Looking for a bit of advice/ has this happened to anyone else.
I’ve been on Tecfidera since April this year and had bloods done quite regularly. My bloods had been okay, lymphocyte count had went to 0.9 in July which I think is expected on the Tec.
On my bloods from yesterday my lymphocyte count is now 0.7 (which I kind of expected) but they’ve told me my neutrophils are down to 1.4 and my WBC are down to 2.6 which has totally shocked me! They had been okay (to my knowledge) on my July bloods. My MS nurse and GP said they think this is due to the tecfidera but are doing a blood film just to be 100%. My anxiety is now through the roof that I have some blood disorder or rare cancer or something. I feel totally paranoid that something else will go wrong with me as I am not long diagnosed with MS and it was a shock diagnosis for me.
My family have said I’m being ridiculous and the bloods are clearly because of the tecfidera. I think I’m just taken aback because I expected the lymphocytes to be an issue but now the WBC and neutrophils. I’ve been doing okay recently, felt a bit run down the last week or so but everyone has said that’s probably because my immune system is so low (I also work in hospital with mostly infectious patients/covid patients) but I’m extremely anxious waiting for this blood film to come back on Monday.
Has anyone else on tec’s neutrophils and WBC went down while on the drug? Just looking to see if it’s a common thing.
Hi, nothing useful to add, just wanted to say in my experience Tec is a great medication, I’ve been using it over 2.5 years with no issues at all. Bloods every 3 months (6 during lockdowns) all good there too. Stay positive, will all work out.
Retro.
I read your post last night on my phone and didn’t have the needed brain power or energy to find out exactly what my various blood results were.
I’ve just found an entry in my diary from 5 years ago, at which point my lymphocytes had begun recovering from Tecfidera.
WBC: 2.6
Lymphocytes: 0.6
Neutrophils: 1.6
So yes, mine went screwy all over the place. At one point my WBC was 2.3, neutrophils 1.3 and lymphocytes 0.4. But I think that was when I was still on the drug, or just after I’d stopped it.
But they recovered. Most recently they’ve dipped a bit (no idea why!) to WBC 3.7, neutrophils 1.6 & lymphocytes 1.1. But nothing that’s alarming.
So while on the face of it your blood results are alarming, I doubt they’re too unusual. It’s known that Tecfidera can mess with your lymphocytes, it seems it messed with your entire white blood cell count. Mine too.
Best of luck working with scarily infectious patients! But try not to worry, assuming you stop the Tecfidera, the blood (& immune system) will recover.
I feel so much more reassured reading this, thank you. Your previous blood results are very similar to what mines are just now so it’s good to know that it’s a tecfidera thing that will eventually recover and not something more sinister.
I think because I’m not long diagnosed I’ve got a little bit of health anxiety/ trauma over it all and it just sends my mind racing when I’m told something is wrong again, even if there is reasonable and probable cause for it. I expected the lower lymphocyte count but the low neutrophil count totally threw me, it’s had me worried all weekend I’ve got some rare cancer on top of the MS diagnosis. Just need to keep reminding myself it’s 100% going to be the tecfidera causing the neutrophil count and the blood film test is just a tick box exercise. Here’s hoping I hear from the ms team tomorrow!
Thanks very much for your reply! Hope you are well.
I’m glad my experience helped you. I saw your post on Saturday and wanted to reply but needed to check my diary first. So you’ve had more time to worry than if I’d been able to reply sooner. Grrr, stupid MS brain.
Have you now stopped taking Tecfidera? Some neurologists think the cut off point for lymphocytes is 0.5 to stop the drug but others believe 0.8 is safer. And as your neutrophils and WBCs generally have dipped, it’s likely that they’ll want to stop Tecfidera.
Don’t expect the levels to bounce back quickly. Mine took quite some time. I actually went right back in my diary early this morning (wide awake at 5am again, grrr MS).
I began taking ‘Tec in March 2015. By September, my lymphocytes had dipped to 0.4, where they stayed. In November I stopped taking tecfidera. (I wasn’t recording all the blood results initially because I want being told them and didn’t think to ask!) By January 2016 my lymphocytes were 0.5 but apparently the neutrophils were OK. In April my WBCs were 2.2, neutrophils 1.3 and lymphocytes 0.6. In August the results were about the same. It took until October 15 before my lymphocytes reached 1 and neutrophils 2.1, so just about normal.
Recently I had a blood test and my levels are now on the low side of normal: WBCs 3.1, lymphocytes 1.1 and neutrophils 1.6.
So don’t get too despondent if it takes some time for your blood to recover. It won’t mean you have any other horrible diagnosis. MS on its own is sufficient!