I am a 37 year old with 3 kids ages 2, 4, and 7. I had my first symptoms at 22 – foot drop on the right and weak right hand. A week of steroids put me back to “normal” and I didn’t have many too many problems until 2-3 years ago. In that time I’ve started using a Bioness, scooter, crutches, my left leg is failing, and both hands are weak most of the time. I’d been on Copaxone since ‘01 and on and off through my pregnancies. Last summer I switched to Betaseron. I hadn’t had any active flare ups but just steadily getting worse, so was considered secondary progressive at that point. Am considering Tysabri or Gilenya and am PML+. Looking for advice from those that have been there. Is it fair to risk PML with small kids to consider? Tysabri sounds like it could really help, but what about rebound if I’d stop? Should I wait and see a little longer before switching? I’ve only had 1 new spinal lesion in the past year, no new on the brain. Anyone had good results with Gilenya or have had experience with both?
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Hello ms mom,
First, you probably meant you are JCV+, not PML+. There have been 129 cases of PML related to Tysabri in the USA out of 395 worldwide as of Aug 6,2013.
It seems you are preparing to change to a more active med to treat MS in considering TY or Gilenya. The effectiveness of either is greater than your current therapy. Really comes down to the choice you and your doctor make. No one can guess what is best for you. It is always a tough call to make.
Not to make it tougher but Lemtrada was just approved in the EU and many expect it will be in the US as soon as the end of the year. It comes with its own risks and benefits, as all MS meds do. Basically IMO, it can be thought of as the poor man's stem cell treatment because it does essentially what stem cell treatment does... resets the immune system.
The MS trials have been quite successful. Lemtrada has been used in cancer patients. The MS dose is about one tenth of that dose, I believe.
You start of with a course of infusions over 5 days then nothing more until one year later when you get two more days of infusions.
All treatments have different risk and reward. I know it is very difficult to choose and you have my deepest empathy in your present situation. Blessings to you. -
I don't know what to tell you .. you must make your best informed decision.
As for being jcv+ there is approx 2 years of being rather safe, especially with no immunosuppressant use. You, also, want to find out what your positive score is-hopefully low.
To date, Tysabri is the most effective med. You probably can tell I am a Ty cheerleader !!
Please do your homework
Linda
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