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Becky, Volunteer Mentor (@becsbuddy)

CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Nov 4 11:04am | Replies (75)

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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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Replies to "Hello, my husband was diagnosed with Clippers at Mayo Clinic 4 years ago. His symptoms were..."

@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?