Hi, hoping for some advice on first line trearment of medications. My 16 hear old daughtet has been diagnoised in October. She had iv steriods in october, she started with symptoms in july 2017 and the consultant has now suggested she concider 1st line treatment options all of which are injection other wise they have sugested texadera ( with a risk of PML) they cant say weather she is still recovering from 1st episode or wheather she has had another relapse? I know everyones situation on medication is different and personal to each individual but wanted some advice please on others reactions and experiances to help her and us make an informed choice, help and advice appreciafed, ma y tbanks
Well Tecfidera is a good first line DMD. Actually, there have been some experts say that it works best when it’s the first DMD taken.
The risk of PML with Tecfidera is quite low. Basically, PML is a serious virus, but you can only get it if you fulfil two criteria.
a) You have come into contact with a different virus called John Cunningham virus. This is common, and you wouldn’t know you’d been exposed to it (most adults have, but it’s quite possible that your daughter hasn’t).
b) Your white blood cell count is reduced as a result of taking the Tecfidera. Specifically, your lymphocytes count.
The neurology clinic who prescribe Tecfidera test blood frequently to check for low lymphocytes (among other things, to make sure the drug suits you). So actually the risk of PML from Tecfidera is pretty low.
The problem your daughter will perhaps find with the drug is that in the early days particularly, it can cause nausea and general stomach discomfort. For this reason, the advice is to take the drug with food before and after the tablet each morning and evening. Teenage girls may not be too happy with having to eat a reasonable quantity of food so it might be a bit harder for your daughter.
What you can do to lessen the side effects is request that the drug be introduced very slowly. Normally, the drug is given at a half strength for the first week, then increased to the full strength after that. You can ask for it to be much, much slower than that. For example, one half strength pill for the first week (instead of the normal two), two half strength pills for week two, One half strength and one full strength pill for week three and then onto the normal dose of two full strength pills in week four.
If she’s unhappy with this drug choice, then the beta interferons and Copaxone are an alternative. Copaxone in particular is the drug with the least side effects. It’s injected a few times a week subcutaneously (just under the skin with a very small fine needle). It doesn’t hurt and in my experience, doesn’t lead to any nasty side effects so long as the injections are rotated around the fattest parts of the body (the bottom and thighs in my case).
Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid The decision aid tool includes all the various drugs available, many of which your daughter isn’t being offered, either because her MS isn’t seen as being ‘highly active’ or because the prescribing centre isn’t set up for a specific drug. But it will tell you some more detail about the injectable drugs and Tecfidera.
Best of luck.
Sue’s given a good, thorough answer. As she says, the risk of PML from Tecfidera is tiny - if I remember right, 1 in 25,000. The only thing I can add is that it’s OK to swap a DMD if your daughter doesn’t get on well with one, either because of side effects or it just doesn’t seem effective. The first one I started out on (Betaferon) was a bad match for me. The side effects were horrible, and it did nothing to slow relapses. So I swapped to another one (Rebif), and that was much better - some ibuprofen was enough to deal with the side effects, and it really helped to stabilise things. But as you say, everyone’s different, and there’ll be other people who had the opposite experience to me.
If you have any questions about anything at all to do with MS, then use the forum to ask away. There’s bound to be someone who can give you all the help you need.