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.

Becky, Volunteer Mentor | @becsbuddy | Nov 3 3:00pm

In reply to @daneymae75 "I also was just diagnosed with clippers after a tetanus shot" + (show)

@daneymae75 Welcome to Mayo Clinic Connect! I see that you say you got covid after a tetanus shot. What symptoms did you have? Do you still have symptoms? What treatment are you having? It’s kinds of funny--everyone is on different meds! And we’ve all had different symptoms so we can add yours to the list!
Can you tell us a little more about yourself?

daneymae75 | @daneymae75 | Nov 8 8:28am

In reply to @becsbuddy "@daneymae75 Welcome to Mayo Clinic Connect! I see that you say you got covid after a..." + (show)

I did not get covid. I was diagnosed with clippers after having tetanus shot. Dizziness, neuropathy legs, hands, face. Muffled hearing right ear. Eye distortion left eye. Week of infusions done, now on 42 days of predisone (3 pills 14 days then 2 pills 14 days then 1 pill 14 days).spinal tap and mri done. Go to neurologist today concerning blood work and spinal tap for referral to immune neurologist

donnyboy | @donnyboy | Nov 9 12:09pm

@daneymae75
First time I've heard of a Clippers diagnosis after a tetanus shot. Perhaps you had some other symptoms, tests or treatment before the shot? In any event, since Clippers is a group defined by the helpfulness of prednisone in alleviating or limiting symptoms of Clippers, I would be cautious about tapering off it so quickly. I have been dealing with Clippers and its symptoms for a year now, and several attempts to taper off with the usual 5, 6, or 7 week draw down not only failed, but landed me back in the hospital for a week that included 5 daily high dosages of prednisone by IV. I am on 20 mg daily now, quite stable for the last 4-5 months. There are alternative medications I can try, but the docs and I are waiting to see how I do.

Don

daneymae75 | @daneymae75 | Nov 9 3:04pm

In reply to @donnyboy "@daneymae75 First time I've heard of a Clippers diagnosis after a tetanus shot. Perhaps you had..." + (show)

Yes no case studies yet with tetanus but are for flu and covid shot. Symptoms started next day after receiving shot. Yes neurologist said once I go down to 2 pulls a day if I get symptoms to let her know and I will have to rape slower. Probably be on for a year she said. Another mri scheduled. Spinal tap no lymphoma. Ms bloodwork pending

donnyboy | @donnyboy | Nov 9 4:10pm

In reply to @daneymae75 "Yes no case studies yet with tetanus but are for flu and covid shot. Symptoms started..." + (show)

@daneymae75
With Clippers, you need a neurologist who knows about it and how to treat you. Do you have that? And as you taper down, I would be sure to have ready access (same day) to someone who can increase your dosage level if your symptoms are worsening. Hope this works out for you.

daneymae75 | @daneymae75 | Nov 10 8:12am

In reply to @donnyboy "@daneymae75 With Clippers, you need a neurologist who knows about it and how to treat you...." + (show)

She never heard of clippers before but researched since.. she said once I rape to 40 mg (2 pills) if I notice symptoms to go back up to 2.5 and she will have taper me slower

donnyboy | @donnyboy | Nov 10 8:31am

In reply to @daneymae75 "She never heard of clippers before but researched since.. she said once I rape to 40..." + (show)

Good to hear. I believe it would be helpful for you to read as many postings about Clippers on Mayo Connect as you can. You need to do the research too, here and elsewhere! We don't have an established Clippers section on Mayo Connect (yet, I hope), so this may take some effort.

daneymae75 | @daneymae75 | Nov 13 10:09am

I was diagnosed with clippers in Oct 2024 after getting a tetanus shot in May. Symptoms started to appear. Neuropathy feet, legs, hands. Tingling down face. Dizziness when standing. Eye distortion. Muffled hearing of left ear. Then stumbling when walking and legs getting heavy and weak. Vibration in belly and back of neck or buzzing. Tired, headaches. Mri confirmed. Blood work done, spinal tap. Week of infusions of high dose predisone to reduce inflammation. Headaches and most symptoms went away. Still heaviness of legs and buzzing of neck. Predisone oral pills 3 pills x 14 days then 2 for 14 days then 1 pill 14 days. Started on 2 pills and Neuropathy of feet began again. Bone pain in legs and losing balance. Back up to 2.5 pills a day. Face swollen since predisone began. 2nd mri scheduled dec. Negative for Ms and lymphoma. Genetic testing scheduled. This disease tends to mimmick ms

vagondeck87 | @vagondeck87 | 2 days ago

I've been looking for answers since the end of May when I suddenly became dysphasiac. Doctors have conducted numerous tests including a brain biopsy, and finally today, I've been diagnosed with SLIPPERS. It's similar to CLIPPERS, but somehow even more rare. There are around 5 known cases worldwide.

I'm feeling really strange about it. I'm glad to finally have a diagnosis, but there is so little know about the disease that ot honestly doesn't feel much like putting a name to it gets me very far.

There's so much unknown still.