Tecfi-WHAT? Candy for my brain!

Tecfi- WHAT??

Candy for my BRAIN! My new MS disease modifying drug (DMD)

Yeah, that’s right …I’m on a new MS disease modifying drug that I’ve never heard of, and it was only approved by the FDA last month! I’m the one who wants everybody else to take these drugs for a few years first, so that I can see what happens. Well, guess what? I don’t have a few years to wait.

Reality check: This disease existed a bazillion years with no help in site, so, it’s time to take action; well, more action. The very first drug was approved just as I was diagnosed. I started taking it a couple of years later; I was scared because it was so new. Now, they’re coming out so fast, I can barely keep up. Years ago, when my doc felt like I had reached the “glass ceiling” of Avonex (injected once a week), I switched to REBIF (injected three times a week). REBIF worked well enough, until I couldn’t tolerate it any longer. It, or ANY of the injectable medicines. After being on those for so long, the side-effects just wore me down. How lucky am I for this “burn-out” to occur, just when so many other drugs are being approved. Gilenya, Aubagio, Tysabri, and now…TECFIDERA!

I take a Tecfidera capsule twice a day and that’s IT; no more SHOTS! It’s the new “candy” for my brain.  I do look at it that way, when I think about the difference it will make on my future. It has also been known formerly as, BG-12, which is a super big plus to me. Back in July 2012, when I saw my favorite Neurologist, he promised me that “very soon” there would be two new drugs approved that he would agree to me taking. We have a great understanding; he knows what’s important to me and I know those same things are important to him, so I trust him. I call him “OZ, The Great and Powerful”. BG-12 was one of those drugs.

In clinical trials, it rivals the other disease modifying drugs in, relapse and reduction of disease activity shown on an MRI. Another super plus on my list – it has been used in Germany for decades, at much higher dosages, to treat Psoriasis.  There is still that little question I have about the blood brain barrier, and how THAT’S affected by this drug in the MS brain. If anyone knows, please tell me. Otherwise, we’ll find out in due time. What we DO know now, from its use in Germany, is that it does not cause death (that’s kinda important).

The lack of side effects pretty much sealed the deal for me. The most common one is, “flushing”. This lessens and usually goes away within the first month. It’s a sensation of heat, or itching, and a red blush in the skin. HA! That’s MENOPAUSE for a month; you don’t scare me! Bring it on!

Candy for my brain:)

Did I mention that this candy costs $8,900.00 for a one month supply? Have no fear…co-pay assistance is here! I pay $10.00 a month, and so can you. The drug company has a $10.00 co-pay assistance program. There are no income requirements.  You can enroll every year, as long as you take Tecfidera. People covered by Medicare, Medicaid, the Va/DoD, or any other federal program can get help from MS Active Source with the cost.

THIS IS NOT A COMMERCIAL! I do not work for the drug company. I am just starting a new medicine that I’m excited about. I want to share:)

COMMENTS and THOUGHTS: What have your experiences been with Tecfidera?

TYSABRI…yes or no!

Be careful what you ask for…you might get it! Now I’ve got too many drug choices, too little time!

I had stopped taking REBIF for almost three years because; I just couldn’t do it anymore.  Two years after I stopped, I had my worst relapse to date.

Hmmm, is it because I stopped the REBIF?

I re-started the REBIF about six months ago, only because there were alternatives to these injections in sight , so I knew this would be temporary. Now, the problem is, I’ve got too many drugs to choose from.

I stopped the REBIF again, two weeks ago. I’m waiting on the results of my JC virus blood test   which I will need before I take Tysabri. I KNOW it will be negative so I’m hoping to start Tysabri as soon as possible.

Should I take Tysabri or Aubagio? They are two totally different animals. Tysabri is given by a once a month infusion, and Aubagio is an oral pill taken daily. The side effects are vastly different and I’m having trouble deciding. It’s like comparing apples to oranges; which is why I’m asking for your help.

Please tell me what your experience has been, on ANY of the newer MS Disease Modifying Drugs. My biggest relapse began about 18 months after I had STOPPED taking the REBIF. It’s frightens me to not be on ANYthing now; but  I just can’t go back to the injections.

Be careful what you ask for…you might get it!

We Could Have Had It All: Aubagio

After combing through Aubagio’s website I came away with nothing. I called Genzyme, the drug company that makes Aubagio, 3 TIMES. I got Tim on the “help” line. After listening to my questions about the blood brain barrier (BBB), and then the molecular size, in Daltons, of the particles that make up Aubagio,Tim on the help line couldn’t get enough HELP to help me!

I refused to give up. The best Tim could do was refer me over and over again back to my physician. THAT was where I had started! All I really needed was a Genzyme scientist or research specialist! Why didn’t they have somebody like THAT on call!?

My confusion: I have one world class Neurologist who is “for” Aubagio and one who is not. The one who is not only gave a vague uncertainty of the blood brain barrier as his reason why. Now the other neurologist is not returning my calls with a prescription for Aubagio or an explanation as to why he’s had a change of heart.
Then, the Wall Street Journal prints an article stating that doctors are suggesting patients not rush to the new medicine.
http://online.wsj.com/article/SB10001424127887324595904578123420502281086.html

So…I’m on my own with my magnifying glass and my medical journals! What I find is that Aubagio, like the other disease modifying drugs, reduces relapses and such, but I question whether or not it compromises the BBB, and if so, how it affects the MS brain, its many lesions and their various changing locations within the brain? The unanswered questions and lack of understanding has made me decide to continue my Rebif regiment. I’ll continue to inject until Aubagio has been on the market longer. How long? I don’t know.

What treatments have you found to work best for you?
What alternative or holistic treatments would you suggest?