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?

Hi Becky,
I had a similar experience with vomiting and gall bladder removal, then an MRI which showed the pattern of Clippers. I’m on Prednisolone and Immunosuppressants at the moment. Have you had success with any treatments? By the way, I live in Sydney and am treated by a fantastic neurologist who has a lot of knowledge about Clippers.
Regards,
Jane

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@janegm

Hi Becky,
I had a similar experience with vomiting and gall bladder removal, then an MRI which showed the pattern of Clippers. I’m on Prednisolone and Immunosuppressants at the moment. Have you had success with any treatments? By the way, I live in Sydney and am treated by a fantastic neurologist who has a lot of knowledge about Clippers.
Regards,
Jane

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@janegm Good morning! Welcome to MayoClinicConnect! We’re an online community of people worldwide who share similar experiences and information and support each other. I’m so glad you found us! I was treated with CellCept and steroids but now I’m on rituxan every six months and I’m tapering off the steroids. They really helped but I developed bad osteoporosis. Have you been able to resume your normal life? What has changed for you?

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Thank you for your inspiring post, Becky. One of the most frustrating aspects of being diagnosed with a chronic illness is the patient effort required to persuade a doc "to think outside the box". Kudos for your health improvement and reminder for us all to become strong patient self-advocates.

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Hello, my husband was diagnosed with Clippers at Mayo Clinic 4 years ago. His symptoms were double vision and off balance, slept all day. They started him with Prednisone 60mg and Imuran and when the inflammation was gone and tapered him to 0 prednisone it would come back.needless to say that this Med has caused all kinds of terrible effects in his body.
We read an article about a Dr in Chicago that had done a study with Retuximab infusions for Clippers that helped to
Bring down the inflammation m. I got in touch with her and working locally with my dr, we did 2 infusions that have worked. He had them done in March, 2 weeks apart from
Each other and since then NO INFLAMMATION! He is on 9 miligrams of daily prednisone and no Imuran
He needs to be checked with a lab, a CD 19 to see if the inflammation is coming back, in order to have more infusions
You are right, I am the one pushing and pushing Drs, if you feel you need an MRI or whatever you need to discuss and press, do it. Now a days Drs don’t want to be bothered. One thing I’ve learned is to not let this inflammation go unattended because it causes bad lesions in the brain.
The first neurologist we ever went to see to know what was happening with my husband was terrible, she did and
MRI without contrast and showed nothing and told us that
His problem was with the ear (off balance) and we lost time, with me trying to look for answers with the Internet and booking with Mayo.
Lots of luck to everyone, and I wish you an fast remission.

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@balagan111

Hello, my husband was diagnosed with Clippers at Mayo Clinic 4 years ago. His symptoms were double vision and off balance, slept all day. They started him with Prednisone 60mg and Imuran and when the inflammation was gone and tapered him to 0 prednisone it would come back.needless to say that this Med has caused all kinds of terrible effects in his body.
We read an article about a Dr in Chicago that had done a study with Retuximab infusions for Clippers that helped to
Bring down the inflammation m. I got in touch with her and working locally with my dr, we did 2 infusions that have worked. He had them done in March, 2 weeks apart from
Each other and since then NO INFLAMMATION! He is on 9 miligrams of daily prednisone and no Imuran
He needs to be checked with a lab, a CD 19 to see if the inflammation is coming back, in order to have more infusions
You are right, I am the one pushing and pushing Drs, if you feel you need an MRI or whatever you need to discuss and press, do it. Now a days Drs don’t want to be bothered. One thing I’ve learned is to not let this inflammation go unattended because it causes bad lesions in the brain.
The first neurologist we ever went to see to know what was happening with my husband was terrible, she did and
MRI without contrast and showed nothing and told us that
His problem was with the ear (off balance) and we lost time, with me trying to look for answers with the Internet and booking with Mayo.
Lots of luck to everyone, and I wish you an fast remission.

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@balagan111 Welcome to MayoClinicConnect. This is an online information and support group for those with health issues. We’re not doctors, but we try to share experiences and support each other. I’m so sorry that your husband has also gotten Clippers. But he has you as an advocate! Great! This is a very good article about using rituxan for Clippers. My brother-in-law, who is a toxicologist sent it to me and I gave it to my doctors. https://nn.neurology.org/content/5/3/e448. I’ve had infusions every six months given at an chemotherapy infusion center . So far, so good. MayoClinicConnect has been very good for getting information about handling the myriad of symptoms like vision problems, balance problems, etc. Be sure to check out the other groups and discussions. I have a feeling that you can be of great help to others! Will you stay in touch and let us know how both of your are doing?

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@becsbuddy

@balagan111 Welcome to MayoClinicConnect. This is an online information and support group for those with health issues. We’re not doctors, but we try to share experiences and support each other. I’m so sorry that your husband has also gotten Clippers. But he has you as an advocate! Great! This is a very good article about using rituxan for Clippers. My brother-in-law, who is a toxicologist sent it to me and I gave it to my doctors. https://nn.neurology.org/content/5/3/e448. I’ve had infusions every six months given at an chemotherapy infusion center . So far, so good. MayoClinicConnect has been very good for getting information about handling the myriad of symptoms like vision problems, balance problems, etc. Be sure to check out the other groups and discussions. I have a feeling that you can be of great help to others! Will you stay in touch and let us know how both of your are doing?

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Hi Becky, that is the article I read that prompt me to call Dr Veronica Cipriani, the author. Very very nice lady!
Thank you so much and hope you all are finding something to make you all be better. Please please don’t forget to share!

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Hi, again. I’m just wondering if any of you also experience up and down days like I do? I had 2 very good days, lots of energy, etc. Today , I’m very slow and “under the weather”. Course, it. Could just be the weather! We had two warmish, beautiful days and now it’s going to snow. Forget the weather! I have down days every week and just wondering if you do also. Becky

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Just wondering how everyone is doing @balagan111 , @fiesty76 , @janegm . When I told the doctor that I was totally running out of steam, he commented “sounds like you need some rituxan”. I’m scheduled for Dec. 31 if insurance approves it again. Mostly, I’m wondering if your doctors have mentioned anything about the course of this disease. Is there anything new in research?

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Hi, I have been on Rituximab for about five years. It has basically been a life saver for me. My Lupus has gone into remission thanks to the Rituximab. About two weeks after I get the infusion it is like a veil has been lifted off my body. I sure hope it works for you!

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@janegm @balagan111 @fiesty76 Good morning! I’m in the process of tapering off steroids. I’m now at 8mg per day and am feeling OK. (still on rituxan) Has anyone totally come off prednisone? Any problems?

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Hi, Becky, I haven't been diagnosed with Clippers. I was given very strong antibiotics for the Diverticulitis but no steroids. Hope you continue to feel ok with the tapering off of steroids. These chronic conditions can a bear. So glad you found some help for the Clippers. From your earlier ordeal, it sounds like a miracle that you are still with us! So glad you are!!!

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Hello, again @janett18 @janegm @balagan111 I’m just checking in to see how you all are doing and if you’ve been able to keep your clippers under control. Thank heavens for prednisone and rituxan! But, speaking of prednisone, it makes me gain weight so I’ve started this virtual walking group on MayoClinicConnect. Mayo Clinic has a 12week get started plan but they don’t have someone to motivate me. And with our snow, ice and cold, I need motivation! https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/ I hope you’ll take a few minutes to go to the site and seriously consider joining me. Becky

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@becsbuddy

@janegm @balagan111 @fiesty76 Good morning! I’m in the process of tapering off steroids. I’m now at 8mg per day and am feeling OK. (still on rituxan) Has anyone totally come off prednisone? Any problems?

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Hi Becky – for the last 8 years, it has been a high of 60mg, down to a low of 5 mg prednisone a day and always 12.5 mg of methotrexate per week. For me, I have had 3 flares, due to going lower than 5mg prednisone per day. I'm now on 7.5 mg per day for the last 1.5 yrs and stable, with the methotrexate. You posted in January.. it's November… How did your tapering go?

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@movingtomadison, welcome to the CLIPPERS support group. Allow me to introduce you to @becsbuddy @janett18 @janegm @balagan111 and others.

Madison, I'd love to hear more about your CLIPPERS journey. Did it take a journey of searching to finally get the diagnosis of CLIPPERS? I see you are stable with your current treatment regimen. Do you experience up and down days?

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@movingtomadison Let’s meet in this already established group! There are others who may want to share with us
Becky

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