After 7 months of my lymphocyte levels hovering just above 0.5, my neurologist has finally called it a day on me continuing with Tecfidera, when my recent blood test came back at 0.47. He wants me to change to Abagio, but I think I’ll have to wait for my blood levels to stabalise. Has anyone else got any advise on how long I’ll have to wait? My appointment with my neuro is on 7th feb (I think), but my ms nurse said she’d give me a call in the new year once I’d read the info. I did ask about lemtrada but she said my MS wasn’t active enough, but when we first discussed dmd’s 15 months ago, I was told it was a 2nd line option so the goal posts have moved! Any advise is gratefully received. Merry Christmas x
Hi Sallum
Unfortunately, it took a really long time for my lymphocytes to normalise. I stopped Tecfidera in November 2015 when my lymphocytes were 0.4. I had my blood tested monthly for quite a while and it bounced up and down between 0.5 and 0.7. For a while it looked like it was going up, then it went down again. Eventually in October this year it reached 1. Which is the low end of normal. So I’ve decided to leave it alone until just before my next neurologist appointment in March before I have it tested again. And because I’ve had so many DMDs with crappy side effects and have a lot of disability progression, I probably won’t be given another.
Obviously, I could have been abnormal in my lymphocytes recovery rate. It’s possible that other people will have shorter periods before their blood’s normalised. It is probably true that you’ll have to wait until you get normal levels before starting a new DMD.
Why Aubagio though? It’s got a worse relapse reduction rate than most other DMDs. I’d be reluctant to go near Lemtrada personally, I’ve had side effects from most DMDs so I’d be a bit reluctant to take one that once it’s in your system takes a very long time to get over any unwanted effects. But what about Tysabri? It actually gave me raised LFTs but I think I’m unusual in that sense (I’ve had raised LFTs from 3 different drugs). And of course, it’s a second line drug with good relapse reduction rates. And it clears out of your system very quickly if you do experience side effects.
Sue
I’m not sure why they said Aubagio, no other choices were given just recommended by my neuro. I guess until I have my appointment or a call from the nurse I’ll have to do my research in preperation for then! I’ll check out Tysabri and read up on other meds but I guess it’ll be a long wait until I can start something new. Thank you x
I know that Tecfidera itself is flushed from the body within a day of your taking the last dose, perhaps as quickly as 16 hours. How long it takes your body to recover from the effects of it however, i would expect to be highly variable from person to person.
One thing to note: (and this is purely my own opinion for what it is worth…) i do not think it is likely that the ‘goal posts have been moved’ on you, so please do not feel that you are being conned by not having Lemtrada made available;
When the white coats discuss first line / second line DMDs, it is usually in the context of how the disease responds / persists, and not necessarily how your body tolerates the meds. If your perceived relapse rate continued despite happily taking tecfidera, then Lemtrada would be a viable option. However, this is not the case for you.
Switching to a lesser first line is unfortunate and i sympathise; i know i would feel thoroughly shell shocked if taking a chance on tecfidera failed to pay off. But at least you still have ‘big guns’ (Tysabri and Lemtrada) ‘waiting in the wings’, available to you, if need be.
All the very best of luck to you Sallum
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Thanks Paolo, I do feel somewhat peeved by ‘the goalposts’ being moved but I wont make a decision on new dmd until I have my appointment. In my favour I have been to my gp who has prescribed amitriptyline for fizzing legs however I havent been taking my meds for a few weeks now, but at least its in my medical history at my gp surgery! I’m sure which dmd will be open for discussion on 7th feb so until then…and thanks x
i always described it as ‘ants having a rave’.
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