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-   -   The "Positive" Tecfidera/BG-12/Fumaderm (modded) Thread! (https://www.neurotalk.org/multiple-sclerosis/187662-positive-tecfidera-bg-12-fumaderm-modded-thread.html)

karilann 08-06-2013 01:24 PM

I still think Tecfidera will be a welcome new drug for some people. I have 2 pharmacist friends who really like the drug and are happy it has hit the market.

Remember the PML was in 1 or 2 cases over a 30 year span treating psoriasis. Tasabri is very much liked by many MSers, but it has a risk with it also.

For those who can not take the interferons, this may be their answer.
I felt much more energetic while on the Tecfidera and shortly after stopping it. Now I am feeling a bit crappy again and will be starting Avonex tomorrow. I still believe the Tecfidera perked me up a bit.

All these drugs are scary because it is a crap shoot as stated. Its a very personal decision between the patient and doctor on what to try.
I did fine on the interferon for 11 years but was very sick and tired of the shots and my skin was so sore all the time. So I tried the Tecfidera and I think if they would titrate it up more slowly, maybe I could have tolerated it. Not sure....will never know....but I'm glad I gave it a go.
I guess only time will tell how the general MS population really does on the Tecfidera.
For me personally, I am not ready to dismiss the medication. All medication carry risks. You have to be your own advacate.

Wish me luck with the Avonex!

SallyC 08-06-2013 02:12 PM

I'm stepping in here to say....yes it is your final choice to take or
not to take these scarry poisonous drugs. But I can't help thinking
that they are given and prescribed, in a willy nilly manner, giving
no thought to type of MS you may have, your size, your weight,
your DNA, family history....or anything.:mad:

They prescribe the same amount for a 5'2" 120 lb woman as they
do for a 6'5" 220 lb man. Oh yeah, some are just now realizing,
how WRONG that is. But do they stop and sort it out...Noooo,
because that would interrupt their profit.:mad:

Just saying again, use your own sense of well being,
not someone else's.:grouphug:

goldie 08-06-2013 04:05 PM

Not working for me
 
I really wanted this to work for me.

It took so much work to get: The delays getting to market, the fights with the insurance company, the astronomical cost.

At first the side effects were rough, but my body got used to it and now I mostly just get hot and flush a bit, no big deal.

Except - weight gain! Is anybody else gaining weight???

But sadly, it's not helping, and I think it is hurting. I have been getting more exacerbations than usual, but didn't want to believe it was from the Tecfidera. Unfortunately, I am now experiencing one of the scariest flare-ups I have had in a long time.

Anybody else experiencing this?

Guess I will have to stop. :(
I really, really wanted this to help and it seems I have wasted thousands of dollars just to get sicker.

Kitty 08-06-2013 04:59 PM

I'm sorry it didn't work for you, Goldie. :( Seems like more and more folks are coming forward with issues from it.

I just want something that works without me having to take umpteen other meds to counteract the symptoms from it. :rolleyes:

I'm thinking I want (and need) to go back on LDN. The only reason I quit was that I had surgery and had to go off of it prior to and during the surgery. Time to call Dr. S again.

Kitty 09-03-2013 08:15 PM

New Oral MS Drug Tecfidera Approved by TGA
 
Looks like it's been approved in Australia.

http://www.msra.org.au/new-oral-ms-drug-approved-tga

SallyC 09-03-2013 08:51 PM

Has anyone heard from Eddie? He must be pretty discouraged by now.
Darn poison MS Meds..:mad:

Sparky10 09-06-2013 08:18 AM

Two and a half months for me, no problems. Not what I call problems, anyway. Yesterday, after two beers, I got the flushing effect. Suddenly felt like sunburn and turned red, even my arms. It went away quickly. And I recently read someone describe how their leg(s?) would unexpectedly weaken. Mine do that with a twinge of pain, but I cannot remember if it started before Tecfidera or after.

My3sons 09-06-2013 10:32 PM

Starting my 2nd month and no problems so far. I always make sure I have ibuprofen before or with and take it with a glass of milk. I do feel like my Ampyra isn't as effective but that could just be this darn HOT temps. I sure don't miss the shots.

dmplaura 09-08-2013 01:12 PM

Quote:

Originally Posted by SallyC (Post 1012163)
Has anyone heard from Eddie? He must be pretty discouraged by now.
Darn poison MS Meds..:mad:

I've been away a while as well (not on anything currently - just my regular Nabilone and Clonazepam for pains). I'm wondering too how Eddie's doing. Thank you all for your feedback on this medication. I came here to update myself on the world of pharmas and drugs, so it's nice to see and read first-hand accounts of medications, side effects, positive benefits.

Hope everyone's doing well! :grouphug:

SallyC 09-08-2013 02:33 PM

Howdy Laura. Nice to hear from you..:)


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