Tag Archives: Tysabri

Tecfidera Doubts, I don’t THINK SO!

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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

 

 

 

 

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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?

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Filed under MS and Oral Medication, MS Drugs

So…I’m positive.

Doc: It came back positive.

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Me: silence, then soft…”Damn, I guess I’ll go to plan B.”

Doc: “Now this doesn’t mean…“ I cut him off

Me: “This is actually good. Just yesterday I wanted to go with Tysabri, but, that brain infection thing was starting to give me cold feet. I’m not so sure I was comfortable with the risk.”

Tysabri alone is not the problem. If you test positive for the JC Virus, along WITH treatment with Tysabri, that’s a problem, or it can be. Patients who test positive with the JC Virus are more susceptible to PML; Progressive Multifocal Leukoencephalopathy,  a viral infection of the brain that usually leads to death or severe disability.

Doc: “You can still take Tysabri if you want. These are the 3 things to consider that would work against you: 1) If you’re already on lots of other medicines because you’re dealing with multiple health issues 2) You’re positive for the JC Virus, and 3) You’ve been on Tysabri for more than 2 years. Since you have only one of the three, the JC Virus, you could still take it.”

Me: “I‘ve already decided that Aubagio would be it, if I couldn’t take Tysabri? Are there any problems with it?”

Doc: “Well, it could compromise your immune system. It’s actually a “baby chemo” drug. It attacks rapidly dividing cells, like cancer cells; it is thought to slow the progression of MS by attacking in the same way, the rapidly dividing immune cells, which attack your myelin. Here in lies the term, “baby chemo” drug. Attacking these cells is good because it is thought to slow down damage to the myelin sheath, but, it also reduces the number of important immune cells.”

Me: “Well Tysabri is out for me, and you say Aubagio is a baby chemo drug. What if I get breast cancer in, say 2 years, and I’ve taken Aubagio? Will I then, not be able to receive the chemo that I’ll need because my immune system has been compromised? Or, might it be less effective?”

I could hear him thinking, O.M.G! W.T.H! Where did this lady come from?!

Doc: after a short pause, “No, not really. There is another drug I want you to consider. It’s only been approved by the FDA for a few weeks. I want you to goggle it and tell me what you think on Monday. We’ll make an appointment then for you to come in and sign the paperwork.”

Me: thinking, it’s only been approved a few WEEKS! Are you crazy?

Doc: “I don’t usually jump in like this, but, I’m sure this is the best drug for you. I’ve gotten to know you, and if we wait for you to decide, it could take MONTHS. You prefer more holistic approaches, and you’re asking me questions about cancer! This is the least potent of the three. The results from the test studies are good. It’s also has an excellent safety record. Things would have been different if you had come to me at the age of 22, with LOTS of active lesions, and symptomatic. You would have been a good candidate for Tysabri, our even Aubagio. We’ve talked about this at length; with 20 years in, there’s very little that a stronger drug will do for you. It’s more sensible to go with the lesser of the three, while continuing to protect your nervous system.”

Me: pause, “Okay Doc, how bout I research it, come in on Monday, and then I’ll let you know which one I’ve decided on.”

Doc: “No. This is the best one for you. You do the research and then come in and sign the paperwork so we can get it started.”

Plan B: I start the new medicine, tomorrow.

COMMENTS: Are you on any of the “new” disease modifying drugs? Have you tried more than 1 DMD? Why did you switch?

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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!

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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!

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Filed under MS and Disease Modifying Drugs