WALKING AND TECFIDERA

[Waydwnsouth1]

I have been on TEC going on 3 months now. At the beginning I was having trouble with walking and my gait. The spasticity was also getting worse. My walking ability was becoming worse and worse. I had a neuro appoinment and was concerned that perhaps I was just going to have to get off DMD's all together. But, we decided to continue to stay on the TEC to see what would happen. Slowly the spasticity started to ease and my walking was slowing getting better. Now I am walking without an aid and the spsticity is totally gone. I am feeling like a million dollars.

Now that with all that being said I have been having more trouble with vertigo. My vision becomes blurry and I have to lay down and relax to help things ease up. For a week it caused me to miss a substantial amount of time from work. Thankfully they are very understanding. The vertigo comes and goes. I may goe a week with now no trouble then one morning I will wake up with the room spinning. Like all MS'ers I have to be careful what I do and not over do it. Living in South Louisiana with the high humidity my outdoor activities are very limited. I find myself getting out at night to tend to my plants and do some things that I would have normally done during the day.

Tec may not be for everybody. As with MS all DMD's affect each of us differently. Only you and your neuro can decide what is best for you. My Neuro and I decided to give it some time and it has paid off. Good Luck to everyone and I certainly hope things begin to turn around for each and every one of you. God Bless!!!

[msinvincibles]

Tecfidera walking

Well I've been on for 6 weeks and although I haven't noticed any changing walking or gait issues.
What I am experiencing is that I'm getting severe calf aches in the middle of the night. Usually one or the other leg. Never at the same time. The more I pay attention to it the worse it gets. It lasts about 5 minutes and then I get out of bed and walk it off.
The other thing that's happened is when I wake up my hands and fingers are numb and when I try and make a fist, it actually hurts. This lasts for about 3 minutes after I get up.
I spoke to my Neuro today and he said that he doesn't believe that Tecfidera is the cause.
My hands may be signs of Carpal Tunnel. I'm on the computer constantly. And even though I already take Baclofen, he thought the leg cramping was increased spasiscity at night since I take Bachlofen during the day.

I'm going to see how it goes the next few weeks.

Many of you spoke of a wash out period. Well I was on Tysabri for 3.5 years. I stopped in November 2012 because I tested JCV positive . My wash out from Tysabri was 5 months until Tecfidera finally came out. No big declining changes during the 5 months. I just wanted to clean out my system from all the drugs. Didn't expect Tecfidera would have so many release delays!

[SpeckledBrain]

I figure I'd post an update. My stuff has definitely gotten worse. I'm now foot dropping which I haven't done since my last major attack a couple of years ago. There is a huge difference in my balance and walking ability. I'm holding out hope that it's going to level out.

And I know it has nothing to do with the weather...if that was the case I would've had another flare start in my kids Softball season which is over.

This started right as I took the medicine.

[suzannejc]

I have definitely noticed a weakness in my legs since starting Tecfidera about 6 weeks ago...

[junius27]

look out for the sun in your eyes,heat hummity.i walk better by taking a pain killer it helps my legs .

[mhasso]

Walking and Tecfidera

I have been on Tecfidera now for three months. I have no changes in my walking. I will say though, I live in the northeast and have had trouble with the heat and humidity. Also, when my vitamin d is low I definitely have walking issues! Have your Vit. D checked! If your MRIs are unchanged, it's working.

[LilyClair]

Im in the beginning of my third month on Tec after a 24 month regime on Tysabri(JC+). I had one episode of flushing with first dose but nothing since. However, my walking and overall body weakness has increased substantially. To the point where I went on a 3 day course of IV Solumedrol about a month ago. Felt strong that week but have deteriorated since then. I live in a mild climate so I can't blame the weather. Were there any participants in the clinical trials that Tec didn't work on and when do you know when to throw in the towel and switch. I was so counting on Tecfidera

[MSer]

Just finishing Week 7 and have noticed no difference in walking or balance. Just more fatigue. Could be the AZ heat.

Tapdancer.... I think that is it. THE HEAT. It is hot all over the USA! My uncle lives in AZ and it hit 115 degrees. That is our (MSers) worse nightmare. That alone can make your muscles MUSH and mess with your walking ability. I live in California... it will be 97 today. That is hot for us (it has been hot all week). I noticed a weakness in my muscles ... but I now know it is the heat, not Tecfidera. I actually did a lot more things yesterday than I usually do and felt fine. Today is day two in the full dose. I am praying this medication is for me.

[Rosieva]

Nooooo, not again

I had my 6month neuro appt today, and have been discouraged about worsening symptoms.
He gave me an information pack about - Tecfidera! . I was getting a small inkling of hope for new med.
Spasticity is a big problem for me. Went from cane to walker, wc if any distance to walk.

Visited tec web first. Optimistic. Came here - one more time, disappointed. This is why I do not get excited when normals tell me they heard about a new MS wonder drug. not sure if i should risk this stuff, now.

I had been hoping you all were enjoying a long walk around the block, while looking up former boss' number to get your job back.

I can dream, right?

[finee9]

Tec & Spasticity

Is anyone having great spasticity issues, mine has increased significantly. It's making me crazy.

[fairpace]

Started week 7 today. I notice my walking is weaker the last week or so, however it could be due to the heat.

My neuro had me do a 3 week washout after Copaxone before starting Tecfidera. So, that's 3 weeks without my security blanket. Also, she said, based on the clinical trials, they (whoever they are) estimate it takes about 10 weeks on Tec to get maximum effectiveness (more or less, hard to tell without knowing the parameters of the individuals in the clinical trials - things are so individualistic.)

Anyway, 3 weeks without DMD + 10 (?) weeks on new-fangled DMD = 13 weeks crapshoot and possible increase of and/or new symptoms! It's pretty much the same odds when switching between any of the DMDs. Just an interesting thing to contemplate.

I sure would like to read some feedback from some of those clinical trial folks!

[Alpharetta]

Wow, right there with Finee

I switched from avonex to Tec in mid april, have been on ampyra for over a year now. At about two weeks I was doing great (compared to where I was with Avonex!) There were a couple of days in the middle I thought this was a wonder drug as my walking and gait was so much better.

Thought it might be a washout period euphoria. However after 2 weeks on full dose my walking and gait declined, significantly. Called my neuro as all indications was a major relapse, no new issues just significant problems with current right leg and right arm.

Requested a pulse pack or solumedrol series, he opted for the steroid pulse pack. Helped some but I am nowhere near where I was, with avonex I had 4 bad days and then squeezed out 3 good days, now I seem to be on all bad!

My annual MRI is this month, going to wait and see what that shows and review this and next ops with my neuro.

[LilStep]

I've been on Tec for 2 months and I am more fatigued than when I was on Copax. I haven't noticed any difficulty walking; although my body does ache all over.

I'm trying really hard to exercise more and keep moving so I don't get stiff.

[Tapdancer]

Just finishing Week 7 and have noticed no difference in walking or balance. Just more fatigue. Could be the AZ heat.

[Willow63]

My walking ability has really decreased since starting Tecfidera. My legs are so weak and toes are dragging. I have been on Tecfidera for about 3 months now and with each day my walking is worse, yet my MRIs are unchanged. Anyone else experiencing walking problems since starting Tecfidera?

Hi Dreams008,

Sorry you are having weak legs, etc. What DMD did you switch from?

I went from Copax to Tec. I feel better. I am exercising more and feeling less fatigue. Sometimes I overdo it and have to chill.

Could it be summer climate or something else? I only mention it in hopes that you get better.