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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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Yes when she gets better I did send this to her daughter n law. I saw her today she is in a rehab place. She took 20steps today still not eating. She has a long road ahead of her.
Hello, I’m Mike from Arizona. I’m 2 weeks out of the hospital after 5 days of IV steroids. I was barely walking and had slurred speech. My neurologist sent me for MRI and the hospital neurologist gave me scans also confirming Clippers. I’m now on 50 mg of prednisone. Me and my family are searching for the best treatments moving forward. Also finding this group an getting to read about everyone else really helped. I will have lots of questions. Lol!! Also im 50 year old male. Its Been an emotional ride. My wife saved me. She got me to an awesome neurologist. Dr. Rabin.
Sending love and positive thoughts to everyone.
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7 ReactionsHi Mike. I’m so sorry to hear about your struggle but I’m happy to help as much as possible. I’m 99% back to normal now after my tango with CLIPPERS. My treatment was high dose prednisone pulses followed by a looonngg taper down and infusions every 6 months with Rituxan or Ruxience (I’ve had both). BE super careful about falling (I had a bad fall at the beginning when my vision and balance were messed up and that didn’t help things). But now I feel great, I’m back to full time work, typing this from my spin bike at the moment and I’m headed out on a hiking vacation actually. I’ll be happy to answer questions as I have wi-fi the coming days. You should be able to find more of my story here too. My experience with CLIPPERS was that treatment works! It’s a long road but full of good things too. It was a big wake up call to get my life together and I’m better now than I was before. Take it one day at a time for now and have hope. As scary as it totally freakin’ is, there are great treatments.
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7 ReactionsHi All. Hey! I have great news for anyone getting Ruxience every 6 months. I’ll post more details soon but basically I signed up for the Pfizer Co-pay Assistance Program (Google it) and was approved and it might cover the $2100 medication cost. I also am switching from the hospital infusion clinic to a private infusion center and the cost is estimated to be under $3000. The previous place billed my insurance $24,000. Yes, that’s right. So it was maxing out my $7k co-pay every year. I’m still doing labs, MRI and the office visit with my amazing neurologist through the hospital. It’s scheduled for early July - I’ll keep you posted!
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6 ReactionsThank you.
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1 Reaction@mikedmc27 Hi, MIke and welcome to Mayo Clinic Connect! I’m glad you found this small group. Your wife sounds awesome! She’s really taking charge and finding the right people and places for you. Lucky you!
I’m having trouble coming off prednisone. This is probably my 3rd time, at least! I’m also on Myfortic ( another form of CellCept), and I just had my 1st round of rituxan. I had tried rituxan earlier but it didn’t seem to work, so now I’m trying again. I’m able to do most things for myself, but, boy do I get tired! The biggest problem I had (and still do) is accepting all my limitations. I’m working on it, though!
What are you hoping for going forward?
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3 Reactionsthank you ma'am for your information. it is greatly appreciated.
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4 ReactionsThank you for taking the time for a response. its greatly appreciated from my family . I'm ready to do the work and learn what ever I can. I have completed my second 5 mile walk as of yesterday. It really smokes me but i'm getting muscles back in my legs. that feels amazing!! I have my next follow up with the doc on june 10th. I will bring up Ruxience. Finding this thread has been emotional for me. finally getting to speak/read to other people that are going through it. enjoy the vacation!! p.s I grew up in Vista. small world.
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5 ReactionsI love Dr Rabin. Best to you!
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2 ReactionsOur best thoughts going out to you and your family!
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