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 group.

@movingtomadison

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?

Jump to this post

@movingtomadison How have you been doing? I last heard from you a week ago and would love to touch base. Becky

REPLY
@becsbuddy

@movingtomadison How have you been doing? I last heard from you a week ago and would love to touch base. Becky

Jump to this post

thanks – after being brave and honest about having clippers and getting here to meet you all, I retreated… too much painful honestly. So – I threw myself into a fundraiser for daughter's school to avoid thinking about Clippers for a few weeks. now I'm getting prepared to come back in…. I find this part of my identity very difficult to integrate – and so – this is a long journey of leaning in.. and leaning out/denial… thanks for being patient with me…

REPLY
@movingtomadison

thanks – after being brave and honest about having clippers and getting here to meet you all, I retreated… too much painful honestly. So – I threw myself into a fundraiser for daughter's school to avoid thinking about Clippers for a few weeks. now I'm getting prepared to come back in…. I find this part of my identity very difficult to integrate – and so – this is a long journey of leaning in.. and leaning out/denial… thanks for being patient with me…

Jump to this post

@movingtomadison integrating is so difficult! I wanted people to see me as I was, not as someone with a chronic illness that affected everything. But, now, I realize that these are my friends and they help me when needed.
I’ve also stopped calling the illness, Clippers. To me, it sounds dumb. My neurologist calls it lymphoproliferative disorder but I say I have some lesions on my brain. Then I don’t need to explain.
I work with a therapist, too. She’s been very good in helping me deal with everything. Guess we need to keep on keeping on!

REPLY
@becsbuddy

@movingtomadison integrating is so difficult! I wanted people to see me as I was, not as someone with a chronic illness that affected everything. But, now, I realize that these are my friends and they help me when needed.
I’ve also stopped calling the illness, Clippers. To me, it sounds dumb. My neurologist calls it lymphoproliferative disorder but I say I have some lesions on my brain. Then I don’t need to explain.
I work with a therapist, too. She’s been very good in helping me deal with everything. Guess we need to keep on keeping on!

Jump to this post

Have you looked into Boswellia? It's anti-inflammatory effects extend to the brain. It's been used to reduce the pressure caused by brain cancer. Combining it with curcumin has a synergistic effect that makes them both even more effective. Also, they don't negatively impact bones the way other anti-inflammatories can.

REPLY

Hi there! Im a 31 yearnold women from europe who recently got told that i most likely have clippers syndrome. Ive had one episode were i was in hospital for a week to get high dose of cortisol. Im still on cortisol but they are gonna try to get me off it as they mean that's the only way to see if the episodes comes back or if im lucky that was one time only… now to my question.. im terrified what will happen once I go down to under 10mg of cortisol and wonder if anyone has gone through the same? What can I expect, same as last or worst? I still struggle to pee for example and had for 5 weeks a catheter and now im using sticks to empty myself several times a day… best regards

REPLY
@sweetpeanutbunny

Hi there! Im a 31 yearnold women from europe who recently got told that i most likely have clippers syndrome. Ive had one episode were i was in hospital for a week to get high dose of cortisol. Im still on cortisol but they are gonna try to get me off it as they mean that's the only way to see if the episodes comes back or if im lucky that was one time only… now to my question.. im terrified what will happen once I go down to under 10mg of cortisol and wonder if anyone has gone through the same? What can I expect, same as last or worst? I still struggle to pee for example and had for 5 weeks a catheter and now im using sticks to empty myself several times a day… best regards

Jump to this post

Hello @sweetpeanutbunny and welcome to Mayo Clinic Connect. I am so glad you found this group! I, too, have clippers—was diagnosed 4 years ago and undiagnosed for a year before that. Doctors had never heard of it or seen what the MRI showed. I was also given the height doses of steroids and then transferred to a rehabilitation center for a month. I’m better now but still on oral steroids. The doctors put me on Mycophenolate mofitil —a replacement for steroids. It has been a long road for me.
When you come off of the steroids (cortisol), you must come off slowly and be monitored carefully (usually by MRI) to see if the inflammatory lesions return. When mine started coming back, i could feel myself “sliding backwards” and knew i had to get help right away. This time i was given rituximab, a monoclonal antibody. It’s been given to many clippers patients it’s great success. Not for me. The drug quit working after 18 months, so i was put on cyclophosphamide which did the trick. Now I’m on Mycophenolate mofitil and prednisone only. I’ve tapered to 5mg of prednisone and so far so good. I have an MRI next week so we’ll see. I will look for some of the articles that i have on clippers so you can study them. You want to be well educated when you talk to the doctors!
Please take care of yourself and just take it slow.
Did you have a brain biopsy to confirm clippers?

REPLY
@becsbuddy

Hello @sweetpeanutbunny and welcome to Mayo Clinic Connect. I am so glad you found this group! I, too, have clippers—was diagnosed 4 years ago and undiagnosed for a year before that. Doctors had never heard of it or seen what the MRI showed. I was also given the height doses of steroids and then transferred to a rehabilitation center for a month. I’m better now but still on oral steroids. The doctors put me on Mycophenolate mofitil —a replacement for steroids. It has been a long road for me.
When you come off of the steroids (cortisol), you must come off slowly and be monitored carefully (usually by MRI) to see if the inflammatory lesions return. When mine started coming back, i could feel myself “sliding backwards” and knew i had to get help right away. This time i was given rituximab, a monoclonal antibody. It’s been given to many clippers patients it’s great success. Not for me. The drug quit working after 18 months, so i was put on cyclophosphamide which did the trick. Now I’m on Mycophenolate mofitil and prednisone only. I’ve tapered to 5mg of prednisone and so far so good. I have an MRI next week so we’ll see. I will look for some of the articles that i have on clippers so you can study them. You want to be well educated when you talk to the doctors!
Please take care of yourself and just take it slow.
Did you have a brain biopsy to confirm clippers?

Jump to this post

@sweetpeanutbunny I found this article that talks about clippers and rituximab.
https://nn.neurology.org/content/5/3/e448
The other articles were more serious intellectual articles, but i can post them if you wish. Becky

REPLY
@becsbuddy

Hello @sweetpeanutbunny and welcome to Mayo Clinic Connect. I am so glad you found this group! I, too, have clippers—was diagnosed 4 years ago and undiagnosed for a year before that. Doctors had never heard of it or seen what the MRI showed. I was also given the height doses of steroids and then transferred to a rehabilitation center for a month. I’m better now but still on oral steroids. The doctors put me on Mycophenolate mofitil —a replacement for steroids. It has been a long road for me.
When you come off of the steroids (cortisol), you must come off slowly and be monitored carefully (usually by MRI) to see if the inflammatory lesions return. When mine started coming back, i could feel myself “sliding backwards” and knew i had to get help right away. This time i was given rituximab, a monoclonal antibody. It’s been given to many clippers patients it’s great success. Not for me. The drug quit working after 18 months, so i was put on cyclophosphamide which did the trick. Now I’m on Mycophenolate mofitil and prednisone only. I’ve tapered to 5mg of prednisone and so far so good. I have an MRI next week so we’ll see. I will look for some of the articles that i have on clippers so you can study them. You want to be well educated when you talk to the doctors!
Please take care of yourself and just take it slow.
Did you have a brain biopsy to confirm clippers?

Jump to this post

They are taking me off the cortisol slowly and I have a good doctor that does her follow up with me and there's an MRI booked for March. I'm coming down to 10mg prednisone then 24 of Jan and will see my doctor around that time as well. I feel safe and well looked after so thats all good but im as you can guess and understand concerned as to what could happen when the dose is lowered. So far they haven't done or even mentioned a brain biopsy but in the papers from the MRI second one that I did recently it states that they firmly believe it to be Clippers so not sure if brain biopsy is something they will consider if it comes back? On my second MRI done 16th december everything seems to be fine again, doctor said that everything gone back. Is that normal for Clippers?

Thanks for the articles, ive read some online but always good to read more! Also thank you for replying to me and giving me your story and advice. Best regards

REPLY
@sweetpeanutbunny

They are taking me off the cortisol slowly and I have a good doctor that does her follow up with me and there's an MRI booked for March. I'm coming down to 10mg prednisone then 24 of Jan and will see my doctor around that time as well. I feel safe and well looked after so thats all good but im as you can guess and understand concerned as to what could happen when the dose is lowered. So far they haven't done or even mentioned a brain biopsy but in the papers from the MRI second one that I did recently it states that they firmly believe it to be Clippers so not sure if brain biopsy is something they will consider if it comes back? On my second MRI done 16th december everything seems to be fine again, doctor said that everything gone back. Is that normal for Clippers?

Thanks for the articles, ive read some online but always good to read more! Also thank you for replying to me and giving me your story and advice. Best regards

Jump to this post

@sweetpeanutbunny As I’ve been finding out over time, there seem to be several forms of Clippers. If you use Facebook, there is a private group called Clippers support group. You may want to check them out. In the meantime, i will look for the discussion on tapering off prednisone. But, here on Mayo Connect, you can ask questions about any health issue and get answers and personal experiences.
Do you have any special relaxation techniques that you use to manage your anxiety?

REPLY

Greetings! Newly diagnosed CLIPPERS patent here. I'm happy to have found this forum and hope to share and gain lots of valuable info. I'm just a few days home from the hospital and my vision is quite bad so I'll be back in future days to tell my story and read more about all of yours. Basically, I'm a fairly fit 55 year old who suddenly came down with facial, hand and left leg numbness and weakness followed by double vision, loss of balance and increasing fatigue. Initially we got a false positive for Lyme disease so I did a 21 day course of Doxycycline but my symptoms came right back and I was hospitalized. I started high-dose IV Salumedrol and now I'm discharged and "pulsing" on high-dose oral Prednisolone at home, tapering down over the next few weeks. So far the steroids have been a miracle with each day bringing a diminishment of symptoms. The diplopia and nystagmus are the last ones still hanging on but getting better. The challenge now will be learning to live on steroids. I'm so happy to have found you, thank you! I'll write more as the story unfolds and my eyes improve. If anyone wants to connect on Instagram you'll find me @amestanko. Best wishes and gratitude ~ Ame in San Diego, CA.

REPLY
Please sign in or register to post a reply.