panicked after drugs delivered so many questions

I was diagnosed a few weeks ago after having 1 cis but other lesions on my MRI so advised to start dmds. The consultant advised betaferon. I meet with the ms nurse who said I could choose. This week is the first time in 7 weeks that I have left the house and my energy is returning and the pain better and I’m due to start betaferon next week. I will start off on a lower dose and then increase but I’m worried about the side effects and also the long term use of this drug even though I know I have to start.I have 3 children and am just starting to function again and dont want this to stop. I have also been researching and find that im drawn to copaxone as you dont get flu effects and potential liver and thyriod damage. I am concerned though regarding allergic reactions and also as I’m very thin i haven’t much fat to inject into. My drugs have also been delivered, is it too late to change my mind. A good friend also called me and said she had a colleague who had been using betaferon for years and advised never to use it which has stressed me even more. I have started taking fish oils and d3 and am having a low fat diet. I know everyone is different but I just need to hear other peoples experiences as my mind is in overdrive and I know there is no magic answer but feel the more informed I am the better decision I’ll make. Thanks

Sorry does anyone know how to delete the multiple questions , obviously new to this and didn’t think it had sent xx

Hi Zoe, Welcome to the forum. Sorry I can’t help …no clue…I’ve done it before too!! And sorry, I’m not on any DMD’s so can’t help with that either. Bloomin useless eh? Xx

Can only help by saying I am in the same boat, except my neuro wants me on Copaxone. Still thinking about it but know I have to come to some decision soon. The problem I have is taking these drugs seem to be " suck it and see". They may work, they may not, it really is a gamble but do you want to risk not taking them,what if one takes these drugs for ages , have no relapses maybe that would be the natural course of your MS.?

Sorry for the ramble, and I apologise if I have made you more confused. I am sure someone with more experience will come along and put us straight.

Maxie

Well, what a supportive friend! NOT! I’m sure she/he was trying to be helpful, but talk about bad timing!

Getting that first delivery is a real shock to the system - I can’t believe that anyone who’s been through it didn’t start questioning themselves in loads of ways.

I’m biased because I’m a fan of DMDs (they work brilliantly for me), but I think you are doing exactly the right thing: using what’s available to do the best you can against MS.

As Val said already, an awful lot is made of the side effects when most people don’t get any problems with their liver and find that paracetamol and/or ibuprofen sorts the “flu” out. It can be difficult for some people, but if that happens to you, then you should be able to switch to Copaxone.

As far as long-term goes, the only negative side effect that I know of is the ability for your body to develop NAbs - neutralising antibodies - which can reduce the effectiveness of the interferon. If that happens, then (again) you can switch to something else. There have been people on Betaferon for more than 20 years - if there was a problem with being on it a long time, medics (and lawyers!) would have been doing something about it a long time ago!

Being thin can be an issue with injecting in some places, but your nurse will show you how to manage.

I forgot to say - the reason you start on a lower dose and then increase it is to reduce the side effects. It works well for a lot of people. Hopefully for you too :slight_smile:

Karen x

Hi Zoe,

I am in a very similar position to you. I have just had the results of my second MRI and I have new lesions. :frowning: I think the neurologist was hoping there wouldn’t be and I certainly was. I am either going to try Copaxione or Rebif. I have the MS nurse coming round next week and I will decide then . I think that it will be Rebif as my friend took it for one year and her MS has stabalised and ten years on she is still fine. Also, someone said that they were getting two relapses a year before they took Rebif and once they started taking Rebif they didn’t have a relapse for five years. I have had three relaspes in five years without anything. So, it all sounds good to me. This is quite a good site http://www.patientslikeme.com/conditions/1-ms-multiple-sclerosis. The numbers are quite small but it does give you a reasonable idea.

Just as an aside, I got a really bad cold four weeks ago. My leg buckled and gave way underneath me when I was on a night out. It was very scary. Since then I have had a problem with my left leg. It seems a lot weaker. In the last week, I have upped the Vit D3 that I was taking from 1000iu to 3000iu (usually cannot take more than 1000iu during summer time, makes me feel quite manic). Today, my leg is feeling completely better. I don’t know if this is completely anecdotal but I must say I am very happy about it.

Good luck with your decision. I would be very interested to see what you choose and how you get on. Good luck.

Adrian