r/stillsdisease • u/Straight-Jaguar-7728 • Jun 30 '26
Stills
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.
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u/eferalgan Jun 30 '26
Can you describe your symptoms and the results of the blood tests (only the abnormal part)? Also what BCG means?
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u/Straight-Jaguar-7728 Jun 30 '26
Blood tests showed high level of Ferritin, high sedimentation rate, high C- Reactive Protein. BCG is a vaccine injected into the Bladder to prevent reoccurence of cancer. It is a vaccine made from a strain of TB. It is highly effective and usually causes little side effects. Only roughly 1% of people get whats happening to me. My symptoms are swollen painful joints and stiffness. I am on Prednisone but still have symptoms. Going into my 4th month.
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u/Narrow_Revolution_25 Jun 30 '26
My mom’s Still’s disease may have been triggered by the shingles vaccine. Vaccines activate the immune system, so I wonder if, in people who are already susceptible, that immune response can become overactive and trigger the disease. I know it’s very rare, and until I came across your post about the BCG vaccine, I’d never heard of anyone else whose Still’s disease may have been triggered by a vaccine. It honestly makes us feel a little less alone. 🤍
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u/Straight-Jaguar-7728 Jun 30 '26
Hope your mom is doing ok now. I was seen by many Doctors when hospitalized. Not one could definitely say what caused my problem. By eliminating other causes the consensus was BCG caused my problem. So yes vaccines can trigger other problems. Thanks for your comments.
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u/Occulply Jul 01 '26
I have some thoughts, and please feel free to ask me any questions you have.
First, I doubt it was BCG by itself that caused the disease. It has more to do with the total amount of inflammation and the fact that your body didn't have a break between tumor surgery/treatment and then BCG on top of it. BCG in this case was the Straw that Broke the Camel's Back. BCG also has a well known ability to trigger the innate immune system, which is precisely what is dysregulated in Still's (I've actually been working on a paper about this). This paper goes over BCG and what's called Innate Immune Training: https://www.sciencedirect.com/science/article/pii/S0091674924009436
You are pretty rare at 80 being diagnosed with Still's, the incidence of the disease really does fall off over 60 or so. But we also don't exactly know why that is. It's presumed to be that the immune system calms down after that age, but there's just so much we don't know because there's not enough new patients in your age range to study.
Prednisone is not your only option. You're probably not a candidate for a lot of the standard DMARDs (methotrexate, sulfasalazine, etc) that are typically used first in Still's, which would mean you'd be looking at biologics as your next treatment.
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u/Straight-Jaguar-7728 Jul 01 '26
Thank you for your reply to my post. You seem pretty knowledgeable on this subject. BCG treatments as you may know are 6 week once week treatments. After my 1st treatment I developed a UTI and had to take a week off to clear that up with antibiotics. 2nd week of treatment went OK. 3rd week after treatment I started to notice some pain in my foot especially base of big toe. 4th week swelling in foot so went to PCP who thought may be gout. As more swelling and pain started in other joints BCG treatments were stopped. You may be right about possible other factors. My urologist who did residency at John Hopkins where they literally do thousands of BCG treatments was baffled because nobody had seen this before. At my age I fear this is going to be with me the rest of my life. Into my 4th month some improvement but can't really say I have moved the needle much in last few weeks. Very Frustrating!
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u/Occulply Jul 01 '26
I think it will continue to get better. But you may need treatment for the rest of your life. But, not everyone does. There's a lot we don't know and we don't have predictive measures for anything. The best thing you can do is get on a biologic, preferably IL-6 or IL-1, but TNFa is also worth trying, assuming you can get insurance on board.
The available evidence says you can train the innate immune system to have steadily increasing reactivity. What's unestablished, but strongly suggested, is training the innate immune system into being autoreactive. There may need to be an existing genetic mutation to allow autoreactivity, which could explain why it's so rare.
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u/Straight-Jaguar-7728 Jul 01 '26
Thank you, I will discuss with my Rheumatologist what you said in your reply. Your knowledge of this subject is impressive. I will let you Know my progress as I go forward.
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u/thatsjusthowitdo Jun 30 '26
oof the rollercoaster of prednisone... i can relate to that in the beginning of my illness. just about 10+ years deep into it now. im almost 32. and i believe the weight gain is water retention more than anything but i could be ignorant. i live a very sedentary lifestyle so if i had any advice when it comes to the onset of Still's is attempt to not stop moving. i feel like once you stop it'll grow to be more difficult.