r/stillsdisease

I am a 80 yr old male who was diagnosed with bladder cancer. Luckily it was non-invasive. Tumor was successfully removed and after recovery period on started on BCG treatment to prevent reoccurence. I had to stop treatment because I developed pain and swelling in my ankles , knees and wrist. Doctors were baffled and I was treated for gout, cellulitis, Lyme disease etc. My condition worsened to the point I was hospitalized for 5 days. Nobody could figure out what I had. Because of blood test markers they thought either Reactive Arthritis or Stills Disease. Treatment for both is basically the same, Prednisone. My Rheumatologist feels it's Stills caused by BCG treatments. I started on the Prednisone tapering at 60mg. When I reached 10mg I had to be bumped back to 20mg because of the pain. I am now at 20mg tapering down to 5mg. Not sure where I am going and that has me worried. Doctors have never seen a case like mine. Stills is usually a disease contacted by much younger people. Also typically Prednisone causes weight gain I have lost a lot of weight. My eating habits and appetite have not changed. If anything I am eating more calories than normal. This also has my doctor baffled. Personally getting discouraged and think rest of my life will be bothered by this disease. I was a very active 80yr going to the gym 5 days a week and walking 4 miles a day. I think those days are over for me. My condition is going into its 4th month. Any comments or recommendations would be greatly appreciated. Thanks to all.

Has anyone here experienced seizures due to a flare here before?

I have had myoclonic seizures for more than 1,5 years now. They mostly happen in the evening/night every few days and it's mostly my right arm or leg that starts shaking.

During my autoinflammatory flares they get severely worse and sometimes I get flares that almost exclusively feel like neuroinflammation with "mild" other symptoms.

I recently had a flare that lasted 3 days where my right arm and right side of the face were spasming every few seconds. I went to the ER and laid in a treatment room for 8 hours and had 2 more severe seizure there where the whole right side of my body started violently shaking for a few minutes and my heart rate elevated to 160+ (it was the first time a seizure got so severe).

Thankfully my rheumatologist sent me to another hospital and he suspended that I had encephalitis.
The test there were inconclusive but thankfully ruled out encephalitis but l am treated for frontal lobe epilepsy with focal aware/ myoclonic seizures right now.
I am really struggling to find more information about the connection between seizures and autoinflammatory diseases.

Sorry for posting here again I accidentally deleted my post.

I was on cortisone for 8 months, and they tapered me off it gradually because it was exhausting for me. Instead, they prescribed Methotrexate injections; I started with 10 mg, then 8 mg, and now I am on 6 mg. This July (next month), I will have been on Methotrexate for a full year.

However, it is currently causing me a lot of fatigue. I constantly experience diarrhea, stomach pain, and a lack of energy (feeling sluggish/lethargic), and I catch illnesses and infections very quickly.

I am worried about telling my doctor about these symptoms because I'm afraid they might put me back on cortisone, or do nothing and just tell me to tolerate it.

Note: I am definitely taking my vitamins alongside it, including Folic Acid, Omega-3, and Vitamin D."

Just as the title says, my partner has AOSD and is being forced to try daily injection Anakinra before he is allowed to try the FDA approved once monthly Ilaris injection.

He’s been on Prednisone for 6 months now (currently 40mg) and that is doing a number on his body. They made him try Methotrexate as a first attempt at treatment and that did NOT work for him. It resulted in elevated liver enzymes. He’s continued on just Prednisone while we worked to try and get approvals on next steps.

So we asked his Rheumatologist if he could try Ilaris and because of the weird system our medical
Provider has set up (Kaiser) they are making him try Anakinra first. We are grateful to FINALLY be trying a biologic but really wish we had more say in what he could try next. I mean, Ilaris is FDA approved to treat AOSD and it’s a once monthly injection. Seems like a no-brainer to me what he should be trying next. It’s frustrating.

Has anyone else tried both Anakinra and Ilaris and have feedback to share? I’m curious as we take this next step on his healing journey. Wishing you all well!

Hi! After 2 years of flare ups and ER visits I was diagnosed with AOSD in July 2025 at 21 years old. I was given prednisone and slowly weened off of it as I started monthly ilaris injections. The ilaris injections would work at first but by the end of the month and about a week before my next injection the full force of AOSD would come back. This happened every month I was on ilaris even after increasing the dose multiple times. I was also told to try small amounts of prednisone when the stills symptoms start appearing again before my next injection but it wasn’t very helpful.

By January, even with the injection, for the full month I had stills symptoms. Fevers, muscle aches, extreme fatigue, complete loss of appetite, etc. So by March, my Rheumatologist switched me to Actemra infusions bi-weekly. The infusions have been working perfectly for the Stills symptoms no fevers or anything and for the most part I’ve been living life normally again.

But I’ve noticed many new symptoms after starting Actemra and was wondering if anyone can relate because my rheumatologist makes it seem like it’s unrelated but the timing is just too much of a coincidence for me to believe that.

The week after my first infusion I got a rash on my face (different from stills rash) almost looks like rosacea and it covers my cheeks, nose, and does a circle around my mouth. It is now the end of June and this rash has not gone away. I’ve tried hydrocortisone, Acne creams (Benzoyl peroxide), antibiotic creams, moisturizer twice a day, nothing works. It’s kind of embarrassing, I have people ask me weekly what’s wrong with my face.

Another symptom that began week after I started actemra was stomach issues. Almost anything I eat does not sit well (constipation/ diarrhea/ vomiting) I notice this most when I eat fruits, salads, and red meats so I try to avoid these things but honestly I have these issues everyday still. I am actually writing this because I just vomited my dinner, and I know symptoms aren’t as bad as the stills one but I just wish I could feel normal and fine. (Went to GI for this they ran tests and said everything looked fine)

Lastly, I get like itch attacks I will be completely fine and then suddenly I get two hours of like full body non-stop itching. The itching causes me to rash up especially my hands and legs. Nothing works to stop this no itching creams or Benadryll or hydrocortisone, literally nothing I kind of just cry, strip naked and itch while waiting for it to end. I also get like weird dark marks for a few weeks at a time I had some on one of my knuckles, then my elbow, now under my armpit, and on the side of my ribs, I can’t find anything about what this is online it almost looks like scars, but I’ve never been cut in these places and it goes away within weeks.

I haven’t seen anyone talk about actemra symptoms so please let me know if anyone can relate to this. None of these symptoms appeared until immediately after starting actemra infusions.

Thank you :)

I got diagnosed with this in 2010 as a child and was told back then there was a significant chance I'd relapse either with Stills or Lupus and a small chance I'd develop leukemia or lymphoma.

Well after ruling our Lupus and AS because of increasingly worse joint pain and neurological symptoms, my new rheumatologist said it's Stills Disease and because it's systemic it can imitate MS.

I just started 15mg of methotrexate weekly as I didn't respond at all to prednisone and will probably be going on anakinra or Actemra but my doctor might try IVIG to reduce my need for prednisone and NSAIDs because this has attacked my kidneys that I've had blood in my urine since at least 2015.

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.

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

Does anyone take methotrexate? What has your experience been like? I’m honestly a little nervous because of all the possible side effects.
Also, does anyone get really intense itching? It almost feels like an internal itch that you can’t reach. If you’ve experienced this, what helped?
Ty 🫶

I just need to vent a bit, and I figured this Reddit page would be my safe space. 💙 After 10 years on ciclosporin (and trying methotrexate, Tocilizumab, and anakinra), it's just not working like it used to.

It's literally been a decade since my diagnosis, and now I have to go back to trying biologics, even though I'm terrified of another anaphylactic reaction 🫠

I'm just so tired of going through that whole cycle again, wondering if it'll work or make things worse.

Plus, over the years, my TMJ got damaged (had an arthroscopy for it), and my wrists and finger joints are always in pain and showing bone changes. Now, with Prednisone, my blood pressure is out of control, causing palpitations, which is also triggering my anxiety and nerve pain from when I had shingles, making me start anxiety meds, and it hasn't been right for over a month. I'm just waiting for my new medicine (Sarilumab) to arrive and have no idea how I'll react.

Even though I have my husband and family supporting me, anyone in this group knows how tough this is, not just physically but emotionally and mentally. It just feels like I'm back to square one. I was hoping to start family planning soon, but now I have to delay this until I feel okay, but I just feel kind of down about it. 😞

I'm hoping to get through this again, but I just needed to get it off my chest. I feel so mentally tired and drained and have survivor's guilt with all this. Especially with taking so much time off work i just feel so out of place and guilty for being sick. I just hope this medicine works and helps me stabilise again.

Been sick since March 2025, three flares, months of high-dose prednisone with terrible side effects.
My IL-18 is at 21,458 pg/mL (normal is under 358) 60 times the upper limit. My SAA (serum amyloid A) is at 19.10 mg/L (normal under 6) over 3 times the upper limit. Yet my doctors keep telling me my bloodwork is ‘reassuring’ because my CRP is normal.
I have arthritis confirmed on ultrasound, a recurring cervical lymph node, diffuse muscle and joint pain and I’ve been told it’s post-traumatic stress. One doctor even toeven told me ‘everyone gets swollen lymph nodes sometimes, even me.’
I’m exhausted, I work 11-hour days as a physiotherapist while barely being able to move, and I feel like I have to do my own research just to be taken seriously.
Has anyone else experienced this disconnect between symptoms and ‘normal’ standard bloodwork? How long did it take you to get the right treatment? Did anyone fight for an IL-18 test specifically?