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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: 8 hours ago | Replies (324)

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@astanko

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.

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Replies to "Hi Mike. I’m so sorry to hear about your struggle but I’m happy to help as..."

Thank you.

Thank you for taking the time for a response. its greatly appreciated from my family . I'm ready to do the work and learn what ever I can. I have completed my second 5 mile walk as of yesterday. It really smokes me but i'm getting muscles back in my legs. that feels amazing!! I have my next follow up with the doc on june 10th. I will bring up Ruxience. Finding this thread has been emotional for me. finally getting to speak/read to other people that are going through it. enjoy the vacation!! p.s I grew up in Vista. small world.