I am a 50 yo female who was dx with MS 3years ago but suspect I have had it for 10years. Prior to my latest relapse I was running 1/2 marathons, biking and lifting weights 2x/week. I am a competitive runner and ran with a running team doing track workouts. My goal was to place in the top 3 in age group.No matter how bad I felt, exercise was the key for helping me emotionally and physically. I have been on cytoxan, rebif and IGG infusions. In the summer I started to notice issues with running and an awkward gait. By September had fatigue, weakness and running was minimal. I went on high dose steroids and IGG for 5days with no response. At this point I could only walk steps and symptoms were getting worse I was going to start gilenya last thursday but had abnormal ecg so going for stress test today. I would love to hear from other runners to hear how they did on gilenya. Right now I can only walk 1/2 mile 2x/day with fatigue, numbness and weakness and dizziness.I have never had a relapse this bad and would also love to hear from others and how long it took them to recover. This is my 5thweek out of work.
I'm not a runner, but before my MS diagnosis I was a motocross racer. I'm in the same position (female, age 56 now), recently diagnosed but probably afflicted for 10+ years before that. I started Gilenya from the get-go, and although I haven't experienced any side effects in the year I've been on it, my symptoms have worsened considerably in that time. In all fairness, I suspect that's because it took so long to get a diagnosis and start treatment. I believe that caused the disease to progress too far to make any difference. That said, you should be aware that none of the DMT therapies will help any of your symptoms as that isn't their function. They only delay disease progression and reduce the frequency of exacerbations. I'm glad to be on Gilenya still, because it's an entirely different approach to treatment, so I'm still hopeful that something may change and I'll start seeing improvement. I wish the best for you.
- Gilenya Information for Consumers
- Gilenya Information for Healthcare Professionals (includes dosage details)
- Side Effects of Gilenya (detailed)
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