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CLIPPERS: Looking to connect with others
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?
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@jcu As a fellow member, @dustymi11er ,would say, “welcome to another clipperati”! I’m sorry that you’re dealing with this. It’s not fun, but its do-able. And you can do it!!
What speciality of doctor are you seeing? I just worry that you’re not on immunosuppressants, like CellCept or Myfortic. The fact that you’re having trouble walking really means you’re not on adequate drugs.
As for being back to normal in a few months—I’m in year 6. Most people would say that I’m “back to normal”, but . . . . I use a cane when walking and many days I don’t drive and always need a nap.
Can you ask your doctor about the immunosuppressants?
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2 ReactionsHi Jess
So sorry to hear about your struggles. I’m 1 year into this bad boy. I’m still tapering off my steroids currently at 9mg with a side dish of 1g of Myfortic 2 x daily. I to thought my progress was very slow and I was incredibly frustrated however my physio did keep asking me to remember where I was to now. It’s a long hard road as u know but it’s great you have found this wonderful group of people. They were a life saver for me. I’m getting there slowly but steadily. Back to work although not to the same capacity I was previously. I drove for the first time today without any issues.
As you said it’s a slow recovery but hopefully doable. It sounds like you’re on the right track. Keep ahowld and anything I can do to help please let me know
All the best
Dusty
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2 ReactionsFantastic to hear from you again Ami. I’m so pleased your recovery has gone so well. You’re an inspiration to say the least. I’m quit a way from running however I have recently returned to work. Not as physical as I was but my confidence is improving no end getting out and about. Still tapering 1mg a month at a time now.
I’ve been checking your blog and really looking forward to reading how you get on. Keep up the good fight Ami and look forward to hearing from you soon
All the best
Dusty
Thank you so much! It is so helpful hearing from someone else. I am glad to hear your progress.
Thank you! My doctor is a neurologist, but I think I am the first case he has delt with. I will definitely bring this up with him. Thank you for the encouragement and sharing., It is so helpful.
Mayo Fl diagnosed me 12 years ago, was put on pred and have remained on it since. It was supposed to, hopefully, be a firewall, forget it. I started out using a cane and am now in need of walker/transporter/wheelchair. No doctors in AZ, as far as I know. I have called several, and I just get a puzzled response. "What? CLIPPERS?" No alternate meds suggested. Stone wall. My NP has no idea, a local neuro was same, as was the Mayo neuro in Scottsdale. I am just floating here, dizzy and bloated. And, yes, pretty much defeated.
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1 Reaction@liztbnr Oh, gracious, I can’t believe that you are unable to find a doctor! That’s terrible! Here is a link to an organization that collects info/resources on genetic and rare diseases. They have a section on finding a doctor, so please try calling them.
https://rarediseases.info.nih.gov/contact/
And you’ve been on prednisone all these years. A good doctor will help you taper off the prednisone and get you on a safe immunosuppressant . I have my ups and downs, but really, I’ doing pretty well on Myfortic, an immunosuppressant, and lo dose prednisone.
I’ll try to send you some articles on Clippers. This article is really excellent. https://nn.neurology.org/content/5/3/e448. Read it and let me know what you think.
Do you have a plan going forward?
I have zero plan because no medical folk in Tucson were knowledgeable of or willing to explore options. Not even the Mayo in AZ were interested. I could weep at how alone I have felt. I have been on my own, doing the best I could, hating my downward spiral and increasing dependence on my husband and friends. Thank you a million times for helping me see maybe a tiny light at the end of a dark tunnel. Liz
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3 Reactions@liztbnr, it can be so hard to advocate for your care and find a doctor who will work with you. You're alone in all this despite have the support of your husband and family. You don't want to be a burden. I get that.
I agree with @becsbuddy that the article she shared is excellent:
- Effective treatment of CLIPPERS with long-term use of rituximab https://nn.neurology.org/content/5/3/e448
Becky, I know that, like Liz, you had a long road before getting treatment that helped. Did you bring articles like this one to your doctor to help advocate for your care?
Liz, might sharing this article with your doctor open a new discussion about treatment options besides prednisone?
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2 Reactions@colleenyoung @liztbnr Yes, I took the articles with me to the doctors and told them that I wanted to try rituximab. I kept pushing and then when I had a downturn, they agreed and i got 2 doses of rituximab. Make an appointment with your rheumatologist and tell them that you’re fading away from this disease and you know there is treatment. Tell them you want to try rituximab and give them the article.
There must be some large medical centers in Tucson, so you can also call them. Enlist your husband’s help in making calls. And try Mayo Clinic again!
Think you can become your own advocate? I know you can!!
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