Forum

DMD choice

Well I got a surprise phone call telling me that I am now eligible for DMD. The choice is all the injection ones and techifera. Apparently as well I can chose between the daily and three times a week copoxone. My questions are if someone would be good enough to help.

I have read about DMD via both the MS Society and MS trust info, however, did anyone get any info about the DMD from the hospital?

has anyone had any experience of the three times a week copoxone, I’ve read elsewhere that people seem to get on better with the daily version.

any info appreciated.

thanks

Hello

Have you seen this: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

It might help and then again, maybe not as it includes all the DMDs.

In a way I’m not a good example as I’ve had crappy side effects from most of the DMDs I’ve had. The only one I didn’t have side effects from was Copaxone. And at that time, it was only available as a daily injection.

Certainly Tecfidera wins the argument when it comes to relapse reduction rate. But if you’re bothered by the stomach issues / take with food thing, then maybe better to avoid that one. Although I would say that apparently Tecfidera works best when it’s the first DMD a person has tried (see Multiple Sclerosis Research: #NeuroSpeak: DMF as a second-line agent or not )

This isn’t necessarily helping your decision I know. There are far too many imponderables, too many points at which you have to say ‘it’s all a matter of what suits your body’!

So all I can say is to look at all the potential drugs. Think about your lifestyle. Consider the various personal experiences of the various drugs. And what you are prepared to risk versus the possible relapse reduction.

Best of luck with the decision.

Sue

Thanks Sue. I’m thinking either copoxone or Tecfidera atm. It’s the possibility of low white blood count that is worrying me about the Tecfidera at the moment.

i was on copaxone first and did very well on it.

however i started to have sore injection sites, then they became painful.

i stopped jabbing my tum because that was the most uncomfortable site.

then my thighs.

i wasn’t rotating my sites and developed lipotrophy.

so my ms nurse offered my a choice of the oral therapies which had just become available.

i’ve been on tecfidera since and it’s easy peasy!

my lymphocyte levels are checked every 3 months.

i feel safe on it.

The problem with the white blood count and Tecfidera is that the Lymphocytes, which are supposed to dip initially, do not come back to within normal levels. The Lymphocytes are the type of white blood cell which fight against viruses.

Once the Tecfidera is stopped, the Lymphocytes do recover. It can take several months but, once they have recovered you will be able to go on a different DMD.

It happened to me with Tecfidera, and unfortunately that was my fourth try of a DMD, so ultimately that was the end of the road for me and DMDs.

It’s not a major issue, I missed out on the flu virus that year, just in case, but didn’t get any more colds or other viruses than usual (probably just one cold through the winter).

So I wouldn’t necessarily see the risk of Lymphocytes depletion as a terrible side effect.

Equally, so long as you rotate your injection sites (and I think avoiding an automatic injector is also best because it is a bit more violent than just gently sliding the teeny little needle under the skin), Copaxone shouldn’t give any side effects. In fact, if the relapse reduction rate was a bit more equal between Copaxone and Tecfidera, I’d go for Copaxone every time.

Best of luck with your choice. Don’t forget, it’s not a diffficult thing to change drugs if one doesn’t suit you.

Sue

Thank you both. I’ve requested an appointment with my ms nurse so I can talk through the above. Nothing beats personal experience thou. I shall definitely ask about how easy it is to change between the two drugs.Thanks again.