Starting Tecfidera

[Cat Dancer]

I've been on the Tech for 2 months now, and at full dose for the last 6 weeks. After the first week, I've had no problems with it that I know of. No big improvement, but no other issues.

[agate]

It's good to know you've made the adjustment.

Guess we're not supposed to expect improvement on most of these drugs. We're supposed to be very happy if we don't get worse--or maybe I've got this wrong.

[Cherie]

Cat,
So glad to hear that the Tecfidera is not causing you problems.

Considering going back on Rebif...well tolerated but chronic UTIs and some pretty major site reactions.

Considering going back on Cytoxan but at a lower dosage and frequency (not looking forward to losing my hair again)

Considering Novantrone although it has generally fallen out of favor since Tysabri (I am JVC +) entered the picture because of the potential of cardiotoxicity and Leukemia 3-5 years after stopping med.

Lemtrada, if it is approved , has a 30% incidence of auto immune Thyroid disorders showing up.

I am just not where I want to be health-wise. Refilled the pool yesterday and last evening it hit me how very out of shape I have become with my increase in activity. Exercise just cannot be put on the shelf because I am too busy!

[lawnerd]

Cherie,
It might be more appropriate for another thread or an email, but if you are willing to share, I would be interested in learning about your site reactions with Rebif.
Sounds like we are both in something of a treatment quandry.
Thanks in advance for considering my request,
lawnerd

[rebeccakris]

3.01 Index - JCV Test - What Does this Say About My Increased Risk on Tecfidera?

Index value of 2.8 is as high a risk for PML as any I have seen.

I am new to this forum. I am researching what my JC Virus test results mean. My test came back positive with 3.01 index. I recently stopped Gilenya because my immune function was too low and I was always sick. I had been on it for 2-3 years. We decided to switch back to Tecfidera (which I took only briefly prior to Gilenya). I am scared because I had to ask my neurologist to order the JCV test and now he doesn't seem to think the results are important. After receiving the results, I emailed him asking whether this means I shouldn't start the Tecfidera and also asking what the high index meant. His response (a quote): "It should not be a risk while on Tecfidera, and it is okay to continue therapy. If you were on Tysabri, we would have to consult other options due to the risk of PML but that is not the case with your current medication [Tecfidera]."

I know this is wrong. I immediately contacted Biogen Idec. Biogen confirmed that there is a real risk of PML with Tecfidera and that the risk is increased with positive JCV test and a high index. But the representative couldn't tell me what the 3.01 index meant. She told me I should talk to my neurologist about it (the same neurologist who is telling there is no risk of PML with Tecfidera). Thanks, Biogen. That's helpful.

I can't find information about exactly what a 3.01 index means--like how does that correlate with increased risk? Am I now at a 5% risk, 8%, etc.? And I obviously can't trust my neurologist and need to find a new neurologist. But in the meantime, I am in limbo. I won't start Tecfidera again until I have answers I can trust.

Doctors can be so frustrating. PML seems so scary. Shouldn't I (all of us) be able to get better information about this?

[agate]

Hi rebeccakris, and welcome to this MS board--

As I understand it, having the JC Virus present at all puts you at some risk of PML if you're taking Tecfidera, and the higher your JC Virus level is, the greater your risk. And even if you don't test positive for JCV, you can still be at risk of PML.

There's a way of calculating your risk if you're on Tysabri that you might want to look at even though you're talking about Tecfidera:

Only registered and activated users can see links., Click Here To Register...

The PML risk with Tecfidera is regarded as lower than with Tysabri:

Only registered and activated users can see links., Click Here To Register...

There's also this, which outlines the UK's guidelines for monitoring PML risk with Tecfidera:

Only registered and activated users can see links., Click Here To Register...

[Sunshine]

Welcome Rebecca.
It sounds like you need a new neurologist. It isn't a deeply held secret that there is significant risk. He is awfully cavalier about your health and your life. And ignorant.

If you want to, do start a new thread, tell us about yourself?

[Virginia]

Hi Rebecca,

I just wanted to say welcome to the forum. I have nothing that I can add regarding the risk of PML and Tecfidera. I am on Rebif and have been for over 14 years, so I don't have much experience other than that to draw on.

I hope you will remain a part of our forum.

[SalpalSally]

Welcome Rebecca!

[Frog42]

Doctors can be so frustrating. PML seems so scary. Shouldn't I (all of us) be able to get better information about this?

We should but often don't. It sometimes seems like drug companies have doctors in their back pocket.

The winner is,apparently, going to be whoever gets the most money out of it. That won't be the patient.