I’m recently diagnosed and my doctor wants me to start a medication ASAP. He gave me some options but left the decision up to me. I’m hoping some of you will share you experience with these drugs, Tecfidera, Rebif and Plegridy. I’m not jazzed about doing injections but the PML side effect of Tecfidera worries me. Please share if you’re on one of these or if you were and why you changed, etc. I would really appreciate any feedback!! =]
Welcome to the forum. I hope you’re doing OK with your new diagnosis. It’s not an easy thing to get your head around. I won’t suggest that you’ll eventually ‘come to terms’ with it, or reach a stage of ‘acceptance’, because many people do not for years, if ever. The truth is, it’s crappy bad luck to get MS.
With regard to your disease modifying drug (DMD) choice, I can help out a little. First of all, getting PML from Tecfidera is very unlikely. The action of a Tecfidera is to deliberately lower your lymphocyte count temporarily, then for it to recover. Your lymphocytes are part of the white blood cells which fight viruses. So if your lymphocytes do not bounce back, but instead keep getting more depleted, you are in danger from viruses. This could include PML, if you have the antibodies for the JC virus (stands for John Cunningham and is commonly written as JCV+). But to counter this, your blood is tested while on Tecfidera. If the lymphocytes count goes below a certain level and doesn’t recover, you are taken off Tecfidera and gradually your lymphocytes will recover. So the PML virus never gets a chance to attack you.
If instead you opted for an injectable, the injections are really not as scary as you think. They are subcutaneous, which means it’s a very short needle that just goes under the skin. You can also use an automatic injector which means you just press the device against your skin and hit a button.
Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This lists all the available DMDs together with their average relapse reduction rates and potential side effects. Obviously, some of these are either 2nd line drugs (so you have to have continued to relapse while being on a different, 1st line DMD), and some are for more active MS.
One last point is, it appears that Tecfidera is most effective when the person takes it as their first DMD. It is also more effective than either of the beta-interferons you’ve been offered, so in your position, many people would suggest that you could try Tecfidera and see how well it suits you. If you find you dislike taking it (you do need to sandwich it in between foodstuffs to avoid stomach issues), you can quite easily swap to a different drug.
All the best.
Great explanation above from Sue.
I take tecfidera and have done for about 10 months. I am lucky that side effects have been minimal- just flushing of the face/neck/arms for 15 minutes a day and that has now reduced to just about once a fortnight! I’ve had my blood and urine checked 3 monthly. No problems.
its my first dmd as I was just diagnosed a year ago.
the medication is twice a day to be taken with food. You take a lower dose for 2 weeks to introduce your body to the meds. It gets delivered to my work every few weeks.
i was worried about Pml too- but it’s a very very small risk.
best of luck with your decision- sooner you get on a medication the better x
Out of those 3, evidence is in favour of Tecfidera as most effective. Regarding PML, as Sue mentioned, cases of PML in people on Tecfidera have only occurred because of their reduced blood cell counts. I am on Tysabri myself but have already decided to go on Tecfidera if I ever have to come off it.
I’m RRMS, and the first drug they offered me was Tysabri… it scared the living daylights out of me so turned it down and opted for Rebif instead. Antiquated it may be, but it’s working for me (haven’t had anything I’d call a relapse since I started it, just the odd Bad Day when trying to do too much) and more to the point, I’m not scared every day about PML or something like that. I think that would have turned me into a nervous wreck, so am happy with my choice of drug. In the long run, we will only know if we made the right choices in hindsight, so it’s all a bit of a lottery!
I am on Plegridy and have been since January (diagnosed October 2017) I was wary of Tecfidera and it’s which is why I went for Plegridy as it is only taken once a fortnight. Doing the injection, as Sue said is super easy. There is nothing to it,you simply press the pen down on your leg and the whole process (which takes seconds) is automated. I initially had flu like symptoms and felt quite rough after the first couple of injections but since then my symptoms have become less with each injection. Unfortunately I have been called back for more blood tests as there was something amiss with my last results so I hope that I don’t have to stop taking it just as I am getting used to it!!! However if I do have to stop taking it I think I would now opt for Tecfidera. Like you, when I made my original decision I had only just been diagnosed and everything was very new and scary and perhaps I ruled out Tecfidera too easily because I was scared of potential side effects rather than concentrating on the benefits? As Fracastorius said it is all a bit of a lottery and we will never know how things would go if we had made the other choice!