Tag Archives: Aubagio

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

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.

blogAubagio

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

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Filed under MS and Oral Medication, MS Drugs, Neurology

New MS Drug –Aubagio…I’ll have to wait even longer!

The Wicked Wizard (Neurologist) of the East (Philadelphia) Instructed his army of flying monkeys to kidnap me and take away my Aubagio dreams…he told me NO AUBAGIO!

Wicked Wizard: “I don’t care what the wizard of Chicago told you, I will wait a YEAR before I prescribe this new MS drug. If you insist, let the Chicago Wizard give it to you! I will not argue.”

Me: (steaming) “I have been taking these shots for TWENTY YEARS, (in my head-you *#@%^) and Aubagio has successfully been used on HUMANS for the last THIRTY YEARS for rheumatoid arthritis, meaning it’s been watched for THIRTY YEARS ALREADY, what more do you want!?”

Wicked Wizard: “I will not argue.”

Flying Monkey: (Associate Doctor, Both hands on chest referring to self) “You know WEeee are the MS specialist.”

Me: “I will not argue either, but I will wait for an explanation that I understand.”

Wizard: “For 30 years they saw how this medicine affected the joints in people, NOT how it affected their brain, and MS affects the brain.”

Me: (still angry) “Deaths are not an issue, right? So, what’s the problem?”

Wizard: “The Blood Brain Barrier! That is the problem!”

Now, the nice little Monkeys make it their business to try to explain to me the Blood, Brain, Barrier. The Wizard, gruffly asks if some internet information would suffice? By now, my eyes have glazed over with all of the medical jargon, but buried underneath all those words I’m still alive. Deep within my brain, I have heard this term. Either, I have taught it, or learned it, but at some point it has been in my academic life! That tiny, tiny sliver of light allows me to laugh at the Wicked Wizard as he and his Flying Monkeys leave the room. I WILL SURVIVE(Donna Summers) I’ll Research the Blood Brain Barrier!

Has anyone else been turned down by their Dr. for Aubagio? How do you feel about it?

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