How long are you giving Tec to kick in?

[msesq]

I've been on Tec for 9 weeks. No major issues, occasional GI upset and flushing maybe 2 or 3 days out of the week for approximately 15 minutes.

Despite tolerating the med well I feel like some of my symptoms are getting worse. My walking has not been as good as it was when I was on Tysabri, and I'm also a lot more fatigued. The first few days in Tec I felt like my symptoms were going away, but 9 weeks in I feel like they are worse.

I ask how long you're planning to stay on it because I'm thinking of begging my doctor (I'm JCV+) to go back on Tysabri. I felt so good on it, good enough to take the risk since I tested positive.

I was just wondering, what is your plan? How long are you willing to wait for the medication to kick in (or not)?

[Dreams008]

My doctor said it can take a good 4 months for Tecfidera to become effective. I, too, came from Tysabri, though I was only on 3 infusions, but have noticed since coming off, my walking has gone down the tubes. I had an MRI done to rule out another relapse, which was unchanged. I am also told that it could be a rebound effect, since Tysabri is so strong, that when coming off it your body kind of questions what's going on and your original symptoms come back, but are more intense. I still have hope this will pass. I've never given a DMD a chance really, so this one I'm going to try to be patient and hope it works.

[dann]

Me too

Am encouraged there are others of you experiencing walking / balance worse abd to learn that it may take few months to get picture of how Tec will work.......so patience, patience!! I am so happpy to not be doing shots, was a pin cushion for almost 13 yrs, avonex, rebif, short time on tysabri, and lastly betaseron.........

[LilyClair]

Same boat

Ok, I'm in the same boat and been on Tecfidera for 3 months following 24 months of Tysabri. Will someone please post if/when their strength and/or walking ability improves to pre Tec baseline?

[msesq]

I wouldn't say that I'm at pre- Tec baseline levels, but my walking is definitely better than it was after my original post. I'm on day 74, so my original post was around the two month mark. Now at around 2.5 months its better, and it is getting appreciably better every day. My balance has improved slightly, but not nearly as much as my walking.

[Alicious]

My neuro is giving it 3-6 months before considering it fully effective. We'll pay attention to flares in the meantime, but they won't be strikes against the med.

[thinkpink]

Giving it a year max

I have been on TYS for years, and am only going off it at my doctor's insistence because I'm JCV+ and have been on it so long. I'm planning to start Tech but am waiting until after a summer trip.

It's good to hear things do start improving after the initial month or two. I'm not looking forward to having my old sx return.

My doctor says that time off of TYS makes the JCV levels reset lower. He says if I'm not liking Tech in six month to a year, I can go back to Tysabri. So if you give it a few more months and still aren't liking it, talk to your doctor.

[jkeabap]

Same boat also

I have been on Tecfidera for about 60 days and have seen no improvements yet. I have seen a decrease in my walking function and balance (which wasn't good before I started). Have experience heat rash, diarrhea but nothing that will stop me from taking it.

My neurologist at Georgetown University Hospital says he will give it 3 months to see if it slows down my aggressive SPMS. And I think he is going to request another MRI to see if it is working or not.

[wheeliegirl]

I WAS TOLD TO THINK OF TECFIDERA MORE AS A PREVENTATIVE MEDICINE THAN ONE THAT MAY HELP SYMPTOMS IMPROVE. MEANING THAT TEC. WOULD HELP US TO LIMIT THE RELAPSES THOUS THE SYMPTOM WE HAVE WOULD REMAIN THE SAME OR GET BETTER BY HAVING FEWER TO NO RELAPSES.
I'M GOING TO BE STARTING ON TECFIDERA SOMETIME THIS WEEK.
I'D THINK IF ONE'S SYMPTOMS ARE IMPROVING WHILE TAKING TECFIDERA IT MAY BE DUE TO THAT THEY HEALING FROM A PRIOR RELAPSE . THEN IT COULD BE SAID YES THE TECFIDERA IS WORKING . BUT I'M NOT PERSONALLY WAITING TO SEE IMPROVEMENT IN ORDER TO STAY ON TEC. . I'M WAITING TO SEE HOW LONG BETWEEN RELAPSES OR IF I START NOT HAVING THEM OR PROGRESSION IN MY SYMPTOMS.
THAT IS ''IF'' I HAVE NO BAD REACTION TO TAKING TECFIDERA. FINGERS ARE CROSSED.

[momoffour]

I am starting my 6th week on Tec. I haven't had the side effects as bad as some have, a rough night here and there and stomach pains on and off. Overall, I think I've been ok on it. I hadn't heard about balance and walking issues.

I haven't noticed a difference in my balance and walking since taking the tec (any changes in that I think is due to my relapse). I do notice that I "feel" my ms symptoms more...I feel all the "hot spots" again and feel the tingling in my feet and hands more. However, having said that, I am coming off of a relapse...a small relapse in the scheme of things, but a relapse. My doctor likes to save the steroids for the big ones, he said.

I started on Avonex (since my diagnosis 4 years ago), went to Copaxone (Cop. didn't work, new lesions and the relapse) and now Tec. I do have more balance issues and walking issue now (though I'm still mobile) but I think it's because of my relapse, not the Tec.

I am also JC positive, I just found that out in the bloodwork done to start the tec, and I go back for a three month checkup in August. I hope this medicine works.

[Teddy123]

Msesq----thanks for your post of feeling better. My walk also is bad after starting the 240 x2 a day. I have been on for 1 1/2 months and don't want to give up on it just yet. I hope I see improvement like I did taking the 120 x2 daily. It's always the unknown for us.