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Tecfidera and low lymphocytes

Tecfidera seems to be the perfect DMD for me - no relapses and no side-effects in about a year. However my last blood test showed lymphocytes 0.4 and I have been asked to have blood taken again in a month’s time.

I have done a bit of googling and have a feeling that if the levels do not improve, I will be taken off Tec.

Does anyone have experience of this?

Thank you

Hello Mr Grumpy

Me too. Lymphocytes down to 0.4 in September after 6 months on it. Repeated test October and November. They didn’t recover so stopped the drug in November. I’ve been having monthly blood tests since then and the lymphocytes are very very slow to recover. They are currently at 0.6, having gone up to 0.5, back down to 0.4, then eventually up to 0.6. I’m due for another test this Friday.

From what I was told, once they go down to 0.4, it’s not very likely they’ll recover whilst you continue with the drug. But of course you may be the exception.

The major problem will be that even if your levels don’t recover and you have to stop the Tecfidera, until your lymphocytes come back to normal levels (I think above 1), I think the neuros will be reluctant to start you on a new drug.

Depending on how long you’ve been on the Tec, I’d consider stopping if the levels either drop any more, or don’t go above 0.4 next month. Waiting an extra month did me no good.

But, maybe you can start Tysabri when your bloods recover! Or another decent DMD. (Unfortunately I’ve already been on Tysabri and had liver problems, but that’s just me. Useless flippin’ immune system all around!)

Sorry to be the bearer of bad news. Maybe it’ll be different for you. I’ll keep my fingers X’d.

The only bit of good news is that even though my lymphocytes have been low all winter (and I couldn’t have the flu jab because of them), I’ve not caught any colds, or other infections. That had bothered me when I realised the flu jab was out.

Sue

Thanks for sharing your story Sue. I have my fingers crossed too.

Best wishes to you

I believe you are correct mr grumpy; your blood cell count would be considered too low to continue with the tecfidera

the concern i think is primarily, or perhaps even entirely, that this low lymphocyte level elevates your risk of PML.

this risk of PML would only be valid if you play host to the JC virus. this virus is present in most humans, but not all.

low lymphocytes therefore indicate an elevated risk, but one that should be evaluated in the context of all other variables and of course balanced with your capacity for courage!

the very best of luck to you! there are alternatives to tecfidera out there though.

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Hi, I had the same experience on Tec. Mine dropped to 0.5 within 3 months and never came back up. They took me off it in January and I am waiting to have Lemtrada. My last scan in May 16 had lots of new active lesions, and some old one were active again. I’m an odd case as ive had RRMS since I was 17. Dx at 20 in 1995. I’m still pretty good considering the many relapses, although I’ve had stable periods of 4 years a couple of times. The problems is, even at nearly 8 months off Tec, my lymphocytes are still low. Last 3 tests have been 0.8, 1.1, 0.8 and this week, 0.7. My treatment week for Lemtrada is 8/8, and my Neuro wants my count over 1.2 so we may have to delay another month. My total WCC is 4.7, which is in the bottom end if normal (normal being 4 to 10). So it seems that even when off Tec, it mucks your lymphocyte count up for quite a long time if you go very low on it and have to stop. I wonder how others have fared who have stopped Tec?

Hi, I had the same experience on Tec. Mine dropped to 0.5 within 3 months and never came back up. They took me off it in January and I am waiting to have Lemtrada. My last scan in May 16 had lots of new active lesions, and some old one were active again. I’m an odd case as ive had RRMS since I was 17. Dx at 20 in 1995. I’m still pretty good considering the many relapses, although I’ve had stable periods of 4 years a couple of times. The problems is, even at nearly 8 months off Tec, my lymphocytes are still low. Last 3 tests have been 0.8, 1.1, 0.8 and this week, 0.7. My treatment week for Lemtrada is 8/8, and my Neuro wants my count over 1.2 so we may have to delay another month. My total WCC is 4.7, which is in the bottom end if normal (normal being 4 to 10). So it seems that even when off Tec, it mucks your lymphocyte count up for quite a long time if you go very low on it and have to stop. I wonder how others have fared who have stopped Tec?

Oh and as an additional “exciting” factor in all this, we did consider Tysabri, but I’m JCV positive and my titre is 4 which is pretty much as high as it gets. So that would only be a stop gap for me really while waiting for Ocrelizumab. Due to being in the high risk group for PML from the off, I’d have to hope that was only 2 years away, and that NICE passed it for RRMS .

Hi Glorypuss

My lymphocytes have only gone as high as 0.7 once (last month) and this month went back to 0.6. So, given that and my dodgy liver, which reacts badly to drugs whenever it feels like it, plus the length of time I’ve had MS and my age and disability, further DMDs are out for me. But looking on the bright side, it could be said that lowered lymphocytes actually helps to protect against further relapses because the cells that attack your myelin are themselves weakened by the reduced lymphocytes.

But I do hope yours recover sufficiently to have your scheduled Lemtrada and if not then, soon after.

Sue

I like the bit where you say ‘lower lymphocytes helps to protect against future relapses’. Is there evidence to prove this. I’ve been stuck on 5.2,5.3 & 5.2 for 3 months & the ms nurses are happy for me to stay on it while I’m a little worried staying so close to the ‘stop tec zone’.

Hi Sallum

Do you mean 0.52 etc?

Cos 5.2 would be high lymphocytes. Normal level is about 1.3 - 3.5. But if you’ve been at 0.5 for 3 months, as far as I’m aware, your lymphocytes will not go up whilst you’re on Tecfidera. This is what info I was given by the specialist MS nurses (they do Tysabri infusions and Tecfidera stuff and probably now they also do the Lemtrada infusions). The biggest problem with your lymphocytes being this low is the threat of PML. For some reason, JCV status is not tested whilst on Tecfidera. Maybe the risk factor for PML is so much less that it’s not considered necessary. I know that mine was negative a few years ago when I was tested before starting Tysabri, but obviously it could have changed in the meantime.

However, the question about being slightly protected from inflammatory activity (ie less risk of relapses) whilst having low lymphocytes comes from my most recent appointment with my neurologist. He directly said it, whilst offering no actual evidence; to my (admittedly non scientific) mind, it seems to make sense. However, he also said in the same appointment that I do seem to have moved into ‘a more progressive phase’. So whilst he’s not saying that I’m not RR, he’s not saying that I am either. So for me, the fact that low lymphocytes may lower the risk of relapses is of slightly less importance than for someone with highly active RRMS.

In other words (as the neuro said in the same appointment) MS will do whatever the hell it likes, whenever it likes.

Meanwhile, if your lymphocytes have been at 0.5 for 3 months, you should directly ask the questions, ‘do you think there is any likelihood of the lymphocyte count increasing whilst I’m on Tecfidera?’ And ‘should I come off it?’ Professor Giovannoni of Barts said not so long ago that a consistent lymphocyte level of below 0.8 should be cause to come off Tecfidera: Multiple Sclerosis Research: NeuroSpeak: finally the EMA gives update on DMF

Sue

Thanks for that Sue. You are right it should be 0.52! My excuse - I was using my phone (small screen!!!) My ms nurse said it should be ok & I’m currently waiting for my latest blood test results. My MS nurse is calling me back on Monday as I’m also on meds for heartburn not sure if this is TEC related as I had 5/6 months without any problems apart from the usual flushing/tinglings but they have subsided now.

Thanks

Sharon x

Hi Sue, Thanks for your kind wishes :slight_smile:

Yes your neuro is right about the Low Lymphocytes generally being a good thing for RRMS as that is what Tec and most MS DMDs are aimed at. Im my case unfortunately, when looking at my May scan and its high level of active lesions, my neuro said that I must have a high % of rogue lymphocytes within my low count.

He thinks that I am one of the small number of patients who experience a “rebound” effect when stopping Tec. This also happens to some when stopping Tysabri and Gilenya. In any case, I will get the Lemtrada sooner or later which will sort me out, for which I am very grateful.

For you, I can tell you that i have many many MS friends who manage their MS without DMDs very successfully, some of whom have stopped DMDs by choice, and actually feel better for doing so. Everyone’s physiology is so different, so we all have very different reactions to, and experiences of, these drugs. DMDs are not the be all and end all. I follow a lot of the the advice of George Jelinek, as he’s sensible & not too extreme https://overcomingms.org

Good luck :slight_smile:

Hi Sallum,

When I was on Tec I had pretty bad gastric problems initially, so they put me on Omeprazole twice a day, and 150mg of Ranitidine twice a day. It did the trick for me. Off them now since I stopped Tec, but they were a lifesaver when i was on it ! My stomach has always been my weak point

Thanks

Rach x

I am taking Omperozole too twice a day, but still have a few problems every now and then. I’ll see what my MS has ot offer on the subject on Monday.

I too am following the diet by George Jelinek mostly. I’m completely off dairy and red meat and mostly white meat too unless I am out as the fish/veg option usually has milk/butter in it.

Sharon x

Hi Glorypuss

It’s great news for you that you’re getting Lemtrada. Hopefully soon. I think the expectation of Tecfidera is that it does lower your lymphocytes initially, but then they recover somewhat. So after the first 3-6 months lowered lymphocytes are desirable, but they should come back. It’s just when they don’t come back to above at least 0.8 that it’s a bit of a problem. And of course Cladribine in particular is a DMD that is specifically designed to lower lymphocytes.

With regard to people doing well without DMDs, again I agree with the wisdom of the Barts Blog, there’s a piece from Wednesday this week about ‘the Trajectory of MS’. It shows quite clearly that stability of people in the pre DMD age was far worse than during the period 1994-2004 (when beta-interferon and Copaxone became available) and much better still since 2005 when a load of the newer therapies became available. The upshot of the article is that not being on a DMD is not a terribly sensible idea if you have RRMS and given availability and suitability of DMDs. Here’s the link: Multiple Sclerosis Research the relevant article is about halfway down.

So, for myself, I’d prefer to be on a DMD but unfortunately can’t take most of them because of my liver or lymphocytes, or cognitive function. And that’s even in spite of the fact that I am perhaps in a transition phase between RR and SP.

Sue

The Ranitidine 150mg twice a day was the gamechanger for me Sharon. Its the same as Zantac. Within a day of this, ALL my Tec related stomach issues were gone. Maybe ask about it on Monday, and in the meantime, you can buy Zantac at the chemist. Its a lower dose 75mg but will still help.

Thanks

Rach x

The Ranitidine 150mg twice a day was the gamechanger for me Sharon. Its the same as Zantac. Within a day of this, ALL my Tec related stomach issues were gone. Maybe ask about it on Monday, and in the meantime, you can buy Zantac at the chemist. Its a lower dose 75mg but will still help.

Thanks

Rach x

Hi Glory

I just read back through the conversation prior to today (damn brain sometimes doesn’t work). I really hope you do get to start your Lemtrada soon. Your MS does sound like it’s pretty active even given the length of time you’ve had it so you could do with being on a good strong DMD asap. So I hope it does go ahead soon, if not early August then soon after.

It seems as though when I was taken off Tecfidera (and maybe the same for you) the neuros were fairly blasé about the lymphocytes soon ‘bouncing back’, when in fact they’ve done anything but. I was told they should be back to normal within ‘about 3 months!’ 8 months later, they’re still right down at 0.6.

Which for me isn’t such a problem, but for you, it’s much more problematic.

So I’ll be keeping my fingers X’d for you.

Sue

Really interesting to read all these responses - thank you.

By way of an update, my lymphocytes went down further to 0.3. The neuro ordered a JCV test which came back negative and the lymphocytes have gone back up slightly to 0.4.

Still very low but given the reduced risk of PML (although I understand the JCV position can change at any time) I am staying on Tecfidera for now with two monthly blood tests. For me, the NHS have been brilliant.

I am pleased about this overall. Tec has been great for me - no side effects at all and no further relapses (so far!). So fingers crossed!

Best wishes to all.

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Hi Mr Grumpy

That’s quite brave of you. I assume they’ll continue to check your JCV status as well?

Let us know how you get on re lymphocytes and JCV. It’s always useful to know how others deal with similar situations. As well as being helpful for people who start on Tecfidera.

And if your neurologist is happy, then perhaps the situation isn’t quite as cut and dried as I’d thought. Obviously for someone who’s JCV+ it’s a different scenario.

Sue