Quote:
Originally Posted by 4boysmom
My guess, from reading through this thread Cherie, is why bring up any remarks at all if you are not on the med, and are only trying to be negative?
I'm only reading this thread because I'm on Ty, and I want to hear what others say about it. I don't want to hear a negative slant from someone that has never even been on the drug. Stay off the Ty threads unless you have a stake in it! I never contribute to Copaxone threads because I have no experience with it.
If someone has been on it, and wants to say something negative about it, that is great! In fact, I question often if my being on Ty is the correct thing!
But you know what I've learned from this thread? I'm grateful my neuro went from Avonex to Rebif, and then to Ty so that I'm on it now without ever having one of the other "harder core" meds that could possibly contribute to PML. It will remain to be seen.
You see, I'm a 47 year old woman who only has some balance issues and a tingly left hand, works full-time and in most ways doesn't suffer from anything serious because of my MS. And that is how I want to stay, and that is why I'm on Ty! I don't want to get worse. I want to be in great shape 20 or 30 years from now.
Avonex wasn't strong enough (more lesions after a year), Rebif made me tired and somewhat itchy, but it wasn't horrible, nothing in my bloodwork anyway. So I could have stayed on, but instead switched to Ty because I felt it was the best med out there for keeping me as I am today. Only time will tell if that decision was correct. I have faith that it is!
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There was inaccurate information passed on in this thread, and obviously that is why I have responded with the correct information here. I have posted the facts, as I know them, and if anyone wishes to challenge that information, I am more then prepared to do have that discussion.
A person does not need to be on a treatment in order to be “entitled” to contribute published FACTS about it on a public forum. If someone gets on here and says, “the interferons have never caused flu symptoms” ... or “LDN can not cause increased spasticity in some people” ... or “Copaxone will never result in site reactions”... or “PwMS need 100,000 IU of vitamin D daily” . . . I will challenge that information too.
Respectfully clarifying an inaccurate statement, that has been relayed from a biased and unnamed pharma company rep, has curiously stirred up some “personal” defensiveness on this thread. I'm quite sure the rep would have rather the inaccuracy got posted without anyone challenging it, but unfortunately for him/her, not everyone is as gullible or easily intimidated.
To avoid further messying RW’s “notes” thread though, we can link to a new thread to continue this conversation. In fact, I think I will do that . . .
Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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