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.

suec147 | @suec147 | Jun 6 10:15am

In reply to @catartist "Daily steroids every day cause muscle atrophy after years too. I am suffering from that now..." + (show)

@catartist I am so sorry. Yes that is a perfect analagy. It is liked a popped balloon. My legs and glutes are becoming less of muscle mass. Thank you for reminding me that long use of steroids causes muscle atrophy. Summer seems to be the hardest season for me. Heat, pain and not being able to move fluently. I fell Saturday because of my legs not working as they should.
Hope you are having a good day!

suec147 | @suec147 | Jun 6 10:18am

In reply to @becsbuddy "@suec147 same with me. I have trouble going lower than 3mg. I also failed on my..." + (show)

@becsbuddy Good to know about trying rituxan again. I may bring the suggestion up to my dr when I come to a need to change meds again.
I am so excited to be a part of this group!

suec147 | @suec147 | Jun 6 10:22am

In reply to @catartist "Yes - I am like that - stuck at 5. Less and I curl up into..." + (show)

@catartist thank you for sharing. Yes it is take the steroids and deal with the side effects or don't take it and suffer with pain and chance of a relapse. I choose to take the steroids and deal with it.

suec147 | @suec147 | Jun 6 10:26am

In reply to @catartist "So you can’t get off Prednisone either - have you had any muscle wasting? How long..." + (show)

@catartist Yes, I can't get off prednisone. I just had a relapse and am now back up to 20mg daily. It is hard. It intensifies my tingling/pain, but also helps the pain. My muscles in my legs and glutes seem to be the first of the muscle wasting. My strength has gone too. Rituxan gave me really, really bad mood swings. It was to the point my poor husband would come home from work and take a few minutes in the truck before coming into the house. My dr took me off it right away. I never tried methotrexate. What is that used for?

catartist | @catartist | Jun 6 11:51am

In reply to @suec147 "@becsbuddy Good to know about trying rituxan again. I may bring the suggestion up to my..." + (show)

I am too! First contact with ANYone with similar issues ( muscle wasting )
Can’t tell you!

catartist | @catartist | Jun 6 12:03pm

In reply to @suec147 "@catartist Yes, I can't get off prednisone. I just had a relapse and am now back..." + (show)

Methotrexate is a first go to with RA ( only my liver wouldn’t let me 30 years ago - I can tolerate it now!?). It’s a disease modifying drug ( like hydroxicloriquim ) supposed to slow it - did well for years but ‘they’ decided I’d been on it long enough. Metho. Is strong med but I have had no side effects( that I didn’t already have!). I am on biological Orencia too ( only safe one for me). But addicted to pres. Apparently. Never warned about this 49 years ago when started for asthma !! U asked!! ( asthma broke out the RA once while in hospital for 4 days. Goody!
Any tips on muscle wasting from your Drs? I do PT and attempt to walk with sitable walker outside now that it’s nice. But little energy - can’t go long or far.
I am getting back to stationary bike and upper arm movements . Both rotator cuffs are damaged sore and weak so PT on those too. YOU ?
I am missing all gluts except the Maximus so need my arms. ( hands have had muscle loss for years ). YOU?

catartist | @catartist | Jun 6 12:07pm

In reply to @suec147 "@catartist thank you for sharing. Yes it is take the steroids and deal with the side..." + (show)

Me too - no choice - but the wasting will kill me sooner - or later. Hits lungs and heart - all muscles. NO one can tell me when - hard to make plans. (Have moved in with our daughter ( wee wing being built - so fortunate - want to avoid ‘homes’ forever if possible. ! Grand kids lives good on emotions!)

Becky, Volunteer Mentor | @becsbuddy | Jun 6 1:06pm

I think it’s time that we got some of our older/had clippers for longer members to come back to answer some questions! Asking @mikedmc27 @astanko @benjaminuk and @littlecactus if you could tell new members how you're doing and answer some questions!

Ame | @astanko | Jun 6 2:32pm

In reply to @becsbuddy "I think it’s time that we got some of our older/had clippers for longer members to..." + (show)

Hi, I'm here! Thanks for pinging me Becky. I'm just back from 4 weeks of traveling, averaging 10k steps per day - whew! I am doing great, my next Ruxience infusion is in early July. Pro Tip: if you're getting infusions every six months, don't do them in June & December. Why? December is crazy busy with people needing to get their appointments in within the insurance calendar year. MUCH better to get on a January/July schedule. I also have A LOT to say about saving money on infusions, I'll gather that info for a post in the coming weeks.
In the meantime , I'll parse through things and catch up, I'm happy to answer anyone's questions any time.

mikedmc27 | @mikedmc27 | Jun 6 10:41pm

In reply to @becsbuddy "I think it’s time that we got some of our older/had clippers for longer members to..." + (show)

Hello, I have been working my tail off to get back to walking and talking normally. I'm on average hitting 5 miles a day walking. considering April 20th i was admitted to the ER barley walking and had slurred speech. i did 5 days of IV steroids. I'm now on 50mg of oral steroid. On Monday I will see my nuerologist. (DR. Rabin in AZ ) I will start the weaning process. i have passed my pet scan, spinal tap and MRI. will get the results of the MRI monday also. I have not decided or spoke to the DR. yet about the steroid sparing agent. Bill crum has been on his for over 12 years, so theres some good data on that one. I will keep you all posted. also i hope everyone else is crushing it! we aren't in the ground yet!! stay strong everyone!!

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