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.

jimbontexas | @jimbontexas | May 30, 2023

I have a question is there a doctor I could take my husband to maybe at the Mayo Clinic that has treated several Clippers patients? Ours has only treated one and they didn't even diagnose it. They just gave the patient their 2nd treatment of Rituxan. I would like to find someone who is more familar with this.

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jimbontexas | @jimbontexas | May 30, 2023
In reply to @becsbuddy "Hello, @dustymi11er . I”m so glad you found Mayo Clinic Connect. Clippers is a frightening diagnosis..." + (show)
@becsbuddy

Hello, @dustymi11er . I”m so glad you found Mayo Clinic Connect. Clippers is a frightening diagnosis to receive, so I understand you feeling petrified. I was diagnosed 4 1/2 years ago and I had a really difficult start. I was on high-dose steroids but am now tapering off in favor of a drug that suppresses the immune system but without the bad side effects of steroids. My brain has been free of ‘lesions’ for over a year now, but i have to take the drugs forever. 🙁
I do have an article on Rituxan which i received twice. It’s a wonderful drug but it stopped working for me. Then i had 8 cycles of cytoxan (cyclophosphamide, a chemotherapy drug). As soon as it worked, i went onto Mycophenolate mofitil, the immune suppressant. It’s been a long road, but….. I’m getting better
I’m going to ask a few members, who have also said they have Clippers, and see what info they have. @janegm. @balangan111 @movingtomadison @ninamichelle @sweetpeanutbunny and @astanko
How are you doing now?

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I am curious as to where you live? We are are in Houston and I would gladly take my husband (the patient) to a doctor somewhere that has treated this with success? Also my husband is on steroids and is tapering down 10 mg. every 5 days. In what increments are you all tapering off the steroids?

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1 reply
jimbontexas | @jimbontexas | May 30, 2023
In reply to @menel "Hi, I want to share my journey with CLIPPERS, as it is again different from what..." + (show)
@menel

Hi, I want to share my journey with CLIPPERS, as it is again different from what I read above.

I was diagnosed with multiple sclerosis (MS) 2 years ago (2021) after having had double vision (diplopia) for almost a year. Unfortunately the ophthalmologist had no idea to link the diplopia to MS, so I have permanent eye sight loss at distances of 5 meters plus. That meant I could not drive, but luckily I got suitable glasses a year after diagnosis and can drive again.

My only symptom was the diplopia, so the neurologist was rather unsure of the MS diagnosis, which was discussed with me and I agreed with. I had another 'attack' of double vision in August 2021, which was diagnosed as optic neuritis. It which was treated successfully with high doses of cortisone. I had no further attacks, and had no indications of MS after extensive tests in September 2022. I decided to live as if I did not have MS.

I had an 'attack' again in January this year, was treated successfully with high doses of cortisone, and assumed it was optic neuritis again. I had to visit another neurologist and he diagnosed me with CLIPPERS.

I am now on methotrexate, 2.5mg 4 times a week, along with folic acid daily (methotrexate may deplete one's folic acid). I am monitored through blood tests (liver, kidney, etc.). The neurologist do not want to put me on long term cortisone as there are too many side effects.

As I understand, there are less than 1000 cases in the USA. My neurologist has 3 patients, I am the fourth. He says that many neurologists do not know about CLIPPERS.

My neurologist said that he cannot give me a prognosis as there is little reliable scientific research about the illness (it has only been described in 2010 by Pittock et al). I have read about the illness and have a number of article references about it. If someone is interested, you are welcome to contact me.

Kind regards.
Ria Nel

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I would love to know where your neurologist is that has had 3 patients. I would love to take my husband to one that has seen several patients. I am in Houston but would travel.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 30, 2023
In reply to @jimbontexas "I would love to know where your neurologist is that has had 3 patients. I would..." + (show)
@jimbontexas

I would love to know where your neurologist is that has had 3 patients. I would love to take my husband to one that has seen several patients. I am in Houston but would travel.

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@jimbontexas Welcome to Connect. There are so few clippers patients that most doctors don’t recognize the disease. I was diagnosed in 2018 and none of the doctors here recognized it. I’m really sorry because that is not good news. There is a doctor at the Mayo Clinic, Dr. Tobin.
I recently received this from another patient. You might look into it.
CLIPPERS Repository: There is an exciting new research programme in CLIPPERS starting at the Mayo Clinic. If you have been diagnosed with CLIPPERS you can contribute to the research.
At the Department of MS and Autoimmune Neurology at the Mayo Clinic, we are attempting to better understand the diagnosis of CLIPPERS, its causes, outcomes and appropriate treatments. To do this, we are enrolling patients, diagnosed with CLIPPERS, into an observational study. If you have already been diagnosed with CLIPPERS and are interested in participating, you will be contacted by a member of our research team to complete a questionnaire. With your permission, we will retrieve your medical records from your doctors, including MRI scans, and if possible brain biopsy specimens. We may also ask you for an additional blood test, although this is not required. If you are interested in participating in this study, please contact Dr. Oliver Tobin.

Contact Details:

W. Oliver Tobin, M.B. B.Ch., Ph.D.
Fellow, Department of Neurology
Assistant Professor of Neurology, Mayo Clinic College of Medicine
Secretary: 507-538-6414
Fax: 507-266-4419
Email: tobin.william@mayo.edu

The best way to get help from Mayo Clinic is through your physicians. Ask them to call for you and get the best protocol. Many times your doctors can provide treatment with their guidance. And you won’t have to go anywhere
I’ve been doing pretty well on 5mg prednisone and Myfortic. But we all have ‘bad days’. Like I’ve had a bad day since we returned from a trip on Sunday. I just try to do nothing and eventually I feel better. I see a neuro-immunologist at the University of Colorado hospital. I have virtual or in-person visits every 3 month.
Your husband is SO lucky to have you with him. Please let me know what you learn about possible doctors

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Ame | @astanko | May 31, 2023

Hi, @jimbontexas, what is your first name? My name is Ame Stanko and I live in San Diego. At the age of 56 I was brilliantly diagnosed within one month and treated. I've made pretty much a full recovery (so far ... knock on wood). I'd be happy to speak with you and your husband and share any info I can. I have a follow up meeting with my Neurologist next week actually. I'm at (619) 507-6176 (my number is all over the internet already due to my web business). I was treated with high doses of Prednisone starting March 16th and then weaned off by October 4th. I can't recall what my taper was, but I can look it up. I've kept notes all along. I've had several Rituxan infusions with another due at the end of June (Rituximab this time). My infusions have gone great, had one minor reaction the first time (got itchy ears) but the nurses were very proactive and after a break we continued with no problems. My last MRI showed only gliosis (scar tissue) ... NO white pin pricks of lesions. I have a few minor residual numb areas but really I'm okay. It was all a wake up call for me, so I'm taking much better care of myself then before what I call my brain accident. I suspect that my episode of CLIPPERS was brought on by environmental toxicity (cabinet stripping and painting chemicals) and a lowered immune system due to stress (we had just moved). Please feel free to call. Leave a message and I'll call you right back. Hang in there!

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 31, 2023
In reply to @astanko "Hi, @jimbontexas, what is your first name? My name is Ame Stanko and I live in..." + (show)
@astanko

Hi, @jimbontexas, what is your first name? My name is Ame Stanko and I live in San Diego. At the age of 56 I was brilliantly diagnosed within one month and treated. I've made pretty much a full recovery (so far ... knock on wood). I'd be happy to speak with you and your husband and share any info I can. I have a follow up meeting with my Neurologist next week actually. I'm at (619) 507-6176 (my number is all over the internet already due to my web business). I was treated with high doses of Prednisone starting March 16th and then weaned off by October 4th. I can't recall what my taper was, but I can look it up. I've kept notes all along. I've had several Rituxan infusions with another due at the end of June (Rituximab this time). My infusions have gone great, had one minor reaction the first time (got itchy ears) but the nurses were very proactive and after a break we continued with no problems. My last MRI showed only gliosis (scar tissue) ... NO white pin pricks of lesions. I have a few minor residual numb areas but really I'm okay. It was all a wake up call for me, so I'm taking much better care of myself then before what I call my brain accident. I suspect that my episode of CLIPPERS was brought on by environmental toxicity (cabinet stripping and painting chemicals) and a lowered immune system due to stress (we had just moved). Please feel free to call. Leave a message and I'll call you right back. Hang in there!

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@astanko. And @jimbontexas. I think it would be better and safer for you to communicate thru the private message section. You can exchange phone numbers in private messages and then safely call each other. Go to the top right hand corner of this page and click on the person icon. Then you can select the messages and click. Let me know if this works OK

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 3, 2023
In reply to @jimbontexas "I am curious as to where you live? We are are in Houston and I would..." + (show)
@jimbontexas

I am curious as to where you live? We are are in Houston and I would gladly take my husband (the patient) to a doctor somewhere that has treated this with success? Also my husband is on steroids and is tapering down 10 mg. every 5 days. In what increments are you all tapering off the steroids?

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@jimbontexas Oh, my goodness, I’m so sorry that I addressed you incorrectly! I apologize! My name is Becky and I do hope that the suggestions I’m giving you are helpful

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 5, 2023
In reply to @liztbnr "I would recommend GARD (Genetic and Rare Disease) organization in Maryland. They were very kind and..." + (show)
@liztbnr

I would recommend GARD (Genetic and Rare Disease) organization in Maryland. They were very kind and informative and provided me with a list of three CLIPPERS specialists that will provide a doctor-to-doctor
conversation between one of them and my reluctant GP when I see her on June 2. I am making copies of all things CLIPPERS for her. Here's hoping... lizbnr

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@liztbnr I’m anxious to hear bout your meeting on June 2! Do you feel more hopeful?

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1 reply
liztbnr | @liztbnr | Jun 7, 2023
In reply to @becsbuddy "@liztbnr I’m anxious to hear bout your meeting on June 2! Do you feel more hopeful?" + (show)
@becsbuddy

@liztbnr I’m anxious to hear bout your meeting on June 2! Do you feel more hopeful?

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As per expected, my NP wanted no part of handling my CLIPPERS. But I do have a referral from her to local neuro who I saw in the dim and dark past. He was briefly handling a clipperhead, but with the old tried and true method (pred), so he/she dropped out. Now, I have some serious help for him, and have a late July appointment. A slow slog indeed! Onward and upward (hopefully). liz

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1 reply
menel | @menel | Jun 21, 2023
In reply to @jimbontexas "Ria Nel, what part of the country are you in? I am in Houston area. I..." + (show)
@jimbontexas

Ria Nel, what part of the country are you in? I am in Houston area. I would be willing to take my husband for a consult to a doctor somewhere else if they had expierence in Clippers. My husband was diagnosed at MD Anderson Cancer Center in Houston and they are totally unfamilar with Clippers.

Jimbontexas

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Hi, unfortunately I am in South Africa, and my neurologist is in Johannesburg. If you need more details, please send me an email. I will communicate this privately

I do not know whether he does online consultations. My neurologist may be able to refer you to a neurologist close to you that will be able to assist.

Coming to South Africa from Houston is rather tedious. The OR Tambo International Airport is close to Johannesburg, but flights usually have 2 stop-overs: in Atlanta and in London Heathrow.

Please let me know whether you have any progress in your search and your husband's health?

Kind regards.

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