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Doc says it's time for treatment....

Hi everyone, I’m new to the site although I was diagnosed over 6 years ago (age 34) with RRMS. Most of my relapses have been very infrequent, mild and sensory, except for one 3 years ago that needed steroids, and an episode of optic neuritis earlier this year which didn’t need treatment. I’ve had a couple of other sensory episodes this year but they were very mild and resolved quickly. At a check up with my neuro today, he told me he wants me to start DMD. I really don’t feel ready to go down that path as I’m well in myself and lead a very busy life. However, I will have an MRI to see what’s going on and I’m researching the drug options now. What I’m really afraid of is the flu-like symptoms that the interferons cause (plus the liver and thyroid potential problems). So I was sent home with information on Betaferon, Avonex and Rebif to investigate. However, now I’m wondering why I haven’t been offered Copaxone. Do I have to try the interferons first before being offered copaxone? Daily injections worry me a lot less than weekly flu!! Thanks so much!

Sounds like internal politics at the hospital to me. I was told to look at the MS Soc. info and make my own choice.

I went for Copaxone. I would ask for it and see what the reaction is. Remember that the cost of a DMD comes off the hospital budget - so they might have a vested interest in which one you choose.

Geoff

Thank you Geoff, I’m definitely going to ask for it (if I decide to go down the DMD route).

Hi Hayley,

I’m a bit similar in that I refer to myself as an MS fraud. I have it but it does not usually affect my life that much. I’ve had it 12 years - diagnosed when i was 30 and I’m currently on my third relapse. Even with that I still did 90 mins of belly dancing last night - although I was walking like I was well and truly phished when I was going back to the car. Someday the police will stop me and refuse to believe I’m sober. I have a few new symptoms this time so I’m off to see an consultant in december and this will be the first time I have seen anyone since I was diagnosed. Even if the doc suggests it I will not be going onto any drugs. I honestly don’t think I need them. As well as dancing I was at the gym this morning.

If you do your research and decide what YOU want to do for YOUR body then I would insist on that course of action. I can’t help with advice on the drugs but I am a firm believer in listening to what your body tells you and in not being forced to take medication you just don’t want.

Take care hun

JBK xx

I can recommend copaxone. I wasn’t allowed to take any of the interferons as I have anxiety and depression and there was a concern that they would really affect my moods. Copaxone is easy, a daily injection that fits in with your routine and little to no side effects. I would definitely ask for it. Tell them you are prone to depression or something then they might rule out the interferons. Best of luck, Lisa x

Hi, I wasn’t given a choice. Was told I was getting rebif and hav been on it for 6 weeks now. Aside from the occasional mild headache I’ve not have any side effects. Certainly no flu symptoms, which was what I was dreading too. Did have a relapse two weeks into it but imagine that would have happened anyway. I was only dx in June, completely out of the blue, but neuro thinks I’ve probably had it five years at least. My relapses are getting more scary so I’m more than happy to take the rebif if it can at least slow then down