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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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@ebjj4health I honestly don’t know what to say about your pain and symptoms. Are you seeing a rheumatologist? Have you had a second opinion? If you haven’t had one, i suggest that you get one. Are you near any comprehensive medical centers or universities with a medical school? Who is helping you while you are sick? I know it’s a lot of questions, but I’m just trying to help you figure out things and make plans
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1 Reaction@becsbuddy Yes we have two major teaching hospitals here. Initially treated with one of them and diagnosed with Clippers, received good care but no help with the current symptoms that started in December, Clippers diagnosis was in November. I just had a second opinion at the other institution, it took months to get an appointment, but it was a good visit. A few more test were done, and referred to Infectious Disease for evaluation, again it’s a wait for an appointment, scheduled for June 22nd. I tried to get an appointment at Mayo in Jacksonville, but no appointments and no waiting list. Luckily my husband is very helpful and my PCP has been very supportive.
Deb
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2 ReactionsHi Becky,
Sorry, I accidentally deleted my answer to your private question, and I’m not sure how to send it again.
SWAlex
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2 Reactions@ebjj4health
Rituximab and/or IVIG infusions have been reported to work in autoimmune neuropathy. Your rheumatologist and neurologist can prescribe these medications.
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2 ReactionsThank you! Do you know if they are a better choice over Mycophenolate?
Deb
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2 Reactions@ebjj4health Mycophenolate is usually used after you have been symptomless for a period of time. I was on mycophenolate for approx. 2 years. When the doctor first tried the IV infusions, they only worked for about 4 months (6 months is usual). My brain status wasn’t good enough and some of the lesions came back. So, it was back to mycophenolate for another year or so. Now I’m on rituxan again and feel good most of the time. I have “off” days when I don’t feel great, so I take a day or so to read, go walking, and fun stuff. And the I’m back! For me, the perfect example is our move from a house into a senior residence. Whole house down to 3 OK-size rooms. My husband thought I did well, no crashing. It was a tough move (I have 20+ moves to compare it to!).
Your doctors know best how to treat Clippers so don’t rush the medicines! The disease isn’t going away! The microphenolate will help you feel better, too, so just concentrate on doing what you have to do to stay healthy and well. Avoid those with respiratory illness (flu, colds, measles), prevent urinary tract infections, and get your vaccines!
@becsbuddy
Thanks for the info. Is Rituxan IV? I think we will also be downsizing, it will just make life easier. So it’s ok to get vaccines while on Mycophenolate?
Thanks,
Deb