I think this is probably a good thread to come in on with my query. Dx in May, began Plegridy in July, relapsed September, my walking has deteriorated a lot, I felt I’d chosen the wrong dmd. Having reachered on here and read Paolo’s informative posts, I’d decided to ask for Tecfidera next Neuro appointment. Saw her yesterday and she said ifyou not been on plegridy long enough for a true picture. This I can agree with. She’d be very reluctant to give Tec though, because of the risk, pml. She knows someone who’s got that and it’s not pleasant. Even though a patient is monitored carefully, if contracted it can’t be cured. She’s organising an mri to compare with my first one and will see me again in February. By this time she’ll have a bigger picture, so to speak. If I still want to change dmd, she’s talking Copaxone. Don’t want to be stabbing myself 3 times a week! That’s the only reason I chose plegridy to began with. Any opinions welcome.
Dr Giovannoni ends by commenting that out of about 170,000 people worldwide who are on Tecfidera, only 4 have developed PML. To get PML, you have to have the JCV antibodies and get extremely low lymphocytes. The monitoring done on bloods in the UK is picking up problems with lymphocytes pretty well so far.
I understand that your neuro doesn’t think you’ve been on Plegridy long enough, but once the decision is made to swap to another DMD, to be honest it just doesn’t make sense to go on Copaxone. Both Plegridy and Copaxone are injectables with relapse reduction rates of about 30-35%. Tecfidera is an oral therapy with a reduction rate of about 50%.
You might also find that you could get on Tysabri which has an even better relapse reduction rate of about 70%, but is a second line drug.
In your position, I would do as much research as possible about the DMD options and think about what fits your lifestyle and is most appropriate for you level of ability/disability. Then you can go to your next appointment ready to have some input into your DMD. We sometimes complain that newly diagnosed are given a list and told to “pick one”, but the reverse (ie being told “this is what you’ll take”) is just as bad. If you have a good relationship with your neurologist then she should be open to discussion.
By the way, I have absolutely no axe to grind here. I’ve been on Avonex (similar interferon 1a to Plegridy), Copaxone, Tysabri and Tecfidera. I’ve failed on the lot, but I still believe that the best first line treatment is Tecfidera.
Thanks Sue. I have done my research and thought I had gone to her prepared and determined…however…
I’ll await my second mri and see what the situation is then. I agree, I don’t see the point in swapping one Interferon for another. Perhaps when I next see her and we agree to swap (or not), I will be more forceful and be armed with more information back-up. When I said I understood the risks of PML but understood it was closely monitored, she then said how, if contracted, there was no going back and no cure. How it wasn’t the case of stopping the drug and it would be okay. My own take on this is, if it is that seriously dangerous, then surely it wouldn’t be on the market? I’ll have to wait and see what the next appointment brings I suppose.