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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: 2 days ago | Replies (308)Comment receiving replies
Hello, I’m Mike from Arizona. I’m 2 weeks out of the hospital after 5 days of IV steroids. I was barely walking and had slurred speech. My neurologist sent me for MRI and the hospital neurologist gave me scans also confirming Clippers. I’m now on 50 mg of prednisone. Me and my family are searching for the best treatments moving forward. Also finding this group an getting to read about everyone else really helped. I will have lots of questions. Lol!! Also im 50 year old male. Its Been an emotional ride. My wife saved me. She got me to an awesome neurologist. Dr. Rabin.
Sending love and positive thoughts to everyone.
Replies to "Hello, I’m Mike from Arizona. I’m 2 weeks out of the hospital after 5 days of..."
@mikedmc27 Hi, MIke and welcome to Mayo Clinic Connect! I’m glad you found this small group. Your wife sounds awesome! She’s really taking charge and finding the right people and places for you. Lucky you!
I’m having trouble coming off prednisone. This is probably my 3rd time, at least! I’m also on Myfortic ( another form of CellCept), and I just had my 1st round of rituxan. I had tried rituxan earlier but it didn’t seem to work, so now I’m trying again. I’m able to do most things for myself, but, boy do I get tired! The biggest problem I had (and still do) is accepting all my limitations. I’m working on it, though!
What are you hoping for going forward?
I love Dr Rabin. Best to you!
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Hi Mike. I’m so sorry to hear about your struggle but I’m happy to help as much as possible. I’m 99% back to normal now after my tango with CLIPPERS. My treatment was high dose prednisone pulses followed by a looonngg taper down and infusions every 6 months with Rituxan or Ruxience (I’ve had both). BE super careful about falling (I had a bad fall at the beginning when my vision and balance were messed up and that didn’t help things). But now I feel great, I’m back to full time work, typing this from my spin bike at the moment and I’m headed out on a hiking vacation actually. I’ll be happy to answer questions as I have wi-fi the coming days. You should be able to find more of my story here too. My experience with CLIPPERS was that treatment works! It’s a long road but full of good things too. It was a big wake up call to get my life together and I’m better now than I was before. Take it one day at a time for now and have hope. As scary as it totally freakin’ is, there are great treatments.