Changing meds help please!

Hi all, I was diagnosed in 2010 and was offered meds straight away, I chose the rebif injections. After having a bad 2013 my consultant sent me for another MRI which showed more lesions. The ms nurse told me to stop rebif straight away then started to tell me about these other meds on the phone my head was in a spin! The two she told me about was tysbri and gilenya. I’m just so scared starting something else after using the rebif and it doesn’t seem to have done me any good. My friend who also has ms has told me not to take anything the doctor gives me and go for alternative therapy which she says has worked for her. I’m going into hospital in a couple of weeks then I have to decide?? If anyone are on these meds I’d be so grateful to hear your views or if you’ve decided to go for the alternative therapy or nothing at all. Nic x

Hi Nic I also opted for Rebif straight after diagnosis and it worked well for 3.5 years but last year I had 2 relapses affecting mobility within 3 months so I had to consider a different DMDS as well. I opted for Gilenya and have been on it since November. I was a little nervous about the first dose and the side effects it has on the heart as there is a history of heart disease in my family. However it was uneventful and I haven’t had any side effects since. I didn’t mind doing injections but I certainly don’t miss them. It’s so much easier to take a daily tablet :slight_smile: Good luck with your decision Tracey x

I have been on Tysabri since October 2011. It took quite a long time for it to start to have an effect - I was still having (disabling) relapses for the first year and so I am in a much worse state now than when I started on the drug. I still believe I am in a better place than I would be if I wasn’t on it. Recently, I had to delay my infusion for a week (holiday) and saw a quite scary deterioration a couple of days after I should have had the infusion. I had a very trying week after the infusion but am now pretty much back to where I was before the disruption.

I believe that I wouldn’t be so disabled if I had started the Tysabri earlier and I advise you to go on one of these effective drugs as soon as possible. I started on Tysabri as soon as I was offered it. Before this, I had tried lots of alternative therapies and had still seen my disease progressing in a horrible way. The problem with trying other things and holding off on the drugs that actually work is that you never gert back to where you would have been if you had started on something effective earlier.