Doc wants me off TY (been on it for 31 months) and to start Gilenia. So far it has been almost 3 months off, with another 3 months to go before I start the Gilenia. I find that I am extremely tired and weak now and sleeping longer and longer. Anyone else stopped taking Tysabri ad had any kind of withdrawal symptoms?
-
-
I took an 8 month Ty "holiday" earlier this year.
I didn't have withdrawal symptoms, per se. But I did gradually slip back to my pre-Tysabri symptoms of lower body numbness, extreme fatigue and cognitive dysfunction.
I had been on Ty so long (36 infusions) that I had forgotten how very annoying and debilitating these symptoms can be!
Now I am back on Ty. Unfortunately, I haven't (yet) experienced the alleviation of symptoms that I did the first time on it.
I hope you do well on Gilenya.
Be well, -
Hi shalimar. Do yourself a big favor. If your doc says he wants to start you on Gilenya, have him make the calls to Novartis & the support group & whoever else needs to be contacted right away if he hasn't already and if he hasn't, get on him to do so. Since this also involves insurance & Rx plan approval, it can & most likely will take longer than you'd like it to before you start your Gilenya. I stopped Tysabri last May & my doc wanted me to try Rituxan. After waiting way too long for insurance approval for this med and then to have it denied, we then waited for Gilenya, which did happen faster. So, during the 7 months without any substantial MS med in my system, I went down hill. My left fingers went kind of numb, my left leg got weaker, & my gait slowed. Not to mention stumbling up stairs all to often. Another brain MRI revealed more new lesions also.
I had to do two different 5 day stints of IV solumedrol to "hold me over" my doc said. I was extremely irritated over this because the whole 2 years on Ty I was doing fine. Then because of the PML scare doc wanted me to vacation from the TY. So,.....to make my long story here shorter, tell your doc you want Gilenya ASAP & you DO NOT want to wait months. You yourself & also your doc do not know that your MS will not act up without medication. It's your health so, stay on top of it!!
.....Good luck.....Mike
Comment
-
shalimar, I am sorry your sx are acting up
when you do get on Gilenya I hope you do well !
Mike, for you too, I am sorry. I have fought hard to stay on Tysabri-changed drs a couple of times. I hope Gilenya is a good med for you!
Karen, I hate that Ty does not work for you like it once did
Best wishes to all
LindaLinda
Comment
Comment