Mycophenolate for SPMS--report
It's been years since any DMT has worked for me. Some recent failures were Gilenya and Rituximab, but there were many others. Botox had no effect and Baclofen gives me endless problems. Twenty years after diagnosis, I went from unassisted walking to cane to walker to wheelchair in only 12 months. I now live in a downstairs guest room, and don't drive or cook.
Imagine my amazement when Mycophenolate started working in about a week--at 1/4 dose. A month after starting, I'm at 3/4 the maximum dosage, and I've moved back to a Rollator (walker with seat). In 26 years, I've never had a neurologist or physical therapist get excited about my MS--but they are now.
I now stand up long enough to pull up my pants after using the toilet--sounds minor but things like that mean a HUGE improvement in quality of life. I'm turning back the clock on symptoms. There is more pain than before, but it's controllable, and some is possibly because I'm using muscles I haven't used in years. This is a serious drug, intended to keep transplant patients from rejecting their organs, and it's really knocking out my immune system. I can't tell anybody else to take such a risk, but I can share my experience, for what it's worth.
Imagine my amazement when Mycophenolate started working in about a week--at 1/4 dose. A month after starting, I'm at 3/4 the maximum dosage, and I've moved back to a Rollator (walker with seat). In 26 years, I've never had a neurologist or physical therapist get excited about my MS--but they are now.
I now stand up long enough to pull up my pants after using the toilet--sounds minor but things like that mean a HUGE improvement in quality of life. I'm turning back the clock on symptoms. There is more pain than before, but it's controllable, and some is possibly because I'm using muscles I haven't used in years. This is a serious drug, intended to keep transplant patients from rejecting their organs, and it's really knocking out my immune system. I can't tell anybody else to take such a risk, but I can share my experience, for what it's worth.
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