CLIPPERS: Looking to connect with others

Posted by Becky, Volunteer Mentor @becsbuddy, Nov 14, 2019

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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Robert,

I recommend that you consider more rigorous types of exercise than those you described. Such as swimming or hiking, cardio workouts, machine exercises, or group exercise sessions of any type. As many of these different types of exercise that you can engage in. I'm 83 and keeping the body in shape is a necessity, even without Clippers. The more and different kinds of exercise I do, the better I feel and the better is my balance and normalcy.

Are you considering changing medications to get off prednisone? Your neurologist should be exploring or suggesting this as a possibility.

Finally, consider finding a rheumatologist who is familiar with Clippers. Part of a rheumatologist's scope of expertise is helping people with auto-immune problems, so they may have experience with the king of symptoms you've mentioned that stem from demyelination disease.

Glad to see several people weighing in on your post!

Don

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@astanko

Hi,
Just fyi, I was able to wean off Pred within 8 months of my initial hospitalization and I’ve had no relapses (knock on wood). I do try to exercise (I got an Apple Watch and try to close my rings every day) and eat right although the pred left me with a stubborn 5 lbs extra that I can’t seem to shake. I also have a crazy sweet tooth now - always craving desserts. So I really feel for you Robert. When I came off the pred I had A LOT of joint pain for a couple of months. I thought it was permanent but doing very gentle yoga helped a lot and finally it went away. I am currently only on Ruxience - I get an infusion every 6 months. Age 58, female, San Diego. I’m happy to help anyone going through this scary disease. My only remaining symptoms are very slight thankfully. I’m grateful every day to be here.

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I too live in San Diego. What type of doctors do you see? Are you with Scripps or Sharp?

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@jimvosacek

I too live in San Diego. What type of doctors do you see? Are you with Scripps or Sharp?

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I am seeing a neurologist at this time. No other doctors. I am under Medicare Advantage HMO plan.

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@donnyboy

Robert,

I recommend that you consider more rigorous types of exercise than those you described. Such as swimming or hiking, cardio workouts, machine exercises, or group exercise sessions of any type. As many of these different types of exercise that you can engage in. I'm 83 and keeping the body in shape is a necessity, even without Clippers. The more and different kinds of exercise I do, the better I feel and the better is my balance and normalcy.

Are you considering changing medications to get off prednisone? Your neurologist should be exploring or suggesting this as a possibility.

Finally, consider finding a rheumatologist who is familiar with Clippers. Part of a rheumatologist's scope of expertise is helping people with auto-immune problems, so they may have experience with the king of symptoms you've mentioned that stem from demyelination disease.

Glad to see several people weighing in on your post!

Don

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Thanks for the info. I'll get on it.

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@jimvosacek

I too live in San Diego. What type of doctors do you see? Are you with Scripps or Sharp?

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Hi,
I was brilliantly diagnosed by Dr. Alexander at Scripps. The care I have received there has been wonderful. I just got my once-every-six-months Ruxience infusion yesterday and it went great. I feel like a million bucks! And very, very lucky.

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Hello I would like to ask you a question. Was your Ruxience infusion used as a replacement for Prednisone? I am on 40mg of Prednisone to reduce inflammation and I need to ask my doctor about Ruxience.

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I found this article to be very helpful as it is written in layman's language and easy to understand.
https://neurolaunch.com/clippers-brain/

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@astanko

Hi,
I was brilliantly diagnosed by Dr. Alexander at Scripps. The care I have received there has been wonderful. I just got my once-every-six-months Ruxience infusion yesterday and it went great. I feel like a million bucks! And very, very lucky.

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@astanko
Were you off Prednisone, or tapered down from it, with this first transfusion?

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@donnyboy

@astanko
Were you off Prednisone, or tapered down from it, with this first transfusion?

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My assumption was that Prednisone was specifically used to cut down inflammation and that Clippers brings along inflammation with it. My doctor has me also on Azathioprine. I want to either cut down on Predisone and eventually stop or switch to something like ribuimab. What are the consquences? I'm a newbie at this. My next doctor appt is on Feb 4 and I want to be fully prepared to make a case to reduce or stop Prednisone. I'm diabetic and Prednisone causes my blood sugar to spike.

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@consultcjs

I found this article to be very helpful as it is written in layman's language and easy to understand.
https://neurolaunch.com/clippers-brain/

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@consultcjs Me ha encantado el artículo.
Muy bien explicado y muy entendible.

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