Tecfidera and PML: Is there a direct connection?

By Lisa Emrich, Health Guide Tuesday, April 30, 2013

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How important is it to you to have full access to the same information neurologists do when it comes to medications, clinical trials, and post-marketing data from a pharmaceutical company? Or full access to your medical files which include medical history, doctor’s notes, and testing resu...

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Michaelbgerber

4/30/13 3:10pm

Damn! I feel like I have been waiting for this drug (BG–12) for at least 9 months and now that it's here, what do we learn? That PML may be a factor. But based upon what I am reading, and the fact that I do not have psoriasis, it looks as though my risk of developing PML (I have been exposed to the JC virus) is virtually nonexistent. I do intend to have the conversation with my neurologist, but I am pretty sure that as soon as Medicare approves the payment for the drug, I will be starting on it.

Thank you so much for always delivering the best information on MS. As long as we have you, we may not need our neurologist.... except for writing the prescriptions and stuff!

Michael

Lisa Emrich, Health Guide

4/30/13 7:50pm

Michael,

I know that there has been a wave of fear travel throughout the online MS community. But you're right, the risk is very low and it hasn't been shown that MS patients taking Tecfidera are at an increased risk at all...not yet anyways.

I hope that you will let us know how you do on Tecfidera when payment gets approved. It sounds like an intriguing medication.

You flatter, Michael. I just like to stay informed.

Lisa

Suz

4/30/13 7:30pm

Hi Lisa

I have been seriously considering Tecfidera. I have had psoriasis (mildly) my whole life. Just had IV steroids wks ago for a recent flare up of symptons and due to this I was about to turn the corner and start taking interferons. Tecfierda was seemingly the most appealing to me. I am unclear that the 347 case of PML since April 2013 are just in MS patients w/o psoriasis? Sorry I'm confused - I go see my neuro in 2 weeks and was going to discuss starting but need to gather more facts about this drug b4 I do. thanks for posting the info

Suz

Lisa Emrich, Health Guide

4/30/13 7:44pm

Hi Suz,

I'm sorry if the paragraph was unclear. By mentioning the 347 cases of PML in Tysabri patients, I wanted to point out that the experience of PML in Fumaderm patients does not come close to being the same as that with Tysabri.

I've read comments from MSers online who are worried that Tecfidera will be as risky to take as Tysabri when considering PML risk. It does not come close, but it does carry it's own risk profile which includes flushing and digestive problems (eg. diarrhea).

Unfortunately, I don't think that information regarding any Tysabri patients comorbidities have been shared, or maybe even researched. Have no idea how many of those Tysabri-related PML cases may have psoriasis, or RA, or any other additional autoimmune disease. That would be an interesting analysis.

I hope that you are feeling better from the recent psoriasis flare. How is your MS doing?

Lisa

Suz

4/30/13 7:56pm

Hi Thank you for more info on this...

The flare was MS flare ... ugh...'officially dx'd in oct after repeat spinal.

I am starting to feel better - thank you so much for asking.. feeling a bit stronger now and gaining strenght again.

I had steroids 2 weeks ago and things atsrted to 'lift' about 5 days after last IV. The eyes are thankfully no longer double and blurry and walking better in last few days.

will keep researching the tecfidera and fill you in! thanks as always for posting info about all of it. so grateful.

Suz

Jenna

5/ 7/13 10:36am

I read in some article that one of the deaths from PLM had been taking methotrexate. I also have RA (Jan 2013) and MS (1998) I couldn't take Tysabri because I kept on getting random infections. I am JC virus negative.

I and my Neuro have been waiting for this pill, I got off the Tysabri in Nov. I am having major problems in my Neuro and my Rheumatologist getting together on what is best for me and safest for both diseases. Right now I am only on methotrexate. Is Tecifedra a biologic? No one seems to know. Do you guys know?

Thanks!!!

Jenna

Lisa Emrich, Health Guide

5/ 7/13 8:53pm

Hi Jenna,

Welcome to MS HealthCentral. I know how tricky it can be to try to find a good treatment when you have both MS and RA, because I also have been diagnosed with both diseases. Like you, my MS came first, followed by RA.

I started with Copaxone for MS and when RA was dx, we added methotrexate and sulfasalazine. The methotrexate has definitely worked well for me (25mg weekly). In late 2009, we dropped sulfasalazine and Copaxone, and switched to Rituxan (a drug which is approved for RA and has been studied successfully in MS). Rituxan has benefited both diseases.

I hope that your doctors can manage to get their act together to find an overall treatment approach which will work well for you. In answer to your question re: Tecfidera, I don't believe that it is a biologic.

So how are you doing managing both MS and RA?

Lisa

Jenna

5/ 8/13 10:55am

Hi Lisa,

Thank you for your response! I was DX with MS in 1998 after optic neuritis and 3 spinal lesions. I was on Avonex for 8 years until a new neuro told me I never had MS I had Devics which there was no cure for (because I never had brain lesions) I just truely belived I had MS after 10 brain lesions and a new cervical lesion 2 years ago. I was on Tysabri for 8 months and I kept on having uterine infections. My last infusion my hand blew up the next day my other had swelled up also and hurt SOOOO bad. I went to the ER they thought I had broke both my wrists! So lots of steriods and indomethacin and finally to the Rheumatologist I went. I was only DX in Jan. RA hurts, it has affected my fingers wrists and now feet. It scares me because I know with the pain there is damage happening. MS gave me pain, but I knew there wasn't 100 bees stinging my leg. I try to stay off the pity pot, I just turned 40 last month and I have a seven year old daughter. I eat healthy, exercise as much as I can... everyday is different. I never just jump out of the bed anymore.

Thanks for asking I son't know anyone else who has this dual DX I am writing down the drug you talked about and talking to both Doctors so thank you!!

Jenna

Lisa Emrich, Health Guide

5/ 8/13 11:31am

Jenna,

Our stories are so similar. I also experienced optic neuritis first (in 2000), then was dx with MS 5 years later due to 3 cervical lesions (in 2005). No brain lesions. I still don't have any brain lesions. At the age of 39, I was dx with RA after determining that I really did not have carpal tunnel syndrome (in 2007). The pain was excruciating at that time.

There is now a blood test which can help to dx Devic's (neuromyelitis optica, or NMO). It wasn't available before 2006, I believe. Coincidentally, Rituxan is used successfully to treat NMO, but with a slightly different protocol of doses and frequency of infusions than with RA. (I would have to look that up for sure, but I think that it is used differently.)

With Rituxan, it is supposed to be used in moderate-to-severe RA patients who haven't responded to an anti-TNF drug. However, since you have MS, you can't use an anti-TNF drug for RA. Rituxan is used for many different conditions including lymphoma and carries serious risks. Being JCV-negative is a big plus, however. Definitely ask your doctors their opinions on what might be appropriate for you. I just know that I've responded beautifully to the way we are treating my MS and RA.

If you have any questions, please feel free to ask.

So glad to have met you.

Lisa

Tecfidera and PML: Is there a direct connection?

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