CLIPPERS: Looking to connect with others
Have you ever been told that you have Clippers disease and you’re thinking: “ what? I’ve never heard of such a thing! What on earth”? Well Clippers is real and is one of the newer Autoimmune Diseases—it was only given a name in 2010. It’s similar to many other AD I’ve read about on Connect: vague, random symptoms that can be debilitating and difficult to diagnose. An MRI and brain biopsy are needed to confirm diagnosis.
My journey with Clippers (Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids) began with unexplainable vomiting. After many trips to the ER and being shrugged off be doctors, someone decided that it must be a gallbladder problem, so it was taken out, but nothing changed. The vomiting got worse and, eventually, I couldn’t walk without help, I choked on foods and water, my voice changed, and I lost 20 pounds. I was finally taken seriously by doctors when husband again took me to the ER and I was basically unresponsive. I was admitted and given an MRI (which I had repeatedly begged for) and the scan showed a large area of demyelination of my brain. None of the doctors knew what was going on, but the neurologist finally decided on intravenous steroids and a brain biopsy. I have no memory of that hospitalization. When I got to rehab, my husband took me to University of Colorado medical center where I continue to get treatment in their neurology-immunology department.
My message is to encourage anyone, with unexplainable symptoms, to tell the doctors to “think outside the box” and to advocate for themselves. Have someone go with you to appointments and to take notes! Don’t keep information only in your head!
Anyone else out there?
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
@becsbuddy @suec147 @catartist
Thanks to everyone for sharing all this information about your experience or trials with rituximab! An amazing amount of information.
Becky, I already had the article you sent me references for, and it is a very good one from 2018. Thanks. It looks like Clippers treatment requires finding a medication regimen that needs to be changed as the condition of one's body changes. I haven't heard of anyone sticking with rituximab indefinitely, although the woman in the article was, at last report, on it for four years after the frequency of the rituximab infusions was increased from once every six months to once every four months. No update is available about whether she has stayed with the rituximab past four years (maybe one could ask the article's authors?). I guess while we hope for and pursue finding a long-term treatment regimen, we have to live with always monitoring ourselves for the emergence of new symptoms and then dealing with their impact. Yuck! But staying on the hope side as long as possible!
Sue, hope your appointment next Wednesday leads to a positive outcome for you, including the return of vision in your left eye.
Chris, I've gone through weight and muscle loss but am coming back significantly with occupational and physical therapy over he past 3-4 months. Just a few weeks ago, after a short relapse, I looked as out of shape as I've ever seen myself (women looking at me naked, instead of being impressed, would be depressed - ha), but I am getting back to normal by exercising (swam 22 laps this morning). I realize my condition is unique, but do try to get your muscles back if you can. As they say, use it or lose it.
Don
Thanks Don for replying! And yes PT and exercise IS so important and helpful. But my issue is a deteriorating disease that it atrophying my muscles regardless. RA can lead to this Cachaxia, and mine is made worse by steroid wasting syndrome - I am looking for others experiencing this. Hard to know what to expect. I have already lost most of both shoulder (cuff) and two of 3 glutes - only have Maximus working - no swimming for me! But pool water resistance is good. And chair yoga, walking ( with walker now). Any one???
Gosh, that's tough. Hope someone has some suggestions for you.
Thanks again- I am not giving up! I lost a fair amt. of weight too - part of it apparently (holding 98 past few days). Fingers crossed.
@donnyboy
Oh thank you so much for your message. My Neurologist is an autoimmune dr. He sent me for a 2nd opinion to make sure he was on the right track. University of PA confirmed.
I am startin to get less steroid side effects. I think my body is getting used to it again. I would love to be back to 5mg but that does not work. I am going to get that book you mentioned.
Thank you for the heads up on typing in word first!
Hope you are having a good day today!
Sue
It seems like you're referring to a conversation or interaction on the MayoClinicConnect platform where Becky, a Volunteer Mentor, is discussing her medical treatment and experiences with another user named @janegm. Becky mentions her treatments with CellCept and steroids, transitioning to rituxan, and dealing with osteoporosis as a result. She asks @janegm about her experiences and how her life has been affected by similar medical challenges. The exchange shows support and sharing of information among community members facing similar health issues.
@becsbuddy
I am happy to add to the information about treating Clippers with rituximab that was contained in the article "Effective treatment of CLIPPERS with long-term use of rituximab". I emailed the author of the article, Dr. Veronica Cipriani of UChicago Medicine, to ask her whether the patient she described in that 2018 article was still on rituximab today. Dr. Cipriani very graciously responded as follows: "I'm glad you reached out! I am happy to say that the patient from that case report is still on rituximab and doing very well. We were eventually able to take her from every 4 month rituximab to every 6 month, and recently we made the move to dosing every 9 months. Although CLIPPERS is often very responsive to steroids, we usually need an exit strategy because of all the long term complications of steroid use." So this patient of hers has been continuously on rituximab for 11 years! This is very positive news to me, since my neurologist is contemplating moving me from steroids to rituximab.
Dr. Cipriani also shared some information about CLIPPERS patients positive for MOG antibiodies: "I have another patient with a CLIPPERS presentation who is on IVIg and doing well on that. This is because he tested positive for MOG antibodies. I didn't know this when we wrote that case report, but there have been quite a few cases with positive MOG antibodies. Per the Mayo clinic, MOG is best treated with IVIg, so that is why I chose IVIg for that patient. This was written by some colleagues of mine: https://www.sciencedirect.com/science/article/abs/pii/S2211034821001413".
@donnyboy. WOW, you are certainly resourceful! Thank you! I’m sure everyone in this discussion thanks you. Please stay with Connect—we need your brain!
If anyone else is interested in reading the article, here is the link:
https://www.neurology.org/doi/10.1212/NXI.0000000000000448
It’s pretty heavy, but we're all smart, aren’t we!
Hello everyone,
How do you deal with the heat. My favorite time is anything outside, so staying in is not an option I like.
I have been off balance lately. I have been doing my exercising in the pool, easier on the joints. Plus if I fall, it is a soft landing.