First Month on Tecfidera Going Suspiciously Well...

[littlestbabie]

I'm in my third week of my first month of tec and things are going.... really good? I haven't had any side effects at all; no nausea, no flushing, no anything. I very strictly followed LadyMac's 'guideline' for taking tec for all of like, the first pill. and then I slacked off and did whatever/ate whatever and absolutely nothing changed. I've been taking the medicine on schedule once in the morning and once at night, with no negative (or seemingly positive) affect thusfar.

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.

[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]

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 :\

[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]

for the past two days I've been super busy in the mornings, and I've forgotten to take my first dose of tecfidera on time. Both days I only ended up remembering at around 8:30 in the evening, so I have taken my first dose at 8:30 pm & the second dose at around 11:30 before I go to bed. This is only a three hour difference, and I know that it's recommended you have at least four hours between each dose. Has anyone else had any issues with forgetfulness? How did the late dosages effect you, if at all?

The one other thing that has been bothering me lately is that my immune system is definitely taking a bit of a hit. About three weeks ago I had a nasty cold (first sickness all winter, and right at the end!) that lasted for more than a week, and had be confined to bed for a full day and a half. Now less than a month later I'm coming down with more cold symptoms - runny nose, sore throat, headache - it sucks!! I'm not saying that my immune system has been 100% in the past, but in general I'm very healthy and if I do get a cold it's in the middle of winter and it only lasts about three days. Is there anything I can do to boost my immune system, or do I just need to concentrate on washing my hands more often and staying away from sick people? I hope everyone is doing well!

[littlestbabie]

has anyone ever gotten a rash side effect from taking Tecfidera? I've been on Tecfidera for a while now, almost 2.5 months, and all of a sudden I've developed a rash that my dr believes is somehow related to the Tecfidera. She doesn't know if it's a side effect or just a rash that took advantage of my scatter-brained immune system, but either way I am one itchy and unhappy girl. Does anyone have any resources/information about less-common side effects of Tec, such as rashes?

[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]

So I got my white blood cell count - it's still in the normal range, and while that's a relief if doesn't help clear up the mystery of this sudden abnormal rash!

[littlestbabie]

turns out the rash was unrelated - it was a plant allergic reaction. Which means I still don't have any known side effects of taking tec. I've spoken to a few people and they tell me not to look a gift horse in the mouth, but I still can't help but be suspicious! I legitimately have the worst luck in the world, and I keep feeling like tecfidera is just lulling me into a false sense of security, lol

[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!

[littlestbabie]

Thank you for your reply, Jaredboy! Very enlightening and interesting to hear the details of your own personal issues with these various MS medications, haha. My unknown JCV status was just one issue I was having with this medication. (I got tested for my JC Viral status, finally, and my neuro never gave me the results I’m just now realizing. My neurology office sucks). My main issue with Tecfidera is the 2x daily dose. I haven’t taken my meds daily in months now. I haven’t taken it at all in at least a solid month, and I have been blessedly nausea-free. I think the only time I ever made every dose was the first month. So it has become increasingly clear to me that besides my unknown JCV status, and the increasing nausea when taking Tec, that this medication just isn’t going to work out for me at this point in my life. Thank you for sharing your story! If I see your thread about your Tec issues, I’ll try to comment helpfully!