Forum

Tecfidera and lymphocytes

Hi all

I just got a message that my lymphocytes are a bit low. I’m 6 months into Tecfidera. How many people have low lymphocytes that then recover? I would have thought if it were going to affect lymphocytes it would’ve shown up on 3 month bloods rather than 6 months. I don’t think it’s a major issue cos they are just retesting after a further month rather than immediately.

Sue

I had an immediate decline of about 50% to my lymphocytes at month 3.

This stabilised to being closer to about 75% by month 6 and has remained steady ever since.

This is what i had hoped to see / had expected. You are a little different, which let’s face it, is of no surprise.

I am not a doctor or anything like that, and so take this for what it’s worth…

but i would try not to be concerned; blood cell counts can fluctuate as a fact of life.

The only thing better than some data, is more data. More tests will allow your situation’s picture to develop. And even if it is found that you are categorised as low, it takes a good deal of time for this to necessitate a change, such as to the DMD you take.

Ultimately, it is good you and your ‘team of dedicated health care professionals’ are on the case with this!

Good luck and fingers crossed for an up turn in your cell counts!

Thanks Paulo. In fact I tried looking for your experience through your previous forum posts because I knew you’d had a dip earlier on but found too many to search within! (Who’d know it?)

In fact I do have a pretty dedicated health care team. I just picked up a text from one of them, answering my question as to whether to have the flu jab or wait till after the bloods come back. (She said wait till after.) The Tecfidera/Tysabri team are pretty good, they have a mobile that one of the 3 nurses always takes home and although I’d said they didn’t need to answer me immediately, she did!! Amazing huh?

I’m not panicking too much, I’ve already had a nightmare Tysabri experience where my liver went bananas immediately before a holiday to India and I had to go to the hospital every day for about a week to have my bloods taken. Only at the last minute (day before!) did my Neuro say I could go. Obviously that was the end of Tysabri for me.

Tecfidera is now my fourth DMD. I’m hoping the leucocytes get their act together but if they don’t, it’s not the end of the world.

Sue

I have 3 monthly checks too. I started at 1.1 and steadily went down. I’m now steady at 0.9 1 year into tecfidera. My lowest had been 0.8. It’s lower than in a healthy person but to be expected. Anything above 0.5 and u can stay on tec. Katy

Mine was 1.6 and after 3 months it dropped to 0.9

Getting mine checked again in a few weeks time - hoping it hasnt dropped again…

Is this bad after 3 months? I guess it shows that the tec is doing something…

I don’t necessarily think it’s bad. Having done a bit of searching around it seems that it’s expected to have lymphocytes drop when you start on Tecfidera (as many as 40% of people experience some kind of drop I read). It’s if your blood shows a drop to .5 or less (as km said) that you probably have to come off Tec. And in general, the low lymphocyte level is greater in the first 6 months, it does normally go back up a bit. So both you & I will have to hope it improves at the next blood test.

Sue

Don’t worry spluff… an initial reduction of up to 50% of your baseline amount is anticipated.

that is why you have the blood test before starting on the Tec; not only does it give a basis on which to determine the action of the Tecfidera within your system, but it also ensures you have a higher enough level to begin with.

the expectation is that after this initial drop, you body starts to adjust / build a tolerance to the Tec and your levels will inch up a little bit.

As said, my reaction was found to be 100% - 55% - 75% - 80% My neuro saw these results and said he’d be happy for me to give blood once every six months. But i would rather keep it quarterly.

Nothing beats data like more data!

I am sure you will fine.

Yeah - is that what Tec does to help control the MS - the lower lymphocites?

The Neuro wants to revert to 6 monthly testing after 1 year - its standard in the UK it seems…

I am going to get my Vit D checked while they are sticking needles in me :slight_smile:

in part. it is also thought to have anti-oxidant properties.

So, further to my previous posts, my lymphocyte bloods have come back and I’m at 0.4. Which is what they were last month. I’ve now got to have another test in a few weeks and hope they’ve come back up. I’m now 6 months into Tecfidera.

Has anyone else gone as low as this and had the lymphocytes recover?

I’m trying not to be too concerned as it’s still early days, but I can’t help worrying a bit. The problem is that this is my 4th DMD and is probably last chance saloon stuff!

Sue

You can see in post 2 of this thread how my blood cell reacted to tecfidera, but at no point did my total count go as low as yours.

I do not know if such cells, getting to such a low total population, might not be able to recover to a reasonable level.

In any event, one strategy might be to go to a half dose of tecfidera until your levels pick up? (I stress, this is a total guess that might be ignorant of the finer mechanisms of the drug.)

Ultimately, it seems that you have to consider something of a potential risk (just ‘potential’ not yet ‘actual’).

That you continue to monitor your cell count is good. My fingers remained crossed for your seeing a high total count next time.

The very best of luck!

Hi there’s a new post about lymphocyte counts, Tecfidera and an EMA update on the Barts blog.

xx

Thanks for that Lenney. I’m just playing a waiting game it seems. Have blood taken monthly, so far it’s been only 2 blood tests that have been -0.5, but then the test before was 3 months prior so for all I know I’ve been -0.5 for 3 or 4 months. I do know that I was JCV negative two years ago, so probably still am. I suspect that when my blood is taken in 3 weeks, if I’m still -0.5 then either they’ll redo the JCV test or just take me off Tecfidera. So long as I’m still JCV neg, then my PML risk is zero.

Sue