Forum

DMD Treatments

Hello Everyone

I had an appointment with my consultant today to talk about DMD treatments he has give me the option of two DMDs Rebif and Tysabri i was wondering if anyone is on any of these and if so how are you finding them.

Many Thanks
Dave

Hi Dave.

 

This is probably a better question for the Everyday Living forum as there are more users on there. You could try searching that forum too - there have been similar posts on there since the forum was redesigned. For what it's worth, here's my opinion :-)

 

I'm on Rebif. Very recent research suggests that Rebif 44 is the most effective of the standard injectable DMDs (which is why I chose it!). The official data are that injectable DMDs reduce relapse rates by about 30% on average, reduce the severity of the remaining relapses, help to delay the onset of progression and help to slow progression. Rebif takes about 5-6 months to start working properly. I found the first three months really hard work with flu symptoms, but I've got used to it now. If it doesn't work, then I will switch to fingolimod/Gilenya when it finally gets approved in 2012. I wasn't eligible for Tysabri.

 

Tysabri is an infusion given once a month in hospital. It is the most effective DMD available at the moment. It reduces relapses by about 70% on average and helps to slow progression considerably more than the injectable DMDs (I can't remember the % though, sorry). What is even more remarkable about Tysabri is that many people find that existing symptoms improve (this doesn't happen on the injectables). It takes about 6 months for people to notice the difference. The problem with Tysabri is that it comes with the very small risk of PML - a brain infection that can be fatal if left unchecked. If you don't carry the JC virus, you can't get PML, and there is now a blood test for the JC virus. A lot of people don't bother with the test because even if you don't have the virus now, you could catch it tomorrow, and even if you do have the virus, the chances of getting PML are very small, plus if you are unlucky enough to get PML, there are procedures in place in the UK to stop it very quickly. So although it's a really scary possibility, it's about as highly unlikely to happen as it can get. I know several people on Tysabri. All but one stopped having relapses completely and most have seen big improvements in their symptoms. The other one developed anti-bodies to Tysabri and had to stop it.

 

It's a difficult decision. If I were you, I would also be guided by my neuro. What did he/she think was for the best?

 

Karen x

Hi Karen

Thanks for the reply my neuro recommends Tysabri because it’s the best on the market he says. The choice is mine really i am swaying towards Rebif to be honest. The idea of having to go the hospital once a month and the fact of the PML and there’s the risk of IRIS if and when you stop Tysabri just really put me off it to be honest.

Thanks again
Take Care
Dave x

Maybe you should "talk" to some of the people who are on Tysabri? They can tell you what it's really like. There are quite a lot on EL - why not stick a post on there?

Kx