← Return to CLIPPERS: Looking to connect with others

Discussion

CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)

Comment receiving replies
@becsbuddy

Hello, @dustymi11er . I”m so glad you found Mayo Clinic Connect. Clippers is a frightening diagnosis to receive, so I understand you feeling petrified. I was diagnosed 4 1/2 years ago and I had a really difficult start. I was on high-dose steroids but am now tapering off in favor of a drug that suppresses the immune system but without the bad side effects of steroids. My brain has been free of ‘lesions’ for over a year now, but i have to take the drugs forever. 🙁
I do have an article on Rituxan which i received twice. It’s a wonderful drug but it stopped working for me. Then i had 8 cycles of cytoxan (cyclophosphamide, a chemotherapy drug). As soon as it worked, i went onto Mycophenolate mofitil, the immune suppressant. It’s been a long road, but….. I’m getting better
I’m going to ask a few members, who have also said they have Clippers, and see what info they have. @janegm. @balangan111 @movingtomadison @ninamichelle @sweetpeanutbunny and @astanko
How are you doing now?

Jump to this post


Replies to "Hello, @dustymi11er . I”m so glad you found Mayo Clinic Connect. Clippers is a frightening diagnosis..."

Hi becsbuddy

Graeme here

Just checking in it’s been a while but finally today I seen my new team of neurologists. I’m to taper off the 60mg steroids and from tomorrow I also start on mycophenolate. How are you finding it. The steroids have taken there toll so really pleased to be getting off them
Hope your well

Regards

G

I am curious as to where you live? We are are in Houston and I would gladly take my husband (the patient) to a doctor somewhere that has treated this with success? Also my husband is on steroids and is tapering down 10 mg. every 5 days. In what increments are you all tapering off the steroids?