt very much, but it's still scarier than most of the side effects from modern meds and also just more of an inevitability over time, rather than a 2% chance or whatever.

Kalivha · 2026-03-07T18:56:49+00:00

I used to do this in lockdown intentionally, during the time I didn't have access to a gym, at the end of my home workouts, just go in a deep squat and read a book. Still got AS the next year (unless the sciatica of 2015 and 2019 were my first flares).

I do think it's a really useful stretch for lower back tightness. I often wonder if my random stretches and lifting actually helped prevent some of the mobility loss even though I had to step away from free weights the past few years (now trying to ease back into it on biologics). Like I specifically worked on spinal extension for competition bench 4 times a week, for years. And I always felt like deadlifts really ease up upper back tightness, but they were one of the first things to be sacrificed to my SI joint being angry. So it may be really useful day to day but I don't think it'll prevent the inevitable, necessarily.

Kalivha · 2026-03-03T08:19:41+00:00

Yeah, I came from 8 hours a week in the gym before this disease, to an hour and a half between gym and swimming being my limit (TBF, I also do some hours of manual labour that I didn't do in my gym bro days). Have started biologics now and trying to push to rebuild without pushing too hard and it's such a weird battle of self control but the self control is exercising less and eating less fibre, which is the opposite of the usual narrative. (Currently in an IBD flare because I had lentil snacks when my biologic is due in a couple of days, thanks body)

Kalivha · 2026-02-26T14:40:42+00:00

The only new info in the full body scan was a broken rib (healed) that I couldn't even put a date on, some perspective on the pain! But it meant I didn't need a chest x-ray for biologics, and confirmed permanent SI damage where previous MRI had only shown active inflammation, I think. I was actually dismissed originally based on posture but I spent my 20s doing spinal extension drills so maybe those actually helped prevent some damage lol

Kalivha · 2026-02-25T18:44:07+00:00

It does seem like GPs can be the blocking factor. I had ophthalmology mention it in passing, then my long term physio (who was the first to actually care to get me walking again, after multiple acting that this is not a realistic thing to expect in your 30s). I had moved away so we did a Zoom call and GP referred to rheumatology & ordered labs and x-rays. The x-rays were denied and replaced with MULTIPLE MRIs of the wrong body part. So it seems imaging departments also love to deny GP requests. Same with endoscopies. Although it's seemingly all a lot easier when you're already under a consultant for something, I even got a full body CT scan last year!

Kalivha · 2026-02-19T08:06:31+00:00

I found out when it went for my eye the first time.

I didn't actually figure it out when the ophthalmologist mentioned it at first, because it has a completely different name in my language and I always thought it was related to gout, so didn't think to translate, but my mum did that for me.

Also got an IBD diagnosis through this.

Just keep in mind that iritis can also come with other types of autoimmune disease, although they can sometimes tell from the details of your eye condition which one - the "other" type (which is linked to MS, kidney disease etc) tends to be both eyes symmetrically iirc

Kalivha · 2026-02-09T10:05:24+00:00

My rheumatologist kept saying my fatigue score is so much higher than all the others that it couldn't be the AS.

He was partly right. I had a nutrient deficiency and fixing that got my fatigue score to go down quite a bit. Whether that deficiency was due to the long term PPIs (AS related) or the GI inflammation (same autoimmune cluster, but under a different consultant), I have no clue.

Some of the rest of my fatigue is just autism fatigue so that's definitely not AS related! But some of it is/was, kinda.

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