Hello everyone,
I was diagnosed back in 2006 PPMS when I could barely walk. Started Copaxone and steroid infusions and it was like night and day. However, had to stop Copaxone for about 16 months. When I got back on Copaxone I was also getting monthly "booster" steroid infusions. Have now had to stop steroids because of reactions - body telling me its had enough. That was 18 months ago or longer and my walking has deteriorated. Neuro wants me to switch to Tysabri or Gilenya. I'm JV positive and 57 with 4 beautiful granddaughters, so I'm just not wanting to take that risk with Tysabri. Was ready to make a change to Gilenya and now my neuro is telling me there have been cases of PLM with people on that too.
What am I supposed to do? Neuro has told me Copaxone not doing the job and she doesn't want me to go further downhill. Neuro can't tell me if either drug will help with my walking. She just says its time to move on.
Are there others out there in MS world making these changes? I would appreciate hearing from any and all. Thanks so much!!
I was diagnosed back in 2006 PPMS when I could barely walk. Started Copaxone and steroid infusions and it was like night and day. However, had to stop Copaxone for about 16 months. When I got back on Copaxone I was also getting monthly "booster" steroid infusions. Have now had to stop steroids because of reactions - body telling me its had enough. That was 18 months ago or longer and my walking has deteriorated. Neuro wants me to switch to Tysabri or Gilenya. I'm JV positive and 57 with 4 beautiful granddaughters, so I'm just not wanting to take that risk with Tysabri. Was ready to make a change to Gilenya and now my neuro is telling me there have been cases of PLM with people on that too.
What am I supposed to do? Neuro has told me Copaxone not doing the job and she doesn't want me to go further downhill. Neuro can't tell me if either drug will help with my walking. She just says its time to move on.
Are there others out there in MS world making these changes? I would appreciate hearing from any and all. Thanks so much!!
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