Hello and lots of questions.....sorry!

[rach]

Hello, I'm fairly new to the world of MS and have lots of questions I'm afraid!

 

 

I was diagnosed with relapsing remitting ms in Oct 2011 after a mild episode of numbness lasting 6 weeks. I then had another mild episode in Sept 2012 when I was 36 weeks pregnant which only lasted 2 weeks so I have spent the last few years burying my head in the sand over the diagnosis as I felt so well I just didn't really want to face up to it.

 

That is until a few weeks ago when I had my first 'proper' experience of MS. I couldn't walk in a straight line, was vomiting every time I moved and the left side of my face went completely numb. I called my MS nurse who got me into hospital and I had 3 days of steroids which made me feel completely mashed but did the job as I was up and looking after my boys, driving & generally doing everything again (albeit a bit slower) after 1 1/2 weeks.

 

Now that I feel so much better I would like to go back to burying my head in the sand but my neuro and MS nurse want me to start on DMD's, I have a choice of Avenox, Rebif, Betaferon and Copaxone. I got sent some DVD's and told to look at the MS decisions website, but I am totally confused.

 

I didn't really feel like I learnt that much from the DVD's and then was surprised that the MS decisions website was saying the DMD's only reduced relapses by 1/3, which didn't seem like a lot considering the potential side effects of the drugs. Also the website said that there was no evidence that copaxone reduced disability which I thought I was leaning towards. Does anyone take Extavia? I don't know anything about it and wasn't offered it.

 

So for anyone on DMD's or looking into it at the moment, where did you get all your info so that you could make an informed decision as I really feel like I'm missing something? If you are already on any of the drugs, how are you finding it? Is the flu feeling with some of them really bad as I have young children so taking paracetamol and sleeping off the flu feeling as the DVD's suggest isn't really an option when I have to be up in the night!

 

When did you all start on drugs? Was it soon after being diagnosed? I was hoping not to have to go on drugs for a good few years (down to my own ignorance about it all) so I'm still coming to terms with it.

 

Any tips on coping with the needles? I HATE needles so this will be fun!!

 

Is there anything else that would be useful for me to know?

 

Sorry for the essay, I look forward to chatting to you all in time :)

 

Rach

[Crafty Cow]

Hi Rach,

 

Welcome to the site.

Please don't apologise, you will have hundreds of questions as its relatively new to you, and you will certainly get a lot of support from this wonderful forum.

 

Unfortunately, I am not diagnosed as yet, so can't answer your questions. But I just wanted to say, hello, welcome and hang in there!

 

I am sure the replies will come flooding in for you today.

 

Sam :-)

[Hezza]

Hi Rach and to the forum.

All the resources that you've been given are the ones that I used when making my own decision. I started injecting rebif roughly 3 months after my diagnosis and have been using it for about 4 and a half years now.

 

I never experienced any major noticeable side effects. I do have lots of red blotches on my injection sites which I know some people wouldn't like but that doesn't bother me really. We all react differently to medications and the manufacturers have to list all possible side effects but that doesn't mean that you'll have them. Unfortunately the only way to find out is to try the drug and see. There are auto-injectors available for most of the DMDs that handle the injections for you so you don't need to see much of the needle or physically inject it yourself.

 

It's true that there are uncertainties about the effectiveness of the DMDs. My take on it is that if there is something I can do to help myself stay as well as possible I will do it so I chose the drug that fitted in with my lifestyle and gave it a go. I also make sure I eat fairly well and exercise regularly. So far I am doing well. My Neuro is satisfied that my MS is 'stable' at the moment and my last relapse was almost 2 years ago. Our agreed plan is that I should keep doing what I'm doing.

 

I don't really know anything about Extavia but there's some info on the MS trust's site: http://www.mstrust.org.uk/atoz/extavia.jsp If you want want to know more about it I'd suggest asking your MS Nurse as he / she will be able to give you information for your own area.

 

I hope this helps a little. I'm sure some of the other members will be along with their own inputs too.

 

[Scully]

Hello Rach,

 

I see you have been a member for a while, that's the nice thing about this forum, is that yu can pop in and out whenever you need to, so don't apologise, no need.

 

Yes, the MS Decisions website is the one we normally recommend, I'm sorry you haven't found it useful, it can be very confusing. Don't forget, you can discuss all your concerns with the Neuro or the MS Nurse, so there is no need to feel pressured about making the decision. Most DMD's can only help to cut the relapse rate.

 

I can't comment on them as I'm a Primary Progressive patient so DMD's aren't an option for me anyway.

 

Maybe make a short and succinct list for each DMD, with pros and cons for each. Add on the drugs that you may prefer but weren't offered, and two these along to your MS Nurse or Neurologist and see if they can help you out with this very tricky decision.

 

Scully

x

[lala]

Hi Rach and welcome

 

You don't need to be sorry for asking questions, that is what were all here for!

Sorry to hear you have been having a hard time of things, but good to hear you are feeling a bit better now. I was diagnosed in Feb, so i have just gone through this whole process as well. It is a bit of a minefield of information, i did find the ms-decisions website to be the most useful, all though it does need a bit of updating. I think that Extavia is a new brand of betaferon (betaferon being the generic drug ) Watching the videos of people using the injections really helped me.

 

I am waiting for my funding to come through and should be starting by July on rebif. Like you i have two young children and am concerned about the side effects, but all you can do is look at the information available and decide what is going to suit your lifestyle best as no two people will react the same way. If it doesn't work out the way we had hoped, or side-effects are un-managable then we can change, it is not set in stone.

 

Also have a look at the ms society & ms trust websites they have lots of information booklets that can be downloaded and may help. Try not to worry about it too much, there is no right or wrong answer, you can only do what you think is best.

 

Good luck with your decision and ask away!

Lala x

[rach]

Thank you all for your replies, and crafty cow for your welcome :)

 

Scully, thank you for your thoughts, I will have to go back over the MS decisions website, maybe I was being too harsh with it or was just very disappointed that there was no drug on offer that reduced the chance of a relapse by at least half with no side effects....wishful thinking hey

 

Hezza, its great to hear a positive story with rebif, I think that sometimes its easy to just pick up on all the negative stories so thanks for sharing. I hope it continues to work for you! And thank you for that link I will have a look tonight.

 

Lala, how old are your children if you don't mind me asking? I have 2 boys aged 4 and 6 months and they make it easy for me to distract myself from dealing with having MS as I am just so busy with them. I know I have to face up to it though and will probably be on here a lot more seeking advice & help.

 

My MS nurse wants meon drugs as soon as possible so we might be starting our DMD journeys roughly around the same time (I was told 6-8 weeks from when I choose my drug, if I ever make a decision :S ) so it will be interesting to see how we get on with them!

 

Rach x

[lala]

Hi again Rach,

I know how you feel about being disappointed with the drugs on offer, but i think something is better than nothing, as long as the side effects are manageable which remains to be seen.

 

My two boys are 2 & 4 years, they run rings round me, although they are the perfect distraction from too much thinking! Having a 6m old must be keeping you busy, i do miss the baby phase before they grow up and start to answer back :-)

 

Don't feel rushed into making a decision about treatment, you need to do it all on your terms. Yes it will be an interesting time, trying to stay positive about it all - just wish it would hurry up! I really wish you good luck, if you need anymore advice feel free to ask and please let me know how you get on.

 

Lala x