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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?
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@kristyinoregon I am so upset for you in losing your neurologist. We put our faith and trust in someone only to have it yanked away. But, it sounds like her co-workers are more than willing to take you and Clippers on. And it’s good to hear that they will send you to a multidisciplinary group. I think you are in the right hands!
And don’t think about the CellCept and prednisone. I was on the same combination at the beginning and it didn’t work for me either. All the doctors are on a trial and error plan because so little is is known about clippers. What is 1 thing you would like to have come out of this mess?
Hello Becky,
Thanks for your response to my post. You mentioned the prednisone and Cellcept didn’t help you at first. I have noticed that many of those who had a positive response have also had an prednisone infusion. Did you ever have that? I understand it’s a really high dose, and while I would not look forward to starting over on a prednisone taper, it might be worth it. Thoughts?
I really just want to find treatment that improves the lesions in my PONS, and hopefully, my symptoms…..CLIPPERS or not.
How are you doing these days?
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1 Reaction@kristyinoregon You ask a good question about prednisone and cell cept. I think that the first time it didn’t help was because it was probably too early. I don’t know if all the lesions were gone or not. At that time the primary doctor was out on maternity leave (but she’s back now!). So, the primary doc came back and she is fabulous! She has her way of doing things. I was given 8 months of chemotherapy and then restarted on Cell Cept and I’ve been OK since. Now, I’ve added rituxan. I really, really hope it works this time. Your doctors will keep trying and you get to be patient. It can take awhile to get into remission. It all depends on how many lesions you have. Nothing with Clippers acts quickly, unfortunately.
Becky,
Thanks for your response and sharing your experience and advice. Very helpful and thoughtful. 🧡
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1 ReactionThis is a follow-up on my posting about staying on prednisone. My NYC Clippers expert, Dr. Ilya Kister at NYU Langone, had me go through some 30 blood tests, a PET scan and a brain vessel wall MRI about two months ago. He now has all the results and they do not reveal any underlying conditions or problems that might be the real cause of my Clippers symptoms. Very good news in one way (that I'm healthy in other regards), but leaving the mystery of what the cause of my symptoms is intact. He remains uncertain if Clippers is the right or complete descriptor of my condition. He gave me the choice of staying on prednisone or moving to an alternative, saying he felt 55% in favor of staying and 45% in favor of moving. I am choosing to stay, since I like the stability it has provided over the past 4-5 months. He is preparing recommendations for tests and other things to watch for when staying on the prednisone. We can switch to trying an alternative if undesirable prednisone side effects emerge.
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1 ReactionHi Kristy - just chiming in with a quick note here. I received Pred megadoses via IV while I was originally hospitalized. It was several doses of 1000 mgs. and it totally worked. It took 7 months to get off the Pred after that. Now, two years later, I'm just doing the Ruxience infusions every 6 months and symptom free. I'm 57 now. The pred was a real whallop but totally worth it for me. I train every day (weights & cardio) so I can be ready if I ever need to go back on pred.
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1 ReactionRecently diagnosed this month
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1 Reaction@daneymae75 Welcome to Mayo Clinic Connect! Can you tell us a bit more about yourself? Were you just recently diagnosed? What medication are you on? And, most important, have you got a knowledgeable doctor? Please read all the postings from members; they can give you an idea of how they manage their life with Clippers!
diagnosed with Clippers. Looking for support of this rare autoimmune
I also was just diagnosed with clippers after a tetanus shot
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