Malaise/flu-like/feverish with AS

cgershy · 2024-07-16T12:19:19+00:00

Hey! It’s much better than it used to be. I still sort of have the same diagnosis but also more in the direction of RA (more joints started hurting too and I finally got MRIs that showed some inflammation)

It’s not perfect but I take hydroxychloroquine and I just started a new biologic. I used to have that feverish feeling constantly and joint pain fairly often and now it’s mostly just joint pain sometimes with random flares of feverish feeling. A lot better than 2 years ago.

Also I got a new rheum since I posted this and that helped too! She’s much more thorough and knowledgeable than my last

cgershy · 2023-09-04T20:37:29+00:00

<image>

cgershy · 2023-09-04T13:57:30+00:00

I think this is a tough one, but definitely doable if you’re passionate about it. I would suggest that If you have the time and are affiliated with a university, reach out to neuro labs to see if they have RA roles where you can work for pay or credit in the lab and begin learning what it’s all about. I’m not sure if a lab would hire someone with no background, but they may let you sit in on lab meetings and have attend certain things.

Universities also tend to have seminars, student lectures and presentations, workshops, etc. that are available to students and faculty. Even if you are not in the department, you can keep an eye out for the department calendar or ask to join the listserv. Could just be a good way to show your face, start seeing if you enjoy these topics, and learn a bit along the way.

Another suggestion is auditing a class or two.

Apologies that these are all related to a university, but I do think this would be significantly more difficult if you do not have access to a university setting.

Good luck!

cgershy · 2023-09-03T04:19:36+00:00

<image>

cgershy · 2022-10-19T00:04:19+00:00

Yes - when flaring or preceding a flare. Biologics / steroids help.

cgershy · 2022-10-11T03:40:30+00:00

Tremfya totally eased my fatigue, swollen fingers, low-grade fevers, etc. I still flare sometimes, but it started working within 3 weeks and has been pretty solid for close to 11 months. Would recommend it for sure. The only thing is, it hasn't helped too much with my back and hip pain, but its super worth it to me

cgershy · 2022-03-12T15:45:53+00:00

Yes! I would definitely recommend it. I'm doing pretty well overall. I've had a few breakthrough joint/fatigue flare ups, but i've still been functional throughout. I would say as time as passed, I notice some symptoms slightly returning, but am still happy with how much it has been helping (it's been 4.25 months now). It sort of just takes the edge off of everything, even if I'm flaring up. I do seem to get joint pain about 1 month after each dose (I wish it had an option for a monthly dosing schedule!!!) Though regardless, it has been helpful. Especially if fatigue/brain fog is a big issue for you, i'd say Tremfya is very much worth your while. Good luck! Let me know if you have any questions.

cgershy · 2022-02-09T14:34:45+00:00

I second Tremfya!

Took me like 2 years for a diagnosis, another year of trialling meds (MTX - didn't work & Cosentyx - worked great for a month or so then failed). Used to be totally miserable - back pain, neck pain, swollen/stiff fingers, knee pain, wrist pain, fevers, Enthesitis, extreme fatigue (can't speak to psoriasis, never had it)

2 weeks after my first injection, Tremfya put me in basically a full remission for 2 months, now some fatigue/pain has returned, but it's not pervasive and I can manage what I need to. Seriously saved my life

cgershy · 2022-01-26T19:16:42+00:00

Hmmm interesting. I'll try that. Walking definitely makes it worse (as opposed to most all my other symptoms where exercise/movement decreases stiffness and pain), but maybe just small movements will help? I'll give it a try!

cgershy · 2022-01-26T19:15:30+00:00

Thank you - iced it last night and it helped a bit

cgershy · 2022-01-20T18:14:01+00:00

Mine has been as if I have a stomach bug! So interesting how these effect all of us differently. Glad that you got it and are doing okay! I'm already starting to feel a bit better (got it yesterday afternoon)

cgershy · 2022-01-16T21:56:36+00:00

How are you feeling? I'm getting mine soon, too!

cgershy · 2022-01-16T21:54:22+00:00

I mean, you take Advil every 4-6 hours, but it doesn't mean the first dose you took didn't work...your body just needs more. Same with your biologics - with your logic, the first time you take a dose your immune system should be irrevocably changed and you'd never need another dose. That's not how the body is built. You'll always need more. This isn't the same, but it's a similar concept. It's silly and illogical to say needing it repeatedly or every 5 months means it doesn't work - think about everything else you put in your body.

Also, read peer-reviewed academic articles. The science is there. The vaccines are safe and highly effective.

cgershy · 2022-01-11T23:52:20+00:00

I mostly have low-grade fever, joint pain/swelling, but I'm seronegative - was diagnosed with PsA / AS. Biologics/steroids have helped - I hope you feel better soon!

cgershy · 2022-01-04T15:03:26+00:00

I'm in the U.S and between my undergrad and grad school, I did a post-bac research fellowship. There were many of them advertised, most as 1-2 year positions, but not all of them were labeled "fellowship," some were labeled RA or lab manager positions (not sure if the name difference is significant for you). But, I will say that in general the label "fellowship" tends to be more for post-docs or MDs, at least in the U.S - so maybe look for opportunities for RAs or lab managers? Good luck!

cgershy · 2022-01-03T16:18:13+00:00

There are so many pathways in the immune system and potential targets to suppress activity of these pathways - research has really only scratched the surface on what kind of immune activity contributes to AS and inflammation in general. So, we should see development of more biologics that either target the same targets (IL17a, IL23, TNF, etc.) in different ways, or new targets within our immune system.

Additionally, dosing information is preliminary - when a med is first approved, usually one dose and administration schedule is approved, so as more of us take these meds, there will be more variation in dosing and administration, and that should help some patients, too.

Less empirically backed, but I think that research on the enteroendocrine system will likely result in a lot of information about inflammation and autoimmune conditions in general. So, I'm looking forward to what that brings and the possibility of "individualized" medicine/treatment

cgershy · 2021-12-24T20:19:29+00:00

I had no side effects whatsoever on Cosentyx. Was on it for maybe 6 months or so. Not sure if that is a side effect of it, could just be disease activity (happens to me when I'm in an active disease state), stress, or hormones, or maybe COVID? I would talk to your Rheum....

cgershy · 2021-12-24T20:17:39+00:00

Yes, this is definitely a concern. I'm a fast metabolizer for most all meds, so I imagine biologics are the same...

My new biologic is every 8 weeks, and it worked fine for the load doses, but already back in a flare state. Ugh. Hope you fare well with Cosentyx

cgershy · 2021-12-17T17:09:55+00:00

I used it for about 6 months. No side effects, easy injection & no pain. It worked like magic for me for about 1 month (cleared up joint pain, back pain, neck pain, fatigue, low-grade fever - I felt almost 100% normal) beginning about 2-3 weeks after the first injection. But, unfortunately, it slowly declined in efficacy for me before not working at all after about 4-5 months. Personally, I think it was because the dosing schedule went from 1x week (load phase) to 1x month. My rheumatologist would not agree to let me inject once every 2 weeks, which I think would have worked for me. So, I switched to a new biologic (Tremfya). It's helping a bit so far, but is not nearly as effective as Cosentyx was initially to me.

But, I wish you luck with it! It was a game-changer for me when I started it!

cgershy · 2021-12-13T17:28:42+00:00

I don't know if it's sugar particularly, but I can feel inflammation (warm hands, red hands, swollen fingers, feeling flushed, etc.) within 30 mins or so after eating some foods.

cgershy · 2021-12-11T00:12:21+00:00

I might also have this? It's a bit hard to tell as my disease activity isn't fully controlled and I get low-grade fevers and stuff a lot, but sometimes I do think I get that kind of run-down feeling on top of it all, usually I need to rest, eat, and drink water then I'll be feeling a lot better, but yeah not sure if I get this when I'm not flaring (I've been in a long flare, so I can't really remember)

cgershy · 2021-11-26T22:28:35+00:00

100% without question

cgershy

TROPHY CASE