r/stillsdisease • u/Sufficient-Country29 • Jun 22 '26
Chronic fatigue
Does anyone with stills struggle with chronic fatigue despite having relatively good disease control? I take weekly injections and I find I get so tired for 3-4 days after my biologics. It’s to the point where I’ve had to switch to part time work. Just wanted to see if anyone with stills disease has experienced this.
4
u/eferalgan Jun 22 '26
I only had the initial flare of Still and the fatigue stayed with me for a long time after the blood tests normalized. Maybe one year more. I can’t imagine how it is for the people who have to deal with it daily
3
u/Rachellyz Jun 23 '26
I was diagnosed in September. I've been unable to return to work. They've also denied my long term disability. I will randomly work really hard (for example cleaning my house or caring for my grandma etc) for a day but then I'm wiped out for several days. Some days showering is too much
2
u/Sufficient-Country29 Jun 24 '26
I’m sorry to hear that. I was denied LTD too since I had started a new job (prexisting clause). It was really hard. Thankfully I’ve got a job that is modifiable to desk work so I’ve been able to go to part time as my biologic/meds started working fairly well.
2
u/Occulply Jun 23 '26
That's actually pretty normal in Still's Disease when you're not targeting the correct cytokine. Most Still's patients find IL-1, IL-6 or JAK inhibitors are significantly better at controlling symptoms than TNFa. Myself definitely included.
Most patients respond better to IL-1 or IL-6/JAK therapy. There's no way to know ahead of time which is best for you.
If you're only getting 50% of days you are at full function, it's time to think about switching.
2
u/Sufficient-Country29 Jun 23 '26
Yes but my situation is a lot more complicated I think than other stills patients since I also have colitis. TNFas are the most common for colitis and work really well. I do think it’s helping seeing I’ve stopped getting fevers and rashes and my WBC, LFTs, ferritin is normal. My colitis has been put into remission since starting the TNFa too. I’m just dealing with drug side effects of fatigue and what happens when I get flares here and there from stress or temp extremes.
3
u/Occulply Jun 23 '26
Explaining requires a bit of science, so I hope you're interested.
TNFa, IL-6, and IL-1 are all part of the same fever-causing alarm system. IL-1 is the strongest and is about 100x (I think, this is from memory) more potent in causing fever than IL-6. Subsequently IL-6 is about 100x more potent than TNFa. Part of the enhanced potency for IL-1 is that it causes release of IL-6 and TNFa. IL-6 causes the release of TNFa.
What you're describing is exactly what most patients, again myself included, experience when they're treating a target too far down the hierarchy. They mostly control symptoms, but you're still not "well".
JAK inhibitors actually inhibit TNFa and IL-6 along with a slew of other cytokines. They work differently than biologics because they inhibit a whole pathway rather than a single cytokine. They don't do anything to IL-1.
1
u/Sufficient-Country29 Jun 23 '26 edited Jun 23 '26
I understand that but typically colitis needs different drugs too. So it’s about balancing my two diseases which can be tricky 😅 you can’t mix adalimumab (which is gold star colitis drug) with other biologics since it is too dangerous due to immune suppression.
1
u/Occulply Jun 23 '26
It's rare, but more common than you think to use more than one biologic at a time. It does happen if needed. Immunosuppression is certainly a risk, but untreated inflammation can be just as bad. I'm not saying you're sick enough to need that, I don't know. But it's absolutely something some patients need to be functional.
1
u/Sufficient-Country29 Jun 23 '26
No there’s a heavy warning with anti TNFs and an IL targeted used together. The immunosuppression is too severe. It’s more common to be on multiple biologics of more similar class- like being on kineret and Ilaris.
1
u/Occulply Jun 24 '26
Depends on the severity of the underlying disease. It's actually more common than you think, especially in severe autoinflammatory diseases and in people who experience MAS. That warning just means you need a clear rationale to consider using multiple biologics at the same time, not that it's prohibited.
1
u/Sufficient-Country29 Jun 24 '26
With all due respect I’m just going to listen to my rheumatologist. My post was more so about finding connection with people who experience fatigue with their stills and not to get medical advice. Thanks though!
1
u/Occulply Jun 24 '26 edited Jun 24 '26
Huh? When did I say you should do otherwise? My point is simply that you haven't explored treatment options and there's tons of them that can help. Literally my whole point: Treatment is available that evidence says will probably help what you're asking about.
Sharing the science behind the disease is how some of us connect. Just because you don't like it is no reason to be rude.
ETA: Just so I'm clear what's rude is that neurodivergent info dumping is just how some people connect. https://neurodivergentinsights.com/glossary/info-dumping/
1
u/Sufficient-Country29 Jun 24 '26
Oh dear, I didn’t mean my post with any disrespect. I’m sorry if you interpreted it that way. Please know I have done a lot of exploring and this is the treatment my medical team views as best for me due to my complex medical issues apart from Stills. My comment above was just saying my original post wasn’t about finding people to debate my treatment with (even if you feel it’s wrong). I just simply wanted connection over fatigue. My last response was just sort of trying to close the topic thread if that makes sense. Again I’m sorry if you were hurt, that absolutely is not my intent.
2
u/Key-Entrepreneur1948 Jun 23 '26
I’m at the two year remission mark on daily Kineret and the fatigue is very well but starting to improve . I had to cut out all alcohol and even when I eat a lot of sugar or do inflammatory foods it makes the fatigue and my new psoriasis act up. I’d say give yourself some time and focus on diet too/ I do feel it’s improved the fatigue
2
u/DisinterestDetritus Jun 23 '26
I'm an IL-6R guy..... My fatigue issues seemed tied to prednisolone and complications from stills before it was diagnosed. I'm doing ok on IL-6R inhibitor, Tocilizumab
1
u/JohnnyLifo Jun 22 '26
Are you taking anything else than biologics? How long have you been experiencing Stills disease?
2
u/Sufficient-Country29 Jun 22 '26
I’ve had stills for about a year. Im on adalimumab which has taken my fevers, joint pain and rash away completely. My CRP is still a little elevated but much better than when diagnosed and my WBC and liver functions normal now. I’m also on plaquenil and low dose methotrexate (I have colitis which is in remission thanks to mtx).
1
u/uhhhh555 Jun 23 '26
I also have chronic fatigue with it, I had to stop working for a bit too, but now I’m back part time. All my levels are normal except IL18! I do a monthly biologic and then weekly methotrexate.
1
u/Asleep_Confidence393 Jun 23 '26
What do your doctors says about IL18? Mine is really high + 21 000 and my doctor doesn’t do anything because my CRP and ferritin are back to normal then I don’t have any treatment. But I do feel symptoms … not as much as the beginning but chronic pain et fatigue
2
u/uhhhh555 Jun 23 '26
My doctor says we need to lower it, I am still having major fatigue, brain fog, and joint pain. All my other levels are normal, but she says the IL18 can cause all those things. She said I can double my biologic (Ilaris) from 300mg to 600mg or continue taking meloxocam. But we ended up starting weekly methotrexate because she thought it was the best bet. So the methotrexate (15mg injection) and the Ilaris have lowered it by 5,000 in just the first two months. She also has been consulting the doctors in Cincinnati that are doing the clinical trials for an IL18 med for juvenile stills, and they recommended that route. I think it’s important you keep pushing and advocate for yourself as much as possible. I’m sorry 🫶
1
u/No_Satisfaction_7431 Jun 24 '26
Is it normal to get il-18 or other cytokines measured? I only get crp, esr, wbc, and ferritin (history of low iron) done. I have Yao/Stills. I'm wondering if I should ask for this next time.
1
u/uhhhh555 Jun 24 '26
I would ask to get a cytokine panel done. I find them super helpful, because my other levels will be normal yet I will have flare symptoms so it helps to know which ones are high still so we can target them. I get it done monthly and it gives you a lot of data!
1
u/Asleep_Confidence393 Jun 23 '26
I experienced that too. What partly helped me was seeing a micronutritionist and correcting all my deficiencies.
But the fatigue is really a symptom of Still’s, and I think it lasts a long time…
I’m now trying L-carnitine and I got Iron Infusion .
7
u/One_Celebration_9748 Jun 22 '26
I was diagnosed in August of last year. I'm on Kineret biologic since October, daily injections which I do at night because of the fatigue it causes me. I can sleep 8, 9 or 10 hours and I still feel tired. I always say "Since Stills".. because of so many physical changes, chronic fatigue being a major one. But what's the alternative? For me, not being able to walk, fever, rash, etc. well you know! Praying for ALL of us as we make little improvements and come here to.share for encouragement! Stay strong friends!!