Forum

Drugs

I’ve got an appointment with the MS Neurologist on Monday to go through drug choices.

The thing is I don’t want to take drugs particularly but after having 2 episodes in 6 weeks I thought it may be a good idea. I currently don’t take anything, not a single thing, and the thought of injecting myself, or having side effects such a brain herpes, cancer or similar feels me with dread!

Can anyone offer me any advice at all? is there a drug out there with minimal side effects but yet still effective?

Hi Tricky,

I have just gone through the DMD process. If you haven’t had a look already the ms decisions website is very useful, when trying to choose. I believe the Glatiramer acetate (copaxone) is meant to carry the least side effects, but is a daily injection.

I chose beta interferon 1a (Rebif), mainly because it looks nothing like a needle and after a lot of research was happy with it’s success results in relapse reduction rates.

Have a look at the website, but do remember it’s your decision and you need to do whatever will work best for you.

Good luck, Laura x

Hi Tricky, unfortunately none of us want to particularily take the drugs either! The fact of the matter is; if your ms is active then the dmd drugs are the best way to reduce frequency/severity of relapses. There is evidence to prove the earlier you start them the better. Its a personal choice and the msdecisions website will help you choose which one will suit your lifestyle the best if you decide to start on treatment. Your neuro and ms nurse will go through your choices and then the decision is yours. I have been on rebif for nearly 8 years now and i don’t regret it as my ms is stable at the moment. Teresa.x

Hello, only you can decide what one is best for you and your lifestyle. I started Avonex 8 weeks ago, the first two weeks I had minimal side effects and have been fine since then, it’s only a weekly injection so fits around my work pattern. Take it on a Monday night as I work from home on a Tuesday. All fine and dandy on wednesday so back to the office. MS decisions website is really good and I also got the literature from MS Trust and MSS. I don’t like needles but you can’t see them in the injector pens.

I do not remember being consulted about whether I wanted to have MS, and I don’t suppose you do either…

At least when it comes to drugs, a person has some say in the matter - both in terms of whether to take one in the first place and, if so, which one. An MS dx is a real game changer - some assumptions and lifestyle choices that made perfect sense pre-dx need to be revisited, and that is always difficult, always.

I hope that you find a drug that suits you well. It does feel good to be taking control a little bit and starting on one of the few medications that really can get to grips with your MS and how it is behaving.

Gpod luck with it all.

Alison

Sorry Teresa, I realise that, was just speaking out loud about the way I feel, not sure where else you’re allowed to do that?

The thing that bothers me is that I don’t feel ill and yet once I start on the drugs I most probably will? Obviously not taking them I would be potentially swapping my mobility for feeling well.

I think you have taken my reply the wrong way. I was trying to be helpful. Teresa.

No, thanks, I do appreciate all advice. It’s a bit of a minefield but I’ve had a good look at the MS Decisions website this evening and feel a little less baffled than I did. I’m off on my hols for 3 weeks in October and wonder if it’s viable to start after, rather than take all the equipment with me.

How life changes! x

Tricky, I’m due to start Rebif. I have taken my first delivery, had my injection training, but I’m deliberately delaying the start until after my holiday. My MS nurse was fine when I explained that I didn’t want the risk of flu-type side effects during a holiday I’d been looking forward to for 13 months! Plus of course having to travel with the drugs when I’d have only recently started. Hope that helps x

Thanks Emma. When’s your holiday? What made you go for Rebif over Avonex out of interest? x

Hiya. We leave on 31st July so will start Rebif on 12th August (bear in mind that I agreed the DMDs at an appointment in May!). My decision wasn’t very scientific in the end. I’d narrowed it down to Rebif and Avonex, but my nurse mentioned that Rebif was the ‘gold standard’ drug with which all drugs being trialled are compared. I decided that must mean it’s the best!!! I think someone on here also said that Avonex can take longer to get into your system and since I’ve had a number of relapses I wanted the quicker option! Take care X

Hiya. We leave on 31st July so will start Rebif on 12th August (bear in mind that I agreed the DMDs at an appointment in May!). My decision wasn’t very scientific in the end. I’d narrowed it down to Rebif and Avonex, but my nurse mentioned that Rebif was the ‘gold standard’ drug with which all drugs being trialled are compared. I decided that must mean it’s the best!!! I think someone on here also said that Avonex can take longer to get into your system and since I’ve had a number of relapses I wanted the quicker option! Take care X

Ah I see thank you. When I looked on the MS Decisions website I couldn’t see that there was much difference between Avonex and Rebif except Rebif is 3 x a week compared to Avonex at once a week so I wondered why people would choose to inject more often but hearing your reasoning I can see why!

I have my appointment at 11.30 today, will see how I get on!

Thanks again and have a fab holiday x

The other thing to bear in mind is that Avonex is injected into the muscle, whereas Rebif is under the skin. I would say that makes Avonex more painful for most people. Good luck! X

Good point! and they would struggle to find muscle on me under all the layers of fat! :wink: x

Lol! I said to hubby I’ll have no problem injecting the bingo wings and mum-tum areas!!! Oh the fun!

Well I had my appointment and was given Avonex, he didn’t actually ask me which I wanted but also said he thinks I should really be on something stronger but the interferon might just be enough.

I also have to have an MRI on my hip as I’m suffering a bit with it (he thought it could be to do with the two days worth of steroids I had in February?!). I asked if I had many inflammation patches and he showed me on the screens and there really were quite a few on my brain and spine.

So now I just need to wait for the Avonex to be delivered!

That’s good that it’s sorted! Sometimes I wish that the neuros would take the DMD decision out of our hands anyway as it would save us all a lot of research and confusion! Fingers crossed the Avonex does the trick! X

When you first take Avonex take a couple of paracetamol beforehand keeps the side effects at bay. I have injected for the ninth time this evening and I’m doing OK on them