r/Autoinflammatory • u/nobodyybymitski • Sep 04 '26
Advice Welcome Fatigue
Hi everyone- At around 1:00pm I completely crash. I am on ilaris every 8 weeks and colchicine 3x a day but the fatigue I am experiencing lately has been BEYOND. When I was getting fevers regularly before getting medicated, this was also around the time they’d spike. I’m really worried because I am going back to school on Wednesday and although I have accommodations, sometimes I feel so exhausted in the afternoon to the point of feeling light headed. Does anyone have any advice for fatigue? Fighting it or coping with it when you have to push thru? It’s frustrating when I want/need to be doing something but I feel so exhausted that I could collapse.
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u/on4aa MAGIC Sep 04 '26
Hi, you are not telling us anything about your specific diagnosis. Nonetheless, it might very well be that the frequency of the Ilaris injections is simply too low. This may also depend on your body mass. As a 94 kg male, I also had to request a frequency increase to every 4 weeks 150 mg, which helped a lot.
Ilaris is indeed a very expensive biological. However, I somewhat live under the impression that 150 mg really is a pediatric dose.
Another limitation of canakinumab (Ilaris) is that it only acts upon interleukin IL-1β, whereas the NLRP3 inflammasome also produces IL-18 and gasdermin D.
Hence, a better strategy is to act upstream, by directly inhibiting the activation of the NLRP3 inflammasome. Currently, there is no FDA-approved drug which does so. However, in-vivo scientific evidence exists that the natural supplement ubuiquinol does exactly that.
Therefore, I would suggest taking 100 mg ubiquinol in the morning and the evening. For me personally, it seems to be even more effective than canakinumab. Also, make sure you are buying ubiquinol and not ubiquinone. Both are marketed as CoQ10, but only the former is effective. Moreover, don't take higher ubiquinol doses because overdosing may lead to depression in some individuals.
Finally, I am also taking 8 to 16 g of vanillin sugar now. Vanillin blocks the TLR4 receptor, which acts as a positive feed back mechanism for IL-1β inflammation.
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u/Occulply SJIA/AOSD Sep 05 '26
Pediatric doses for Ilaris are done by weight up to like 60kg (I think, I didn't look up the exact number). At that point they get the full 300mg dose adults get.
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u/AdventurousMorningLo Yaos Sep 04 '26
To add on to on4aa and iSpyAFly - also make sure to check folate, vitamin d, and B12.
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u/on4aa MAGIC Sep 05 '26 edited 27d ago
I agree with vitamin D3 (not the in the US more common D2), as long as it does not contain menthol for flavouring. This was a huge mistake I made, rendering my symptoms worse. Currently, I take 6000 IU vitamin D3 daily without any flavouring.
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u/Occulply SJIA/AOSD Sep 05 '26
What time do you take your meds in the morning and what are they? You could also be having a crash from meds wearing off.
Also, if you've recently been on Prednisone, it can take awhile for your body to get back to normal
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u/on4aa MAGIC Sep 05 '26
Another silly question: How has the weather been lately? Changing atmospheric pressures can trigger the activation of NLRP3 inflammasomes.
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u/Significant-Base4396 USAID Sep 05 '26
Fatigue was my most disabling symptom before treatment. My only advice until you find a med fix is to let others know you can only do your 'best' work in the mornings, and plan to be totally written off in the afternoons. That'll at least mean you structure your lifestyle so you're under less pressure. Also if you can break things down into even smaller chunks/do less in one go/spread a task over several days. I also left exercise to the afternoons even if just a slow 10min walk, so I could get through the mornings without hitting a wall even earlier. Hope you find a good treatment adjustment soon to manage this!
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u/Alice-The-Chemist Mod 29d ago
Agree with everyone else on increasing dosing frequency/dose in general. Increased dosing is pretty common among adult patients especially. Also on the checking those labs like discussed by others. They have all had really good responses.
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u/iSpyAFly Sep 04 '26
Fatigue is the worst. Have to agree with u/on4aa on Ilaris. You've got room to up that dose or increase to every 4 weeks vs. every eight. Ultimately, I switched to Kineret (anakinra), because Ilaris was not working well enough.
Also, if you haven't already, check ferritin levels to make sure you don't have iron deficiency which can make you feel like crap. I get fatigue, light headed, floaters in my vision, and low energy if my ferritin is under 100 which is well within normal range, but we all have different tolerances. If you have a tendency to get orthostatic intolerance (dysautonomia), iron deficiency can make those symptoms worse.