Tag Archives: disease modifying drugs

Tecfi-WHAT? Candy for my brain!

Tecfi- WHAT??

brain.candyCandy 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?

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Filed under MS and Oral Medication, MS Drugs

Monsters, INC.

There are monsters in my closet, waiting to emerge.

monsters_wp_04_1024

“You’ve got active lesions in your brain”. That’s what my neurologist said to me as we looked at my brain MRI. My response: “So what…that means nothing, you’ve probably got’em in your brain too. Have you ever looked?”

I learned a long time ago that MS symptoms and lesions didn’t necessarily go hand in hand. You could have symptoms with no lesions, or lesions with no symptoms. You could have many lesions with very mild symptoms, or a few lesions with lots of symptoms.  So…I think the “monster in my closet” approach is one way that doctors try to scare new patients into taking these disease modifying drugs(DMD).

Don’t get me wrong; I love the drugs! I’ve been on them since they were first approved by the FDA. I believe they are ONE of the reasons that in the twenty years that I’ve had RRMS, I have not progressed to SPMS. Statistically 50% of all patients 10 years into the disease, do progress from RRMS to SPMS. I wonder if that statistic was calculated before the development of the first disease modifying drug in 1994. If so, I would expect that statistic to be even better for patients diagnosed after 1994 who have had the benefit of these drugs.

The good news is active lesions along with symptoms, means that I’ve NOT progressed into SPMS. If I were symptomatic, with NO active lesions this far into the disease, that would be indication that I had moved from RRMS into SPMS. So, YAY for my active lesions! This also says to me, this relapse will end (remit).

The moral of this story is…make no decision out of fear. I will choose a new DMD very soon; not because there are monsters in my closet waiting to emerge, but, because I believe these drugs have had a positive effect on the course of my disease.

IT’S NOTHING PERSONAL; IT’S JUST THEIR JOB.

Thoughts and Comments:

Have you decided to use any of the DMD’s?

If so,do you feel that they have helped at all?

ps. I’d love for you to join me on Facebook: https://www.facebook.com/pages/MS-Open-Mic/579107032117769?fref=ts

and Twitter: https://twitter.com/EstizerSmith

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Filed under MS Drugs, Neurology