CLIPPERS: Looking to connect with others

Welcome @astanko We’re glad you found this site. And you sound like you’re doing OK. Did you have a brain biopsy to confirm the clippers? There seem to be only a few of us who exist with clippers! I’ve been dealing with this for about 4 years.
Since you are on hi dose steroids, have you had a DEXA scan to check the health of your bones. Prednisone can really do a job on bones and eyes. :-(. I’m dealing with osteoporosis now and also just had surgery for cataracts.
What is the doctor’s next plan once your prednisone gets low? I’m now on Mycophenolate as i taper off the prednisone. Sorry, I’m giving you too much info when your so new to all this.
Do you have a good neurologist that you like?

I'm not dealing with Clippers but have come to learn how mysterious our bodies really are! What is needed is education and we can be thankful that healthier minds are curious to study these various diseases. Personally, I had to become my own advocate with my husband by my side. I believe people when they say they are sick and not check them off as crazy. It's more like frustrations than crazy. No help understanding your disease but my heart goes out to you.

@astanko wondering how you’re doing. Has anything changed/improved for you? Hope all is well.

Thanks so much for checking in with me! I am grateful and happy to report that I'm doing very well. I'm back to all of my normal activities. As for treatments, since my first message I've just been on Prednisone. I tapered down in prep for a Gallium PET scan but I felt like my eye jumpiness (nystagmus) and vestibular instability was starting to creep back. The scan is still not approved by insurance so my neurologist had me do a 3 day 1g Salu-Medrol pulse and that made the symptoms go away. When the scan gets approved (hopefully) I'll taper down again for that. The Gallium PET scan is to rule out neurosarcoidosis. I'm currently on 20mg of Prednisone daily. I have a teeny bit of nystagmus and I'm kind of slower in general than I was a few months ago (I seem to need to think and move a bit more slowly). This could be due to the brain injury of the initial inflammation. Aside from that I have a bit of vertigo (about 20 secs of spinning when I get up or lie down) and the other normal side effects of Prednisone, which are manageable so far (so hungry!). My doctor has said that once we get a confirmed diagnosis he wants to put me on Rituximab so I will check out the links you provided about that...as well as the medications you said you're on currently. Overall I'm just very grateful to be able to walk, workout with weights, drive, work and generally be alive. Every day is a gift.

I didn't have a brain biopsy. My lesions are deep in the pons and both my neurologist and neurosurgeon said that the risk of biopsy ruled it out. They also feel it's not needed to confirm the diagnosis, although we are still working to confirm that it's CLIPPERS and not MS or neurosarcoidosis.
I did get a DEXA scan, it checked just my pelvis and showed osteopenia, which could have predated the brain thing. I'm taking Vit D and Calcium and working more calcium-rich foods into my diet - along with weight training (which I've always done). Thanks for your cautionary words, I am taking them to heart!
Once we get the diagnosis confirmed I'll taper off the Prednisone to something more targeted. If it is indeed CLIPPERS, my neurologist wants to try Rituxan. I've noted your experience with it. I do like my neurologist, Dr. Alexander at Scripps in San Diego. He's fantastic, and the whole team has been great. I'm incredibly lucky to have them working on my behalf. Thanks again for reaching out to me!

@astanko Thank you for bringing us up to date and it’s good to know that you’re doing ok. Be sure to tell us of the final diagnosis.

Hi I am new on here and just had my MRI Orbits with contrast and without contrast 6/3/2022. My doctor, a Neuro Opthalmalogist is conferring with other doctors to come up with a plan for my ailments. He stated there are subtle findings in my brain stem and I have Bilateral Mastoiditis. Six months ago, just after Christmas 2021, I started having issues with Vertigo, and waking in the middle of the night about 3:00 AM vomiting. Then, on March 9, 2022, I got up in the morning, and about 10 minutes later, my whole body started tingling and going numb - quite scary. I checked my blood pressure and it was sky high. I stayed home and went back to sleep. Later I started feeling somewhat better, but was terrified I might have been having a stroke. For a couple of days, I could barely get up and move. I have issues with my balance and walking has become more difficult. My arms go numb and tingle a lot. Also, my eyes have double-vision and Rotary Mystagmus issues. I was in a bad car crash in 1993 with a bad head injury (unconscious) and was later diagnosed with PseudoTumor Cerebri with Catatonic Seizures. This went into remission in 2009. So I thought maybe this returned, but my optic nerves are fine. Any way, if you have any advice for me, please share, I am very open minded and would love to hear from you. Hugs to all of you.

Good morning @donnarasmussen you must be very frightened with all that’s going on. Do you live alone or with someone who can keep an eye on you? What you are describing doesn’t sound like Clippers so i thought this discussion group on brain issues might be more helpful. Check it out
https://connect.mayoclinic.org/group/brain-and-nerve-diseases/
One question: in March when your blood pressure was high and you felt numb and tingly, why did you go back to bed instead of the ER? No disapproval of your actions, just wondering.

Hi I’m 44 yo male from the uk. I’ve just been diagnosed with clippers and it’s fair to say I’m quite petrified. I’ve been released from hospital on a v strong course of steroids and would love some input / reassurance about what this thing is and how it’s treated long term. Thanks

G

Hello, @dustymi11er . I”m so glad you found Mayo Clinic Connect. Clippers is a frightening diagnosis to receive, so I understand you feeling petrified. I was diagnosed 4 1/2 years ago and I had a really difficult start. I was on high-dose steroids but am now tapering off in favor of a drug that suppresses the immune system but without the bad side effects of steroids. My brain has been free of ‘lesions’ for over a year now, but i have to take the drugs forever. 🙁
I do have an article on Rituxan which i received twice. It’s a wonderful drug but it stopped working for me. Then i had 8 cycles of cytoxan (cyclophosphamide, a chemotherapy drug). As soon as it worked, i went onto Mycophenolate mofitil, the immune suppressant. It’s been a long road, but….. I’m getting better
I’m going to ask a few members, who have also said they have Clippers, and see what info they have. @janegm. @balangan111 @movingtomadison @ninamichelle @sweetpeanutbunny and @astanko
How are you doing now?