CLIPPERS: Looking to connect with others

I thought I’d add this article so everyone would get a chance to read about your disease !
https://pmc.ncbi.nlm.nih.gov/articles/PMC10266482/
@vagondeck87 how long were you sick before the doctors were serious? What kind of hospital did you go to?

I to have clippers for two years and live in San Diego. It is a long haul and prednisone is no fun. I have just gotten off of it and have been experiencing being very tired. One can be functional but to be as you were before is asking for a lot. Yes, you can die from it and it is enough for me to be happy to be functional and alive.

Welcome, @jimvosacek! Glad you found Mayo Clinic Connect! No one is happy to get Clippers, but you sound really down. Do you have a good rheumatologist or neurologist? If not, check at a university hospital or a major medical center. That’s where you’ll find the best doctors! I’m starting on year 8 and my biggest problem is keeping positive. Some things are just so hard. But you’ve come to the right place to get help.

Hello Everyone. I wanted to check-in to the forum. I am a 68 yr old diabetic patient living in California diagnosed with CLIPPERS in July '24. Initially spent 5 days in hospital taking steroid treatment. Within 6 months had a relapse. Medication (prednisone) adjusted to 40mg per day. Seems to be working well but side effects include high blood sugar which is hard to control. I exercise every day walking 1.25 miles per day. Willing to share news with any of you.

Robert, I am similarly with Clippers, have been hospitalized twice, prednisone on and off, now on 20 mg daily and stabile. Likely to begin soon to transition from the prednisone to infusions of rituximab. I have found exercises of many types to be most beneficial in getting me back to a state closer to normality. What are your Clippers symptoms? Do you engage in other forms of exercise? Don

Hi,
Just fyi, I was able to wean off Pred within 8 months of my initial hospitalization and I’ve had no relapses (knock on wood). I do try to exercise (I got an Apple Watch and try to close my rings every day) and eat right although the pred left me with a stubborn 5 lbs extra that I can’t seem to shake. I also have a crazy sweet tooth now - always craving desserts. So I really feel for you Robert. When I came off the pred I had A LOT of joint pain for a couple of months. I thought it was permanent but doing very gentle yoga helped a lot and finally it went away. I am currently only on Ruxience - I get an infusion every 6 months. Age 58, female, San Diego. I’m happy to help anyone going through this scary disease. My only remaining symptoms are very slight thankfully. I’m grateful every day to be here.

Hi Jim, I know all about that that dreadful fatigue. For me, it went away after a few months. I also had a lot of joint pain and that also very slowly subsided. Hang in there! I think I’m pretty much back to my pre-CLIPPERS self in most ways. My brain is a bit different, energy runs out a little faster, but all in all, I’m filled with gratitude for being okay.

Thanks for your encouragement. It has been 3 months being off of prednisone and I still have joint pains. I was on prednisone for two years after being released from the hospital. Jim

Hello. my first symptoms involved double vision. I thought it was complications with diabetes. But it wasn't. Then things progressed to difficulty with balance and walking. I started slurring speech after that. This went along for about 3 months. I went to the ER after month 2 and reported that I was perhaps having a stroke. But an MRI revealed that I had no stroke. It was not until I had an MRI with contrast that the diagnosis was made. After hospitalization I returned to almost normal. But then I relapsed after 5 months. I did not know what to expect during a relapse. I expected my vision to double again but it did not. It remained normal. Instead I had trouble with walking and balance. Physical Therapy has helped alot. I do stretching and minor weight training to keep me from losing strength. Prednisone is not good for bone density. I am hoping my neurologist will reduce my dosage. Today I'm at 40mg in the morning only.

Hello Jim

I live in the Los Angeles area. I was wondering if I can ask you a question? What kind of doctor is treating you? I am being treated by a neurologist. I find that scheduling appointments can be a slow process. Somebody recommended that I seek out a doctor that specializes in functional medicine. Any thoughts? I have not experienced the type of fatigue your talking about. But I do in fact have weakness in my legs and knees. I walk 1.25 miles sometimes more daily. Also stretching has helped me.