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-   -   PML in European drug dimethyl fumarate (https://www.neurotalk.org/multiple-sclerosis/187477-pml-european-drug-dimethyl-fumarate.html)

SallyC 04-28-2013 05:58 PM

I just heard that there is a washout period, in going from Tysabri
To BG12/Sofa pill, of 6 months
!!!!:eek:

GladysD 04-28-2013 06:48 PM

Maybe, baffling, to not want to take that risk, as minimal, as it appears, but, yeah..nothing is 100%. I'm young, active, and have young children. That miniscule risk, is too much risk for me.

{Edit to add}: Granted, a plane could fall from the sky, land on me, a car could drive into me, I could get cancer. But, you know, it just is what it is. My body, My choice, so to speak.

EddieF 04-28-2013 08:14 PM

"I just heard that there is a washout period, in going from Tysabri
To BG12/Sofa pill, of 6 months"

Not true. Call Biogen. Neuro (and patient if lucky) make the decision since everyone's different. 3 weeks to 3 months.

Sparky10 04-29-2013 08:30 AM

Quote:

Originally Posted by SallyC (Post 978965)
They are meant to reduce flares, to possibly reduce disability
progression only. Any symptom relief is gravy...

Yes, to reduce the number of flares. And Sally, "gravy" as you use it is a favorite term of mine!

barb02 05-01-2013 02:14 PM

Saw my neuro today. He told me he and the other 6 neuros in his practice have not recommended it yet. He is more cautious than some doctors. He said they are taking a "wait and see" approach.

Natalie8 05-01-2013 09:44 PM

Interesting Barb. I saw my neuro this week too. I'm doing well on Tysabri but asked about Tecfidera. He said that he has patients that have gotten diarrhea on the drug - a couple of people have bad cases including one gentleman who stopped it because it was so severe and the anti-diarrheal meds weren't
helping even after 3 days off the drug.

He also said that Biogen's claim that the drop out rate from the clinical trials was low because side effect profile was low is a misleading statement. He said the side effects are so obvious (diarrhea and flushing) that people instantly knew they were on the drug. If this was their last chance for help or they wanted to get the drug in the trial, they would tough out the side effects to stay on it. I thought that made sense!

Anyhow, I'm just glad I don't have to contend with a possible new side effect profile!

My3sons 05-24-2013 06:16 PM

Just saw my nero today and he suggested that I look into this new pill. I did shots for years when I was first DX but stopped because of injection site infection. I've been taking Copaxone for the past 2 months but I HATE the injections, even with the autoject. He said this is less expensive then a lot of the other drugs and he has several patients on it (of course not for that long), with good results. They are showing improvements in a very short time. I'm all for trying anything that will keep me moving longer. I've been off any type of meds for awhile (about 6 years), but having lots of increased problems. That's why I started with Gilenya (high blood pressure), then went to Copaxone and I think I'm going to try Trecfidera. I'll wait till next month when I'm off work for the summer. I don't like switching drugs all the time but did I mention that I HATE injections.

GladysD 05-25-2013 03:34 PM

Quote:

Originally Posted by My3sons (Post 986458)
He said this is less expensive then a lot of the other drugs and he has several patients on it (of course not for that long), with good results. They are showing improvements in a very short time.

There's improvements with this MS, medication?

When I hear neuros use 100% and Improvements to MS, I see red flags and become a bit cynical.

((My neurologist mentioned that I was 100% certainly not ever going to develop PML. Of course, that was after, while in my last appointment, having another neurologist, a woman, interrupt my appoint to say, in a way I found giddy, Ahh, Dr.*insert name*, did you see that email, wasn't it sooo funny, hehehtehehe" Yeah, I walked out and never went back in..another story another thread))


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