[Kitty]

http://in.reuters.com/article/2013/0...96O0GF20130725

[EddieF]

My muscle strand spasms (few inches long, half inch wide) have worsened going from Ty to Tec.
Next month i'll check white cell count & if they didn't go down, i'm going back on Ty.

[SallyC]

I know this is a "positive" thread, but sure haven't heard too
many positives about TEC?

[EddieF]

Yep. Had high hopes for this. I'd do Novantrone but I know uti's will be terrible.
Tysabri's a great med, would've liked a half dose of Tec w/Ty. Could'nt.

[Kerry3928]

Originally Posted by Sparky10

Just took dose number 13, and have had the facial flushing twice. Tomorrow starts the full 240mg doseage. *fingers crossed*

One troubling thing...my neuro does not feel the need to monitor my bloodwork. Thought that was part of the protocol? I should call his nurse.

I was told by my neuro that blood work was necessary once a year. Anything more was at the dr discretion. My dr is doing the bloodwork at 1 mth, 3 mth, 6 mth and then a year. If my white blood counts are fine / stable, then he'd switch to once a year after the first year. He wants to monitor my WCB and be sure it doesn't decrease too much.

[karilann]

I was taking TEC for 25 days and had some adverse reaction and had to stop. During that time, I followed a facebook group taking TEC and there were over 900 people chatting about their experiences.

There is a 40% chance you will have some side effects with this drug and some can be challenging (like diarrhea). I noticed while reading the facebook chatter that it really looked as though 40% was about right. The other 60% felt fine and had high hopes! For those taking shots, it is a big relief to take a pill! But like I said, the 40% with the side effects ranged from mild to moderate and were quite challenged by it! Especially the diarrhea! I had hardly any side effects!!!!! But I ended up with some pretty intense head pressure and headache that just got worse and worse. Neuro said I would not be able to take it. To all the others.......I wish them the best of luck!

[SallyC]

Bless your hearts, you guys who take your chances, with
some of these dangerous drugs. I don't have the
gutts anymore.

[Lynn]

Ok, so I don't know if I have done this correctly, and I can't speak as to the provenance of the information, but perhaps it is worth checking out.....I don't know, and if I am totally wrong, that is fantastic and please don't shoot the messenger....

This if a forum post I have found about tecfidera:

http://www.drugs.com/answers/tecfidera-bg12-tysabri-713171.html

"I am also dealing with MS. I was asked to consider using Tysabri© nearly 2 years ago because I have such bad reactions to interferons. As I researched it, I became concerned over the history behind it regarding PML. I had my family research it before making the decision whether or not to risk PML. They all asked me not to do it! I called it the "Poison Dart Frog Serum".
As for the amount of time you should wait after recieving Tysabri©, you should ask your neurologist. No MS drugs have immediate "feel better effects." They do however, help you lessen the number of exacerbation periods. Their length and intensity can be eased as well.


Expand this post...


As for Tecfidera©... My one concern is the price tag of nearly $55,000.00 per year! I just began treatment on Tecfidera© with the understanding that it was relatively safe. I believe it is. However, a German Doctor, Dr. Jorg Shultz a neurologist at the research university in Aachen, Germany, was treating patients with psoriasis using Fumaderm©. It contains the same ingredient used for Tecfidera©, fumaric acid. One of his patients came down with PML.
He stated after Tysabri© and Tecfidera© are broken down in the body, they become essentially the same product! All of these products Fumaderm©, Tysabri©, and Tecfidera are manufactured by Biogen©! Are you surprised?
Read the article titled; "Ingredient In New MS Drug Linked To Brain Disease"
here in Drugs.com then you decide. I don't intend on taking Tecfidera© for more than 2 years in order to minimize the risk factor.
Discuss all your findings with your family. I hope this long answer helps you make a decision. May God bless you. "

http://www.drugs.com/answers/tecfide...ri-713171.html

See what you think, decide what you may.... it is all a 'crap shoot' anyway. We all do what we need to do to get through.

[Kitty]

My Neuro wants me to try Tecfidera. He says it's safe. But then I read something like this and I'm back to feeling apprehensive about it.

It's like Lynn said.....it's all a crap-shoot. Everyone's body chemistry is different so everyone will react differently to the drug.

I'm just not ready to roll the dice yet.

[SallyC]

Good Lord!!! Please use your common sense and be careful
out there.