Amber
Forum Replies Created
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Ginny, so glad you brought this up. I have been fighting to get back on ruzurgi for a long time. Since I went on firdapse, like you, I can hardly walk long distances, whereas on the ruzurgi was able to do a full day at Disney no problem. I am on the immunoglobulin treatments from Hizentra which help a lot, and I tried earlier this year Rituxan, but it did not work for me. One thing that does work for me really well is being on birth control. I’ve been on it for years because of my Lambert Eaton syndrome, and the one time I went off of it to see if it made an impact it did. If you’re willing, you could ask your doc about going on yaz to see if it helps you too. Through the Lambert Eaton board, I heard that they are offering ruzirgi in Canada and I am asking my neurologist to see if we can get it from Canada. No luck yet but I will keep everyone posted.
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Where can I get info on this trial? Yes I would do it in a heartbeat.
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I am already on 100 since I was on 100 with ruzurgi. I need to go to up 120 but no success so far.
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Hi Tim, sorry you’re one of us now but at least they were able to diagnose you. I had the same experience. I was super active, running, playing tennis, lost about 25 pounds and then it hit me at the age of 27. First I couldn’t go up stairs or ramps very well, then it was a struggle just to walk. I push myself hard every day. I have two kids and a full time job that is luckily remote. Hang in there and keep trying to exercise as much as you can. Don’t feel bad if you can’t though and take breaks. I am also a non smoker. But I don’t have thoughts on being sick and getting lems. Mine happened after I stopped a medication abruptly but I’m told that had nothing to do with it. Good luck finding something that will help you. I’m on firdapse, and rituxan. They work okay but still struggle to go on a long walk.
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I was told by catalyst that anyone who can’t take Firdapse, was able to get on the Ruzurgi while supplies last. It’s worth asking.
I truly hope they can bring back ruzurgi in the way it was made before, no modifications. It just worked better imo. I found just this week that firdapse works better on an empty stomach, or with very little food. If I try to take Firdapse on a completely full stomach, the medicine hardly works at all. This is been a huge deal in my day-to day feeling much better if I take it before lunch/dinner versus after.