Does anyone know how low your blood cell counts can go before you must stop taking Tecfidera?
The idea of Tecfidera is that when you first start the drug, your lymphocytes are temporarily lowered. They should then recover. The normal range for lymphocytes is 1.0 to about 5.0. Generally the point where you should definitely come off the drug is 0.5. Some neurologists think if your lymphocytes reach 0.8 or less and stay there for more than a couple of months, you should stop the drug.
Mine got to 0.4. The nurses (who run the DMD clinics at my hospital) left me on Tecfidera for a couple of months to see if they recovered. They didn’t, so the drug was stopped.
If yours are at 0.7 and you’ve been on the drug for a good few months (so it’s not the early days of expected reduction), you should perhaps speak to your MS nurse, or the DMD clinic nurses, or neurologist. What I would expect is that you’d have your blood tested monthly for a while to see if the lymphocytes drop anymore or recover.
Talk to someone who’s responsible for your DMD treatment and see what they say.
Thanks that’s great information, I hope it doesn’t drop any lower then, otherwise I will then have the pain of choosing another DMD not what I really want especially as I’m going on holiday in June this year.
tecfideria dropped my bloods amd they didn't recover so I had to stop it
Hi how low did your bloods drop to? What DMD did you choose after? How it any side effects?
They went down to 0.4 and i'm back on copaxone injections 3 times a week