Hi, I had to come off tecfidera (my first DMT) in the summer of 2020 due to low lymphocytes. I’ve not been on any DMT since as my lymphocytes are taking forever to recover. They won’t stabilise above 1. It’s so frustrating. I’ve not knowingly had a relapse since being meds free, so feel very lucky. I’ve been offered copaxone as an alternative, or can try Tec again, but my bloods need to stabilise above 1.
Is there anything else I can do? I’ve lost quite a bit of weight (intentional), not drinking alcohol, I’m exercising etc. I keep being told they’ve never known anyones lymphocyte count to take this long to recover, yet each month just rolls by, waiting for blood results, excited when they improve & then disappointed the next month when they drop. No-one is suggesting anything else could be affecting lymphocyte recovery, but I do wonder. Any words of advice, encouragement etc would be greatly appreciated!
How low did they drop? Also when you say they go up and down is the general trend upwards? I know I can see my bloods on a graph and then it’s easier to see trends. Are you able to do that?
I’m afraid I don’t know of anything specific that would help to raise them, but would assume living healthily in general which you seem to be doing could only help x x x
Thanks for your reply. They dropped to 0.4 & I was advised to stop the tec. I’d been on it a year. 17 months later, they are at 0.9. Monthly results over this period show an upward trend, which keeps me going, but I’ve not read anything that said it could take this long for them to recover. It’s so frustrating, especially when you chuck in the pandemic. I keep trying to tell myself how lucky I am that my MS seems quiet & just get on with it, but I am concerned whether something else may be going on….
I am just about to go back on Tecfidera after at least one verified relapse. This appears to be somewhat of a stopgap as I never had any problems with it (apart from lymphocytes) and the service seems to be overwhelmed with dealing with people on other treatments concerned about COVID.
Thanks for your reply crd. If you don’t mind me asking, how long did your lymphocytes take to recover and what did they need to stabilise at? I’ve been advised they need to be at 1 or above & stay at that for 3 months before recommencing tec. I may become lymphopaenic again or I may not. In the interim, I’m reluctant to start on copaxone as it’s less effective & I’m concerned how it will affect my already depleted immune system. It’s a gamble. My MS has been quiet since diagnosis (almost 3 years), but I appreciate it may not stay that way.
Has anyone else any words of wisdom? I’ve read all the previous posts on the site ref tecfidera & lymphocytes, but they don’t cover my query. Many thanks.
Different teams take a different view on what is safe. Below .5 for a prolonged period is a warning sign. Some accept .8 as good others seem to demand 1.
To an extent I was around .5 for a bit and making a slow increase. They took me off to improve my score and was put back on after relapses in the 6 months I was not protected. I tolerate Tecfidera very well and to an extent starting again is a holding position while the hospital gets back to normal after COVID. They are snowed under with people who were on other DMTs that where more problematic with COVID. I would like another MRI to see what has been happening to inform a decision, but I was uneasy to be doing nothing when having a decline that was not explicable as I was keeping as active as possible.