Rational Ranting!

[October22]

So I came home today to find a package from Biogen. I was really surprised because I have called them and my pharmacy/insurance company to find out the status of my prescription and have been juggled back and forth.

I'm not in a huge hurry to start Tecfidera because I'm cautious about it's newness but anyway...

In the package was a pill box and Tefidera's official booklet and drug info sheet. Kind of funny because there were no actual pills included but Teva did the same thing with copax. They sent me a sharps box and autoject weeks before they even called me to schedule shipping.

As I was studiously reading the drug info, I noticed there's a lot of crap in the inactive ingredients. Sodium Lauryl Sulfate being one of them. This is a KNOWN carcinogen that I won't even buy shampoo if it's a listed ingredient and now I'm supposed to ingest it twice a day? Perhaps this is why in the two year study, rats ended up with stomach and kidney cancer???

Is it too much to ask that my MS drug not give me cancer???

Frustrated beyond belief. I don't want to progress and have flares and end up disabled (same as we all want) but I also don't want to give myself cancer and die sooner.

I don't get it. Sorry for unloading. End rant.

[durgastiger]

I am with you

I read the same thing. I got my Tecfidera today and I am going to start tomorrow morning on the 120mg.

I wonder the same thing about all the meds. How long can I stay on Tecfidera until my Liver and Kidneys have enough.

So I'll max my liver and kidney with the right foods, minerals and herbs, kefir probiotics and juicing etc and maybe in 3 or 4 years the next best thing will be out.

I like the odds and I'm hoping I'll be off Tecfidera and on to the next new drug.

People were on bg-12 for 5 years in the trials and no stomach cancer etc so if I get 5 years out of Tec. before a new drug comes out I'll be happy with that.

[MarkLavelle]

Rational debunking!

Both Wikipedia and Snopes.com say that SLS is not a carcinogen, so I wouldn't worry about that too much (but neither claim it's good for you, either!).

It's perfectly reasonable to wonder if the SLS has anything to do with the known side effects, though...

[October22]

This stinks!

Thanks for the replies! I'm too afraid to stay on copax knowing I'll progress but also afraid to start tec knowing it's too new for all the unknowns to be known.

Wish I had a crystal ball...

[fairpace]

Maybe I'm missing something, but I don't see anything regarding the liver in the Prescribing Information under Pharmacokinetics, Toxicology (nonclinical or animal). Elimination section states 60% excreted through lungs.

The Nonclinical Toxicology & Animal Toxicology contain some kidney info, but I can't wrap my head around the info. My wishful impression (and this is just my humble opinion which could be entirely incorrect) is that the doses for the rats, mice & monkeys were higher than the dose I will be taking (ie, that is the animal doses that created tumors or kidney toxicity.)

I will take the gamble. The drug does not have an FDA Black Box label.

Sodium Lauryl Sulfate is in many over-the-counter prescriptions. It's in the naproxen that I take every night for bursitis. It's down on the list of ingredients for Tecfidera, I will not be worrying about this either.

My approach is that new, and hopefully better treatments will come down the pike in the coming years. I'll take the Tecfidera as long as I can tolerate it and as long as it keeps my progression at bay. (If I ever get started. Insurance approved, but delivery not yet scheduled. Maybe next week.)