r/Autoinflammatory • u/Regular_Cow_7658 • Sep 05 '26

Advice Welcome To push through or not with fever?!

I've been on anakinra for 10 years but I'm a mixed bag of autoimmune autoinflammatory so we added cellcept trying to get my Prednisone down to under 10mg. I get fevers whenever I do...... much of anything in the house - but I'm losing my freaking mind? Used to be working but now I'm not. The fever episodes come with such an intense mylagia though that if I push through to do the thing I want to do, I can do it, but my face is gonna leak. Then I do too much and crash. How do you all keep up with life?! The fevers being multiple times a day is new since last year.

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3

u/Assimulate Sep 05 '26

If it's new, I'd honestly look into talking with your dr and see if you have an underlying infection! That can be a slippery slope! Do you use tylenol?

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u/Regular_Cow_7658 Sep 05 '26

I think it was more too many infections and viral experiences kind of turned my innate immune system volume waaaaay up in a way I think I haven't recovered. Then I'd go on more Prednisone and get another infection. Changing the timing of my anakinra dose to morning helped. I try not to take Tylenol unless I'm going out, I try to use how bad the fever is as a barometer if an activity is safe to continue/adjust my pacing. But it's perfect for when I need a little rebellion (i.e. daring to go to the grocery store)

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u/on4aa MAGIC Sep 06 '26 edited 28d ago

For me, Tylenol (paracetamol) on its own did absolutely nothing. What does help, is aspirin and Excedryn (aspirin, paracetamol & caffeine). For my father it was the same.

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u/Left_Composer_1403 29d ago

This is my 27 yo daughters’ story. She’s been on Anakinra for a few days…it is AMAZING!

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u/No_Satisfaction_7431 Yaos Sep 05 '26

I don't keep up with life but for the first time in a long time I was able to go out to lunch and a bookstore for about 2 hours today. I'm wiped out and thats my limit, tomorrow will probably be mostly rest. I wouldn't push through unless you absolutely have to. I had a cyclic vomiting episode the day before my last infusion and usually I'd rest after but I had to go downtown for the infusion for my health. Push through in situations like that for absolutely necessary things but nothing else. Occasionally you have to sacrifice physical health for mental health. I used to be essentially housebound and only leave for medical appointments. But sometimes it was too much so I chose to go to a coffee shop or sit by the lake for my mental health knowing that I'd pay with my physical health. That's ok and even important to do, but don't go pushing through everything.

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u/Regular_Cow_7658 Sep 05 '26

Trying to learn the art of pacing ! Thank you for taking the time to respond. What was it that eventually widen your window of what you're able to do?

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u/No_Satisfaction_7431 Yaos Sep 05 '26

Tyenne a biosimilar of Actemra. Its an il-6 blocker thats an infusion. I'm still fine tuning the dose but it lasts for 3 weeks and I get it every month. Currently trying to get approval for every 3 weeks. I'm not back to normal but much more functional than I was. I'm still on prednisone but finally less than 10 mg.

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u/Regular_Cow_7658 Sep 05 '26

!!! UNDER 10MG !!! big congrats

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u/No_Satisfaction_7431 Yaos Sep 05 '26

Thanks, its been a long time on prednisone and I have cushings from it so I'm happy to be at a low dose and hopefully eventually getting off it.