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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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@loribmt
I am yet to see a neurologist. All the information you have provided is very helpful. Thank you so much for sharing your experience. I will keep updating.
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1 Reaction@jimvosacek Usually we get lots of feedback from other ‘clipper heads’ as one member described us! You’ve got a great upbeat manner so I’m glad you’re here! I was on 20mgs. Of pred also because I couldn’t taper off at the usual pace. Told my doctor to use let me slowly taper off. It took awhile but I’m totally off now!
Has your doctor discussed further tapering with you? Also, ask your doc about a scan for bone density. Prednisone can really be hard on your bones and you don’t want osteoporosis.
Good morning, I was off prednisone two years ago for a year but I fell and broke 4 ribs and puncture a lung that put me in a hospital for a week. So I am back on prednisone for who knows how long. Yes, I would like to get off of it but I am dealing with it and taking vitamin D3, K2 and calcium. I also do resistance work-out. My neurologist is afraid to stop the prednisone after my fall and reviewing a MRI. Again, I am happy to be function and be live. Many others have it much worse.
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1 Reaction@jimvosacek
I was diagnosed with Clippers 6 months ago. Initially treated with Prednisone for three months, then tapered and now on Mycophenolate. My only symptoms at time of diagnosis was double vision and slight dizziness. After 3 weeks of being on Prednisone started having back pain, progressed to scapular and sternum pain, also abdominal swelling, rib pain and occasional pain in right side . No explanation for any of this.
I am waiting for an appointment for second opinion.
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2 ReactionsYou are proof that everyone is different. I as well have CLIPPERS for about four years. I am doing well on prednisone. Yes there are negative side effects such as osteoporosis and retina damage. But it has kept me alive! I hope you are successful in finding the drug/procedure that helps. Jim
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2 Reactions@ebjj4health I have not heard of sternum and scapular. So you are off prednisone? Maybe you were taken off too soon, did the doctors ever order an MRI? This is important because no one can see clippers, only the effects of it. Ask the doctor about doing an MRI (I think it’s standard protocol). An MRI lets the doctor see where the lesions were/are. Please get back to us and tell what the new MRI shows!
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1 Reaction@becsbuddy I am off prednisone and currently on Mycophenolate. I was on prednisone for 3 months, and brain MRI after stopping prednisone showed no evidence of inflammation. They discussed IV chemotherapy, but my insurance denied it. Would that be a better treatment?
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1 ReactionI am off prednisone and on Mycophenolate. I was on prednisone for 3 months, and brain MRI after stopping prednisone showed no evidence of inflammation. They discussed IV chemotherapy, but my insurance denied it. Would that be a better treatment?
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1 Reaction@ebjj4health Chemotherapy can be very difficult on the body and may not work for the lesions. But, if you and your doctor want to pursue the chemo, then the doc can fight the insurance company .
Are you back to your normal life, yet? Try to do as much as you are able!
@becsbuddy I am not back at all to normal lifestyle. I felt fine until 3 weeks after being on prednisone. At that point I started having back pain which has progressed to sternum pain, abdominal swelling and pain, all of which is worse at night with night sweats. I have had lots of testing and nothing else shows up. I did have a positive TB test at the time Clippers was diagnosed but told it was Laten. ID wanted a second test but I had already started steroids and that test was negative. I either ran or walked almost everyday prior to Clippers, it is a struggle to just walk. I don’t sleep well due to the pain and sweats at night.
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