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Don't neglect your blood tests

'There’s been a second case of PML with Tecfidera, a Biogen spokesperson confirmed… The case wasn’t fatal.

It occurred in a patient with primary progressive MS who had prolonged severe lymphopenia.

The other PML case with Tecfidera, reported in the New England Journal of Medicine earlier this year, occurred in a 54-year-old woman with MS, who had severe lymphopenia for 3.5 years.

Tecfidera has been available on the U.S. market as a treatment for MS since 2013… (Biogen) does not anticipate any changes to the drug’s label at this time, and urges physicians not to change their practice with the drug but to be vigilant about prolonged severe lymphopenia as the label indicates."

​http://www.medpagetoday.com/Neurology/MultipleSclerosis/52622

The thread title was supposed to be ‘Don’t neglect your BLOOD tests’.

(why is there no edit option on these farking forums??)

There is. Me. Feel free to PM

Val [Moderator]

2 Likes

It’s not exactly ideal, but just delete the whole post and start again, which is easy enough to do if you copy the original message first.

FYI… from an article dated this monday:

"… report speaks on the third case of (PML) on a person being treated with Tecfidera. The patient began treatment in March 2014, and had previously been treated with Rebif. Last week, the patient was confirmed to be suffering from the fatal brain infection, although currently the patient is “alive and stable”.

In the latest case, the first report of prolonged lymphopenia was recorded six months after the start of treatment with Tecfidera, and yet the patient was continued on the drug. This went against Tecfidera’s label warning which describes the drug as a potential risk for developing PML in such cases. The analysts believe the PML risk associated with Tecfidera can be managed through greater vigilance from prescribing physicians…"

linky dink is here (but it is most stock watching type stuff): http://www.bidnessetc.com/53119-biogen-inc-biib-tecfidera-pml-risk-unlikely-to-affect-sales-merrill-lynch/

my point is, don’t neglect your blood tests.

Currently i get stabbed every three months. I am scheduled to see my neuro for my annual check in today; if he thinks i will accept a change to the frequency of my blood tests, he is sorely mistaken.

In England (the UK as a whole?) there are blood tests every 3 months for the first year on Tecfidera. White blood cell count is one of the tests that would show up lymphopenia. After the first year, it’s 6 months, then annually. Other than white blood cells, it’s LFTs and whole blood count and I’m not sure what else. The MS nurses at the hospital where I go for Tecfidera are pretty hot on making sure the bloods are OK. I doubt that their equivalents elsewhere are less careful. But Paulo, you’re right to urge people to make sure they are getting their bloods done.

Sue

Same here Paolo, due for another Tec blood test in Oct and I want to keep blood tests every three months.

Hi Paolo

im a bit confused. Why was someone with PPMS on Tecfidera? I thought you could only have DMDs with RRMS? I’m still learning about MS so sorry if my question is daft.

On the blood test note you are good to remind us all. My hospital cancelled my appointment to see the ms nurse as she saw me a month earlier as an extra appointment to talk about work issues. She didn’t request the other appointment be cancelled and I only found out by accident. This appointment is important as it is the test my bloods appointment 3 months after starting Tec. I was beginning to doubt if I should’ve requested the appointment back but your thread has confirmed I’m right. Thank you.

Hello fishgoose.

I am not sure the victim has PPMS and i assume that they are RRMS as you are correct, only relapsing MSers are given the Tecfidera (which i don’t necessarily agree with).

As for bloods, I believe the first two or three 3-monthly tests after starting the Tecfidera are perhaps the most important.

My first test - pre Tecfidera aka Month 0: blood count was at the top end of acceptable range.

Month 3 after the Tec start: blood cell count drop by almost half, to the bottom of the acceptable range.

Month 6: a return to higher levels, about 80% of the Month 0 count.

Month 9: one last rise of about 0.1 (whatever unit is used).

As predicted, my neuro said he’d be happy to see blood tests every 6 months. I insisted upon continuing with the three months. He has no problem with that. He is also ordering me a pair of MRIs, so a comparison can be made against my pre-tecfidera soaked brain. I told him i do not need to learn of the outcome of these pretty pictures, unless i need to change current behaviours to avert imminent disaster :slight_smile:

I have a blood test every month