Tag Archives: Tecfidera

MS: You make me wanna “Sweat Like A Girl”!

A few weeks ago, I went to a very nice dinner hosted by Gilenya at “The Marble Head Chowder House”. A Neurologist and MS Specialist spoke for a short time about MS and then for an even shorter time about one of the new disease modifying therapies, Gilenya. It’s a pill that has pretty much the same efficacy as all the others pills, however it’s one pill a day, not two.

For half of a second my interest was peaked, and then they mentioned its heart concerns and the special care that must be given when first taking the drug.

Hmmmm, maybe not :/

If it ain’t broke, don’t fix it. Sure my Tecfidera is twice a day but I’ve had zero side effects and if I did, heart health would not be one of them.

I did however, meet some really nice people. There were sisters who both have MS; talk about partners in crime. Another woman who brought her 2 siblings so that they could have a better understanding of the disease; I can’t take ALL of my siblings anywhere all at once, it’s too embarrassing. There was one other woman who like me, brought her husband. That couple talked a lot about Hippotherapy which I found fascinating. They convinced me that it was beneficial! I wish I could convince my Insurance Carrier of that.

All in all we had a great night! I think we should get together again and have a mini support group. Next time we should meet somewhere more exciting…I dont know, maybe for a class at “Sweat Like A Girl”. It looks like fun. I’ll let you know how it turns out.

We_Can_Do_It!Comments:

 

4 Comments

Filed under Mind-Body Connection, MS and Exercise, MS and Oral Medication, MS Drugs, Uncategorized

I want an MRI :/

 

I see my Neurologist today and I’m actually going to ask for an MRI.Fotosearch_k2478801 I’ve been on Tecfidera for quite awhile now and I’d like a comparison picture, a before and after if you will. I’m sure I had one just before I started the new drug. We’ll see what they say.
It’s time now to make that list, the one of symptoms since my last visit. I always seem to forget at least one while I’m there. Because I try to focus on the positive, “in my mind” I make small of issues when they’ve gone away. I’m learning to not “blow them off”. Who knows, maybe they can tell me something helpful. Like how to avoid that wall even when I see it coming!

What helps me to get through an MRI is definitely MEDITATION. If you haven’t tried it already…you should!

COMMENTS: What helps you get through an MRI?

2 Comments

Filed under MS and Disease Modifying Drugs, MS and Oral Medication, Neurology, Stress Management

MS : Re-entering the Atmosphere!

Re-entering the work-force is like re-entering the atmosphere, and I’m going in like Sandra Bullock in the movie “Gravity”

gravity_660_101013050908

“Gravity” Movie Trailer

It’s violent and unstable; her shuttle burns up and falls apart all around her. She’s not sure if she’s gonna make it, but, her only choice is… Well, it IS a movie, but that pretty much sums it up.

Back in my real world, I’ve got a JOB! I haven’t been this excited about having a job since I was sixteen and one day. That’s when I began stalking the manager of our local grocery store, “Big Bear”. He made the mistake of telling me that I’d have to be 16, and I WAS.

I can’t finish this post now, or do anything else because, I have a job:) That means its 5 minutes til 8 and I have to go to bed at 8. Why, because I need to be up at 4 to practice mindfulness meditation for 30 minutes, stretch (with a teeny bit of yoga) , dress, have a muffin with tea, take my Tecfidera and Ampyra, leave the house at 6. Work til 9, am home by 9:30, big breakfast at 10 and sleep at 11. Wake at 12,  groggy til 1, leave for work again at 1:30. Work til 4, gym by 4:30, exercise bike for 30 minutes, leave by 5:30, home by 6, dinner at 7, take Tecfidera and Ampyra, shower and bed by 8.

BOY, I want to finish this, but I can’t. I’ve got SO much more to tell you :)Like: Why now? What have my doctors said? How much have I revealed about my MS?

Please come back soon:)

COMMENTS: What do you think my job is?

Hints: Must leave the house and be physical (no stay at home-computer work), must engage people, love kids, must require few hours(part-time), relatively low stress.

2 Comments

Filed under MS Drugs, Riding Out a Relapse, Stress Management

Tecfidera Doubts, I don’t THINK SO!

ID-1005doubt

Tecfidera has only been approved for about month. I started taking it 5 days ago, and, wouldn’t you know, eyebrows are already raised. There have been some reports floating around about a possible connection between Tecfidera and the development of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability.

This is what I have found so far, only 4 psoriasis patients in Europe who have been treated with drugs that contain Fumaderm over the last 19 years have developed PML. 347 MS patients using the drug Tysabri, which also contains Fumaderm, have developed PML. That’s since Tysabri was approved in 2007, only 6 years ago to treat Relapsing Remitting MS (RRMS). So, it seems to me that PML does not become a threat to my health unless it is used in Tysabri, to treat my MS.

My reality is:

I’ve had RRMS for almost 20 years.

I began taking other disease modifying drugs (DMD) about 17 years ago.

Until now, I’ve not been overly concerned with progressing to Secondary Progressive MS (SPMS). What makes now different? I stopped all DMD roughly 2 years ago. A little more than 1 year ago, I entered the most severe relapse that I’ve had to date, and it has lasted more than a year. Could it be that the DMD’s had delayed my progression to SPMS. By stopping all DMD drugs, could I have allowed SPMS an opportunity to take hold?

I did not take the earliest approved oral DMD because my Neurologist encouraged me to be patient and wait for Tecfidera, based on the limited information there was about ALL of these drugs. He deemed Tecfidera to be the best for me. He also wanted me to continue the DMD that I was using, until Tecfidera was approved.  I did not.

So here I am, 5 days into Tecfidera, with this new information. I am not the least bit deterred.  In a perfect world I would give any new medicine more time on the market before I used it, but my world is not perfect. I am now 50 years old and at a crossroad. If I were to wait 10 years before going back on a DMD (so the drug could be on the market longer), I would be that much closer to SPMS. I’m not willing to wait any longer. All of the data indicates that taking Tecfidera is not a life threatening-risk.

As MSers, these are the most difficult decisions to make.  No one should be judged for the choice they make, unless you are willing to take the disease, life WITH IT, and all of the uncertainty of its future.

I wish us all well,

Estizer

 

 

 

 

3 Comments

Filed under MS and Disease Modifying Drugs, MS and Oral Medication, MS 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?

10 Comments

Filed under MS and Oral Medication, MS Drugs