CLIPPERS: Looking to connect with others

To add to this, I had an appointment with my neurologist today and she said she just recently discussed the PET-CT and MRI results with the NYU Langone doctor who arranged them. Both are in agreement that I seem to have entered a stable period in which a daily dose of 20mg Prednisone is serving me well. They are both inclined to keep me on this, given my current condition, my age, my medical history, etc, but will try something else if new symptoms develop or the stability goes away. I am quite content with this, although it does mean accepting that what has caused my demyelination disease remains a mystery.

Don

Hi Don!
That is so good that you are stable! I am too!
On 20 mg daily as you are. In reading through all the messages, most people are on 20 mg. That seems to be the magic number for this disease.
Yes, it is hard to accept that they cannot pin down what caused this.
I was able to work out last night. Working from home today, thankfully. So far feel good.
Enjoy the rest of your week!
Sue

Hey Don,
That’s good news. Hope that continues for you.
Kristy

Hello Fellow Clipperheads,
I am wondering if anyone is struggling with pressure and burning inside the skull. My doc thinks it’s from the brain inflammation, noted on my MRI (in addition to the T2-Flair in the PONS). I can always feel it, but some days it is very intense and hurts, too. On these days I have greater difficulty with balance, coordination, and some tremor. And, my low humming tinnitus is worse on these days, too. Do any of you experience this combo of symptoms? It seems that with CLIPPERS there is a lot of variation from person to person, probably because the PONS has so may important nerves in it. Just hoping to chat with someone with similar symptoms.
Thanks. Kristy

Sue,

I'm so happy that you are enjoying life again! I burst into hoops and smiles when reading your message! Hope this continues and the stability you are feeling lasts. Unfortunately, you never know, until something happens or time passes, but super that its looking good now.

Yeah!

Don

I’ve been out the hospital since July 12. Started on 60 mg prednisone for a couple of weeks and then start stepping down 5 mg a week and now down to 45 mg. While this has me back to about 90% everything but my right leg still is still tingling and some numbness I also feel like my motor skills are only about 90%. These symptoms started around the middle of June while I was on 60 mg of prednisone for my lung issues. When I ask my dr about these symptoms on July 1st they told me to stop the prednisone, which lead to the full on attack in July 3 and thus my diagnosis. I say all this cause I’m praying that with the correct medication the remaining symptoms go away or this may be my new normal.
Haven’t driven since end of June. Don’t want to put myself, others or the company I work for at risk. Any feedback on these as I’ve only started this journey, diagnosed July 8, 2024.

Jamie here,
I'm down to 45 mg weekly, they are getting me to 40 mg a week. While the prednisone has kept me from a complete relapse like first of July. My whole body is in a state of numbness and tingly. I describe it has I just finished up a legs and arm day at the gym, and my nerves are having a party (dancing around everyone) and my hair feels like its running. Went for my MRI and couldn't get in the machine past my shoulders (6'4 350). Have an new appointment for Aug 20, so this had delayed the neurologist for now. I do have an appointment on Aug 9 to see a rheumatologist at UVA. Work has been great to work with, working as I can and they have a driver picking me up each morning so I can go to the office. I'm still not driving, arms feel heavy and reflexes are off, at least I feel like they are.

THIS IS A GREAT SUPPORT GROUP, THANK YOU

I was unaware that Prednisone could be taken as a maintenance drug. Wow! Wonderful! I'm on a taper right now and I know once I have taken my last pill tomorrow that next week I will feel like crap again! For what disease in particular is Prednisone taken on a maintenance level? I see my Ra doc next week and I intend to discuss long term with him for my multiple RA tagalongs! Thanks for writing about this!!

Hello @jamie72 Welcome to Mayo Clinic Connect! We’re glad you found the site. The folks in this discussion group are great and will happily answer all you questions (if we know the answers!).
Can you tell me who diagnosed you with clippers? And, have you had all the diagnostic tests: MRI, and maybe a brain biopsy? I do have to say, that clippers is not an easy disease for most. Some patients with little brain involvement, can get to a very positive point in the disease. As for me, I’m in year 6-7 and still have to work hard and pay attention to what I’m doing. I’m on CellCept and 4 mg prednisone (I’m trying to taper off, but it’s not easy.) I just started Rituxan which really made a difference! And, I get my 2nd dose this week! What do you hope will happen with treatment?

I had an MRI on July 7. My primary doctor, the hospital in house neurologist, and an out patient neurologist made the first diagnosis. I have been to UVA and the neurologist there is 99% sure it is clippers. But is doing another MRI to confirm and make sure something else is going on. She said that if is was just clippers that the brain lesions should be clearing up with the prednisone.