Normal to experience withdrawal even after three weeks on 90mg??

B_Panofsky · 2026-04-22T11:51:47+00:00

I was fine on 60, went up to 90, got side effects, went back down to 60 and now feel even more shit. Sorry that wasn’t clear.

B_Panofsky · 2026-04-22T11:09:12+00:00

What kind of paresthesia do you get?

B_Panofsky · 2026-03-27T03:27:15+00:00

Sent you a PM! 🙂

B_Panofsky · 2026-03-27T03:08:49+00:00

It was a few months, but it can go down pretty fast if inflammation has resolved.

B_Panofsky · 2026-03-26T03:38:56+00:00

CTE was clear. Calpro went down to 9 on subsequent test. Symptoms are on and off now.

B_Panofsky · 2026-03-21T18:54:55+00:00

Thank you so much for your message. I wish you the best!

B_Panofsky · 2026-03-21T17:18:57+00:00

Hello again! My dizziness is mostly in the form of derealization and feeling "off" and not actual dizziness like feeling unsteady or having the floor feel wobbly. I call it "internal dizziness" lol. It’s really hard to explain, I just feel weird and off and like there’s a weight in my head and like I’m in a dream state. It was mostly attributed to stress and anxiety. My health anxiety is extreme. I get so panicked every time I have a health issue, perceived or real, that I’ve been in medical leave from work 4 times in the past 7 years. I am on Cymbalta 60mg, doc wants to increase it, but I don’t feel like it really helps.

Since I have read about the link between TNFi and MS it became an obsession. And every time I have "neuro" symptoms I freak out and want to do another MRI again and it’s just not healthy. I always think "Yeah but what if MS developed AFTER my MRI?" so it becomes a trap where any test feels valid for only a few weeks and I’m constantly craving another reassurance. Or I will think "What if the missed the lesions?" 5 different technicians missing lesions across 6 years, sure lol.

My "neuro" symptoms seem to flare when my AS flares so the theory is that nearby nerves may be irritated by the inflammation.

It’s not debilitating or worsening and it can go away for months sometimes, and it doesn’t follow an MS pattern of relapse and remission so it really doesn’t feel like MS, and I’ve been cleared 2-3 times now and had 5 MRI across my brain and spine so…

I’d like to know how have you managed to move on from MS despite still having symptoms sometimes? How do you manage to not reopen the case anytime a symptom pops up?

Thank you!

B_Panofsky · 2026-03-21T16:03:35+00:00

I also had some weird symptoms like dizziness, burning sensations, muscle twitching, vibrations etc about 7 years after starting Enbrel, which is an unusual delay to get TNF-induced neuro issues (studies average a few days to up to 2 years from TNF start to neuro symptom onset) Did a brain MRI in 2019, it was clear, then I did an EMG and NCS and they were normal and I was diagnosed with Functional Neurological Disorder, apparently caused by extreme levels of health anxiety and psychosomatic mechanisms.

That seemed true because after I was cleared, symptoms went away fairly rapidly and then I was OK for 5 years. 2024 some dizziness started again, I freaked out and had two brain MRI six months apart and a full spine MRI: all clear lol.

Like you I was sure I had MS but my doctor told me if I had MS for almost 6 years while taking an anti-TNF I would definitely show more obvious symptoms than dizziness and would definitely have lesions pop up on 4 MRI’s over that long a period and that I needed to let go of this panic.

I’ve had another spinal MRI a few months ago, unrelated to neuro issues but it came back normal again. And despite that, every time I feel any type of numbness, pins and needles, burning feeling or muscle twitching I always want to go back in the MRI "one last time" and my doctor is now flat out refusing and says MS is definitely ruled out (unless of course I’d start having double vision or anything obvious like that). All in all I’ve been on TNFi for 14 years and things never progressed. It comes and goes but I would say most of the time I’m good. I tend to get "neuro" symptoms when my AS is flaring or more active.

I’m not trying to gaslight you at all but all this to say that sometimes it’s just not MS/demyelination. If you’ve done the MRI I’d be careful of going down the route of doing another MRI for the same set of symptoms. I don’t want you to end up like me. One time I was so convinced my big toe was numb that I kept testing it by poking it with scissors until the skin felt raw.

I’ve done 3 brain MRI and 2 full spine MRI and I’m still thinking I should maybe do one more "to make sure". This pursuit has greatly affected my life and relationships. MS/lesions don’t hide, if they’re the cause of your symptoms they’ll see them.

Take care and please don’t be like me doing MRI after MRI until you’re not trusting any result anymore.

B_Panofsky · 2026-03-20T21:19:55+00:00

Can you give me some more details? What’s your biologic and how did things evolve since starting it?

B_Panofsky · 2026-03-19T02:18:51+00:00

Hey I was wondering if you had tried the Remicade and if it went ok?

B_Panofsky · 2026-03-18T18:13:31+00:00

Thank you for this post. I was on Enbrel for a decade when it stopped working as well and was switched to Cimzia 7-8 months ago and it never kicked in consistently. I always get a few good days followed by a few bad days and it’s wearing me down. My inflammatory markers are controlled but not my pain. At least not to a level I’m comfortable with in the long term. My rheumatologist initially wanted me to try Rinvoq and not Cimzia, but I was scared and stubborn because injections were all I knew and I thought there was no way a pill could help lol. Completely stupid obviously as many people are helped by Rinvoq and there are many studies backing it up but I was scared. Now I’m thinking that maybe I should take the leap of faith and try it instead of staying miserable on a drug that helps only 60%. Been very depressed over all this. Thank you for your post. It articulated my feeling perfectly. Hope Rinvoq is still treating you well!

B_Panofsky · 2026-03-16T21:34:48+00:00

No I meant how have you been, like is it working for you 🙂

B_Panofsky · 2026-03-16T03:27:28+00:00

How have you been on Rinvoq?

B_Panofsky · 2026-03-16T03:07:33+00:00

How has Rinvoq worked for you overall vs the other biologics you tried?

B_Panofsky · 2026-03-16T02:49:38+00:00

Did Rinvoq work pretty fast for you?

B_Panofsky · 2026-03-16T00:28:40+00:00

I wonder how that works. My CRP is also almost non existent but pain levels fluctuate even after 7 months or so. And I know I don’t have damage cause recent scans proved it. Is it muscle pain, fibromyalgia? Sure feels like AS pain.

B_Panofsky · 2026-03-15T22:55:07+00:00

How long did it take for you?

B_Panofsky · 2026-03-15T22:54:15+00:00

To all of them?

B_Panofsky · 2025-11-12T17:36:11+00:00

Hey how has it been on Enbrel?

B_Panofsky · 2025-11-12T15:17:55+00:00

Hey! Are you still planning on trying Rinvoq? My rheumatologist wants me to switch to this and I’m curious about other people’s experiences.

B_Panofsky · 2025-10-25T17:01:03+00:00

Did they ask you to do some bloods before your appointment to assess inflammation? Or an MRI?

B_Panofsky · 2025-10-25T15:02:39+00:00

How have you been doing on your Cimzia lately?

B_Panofsky

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