I've been on Tysabri for 2 yrs & LOVE it! I'm as close to "whole" again as I've been for years. No fatigue, no new symptoms, no episodes, no shingles. (My episodes & anxiety seem to trigger shingles, such fun)
I injected Rebif for 2 yrs & had flu symptoms for 2 yrs. Then injected Copaxone for 3 yrs until I had an accident & actually injected a nerve & was left with permanent damage So I went on Ty.
Did I say how much I love Ty?? I've been JCV- until my last blood test a few days ago. I just saw the doc that day. I see him again in 2 weeks to discuss the next plan. My tieter is 2.5
My MS is worse in my spine than in my brain. I've said for a long time that if I lose my ability to walk, I can still have a life. I am successfully treating nerve ending pain, depression, major anxiety, PTSD, a herniated disc in my neck & tummy troubles from all of the Rx meds. I been on SSDI for 3.5 yrs now due to the MS. I could NOT stay awake. The fatigue was horrible. Some days the pain was horrible. The injection treatment was horrible. So Tysabri has been so wonderful.
Now I'm scared. I'm trying to figure out how one weighs the PML risk vs the other treatments that do not work as well as Ty. I HATE the thought of the big rebound episode if I quit Ty, the possible permanent damage from it or future episodes & the fatigue. After my last episode, I had shingles 3 times in 15 months. During those outbreaks, I was living on Hydrocodone & coating myself in Benadryl Gel. i'm an avid reader & once the fatigue took over my life, I couldn't enjoy reading because I would fall asleep. I read EVERYDAY now & have LOVED it again for the past 2 years.
I know you guys understand the issues & appreciate you "listening." But how in the world do I decide how much risk is too much risk? If I were alone, it would be different, but I'm married & feel like it's selfish to put my husband at risk of me winding up in a nursing home due to PML. I'm not afraid of the death part, lol, it's the severe cognitive disability aspect of PML. Thanks
I injected Rebif for 2 yrs & had flu symptoms for 2 yrs. Then injected Copaxone for 3 yrs until I had an accident & actually injected a nerve & was left with permanent damage So I went on Ty.
Did I say how much I love Ty?? I've been JCV- until my last blood test a few days ago. I just saw the doc that day. I see him again in 2 weeks to discuss the next plan. My tieter is 2.5
My MS is worse in my spine than in my brain. I've said for a long time that if I lose my ability to walk, I can still have a life. I am successfully treating nerve ending pain, depression, major anxiety, PTSD, a herniated disc in my neck & tummy troubles from all of the Rx meds. I been on SSDI for 3.5 yrs now due to the MS. I could NOT stay awake. The fatigue was horrible. Some days the pain was horrible. The injection treatment was horrible. So Tysabri has been so wonderful.
Now I'm scared. I'm trying to figure out how one weighs the PML risk vs the other treatments that do not work as well as Ty. I HATE the thought of the big rebound episode if I quit Ty, the possible permanent damage from it or future episodes & the fatigue. After my last episode, I had shingles 3 times in 15 months. During those outbreaks, I was living on Hydrocodone & coating myself in Benadryl Gel. i'm an avid reader & once the fatigue took over my life, I couldn't enjoy reading because I would fall asleep. I read EVERYDAY now & have LOVED it again for the past 2 years.
I know you guys understand the issues & appreciate you "listening." But how in the world do I decide how much risk is too much risk? If I were alone, it would be different, but I'm married & feel like it's selfish to put my husband at risk of me winding up in a nursing home due to PML. I'm not afraid of the death part, lol, it's the severe cognitive disability aspect of PML. Thanks
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