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Tecfidra - how often bloods?

Hi there,

Hoping for some help.  I have been on Tecfidera for 3-4 years.  How often do I need to get my blood checked?  My GP is saying every 3 months when I am thinking it’s every 6 months.

many thanks

Min

Good morning ffm. I was on Tecfidera for 2 years and was seeing my MS nurse every 3 months for blood tests.
They have to keep an eye on your blood count and that was the reason i was taken off it as it was playing havoc with my white blood count, which i think is the main reason why people get taken off it.

I was moved onto Copaxone last year and have had 2 blood tests since being on this drug.

Best Wishes Iain.

Hi Min, I’ve just started Tecfidera and I was told blood tests every three months. I hope it helps. Best, S

THANKYOU.  Not the answers I was looking for.  I have to pay £15 for a blood test and then £52 to see the GP afterwards. 

Thanks

Min xx

I take it you are not in the uk - if you have to pay for the blood tests. The whole point of the blood tests is that worldwide a few people have died after taking Tecfidera as their lymphocytes dropped consistently and they contracted PML. The warnings about this are on the patient leaflet in each pack of Tecfidera.

I have MS

Hi Min

After you’ve been on Tecfidera for a few years with stable lymphocytes in the ‘normal’ range, I can’t see that the lymphocytes are suddenly going to drop now. This is what the blood tests are for. The lymphocytes are the type of white blood cell which fight off viruses. Which is what PML is, a virus. To fight off any virus you need a decent level of lymphocytes. 

So if the blood tests are to check lymphocyte count, and yours have been stable for more than 3 years, I can’t see the reason for having the blood tests more frequently than every 6 months. 

If you were to talk this through with your doctor, it’s irrelevant what frequency other people have their blood tests done. And let’s face it, if we were paying for them in the U.K., rather than them being on the NHS, everyone on Tecfidera might question the frequency. If my reasoning is sound, then the doctor ought to agree to 6 monthly expensive tests!

All the best.

Sue x

I have MS

Hi 

does anyone know what is considered low mine are 0.7. I don’t know what normal reading should be.

I was told o.7 is low but not to low.

I have had lots of infections this winter.  How low is too low?  And when do I need to come off ?

 

thanks 

I have MS

Hi

I just answered you on here, then saw your other thread, so I’ve moved my post from here to there. Hope that’s not too confusing!!

Sue

I have MS

Hi Sue

 

 That’s fine I’m not confused 

Thanks Sue,

I will talk to GP about perhaps going to 6 monthly tests.  Treasure your NHS I pay £52 to see a GP.  So being a cynic they want to be seen as often as possible whether you really need an appointment or not!!!

Min xx

Quick update.  My MS nurse has got back to me saying that as I am well established on tec  then annual bloods tests sufficient - Happy days 

hugs

Min xx

I have MS

Wow that’s great Flowerfairymin

mine are due in the next couple of weeks I just hope they haven’t dropped to low as I’m already low at 0.7 and don’t really want to be at risk of Pml.

Ann

I have MS

Good news. Ha. 

Sue

The only thing i find a pain is the fact i have to travel 140 mile round trip to seemy MS nurse for a ten minute chat and a blood test. They wont let me see the nurse at the GPs surgery and get the bloods taken there which would be a breeze as its a five minute stagger down the road for me.

I cant complain though as the nurses and docs have been suberb at the RVI but the days travel does wipe me out.