So…I’m positive.

Doc: It came back positive.


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?



Filed under MS Drugs

7 responses to “So…I’m positive.

  1. I’ve been on a lo of different DMDs Now BG-12 AKA Tecfidera
    So far so good


  2. This frightens me as I am not aware of this test. My daughter is unable to take the steroids-medications for MS and as such, I have not stayed up-to-date on the new mediciations. I’m thinking that this is not to smart… the more knowledge the better. *sigh* Am I understanding correctly that you are now or going to be on something new? And what is JC virus? Is it best to google it? and that will scare the begeebee’s outta me?


  3. and btw, *MegaHugs* for you. ❤


  4. No, No, No Tink! Please don’t be frightened! Oh, and I know how scary the internet can be. I didn’t know WHAT the JC Virus was either at first. I should write more about it, but know this; many people in the population have it, and it’s basically not a problem. ONLY if you have MS, annnnnd you chose to use Tysabri. And even then, there are cases where a doctor and patient decide that it’s not too great a risk; or the risk is worth it, and they use it anyway.
    You HAVE to be knowledgeable to be LESS frightened. Trust me; there are so many new and exciting ways to manage MS these days; there is definitely something that will work for your daughter. I’ve never used steroids:)
    I want to say SO much, but I’ll have to come back…promise:)


  5. PS. thanks for the hugs Tink. Side note: Tink, I started this blog BECAUSE I found all of the MS information to be overwhelming AND frightening for years. I want my blog to be somewhere you can get accurate, well researched, yet understandable facts. It’s gonna be okay…really. We just have to hold on to each other, then it’s not so bad.


  6. Yay! how long have you been on the Tech? I took my first one, just an hour ago 🙂


  7. Hi 🙂 Thanks for the quick response. This journey of MS has been the most frightening and powerless EVER. I am ‘Blessed’ to have been put in peoples path that have provided knowledge for me to learn and get strength from. Thank you.
    I also started my blog due to MS and what has happened to my family through our trial. I appreciate being able to come here, to your blog, and gain the knowledge that I will need. **HUGS** and thank you for sharing.


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