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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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Hi. Yes! Ruxience and/or Rituximab kill off your B cells - the cells that “remember” what you’ve been exposed to with the idea that your immune system will stop over-acting. Pred is very harmful in the long term, best to get off it if you can. 40g is a lot of Pred.
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2 ReactionsI weaned off Pred within 8 months of my acute phase. I started Ruxience right around that time (Oct 2022 I believe) and have been on only that (no Pred) ever since. I get an infusion every 6 months. I’ll report back on the dosage (I need to look it up). I have been on both Ruxience and Rituxan with no side effects. The infusions are super easy, just sit in a chair for a few hours hooked up to an IV. A rather lovely time to snooze or read.
I got the go ahead to start weaning off Prednisone this week from my neurologist. So Happy!!! Thanks to feedback from this forum, I am looking into Ruxience infusions as an alternative.
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1 ReactionExcellent!! For your info, here’s what I have for pre-meds: 2 Tylenol 650mg (tablets), 1 Benadryl 25mg (tablet), 100mg of Pred (IV - just a one time thing during the infusion), and then the Ruxience (IV - 1000 mg). Those would all vary according to your doctor of course. It’s a protocol to reduce the chance of an allergic reaction (anaphylaxis) to the Ruxience. Has worked like a charm for me. I have so much more to say but I gotta run to work. I’ll try to pop back in later. Congrats Robert!
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1 ReactionHas anyone heard of White Matter Disease? This is some sort of adnormality that comes along with Clippers. I have a mild form of this based upon an MRI i just had. How do you live or treat this if at all.
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1 ReactionI am also tapering steroids. I am at 30mg working my way to 20mg. My doc said that tapering takes some time. I will at 20 mg in June. I'm interested in your progress. Good Luck.
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1 Reaction@robertmayo1 I start on 5mg per day for one week, then taper to 4mg. I was totally off in Dec when a doctor noticed something on my MRI. Back on steroids! Looks like I have 1 more month, then I’ll be done, hopefully.
@robertmayo1 puedes concretar más? Diferencias con Clippers,
Síntomas... Gracias.
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Hello @luma22 This is Becky, the moderator for the site. Are you wanting more information on Clippers disease or White Matter disease?
Hola, Becky!
@robertmayo1 Dice"...enfermedad de la sustancia blanca... Es una especie de anomalía que se presenta con el síndrome de Clippers".
De ahí mi pregunta. 🤷🏻♀️
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