First Month on Tecfidera Going Suspiciously Well...

[littlestbabie]

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[NHE]

The one thing I'm worried about is how uninvolved my neurologist is. He put me on this medication without even a blood test to check my initial white blood cell count. And now I've been reading all this stuff about how Tecfidera is known to cause PML in individuals, especially those who tested positive for the JC Virus! I've never gotten tested for such a thing because there was absolutely no need, but now I'm very concerned! How often do you get your blood tested to check your white blood cell count? And did your neuro have you tested for the JC virus? Do you participate in regular testing? (If so, how often?) I haven't had any relapses since April-August of 2015, but just a few weeks ago I did have a concerning visual episode where it was like my eyes couldn't focus or my pupils were rapidly/repeatedly dilating, and my vision went blurry for about half an hour. Is this something I should be concerned with in the context of PML, or my MS in general? I'm just freaked out & I have no faith or trust in my neurologist at all, honestly. But I'm not even sure how to legitimately contact him and bring up these concerns, or just ask for a different doctor. Obviously I have lots of questions and concerns.

These issues, PML and lymphopenia, are discussed in the doctor's prescribing information document for Tecfidera.

http://www.tecfidera.com/pdfs/full-prescribing-info.pdf

• _______________ WARNINGS AND PRECAUTIONS _______________
• Anaphylaxis and angioedema: Discontinue and do not restart TECFIDERA if these occur. (5.1)
• Progressive multifocal leukoencephalopathy (PML): Withhold TECFIDERA at the first sign or symptom suggestive of PML. (5.2)
• Lymphopenia: Obtain a CBC including lymphocyte count before initiating TECFIDERA, after 6 months, and every 6 to 12 months thereafter.
  Consider interruption of TECFIDERA if lymphocyte counts <0.5 x 10^9/L persist for more than six months. (5.3)

It seems that it should be obvious that anyone on Tecfidera should have their JC virus status and lymphocyte counts tested regularly.

[GW8476]

My neurologist also seemed uninvolved with my conditions. Lucky for me I did my own research and told him I needed to get my WBC count check before starting Tecfidera. I'm sure he will need to be reminded of how often it should be checked which is 3-6 months regularly I think.

[littlestbabie]

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[lyndacarol]

I ended up sending my neurologist a strongly (but politely) worded email explaining my concerns and linking all the research that I have done. I'm going to request that I undergo a CBC to check my white blood cell count every six months - my neuro said he had planned to just check it yearly barring any complications, but I feel as though it needs to be checked more often than that. I'm also going to be getting tested to find out my JC virus status! My neurologist was rather dismissive but worked with me in setting up the tests. He said that there has only been one PML case in patients taking Tecfidera. I'm not sure if that's true or not, but I feel a lot better knowing I'm going to be monitored more closely anyway. I wish I could find another neurologist honestly but there really arent any other offices in my area that accept my insurance :\

in my opinion, you are absolutely right to be concerned about your JC virus status. You are right to insist on regular, frequent monitoring with tests.

After all, this is YOUR health. And the risk of PML is something to take very seriously!

[littlestbabie]

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[littlestbabie]

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[NHE]

Have you had your white blood cell count checked lately? If not, and you have apparent immune suppression problems, then it might be a good time to order a complete blood count (CBC) test.

[Margarita]

I think,it's a liver..

[littlestbabie]

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[littlestbabie]

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[laneyx455]

I'm now in my third week of Tecfidera and besides 3 instances of flushing early on, I've been doing surprisingly well (can you hear me knocking on wood!) No nausea/intestinal problems to speak of. My nagging MS symptoms (weakness in my leg, primarily) have subsided a bit, too. I was on Copaxone for several years and it worked well for me for the most part, but I developed terrible itching/hives so it's nice to be done with that drug. I hope the good run with Tecfidera continues for you littlestbabie!

[jaredboy]

I just wanted to comment on the OP's first post and the topic of PML/JCV/bloodtests:

My first neuro did all the right things in diagnosing me and checking CBCs and put me on Tecfidera even though I am JCV+
I took Tecfidera for about 2 mos and did not have any side effects except for flushing occasionally.

Then after a follow up visit he said he had spoke with a colleague and due to 4 persons (to my knowledge as of 2016) have died from PML and being on Tecfidera, he recommended to be safe I should consider Copaxone. I agreed to this since I was not enthusiastic about contacting PML since I am indeed JCV+

I stopped taking Tecfidera for about a week or two while going through the insurance and such to get started with Copaxone. They sent the nurse out to train me for the injections and I started on a Monday. That injection in the stomach went fine using the autoinjector. Two days later (Copaxone 3x week) on Wednesday my wife gave me the shot in the back of the arm manually. Within a minute she said my lips and face went pale, i felt naseous and faint and (sorry) vomited everything up. Then my arm started to seize and cramp up. I called the nursing support and they said it sounded like she gave the shot in my muscle (my arms are fairly lean and muscular). The cramping was terrible pain for 2.5 hours! The thing is though I didnt even feel her give me the shot (oh you did it already?) so if she had hit my muscle, I really think I would have felt it. Anyways, the next day I got flu like symptoms. I ended up doing a third shot on Friday even though I felt very sick but after reading flu like symptoms can be a side effect I said NOPE.

After contacting my first neuro he felt it was time for me a see a MS specialist and so I stopped Copaxone and went unmedicated for 2 weeks or so. The new MS specialist looked my all my bloodwork and tests and said there is no reason to be off Tecfidera and taking Copaxone. That is a step backwards. She said yes I am JCV+ but it is just over the border and it is not a concern. Also that those patients who had trouble were older folks (im 35) and with compromised immune systems for a long time.

Also I am getting blood tests every 3 months to keep a watch on my WBC.

So the TL;DR version: if you are fairly young and in good health, even if you are JCV+ it may not be an issue. Consult your doc on this. I dont know if my story helps at all but that has just been my experience. Now I am having issues on Tecfidera (I think) but thats posted in another topic. I'd welcome other's thoughts on the matter. Thanks!