CLIPPERS: Looking to connect with others

I ended up in an emergency room two weeks ago with inflammation on my brain. They did an MRi again and they do believe now that I do have Clippers Disease. I may have relapsed over too low of a taper on my steroids. So they did the 500 mg intravenous doses for 3 days and then now 60 mg for 14 days. I feel awful from the symptoms from the steroid fallout. I am lucky that I don't have all they symptoms you guys show here. I have the tingling in the face, tinnitus, and severe headaches. we caught mine early due to a freak trip down the stairs and a concussion that brought light to the spots on that pons during an MRI to find out why my headaches were not going away. The wind down from the steroids are horrible and they are not monitoring the sugar or any other levels that are going off the charts since I left the hospital. I see my regular doctor on Monday so I am going to tell him I need help. I am expected to go back to work as a school teacher and deal with my head feeling as if it is going to explode and being jittery as a cat while going on weeks with no sleep. I have balance issues from time to time but not extreme. I have not had the speech issues yet. I do have serious double vision and dizziness and nausea. Does anyone know how to deal with the issues while tapering down on the steroids?

@artmom Welcome to Mayo Clinic Connect! You’ve come to the right place! We’ll try to help you but we can’t tell you what to do or pills to take because we’re not doctors. Everyone explains what has helped/not helped with their own experiences. You’ll find that out pretty quickly.
I tapered prednisone (or tried to) 3-4 times before I was successful. I learned that the doctor is there to help ME so I explained the I wanted to taper slowly. When I did it at my speed, it was so much easier! Always just explain what works/doesn’t work and you’d rather do XYZ. Just be careful especially since you’re not a physician.
Learn as much about clippers as you can. You’ll be able to understand the doctors and ask questions. And you cal always ask questions here. We have a group of really good people.
That’s enuf from me, it’s past my bedtime!

Hi My name is Bob. I was diagnosed with Clippers in July 24. I had all the balance issues. But I can live with that. I walk with a cane but exercise every day. One thing I tried was going to Acupunture. Twice per month. It helps with inflammation. Speech issues had been a problem but getting better. My only advice to you would be to try and reduce any stress any way you can. My doc is switching me to Infusion therapy. Better than predisone. Anyway best to luck to you.

@artmom Sounds like you've really been through a tough time, my heart goes out to you. I only just now saw your message but I wanted to say that I have walked a similar path and made a complete recovery. I hope you are doing better since October.
I came down with CLIPPERS in March of 2022. Mostly I had complete double vision, severe balance issues and fatigue but I was also sliding into dysautonomia with sleep/wake issues. I did a prednisone pulse initially which did wonders. Then I tapered off the pred over 6 months. It has taken 3 years to lose the 15lbs I put on and get my brain back. It was only in the past year that I feel my brain has fully recovered in that I can think clearly again. I do still have memory issues - I write everything down and use several apps to keep track of things and set reminders. I can't imagine how you are working with your symptoms. Oh and the concussion, I'm so sorry to hear that! I had a bad fall and broke a vertebrae in my back but I recovered completely.
What has helped me the most? Walking. Exercise in general. When I couldn't walk, I rode an exercise bike. I also meditate to reduce stress. I know those seem airy-fairy but they work. I know because if I don't do my walking I get achy and my energy plummets. If I don't meditate I get anxiety and I start to feel more of my CLIPPERS symptoms. For example, I had a feeling of dried plaster on the left side of my face when I was in the acute phase. Now, if I'm stressed or tired, that feeling comes back. It's my sign that I'm not properly caring for my body. Also, I'm trying the Anti-Inflammation Protocol diet which is simply eating whole foods and reducing sugar. Considering how much terrible stuff I was eating while on the prednisone, these steps can only help! I am grateful to prednisone for saving my life, but wow it is a difficult friend to have. I'd love to know how you're doing now.

Hi everyone, I’d like to share my situation. Overall, I can say that I’m doing well — I’ve been off corticosteroids for more than 5 months now. At the end of this month, I have an appointment at Mayo Clinic. I’ll be going there, having various tests done, and I hope everything will be fine. I’ll definitely share updates with you as well.

Wishing everyone a Happy New Year and all the best in the year ahead!

@vlazorenko Hi, your news is great!! Was it hard to get this remission? Where are you being treated? Oh oh oh, I just have so many questions! I’ll remember them all when I’m in bed tonight!

@becsbuddy Hi. In fact, it was a very long journey, and I can’t say it was an easy one, but I’m very satisfied that I went through it. Now I can say that, basically, as I mentioned before, I’m taking only supplements and not taking any hormonal medications.

During the process of tapering down prednisolone, I lost 30 kilograms, and for the past 5 months my weight has stayed within the same range. I can say that many of the supplements I used were aimed at reducing stress and restoring my adrenal function.

Of course, everyone’s situation is unique. I’m simply sharing my personal experience and do not recommend anyone to go through this, at the very least without medical supervision. I can say that I was on a dose of 24 mg of Medrol and reduced it by 2 mg every two weeks. When I reached 5 mg, I reduced it by 1 mg every two weeks.

Also, the table does not clearly show everything I was taking, because along the way certain things bothered me more, and I added specific supplements accordingly. In reality, I used even more than what is described there, but these are the main ones.

Additionally, for anyone who has trouble falling asleep, I can recommend (based on my own experience — I am not a doctor) glycine. In powder form, I took one teaspoon before bed, and it helped me fall asleep very well and get high-quality sleep.

FYI translated with AI )