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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)Comment receiving replies
Hello, Jessica here. I got diagnosed with CLIPPERS back in Nov of 2020, so I am going on two and a half years. I wish I could say I have made a full recovery, but unfortunately that has never really been the case. My tapper was slow because if I started coming off it to quickly everything would just start right back up. I am currently down to 2.5 mg (YAY!!!). My MRI'S have shown little to no change in the past two years, but my current dosage is keeping things at bay. Currently still having trouble walking and I completely loose control of my left leg multiple times a day. Falls have become a normal occurrence. My doctor is looking into if CLIPPERS isn't masking something else. Has anyone else had this scenario? I keep hearing about how people are "back to normal" in a matter of months, and I wonder if I am not strange. I don't mean to sound negative, I love to hear from everyone.
Replies to "Hello, Jessica here. I got diagnosed with CLIPPERS back in Nov of 2020, so I am..."
Hi Jess
So sorry to hear about your struggles. I’m 1 year into this bad boy. I’m still tapering off my steroids currently at 9mg with a side dish of 1g of Myfortic 2 x daily. I to thought my progress was very slow and I was incredibly frustrated however my physio did keep asking me to remember where I was to now. It’s a long hard road as u know but it’s great you have found this wonderful group of people. They were a life saver for me. I’m getting there slowly but steadily. Back to work although not to the same capacity I was previously. I drove for the first time today without any issues.
As you said it’s a slow recovery but hopefully doable. It sounds like you’re on the right track. Keep ahowld and anything I can do to help please let me know
All the best
Dusty
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@jcu As a fellow member, @dustymi11er ,would say, “welcome to another clipperati”! I’m sorry that you’re dealing with this. It’s not fun, but its do-able. And you can do it!!
What speciality of doctor are you seeing? I just worry that you’re not on immunosuppressants, like CellCept or Myfortic. The fact that you’re having trouble walking really means you’re not on adequate drugs.
As for being back to normal in a few months—I’m in year 6. Most people would say that I’m “back to normal”, but . . . . I use a cane when walking and many days I don’t drive and always need a nap.
Can you ask your doctor about the immunosuppressants?