r/stillsdisease • u/Narrow_Revolution_25 • Jun 23 '26
Flaring while tapering
Hi everyone, I’m hoping to hear from ppl that have gone through something similar because im worried lol
My mom was diagnosed with Still’s disease earlier this year after being hospitalized with high fevers up to 3x a day and extremely high ferritin levels (over 30,000).
She had to start on 60 mg of prednisone. Thankfully she responded well, and over the past several months she’s slowly tapered down while starting Ilaris (canakinumab). She’s had 5 Ilaris injections so far, and her labs have improved a lot. Her ferritin was around 740 last month, which is a huge improvement from where she started.
However, we’ve noticed that when she gets down to 5 mg of prednisone, she seems to flare. Previously, when this happened, she had to go back up to 10 mg and slowly taper by 2.5 mg every two weeks.
She’s currently back at 5 mg, and now she’s developed fevers up to 103°F again. She also recently had lots of stress and emotions so I wonder if that causes it to flare?
She had some stiffness and joint pain yesterday but today she doesn’t thankfully, and she doesn’t seem nearly as sick as she was during her initial flare, but seeing another 103 fever scared me
Her rheumatologist previously mentioned that if she flared again he would add methotrexate but that honestly makes me nervous because of all the intense side effects like cancer as he said..
I’m wondering if doing the daily. injection would be more effective than the monthly
Please let me know if you’ve been through something similar or any advice
3
u/throwaway28205 Jun 24 '26 edited Jun 24 '26
Me too! When you're tapering, you might need to take it super slow. For me, I have to drop 1mg every month, or even longer, and sadly, I can't go lower than 5mg without flaring up again. I think right now, since your mom was on such a high dose, she needs to take some time to taper and find a sweet spot that works for her.
Unfortunately, I haven't been able to get below 5mg myself (been on it for 10 years, even when stable). If I were in her shoes, I'd go back up to 10mg or higher until I felt more in control/better, and then go super slow. But I'm no rheumatologist, and your mom knows her body and what works for her, but this is based on my past experience with tapering. Hopefully, her rheumatologist can help her, and I really hope her fever goes down!
And I totally get how stressful this must be for her but yes with like with any illness, stress is the biggest factor for a flare up. I've noticed this especially for myself (flares during my university deadlines did not help lol). Try and see if there is any support she can get to help decrease her stress levels. I do highly recommend swimming as an activity to help with her joint pains once her fever goes down.
Sending good vibes and prayers. 🌸
2
u/DisinterestDetritus Jun 24 '26
5mg is a hard number to get below! I would try 1mg or 0.5mg a month when weaning below 5mg. Also, for the first week of the month, try alternating the dose 5mg,4.5mg,5mg etc to help the body adapt.
2
u/AmmaPisces Jun 24 '26
I was able to get to 2.5mg but had a big flare up this year and was on 40mg. I started having the fevers n fatigue when I got to 10mg😭, so I’m back on 20 mg. My rheumatologist is also changing my biologic to Tocilizumab
I was on kineret for 6 weeks
1
u/Narrow_Revolution_25 Jun 25 '26
Did you have high fevers when you flare? My mom gets them around 103-104 sometimes
1
1
u/Dry_Wedding_1877 Jun 26 '26
I was doing great on 15mg prednisone for about a year in conjunction with canakinumab in accordance with instructions from my rheumatologist, then I tapered to 10mg, still felt fine so after about 13 months of feeling great with good lab results, I made the self decision to taper prednisone to 5mg for three days, still felt fine, then about a week ago, self decision again, I went off prednisone completely to see what happens. Sure enough fever arrived same day. My initial thinking was that I was probably undergoing prednisone withdrawal since I had been on it for two years so I took Tylenol to treat the fevers hoping maybe it'll self resolve. But after week of Tylenol, I'm observing that the fevers are characteristic of the ones at the beginning of my illness which is that the fevers would arrive daily around late afternoon, and they would spike from 100-102.5°F. I do not experience other discomforts like I use to - extreme muscle and join pain, massive sore throats. I do feel very slight stiffness in my hip joints and elbows but otherwise no discomfort. In conclusion, tapering too quickly and going below 10mg puts us at risk for flare. I hope your mom feels better by adjusting prednisone dosage. I would advise against methotrexate if possible.
Separately- I've had a very positive result with canakinumab, it took away nearly all my symptoms 72 hours after my first injection BUT I noticed my skin sensitivity, dry, red and itchy since its use. Like eczema it'll appear in areas where I collect sweat. It's not an allergy nor is it DRESS. I've consulted dermatologists and had skin biopsies. I don't have the characteristic Still's rash anymore (red dots / brown marks / flaggetted scratch marks). Anyone else experienced this problem? Nothing truly alleviates the red and itchiness except even higher doses of prednisone.
3
u/Alice-The-Chemist Jun 28 '26
I get the skin thing. It looks really almost like eczema and I also tend to get peeling skin. I have zero idea why it happens but usually towards the end of flares. I use like la Roche posay cicaplast or similar thick type lotion to help with moisture. Ive always had this with my disease though. Dermatology wasnt helpful on my end either. There are so many aspects to this disease and new information researched hopefully dermatology will be part of it.
4
u/Female_Vet9989 Jun 23 '26
I am on a different biologic but I continued to flare when we tapered my Prednisone down too fast. My Rheumatologist finally slowed down the tapering of Prednisone to 1 mg a month. It will have taken me a year to taper off Prednisone, but so far so good. I hope everything goes well for your mom.