Hi - was just wondering if anyone would mind sharing what their lymphocyte levels are on tecfidera and also what their neuros threshold is for staying on the drug? Just had my latest bloods back and have gone down to 0.7 which feels quite worrying, although isn’t low enough to warrant stopping the medication. I’ve taken it for almost 6 months now, did anyone’s levels improve after this point? I’m hoping they might go back up a bit but not sure if this is just wishful thinking!
Hi, I had to stop tec once my lymphocyte count hit 0.4. I’d been on it almost a year by then. I’ve continued with monthly bloods since then. I think it’s a fantastic drug, other than this effect! I plan to start it again with the neuro’s agreement as you can get a different response 2nd time round.
From what I understand, you see a dip during the 1st 6 months of taking it, but then they like to see your lymphocyte count bounce back. With many it does but with some it doesn’t. Mine were just weird as they were ok, but then started failing off after 6 months.
They should offer you more frequent bloods if they are concerned x
Yes, the expectation is that in the first few months your lymphocytes dip. That (for some reason) shows it’s working. But if the levels don’t come back to ‘normal’, which should be above 1, they stop the drug. Mine dipped to 0.4 and I had to stop the drug some neurologists think 0.8 is the lowest the lymphocytes should go, while others say only stop the drug if levels get to (& remain) at or below 0.5.
I was on Tec for around a year, but my lymphocyte levels hovered around 0.5 to 0.6 for a few months, before dropping to 0.4 which was when my Neuro decdied I needed to come off it. I’ve been on Aubagio for almost 5 years and I’m once again having monthly blood tests. This time to make sure my neutrophil levels pick up, which I think they are doing so fingers crossed x Sharon
I was on Tec for just under 2 years. My levels were ok for the first year and then dropped to below 0.8 last June (at which point my neuro asked me to shield and have monthly blood tests) My levels continued to drop and were hovering at around 0.5 for 3 months. At this point I was asked to come off Tec with immediate effect.This was on Dec 31st and I am starting Copaxone on Friday.I will also be having my bloods checked again then and am hoping that my lymphocytes have picked up.
Thanks everyone. It seems not many people stay on the drug for longer than a few years for one reason or another. I haven’t had any contact from my ms nurse so assume she’s happy with it. Gp has requested a routine appointment to discuss though so will see what they have to say.
The biggest problem with seriously dipped lymphocytes is that it can take a long time for them to pick up again. For me it was a good 6 months or more that they stayed low.
Before you meet with your GP, see if you can get a complete list of your lymphocyte reading for the time you’ve been on 'Tec. If it’s just been slowly decreasing, see what the pattern has been in general. You could also get a view from the neurologist prior to talking with your GP - phone his/her secretary and ask for the blood test results and maybe if s/he could ask the neurologist to comment on your bloods.
Thank you, that’s good advice. It’s frustrating because my previous blood tests aren’t showing up on my medical record I can access for some reason, but this is only my second round having been on it for 6 months. Last time I remember they were 0.9 so they’ve gone down again. My nurse said if she doesn’t contact me after blood tests that means there’s no problem and she’s happy with them, but I think she is pretty laid back in general, so I’m interested to get the GP’s perspective. I’m going to ask the Gp for another blood test in a months time, worth a try, just so I can see sooner rather than later if they’re still falling. It does worry me that they will take a long time to recover if they get too low, not least because that will limit other drug options. Fingers crossed they’ll pick up a bit from now xx
Hi. I came off tec 2 years ago because my lymph levels dropped to 0.4. I wanted to stay on the drug but the terms of the license say come off if below 0.5. I took it for 3 years and levels were between 0.8 and 0.5.
So two years later I have just had my highest reading of 0.9
Don’t worry about low levels, it’s just the drug doing it’s job
Good luck
J