1. < Autoimmune Diseases
Mentor

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.

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jun 4 12:09pm
In reply to @donnyboy "@JustinMcClanahan Justin, Good to see a post from a Moderator! And hello, on a bright and..." + (show)
@donnyboy

@JustinMcClanahan

Justin, Good to see a post from a Moderator! And hello, on a bright and sunny morning in the Albany NY area. Since I'm still puzzled about how MC Connect works, can I ask you what a moderator does, that distinquishes you from a regular poster? Don

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Hello @donnyboy, I am glad you asked. Here is a resource that you may find helpful that explains in a bit more detail what moderators do, the role of mentors and how Mayo Clinic Connect works overall, https://connect.mayoclinic.org/blog/about-connect/tab/moderators/.

REPLY
donnyboy | @donnyboy | Jun 4 12:49pm

@JustinMcClanahan
@JustinMcClanahan
Justin, thanks so much! I hadn't seen these descriptions of how MS Connect works, even though they are right there in the Help section. Don't ask me why I never looked! The possibility of private messages is nice, but are not these also accessible to the general public via the internet? And profiles, do many Connect posters bother with them? I see that only a very few brave individuals, such as yourself, include their photo. I don't see a reason why I would go to Members, or care if my profile there is left blank. Am I missing something? Don

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 4 1:35pm
In reply to @donnyboy "@becsbuddy Hi Becky, How has your treatment with rituximab infusions gone so far? Do you have..." + (show)
@donnyboy

@becsbuddy

Hi Becky,
How has your treatment with rituximab infusions gone so far? Do you have a schedule of infusions going into the future? Did you need to go off prednisone to get started with it, and if so how did that go? Have you begun an accompanying medication to go with the infusions? Pardon all the questions! I ask because my neurologist has been talking for a month or two of this as a possibility for myself. I think she wants to get me stabilized on steroids before trying rituxcimab. You are the only person I've encountered who has gone this route. I guess it is relatively new.
Don

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@donnyboy Well, I’ve only had 1 infusion so far. Usual is to gives 2 doses 2 weeks apart and then repeat every 6 months. I had all that about 5 years ago and then had to stop rituxan. My next dose is Aug 7. I’m also on CellCept, which is a steroid sparing drug, does all the same as steroids without the bad side effects. And, no, I didn’t need to stop steroids to start rituxan. I’v had a real problem stopping them. The infusion usually takes about 3 hours because i ask the nurses to go slow. I have an article on rituxan that I’ll try to find.
Becky

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 4 1:46pm
In reply to @becsbuddy "@donnyboy Well, I’ve only had 1 infusion so far. Usual is to gives 2 doses 2..." + (show)
@becsbuddy

@donnyboy Well, I’ve only had 1 infusion so far. Usual is to gives 2 doses 2 weeks apart and then repeat every 6 months. I had all that about 5 years ago and then had to stop rituxan. My next dose is Aug 7. I’m also on CellCept, which is a steroid sparing drug, does all the same as steroids without the bad side effects. And, no, I didn’t need to stop steroids to start rituxan. I’v had a real problem stopping them. The infusion usually takes about 3 hours because i ask the nurses to go slow. I have an article on rituxan that I’ll try to find.
Becky

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Hi, again, Don, the article is in this neurology journal of May 2018.
https://www.neurology.org/
I’ve tried to get the correct url but it wouldn’t let me. The title is “Effective treatment of Clippers with long term use of rituximab”
https://www.neurology.org/doi/full/10.1212/NXI.0000000000000448# One of these might work!

REPLY
catartist | @catartist | Jun 5 8:37am
In reply to @becsbuddy "@suec147 You are in the Clippers group! You can read what others have said by going..." + (show)
@becsbuddy

@suec147 You are in the Clippers group! You can read what others have said by going to the top of this page of comments and tapping on ‘First’ on the line of page numbers (see the photo). There is a wealth of information in this group!
It sounds like you’ve had a difficult time. Are you seeing a neurologist?
Since you have been on steroids for a long time, you may want to add an endochrinologist to your list of doctors. They can follow you for bone health since steroids cause great trouble for your bones.

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Daily steroids every day cause muscle atrophy after years too. I am suffering from that now and lost shoulder and glute muscles - like a popped balloon! Hard to walk ( can’t get off steroids - too much pain -RA 35 years). Try NOT to be on steroids like this. No cure-

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1 reply
suec147 | @suec147 | Jun 5 12:48pm
In reply to @donnyboy "@becsbuddy Hi Becky, How has your treatment with rituximab infusions gone so far? Do you have..." + (show)
@donnyboy

@becsbuddy

Hi Becky,
How has your treatment with rituximab infusions gone so far? Do you have a schedule of infusions going into the future? Did you need to go off prednisone to get started with it, and if so how did that go? Have you begun an accompanying medication to go with the infusions? Pardon all the questions! I ask because my neurologist has been talking for a month or two of this as a possibility for myself. I think she wants to get me stabilized on steroids before trying rituxcimab. You are the only person I've encountered who has gone this route. I guess it is relatively new.
Don

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@don Hi this is Sue and I tried Rituximab and, unfortunately, it did not work. I was on this while still on steroids. My Neurologist will not take me off steroids. Every time I drop to 10mg or 5mg, I relapse.

REPLY
2 replies
suec147 | @suec147 | Jun 5 12:56pm
In reply to @becsbuddy "@suec147 You are in the Clippers group! You can read what others have said by going..." + (show)
@becsbuddy

@suec147 You are in the Clippers group! You can read what others have said by going to the top of this page of comments and tapping on ‘First’ on the line of page numbers (see the photo). There is a wealth of information in this group!
It sounds like you’ve had a difficult time. Are you seeing a neurologist?
Since you have been on steroids for a long time, you may want to add an endochrinologist to your list of doctors. They can follow you for bone health since steroids cause great trouble for your bones.

Jump to this post

@becsbuddy Hi Becky, it is Sue, Thank you for the guidance. I do have a Neurologist, who is excellent 🙂 and I also have an endrochrinologist, plus many others 🙂
I am in the process of recovery from a relapse, which attacked my left eye for the 2nd time.
I am blind in the right eye. It attacked my right eye 4 times in a row and the eye finally couldn't take any more inflammation. It's been about 2 years for the blindness.
I see my Nero Optomologist 6/12 and I am hoping they are willing to decrease me to at least 15mg.
Hope you are having a good day!

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 5 12:59pm
In reply to @suec147 "@Don Hi this is Sue and I tried Rituximab and, unfortunately, it did not work. I..." + (show)
@suec147

@don Hi this is Sue and I tried Rituximab and, unfortunately, it did not work. I was on this while still on steroids. My Neurologist will not take me off steroids. Every time I drop to 10mg or 5mg, I relapse.

Jump to this post

@suec147 same with me. I have trouble going lower than 3mg. I also failed on my first try with rituxan. It was just wonderful for the first year, but then……I’m trying it again (after 4 years) and it’s doing ok!

REPLY
2 replies
catartist | @catartist | Jun 5 1:15pm
In reply to @suec147 "@Don Hi this is Sue and I tried Rituximab and, unfortunately, it did not work. I..." + (show)
@suec147

@don Hi this is Sue and I tried Rituximab and, unfortunately, it did not work. I was on this while still on steroids. My Neurologist will not take me off steroids. Every time I drop to 10mg or 5mg, I relapse.

Jump to this post

Yes - I am like that - stuck at 5. Less and I curl up into ball of pain. Great choice - between horrid pain and possibly stopping further muscle myopathy anywhere. - probably too late anyway (78). addiction they say . Sorry you have this need to - saves you, then probably kills you. But I had 35 very active great years ( always some pain!).

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1 reply
catartist | @catartist | Jun 6 9:43am
In reply to @becsbuddy "@suec147 same with me. I have trouble going lower than 3mg. I also failed on my..." + (show)
@becsbuddy

@suec147 same with me. I have trouble going lower than 3mg. I also failed on my first try with rituxan. It was just wonderful for the first year, but then……I’m trying it again (after 4 years) and it’s doing ok!

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So you can’t get off Prednisone either - have you had any muscle wasting? How long on it? Bio? What does Rituxan do - never been oh that. Do you take methotrexate? Thanks for replying - feel so out on a limb alone! Chris

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