Tested negative

[mabellcs]

Good morning all

Looking for a little feedback and advice. I have had MS for 8 years now. I first took Copaxone for about a year and now I am on Betaserson which has done really well up until now. Since being on Betaseron I have had 2 relapses in the past 3-4 years however I have had 2 relapses in the past 6 months. While I have not had a MRI in a year to see if any other lesions has developed. My neuro wants me to consider taking Tysabri or Gylenia. Since I am negative for the virus I am tempted to to say the heck with and start Tysabri, but on the other hand I can take a pill and be at home while doing it. Most of you all are prob like me in that you are starting to hate doctors and do whatever it takes not to see them. Just not sure which way I want to go. If you were in my shoes which would you do and why.

[Spydre]

My doctor actually recommended Tysabri over Gilenya, even if I had tested positive (I tested negative). Gilenya was second on her list, but she said because they are seeing so much immunosuppression, she's not recommending it for a lot of patients right now, and wants to wait and see what comes of it first.

[NickyOz]

I just tested negative as well and neuro pushing me to go on Ty. I prefer it to Gil as been around a bit longer and seems more research on it. Don't know bad side effects of Gil (sp ??) but know loads about Ty. Quite scared about going on Ty but I am in a real bad relapse that is not improving and another one like this will put me in a wheelchair so like you I have to decide on one. I guess I know more about Ty. Do you know the bad side effects of Gil

[Cate Power]

T to G, yes, but not the other way around?

My neuro says one can go from T to G but not from G to T. I don't know why and I should have asked. Sorry.

He says other things I don't really trust, e.g., claimed it takes 2 mos. to cleanse sysytem of Rebif when it only takes 2+1/2 weeks, so please double-check.

I am SO ready to start T, but I've been dealing with the beast for 20+ years and it stinks.

[Spydre]

My neuro says one can go from T to G but not from G to T. I don't know why and I should have asked. Sorry.

He says other things I don't really trust, e.g., claimed it takes 2 mos. to cleanse sysytem of Rebif when it only takes 2+1/2 weeks, so please double-check.

I am SO ready to start T, but I've been dealing with the beast for 20+ years and it stinks.

From what I understand is you can't start on a Tysabri after having been on an immunosuppresant, that ramps your risk level up quite a bit. The effects of Gilenya are basically, immunosuppresion. My neuro told me that what they are seeing with their Gilenya patients is that there is NO immune system activity while on Gilenya, so they just consider those patients off limits for Tysabri later on. That's why she wanted me on Tysabri before Gilenya. That and so they have more time to see what other effects the immunosuppresion of Gilenya has.

[NickyOz]

Are the CRABS medications immunosuppresants

[Spydre]

No, the interferon's are immunomodulators, but they are not immunosuppresants.

[tellnhelen]

Hello MaBellcs

I think I stayed with Avonex too long...given a "do-over" ...I would start earlier with Tysabri..I having good results after 6 months

[NickyOz]

Spydre, thanks for your response re immunosuppressants as have been asking for ages. Theother question I have is what is the point of going on a medication for 2 years (as risks increase after this) when MS medication should be for life

[Lendi]

Many people on Ty have taken it much longer than 2 yrs. I will be at two years in Jan and have no intention in going off. For me, Ty is for life unless or until there's something out there that's proven better.

[lindaincolorado]

I have been on Tysabri since Oct 2006
Until something better comes along I hope to stay on Ty, unless because of age my dr thinks ms is no longer an issue which I have heard this may happen around the age of 65

[reeskis]

I was on rebif and dr said I'd need to be off a month before starting ty. But I did read that there was more pml when taking both at the same time so I told the doc I would wait 2 months, which I did.

[linders]

JCV testing

Just getting the word out as much as I can. Testing negative for the JC virus is not enough. You need to be tested for the antibodies to the JC virus.

Supposedly 55% of ms'ers test positive for the antibodies to the virus even though they test negative for the virus. Unfortunately, testing positive is NOT a good thing if you are taking Tysabri.

Some neuros still don't have this info yet and by telling patients they are negative for the virus, (unless they are the lucky other 45% who are actually negative for the antibodies) they are giving some of us a false sense of security.

Now it's back to the drawing board for me. Oh, and my neuro gave me some long drawn out explanation as to why she doesn't want me to try the oral med right now. Not sure why, was too bummed to really think straight.

[LL60]

I have a "she" neuro too. In San Diego. Do you happen to have Kaiser insurance?