Bg12 after gilenya and tysabri

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Bg12 after gilenya and tysabri

Postby jacfun » Wed Aug 14, 2013 12:43 am

Hi all, Just wondering if anyone is in the same position as me.
I am considering switching from gilenya to bg12.
I have been on gilenya for 8 months.
Prior to this I was on tysabri for 14/15 months, but came back JC+.
Prior to that, had been on coax one for over a year, and before that, beta freon for several years.
I was diagnosed with MS in 1991 (22 years ago!)

The reason my neuro is thinking of switching is because my last MRI, in July this year showed 4 New lesions, 2 of them enhancing.

I did have a major flare up in between stopping tysabri and starting gilenya ( 4 months after stopping tysabri). It was a full on flare, nothing like I'd had before, so I guess this was the post tysabri "bloom")

I am worried! And am not sure what to do....give gilenya a bit longer to work or jump in with first takers for bg12? Is anyone else in this position.

I live in australia, so cost isn't a big issue. both tysabri and gilenya are on the govt subsidised program here (PBS)' but not yet bg12, however the drug company is picking up the tab until it is.

I haven't found any studies on people in my situation, trying different new drugs, one after the other, for ms. Would appreciate anyone's thoughts.

Thank you
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Re: Bg12 after gilenya and tysabri

Postby crashiedog » Fri Aug 16, 2013 9:03 pm

Hello - My name is wendy and i am an aussie aswell :0). I have been on tysabri for 62 infusions and have been JCV negative for 60 of those infusions.. So now i am positive I am considering Gilenya. Since Ty i have had no new lesions, no activity and all has been so good. I was diagnosed in 2002. the past 11 years have been pretty good for me. How was your time on Gilenya? I know that the % rate of relapses is not as high as ty. I have heard alot about BG12 but it isn't on the Pbs here yet is it? It is not fun making decisions regarding our health.. I hope the decision works out for you - Goodluck. :)
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Re: Bg12 after gilenya and tysabri

Postby jacfun » Wed Feb 12, 2014 12:01 am

Hi Wendy, sorry for massive gap since replying...
My experience with gilenya has been ok in terms of side effects. First month was a bit annoying, as I seemed to have a lot of infections crop up...sinus after a cold, herpes flare, UTI, thrush ( after antibiotics for the sinus and UTI )' and then conjunctivitis. All settled down after the first 6 weeks on gilenya. I did have a big rebound though after stopping tysabri...a very bad ms flare, scariest I've had with major leg,back strength issues, balance and more. Did come good in time and with steroids.

Unfortunately, my last 2 MRIs have shown increased ms activity, so I stopped gilenya in January this year, as it ain't working for me! Am starting Bg12 in the next month or so. No rebound as yet since stopping gilenya. ,my dr gave me a hit of steroids late January to give me some cover.

How have you been? Did you start gilenya?
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Re: Bg12 after gilenya and tysabri

Postby centenarian100 » Sun Mar 09, 2014 12:17 pm

It sounds like you had a post-tysabri "bloom" as you call it which often occurs about 4 months after stopping the drugs. There is a lot of literature on how gilenya is not very effective in preventing this, particularly if it is started after a long "washout" period. I don't exactly understand the logic of switching from fingolimod to tecfidera if poor efficacy is the issue.

fingolimod was superior to avonex in the FREEDOMS trial, but tecfidera was not superior to copaxone in the CONFIRM trial (there was a trend toward superiority for tecfidera, but it did not reach statistical significance). this is despite the fact that the trial did not have a "double dummy", so the copaxone group knew they were on copaxone (which if anything would bias the trial against copaxone because people probably entered the trial so they could get tecfidera).

In other words, there is no reason to think that tecfidera is superior to fingolimod in efficacy, so why would you switch from gilenya to tecfidera if your concern is drug efficacy?

Not to put doubts in your mind...just food for thought. You may do better regardless of medications now that you are past the post-tysabri period.

best of luck
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