CLIPPERS: Looking to connect with others

@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.

@suec147 @becsbuddy

Sue, I moaned as I read what you said about years of searching for the right medication and I gasped when I read about your right eye blindness and your recent fall. You poor dear. I wish I could help immediately, but maybe something I say about my own condition and experience might lead to something of assistance to you.

My diagnosis of Clippers came on May 3rd, after my neurologist, who focuses on auto-immune issues, had tested for and ruled out a variety of possible diagnoses that would be possible for someone with a demyelination disease (e.g., MS, NMO). My symptoms, which began with left eye vision impairment, and the hospitalizations that ensued, only began last September, and finding the right prednisone regimen has been a major issue and question. Based upon earlier changes and their results, I am now on 20 mg prednisone per day, every day, plus gabepentin, while pressing forward with OT and PT. Some consideration is being given to shifting me to what Becky has started, rituximab infusions.

I’ve been very active in exploring Clippers, for example by joining Mayo Clinic Connect and doing online investigation and buying Bill Crum’s A Book on CLIPPERS. My neurologist has lined up an appointment for me in 10 days in NYC with a specialist well versed with Clippers for a second opinion or evaluation. I have also been invited for consultation anytime with a Mayo Clinic doctor in Minnesota.

Given all this, I have to ask if you are comfortable with your neurologist. Even though she gave you a Clippers diagnosis way back in 2017, is he/she an autoimmune focused neurologist? Have you received a second opinion or evaluation? Has your bone density been monitored regularly, at his/her direction?

A suggestion for using MC Connect: if you plan to write something for more than a few paragraphs, and maybe you might want to digress to look up something to include, do it off MC Connect, in Word, or Pages, or something on the side, then copy and paste it into MS Connect. I didn’t do this and lost everything I wrote earlier this afternoon when writing to you!

Hope you are feeling at least a little better now, Sue, than when you first posted a few days ago.

Don

@janegm Good morning! Welcome to MayoClinicConnect! We’re an online community of people worldwide who share similar experiences and information and support each other. I’m so glad you found us! I was treated with CellCept and steroids but now I’m on rituxan every six months and I’m tapering off the steroids. They really helped but I developed bad osteoporosis. Have you been able to resume your normal life? What has changed for you?

@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".