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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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Sorry didn’t read the last sentence. I just want to get back to driving and being able to work. Right now my body feels like it’s about to fall asleep and like my nerves are having a party at the same time. I’m afraid to drive with my arms feeling like this and I feel like my reflexes are off some.
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1 Reaction@jamie72 Yes, prednisone is a great drug and is considered a first-line treatment for Clippers. But one prednisone is stopped, everything comes back. That’s why I’m on CellCept and rituxan; they act like prednisone without all the side effects. Is the UVA doctor going to follow your case and monitor you?
Yes. I’m see them from now on.
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1 Reaction@sandra1983 Yes, some people continue to take prednisone because tapering off is too problematic for them. But prednisone also comes with major side effects! And I’ve had 3 of them: cataracts (had surgery), osteoporosis, but no broken bones, yet. And some people get muscle wasting in the large muscles (arm and thigh). And the continued use of steroids(prednisone) can make you more susceptible to infection. Nothing is easy with CLIPPERS!
My neurologist won’t let me stay on prednisone even though I’m 76. What do you think your doctor will say when you ask?
@jamie72 That’s fabulous that UVA docs will be your doctors!!!!
Sandra,
People trying Pred packs and suffering new symptoms or relapses after stopping - like myself - is fairly commonly mentioned here on Mayo Connect. Let me emphasis for you that I don't think of pred as a "maintenance" drug, because it seems that it can only be kept for longer periods depending upon many other factors. In my case, that might be my age, which is really up there, and my pre-distress physical and health condition, which was excellent. And should I develop new or old symptoms or distressors, I'll be going off pred. Whether pred could serve in this way for you is for your doctors and advisors to try to determine.
I mention all this because it is too easy to pick up something on Mayo Connect without tracing back through earlier postings to see the context and fuller picture behind a posting.
Anyhow, hope your week evolves in a very light or no crap way, and your doctor can help.
Don
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2 ReactionsThanks so much!😊
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1 Reaction@donnyboy What you said is so true! We can’t believe everything that is said on Mayo Connect. If you (members) believe in somthing that has helped you, please back up your recommendation with scholarly studies and/or scientific information. Or say if it was prescribed by your doctor. And always ask your doctor before you try something new!
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2 ReactionsSo they cut me to 45 mg of prednisone on 8/5 with the plan to go to 40 mg on 8/12. But with the cut to 45, I’ve noticed a decrease in my motor skills and language. I’ve message the Dr with my concern that the next cut would be worse.
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1 Reaction@jamie72 Any idea why your doctor is doing a fast taper? Hopefully you will be able to talk with him soon. I told my doctors that I didn’t want to taper quickly and they were OK with it. Like you, I reported all changes in symptoms to them and they would either agree to not change the dosage for a few weeks or to order an MRI to assess any changes since the last MRI.
I know that this is all new to you, just explain your needs. All Clipperati or Clipperheads are different but we all have to learn how to advocate for ourselves (in a polite, non-confrontational way)
Tomorrow, start a journal with dosage of prednisone and how you feel. Especially list specifics of motor skills and language. Keep this for a month or more, so you can demonstrate how You react to the prednisone changes. Does this sound reasonable to you? How do you think the doctor will respond?
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