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.

@dustymi11er

Hi Becky
Sorry to hear of your loss hope you are well. I wasn’t told about taking my tablet before or after eating so I’ve been taking it with everything else as soon as eating in the morning. I’ll start taking it earlier now. They also didn’t mention side effects apart from staying away from long periods in the sun so I’ll ask the question at my next appointment in January. Unfortunately I’m not ready to go back to work yet but I do feel I’m getting better regarding walking and balance. Not using my stick around the house if I can help it. You were right about it being a slow recovery ❤️‍🩹. My face is still bothering me which always feels wet on the left hand side. I’ve been given amitriptyline 2 x per night but they are doing very little to reduce the symptoms. Just recovered from my first chest infection since going on the medication which was scary but I’m pleased it happened as am sure there are a few more to come this winter. I’ll certainly be keeping in touch Becky this forum has really helped me understand it’s not the end of my world getting diagnosed with clippers.

Regards

Graeme

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Evening all,
back in the ward after a bit of a stumble with my medication. I Was diagnosed with this belter earlier June after a week in hospital getting steroids for 3 days drip and then 60mg oral a day. my symptoms have been double vision, walking and gaite bad, a horrible wet feeling on the left of my face, trouble eating or drinking and swallowing, and hiccups. I was allowed home after a week and recently have started to cut down on my preds but haven’t coped to well. Went from 60mg to 40mg with a new immune suppressant myfenax to start at 500mg. Bloods every 2 weeks and down another 10mg on the pred if all is well every 2 weeks and up on the myfenax until stable on 1000mg and 20mg pred. Got to 30mg pred and 750mg myfenex when symptoms started returning. Walking with a stick ok still, swallowing is worse and dizziness returned quite bad but not double vision. Sorry for the long story, I’ve nothing to do on the ward and I ain’t paying £10 a day for rubbish tv 😳. Question b4 I see the consultant, do you think I’ve came off the pred to quickly, seems most come off 5mg or 2.5mg at a time. 20mg in 1 leap seems abit steep. Thoughts and questions most welcome. Have a good night

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@dustymi11er

Evening all,
back in the ward after a bit of a stumble with my medication. I Was diagnosed with this belter earlier June after a week in hospital getting steroids for 3 days drip and then 60mg oral a day. my symptoms have been double vision, walking and gaite bad, a horrible wet feeling on the left of my face, trouble eating or drinking and swallowing, and hiccups. I was allowed home after a week and recently have started to cut down on my preds but haven’t coped to well. Went from 60mg to 40mg with a new immune suppressant myfenax to start at 500mg. Bloods every 2 weeks and down another 10mg on the pred if all is well every 2 weeks and up on the myfenax until stable on 1000mg and 20mg pred. Got to 30mg pred and 750mg myfenex when symptoms started returning. Walking with a stick ok still, swallowing is worse and dizziness returned quite bad but not double vision. Sorry for the long story, I’ve nothing to do on the ward and I ain’t paying £10 a day for rubbish tv 😳. Question b4 I see the consultant, do you think I’ve came off the pred to quickly, seems most come off 5mg or 2.5mg at a time. 20mg in 1 leap seems abit steep. Thoughts and questions most welcome. Have a good night

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@dustymi11er oh, I’m so sorry that you’re in the hospital. This AD can be a real puzzle to work with—I still feel that way. One day you’re fine, or think you are, and the next day, you’re back to square one. And then, you’re supposed to taper the prednisone! Aaagghhh. A prednisone taper needs to be slow and steady. Your body needs time to adjust to each reduction in dose. I learned that the hard way, like you. I’m now reducing by 1 mg a week. It’s much easier.
Yes, talk to your consultant. They aren’t the ones taking the steroids, you are! Be your own advocate!
Be sure to let me know how things go.

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@dustymi11er Here are some good articles to read. Most of the info is over my head, but . . . .
https://nn.neurology.org/content/5/3/e448
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6410928/
I met with my neurologist’s assistant today and she agreed that some people can taper steroids quickly, but for others, like me, slow is the way to go. Just speak up with your consultant and the taper is too fast.
Try it!
I responded to you on the Fb group today, Graeme!

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@becsbuddy

@dustymi11er Here are some good articles to read. Most of the info is over my head, but . . . .
https://nn.neurology.org/content/5/3/e448
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6410928/
I met with my neurologist’s assistant today and she agreed that some people can taper steroids quickly, but for others, like me, slow is the way to go. Just speak up with your consultant and the taper is too fast.
Try it!
I responded to you on the Fb group today, Graeme!

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Hi all. That’s me back home. I got my mri results and they showed a massive improvement. Still a way to go but shows the meds are working. I’ve upped my myfenex to 1000mg day and night and we’re going for 30mg pred cut down 10 mg a month until at 10mg then see where we go from there. Hit the specialist with a number of alternatives which he is going to have a look into especially the cytoxan and immuran as well as the . Will see how I get on with the myfenax over the next few months. Thanks again for all the help and support on here. You’re all been great 👍

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@astanko

Greetings All! I wanted to tell you that I get a daily update from this forum and I always read what you all have added. I've gone back to work full time after being unable to work for 5 months so I've been quite busy but your info and updates mean the world to me. In an attempt to share my own knowledge, I've started a blog on Caring Bridge. It's a free site and I'm still trying it out but it seems to work well for my purposes. I've taken detailed notes all along the way since I started having symptoms on Feb. 9th of this year (2022). I am in very good shape now, very actively managing nutrition and fitness in an effort to manage all of the symptoms and create the best future possible. Feel free to check out my blog, I have a plan to add a new entry every week now that it's set up: https://www.caringbridge.org/visit/myclippersadventure.

I called it an "adventure" not to minimize the seriousness of having a brain disease but in an effort to make it less scary. In a way, all of life is an adventure and all we can do is make the most of the ride. Whenever I post an update I'll pop in here to let you know.

Best wishes! ~ Ame in San Diego, CA.

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Keep up the good work Ame. Great to see you’re doing so well. Keeps me in the fight 💪😬

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