Forum

DMDs....Cast your vote!

So just got my official DX today and have been told to pick between 5. I have been reading up on them for quite some time and still have no idea. Obviously it me who needs to make my own decision but would be interested on what ones have worked well for all of you.

I did read that there were certain ones you can’t take if you have ever had depression (that I have) so is this true?

Hope you don’t mind me asking this

Lindsay

I have been on Extavia for three months now and have had no ill effects, am used to injecting and only had mild side effects the first few times.

I spent ages doing research about which one to opt for but when it came down to i my hospital only offers Extavia in the first instance so I didn’t have a choice after all. If it didn’t agree with me then I’d be ok to try other alternatives but everyone is given Extavia first.

About 8 years ago I was given the choice between Avonex Rebif Betaferon or Copaxone. I chose Betaferon and haven’t regretted it for a moment. I’ll stay on it as long as I possibly can while it’s keeping my relapses at bay. Feel free to ask any questions about it.

Good luck with whatever you choose.

I went for Copaxone.
My reasons at the time were:

  • that I thought it would be easier to build a daily injection into my routine, than one with a longer time interval.
  • that if for any reason I had to change, I could switch to any of the interferons - but if I picked any of the interferons, then the only change was to Copaxone.

In the six months prior to starting the treatment, I had three minor relapses; in the seven months since, I have only had one minor relapse (and that was over three months ago).

You are warned about a possible reaction which can come at any time - usually six-nine months after starting - when you get a feeling that you cannot breathe, and your body has just stopped. Someone on this forum has just reported such a reaction after the 2nd or 3rd dose. I have not had it yet.

Cannot comment on any of the others, of course.

Geoff

Hi

My vote is for copaxone. 12 months without a relapse seems good to me.

I was advised by consultant & MS nurse to avoid betaferon and go with copaxone as I too have depression.

Clare

Hi Lindsay

My husband helped me to choose, as I hadn’t a clue really. He said that he thought Betaferon would be my best bet . I am glad we chose it because you can stay on it when you are S/Progressive. I have been told and do feel that I am progressive now so it has worked out quite well. Ok I had bad side effects for a couple of days and I did still have a mild relapse the first year but not had any bad relapses for a couple of years. I have had anxiety and mild depression; can’t say that i’ve noticed it become any worse since I’ve been on Betaferon.

Good luck with your decision.

Wendy

x

I went for Copaxone the first time round because I was a wimp (no to Avonex) and I didn’t fancy the flu side effects of interferons. It kept me pretty much relapse-free for more than 3 years, was dead easy to inject, stayed out of the fridge for up to a month and had no flu side effects. Brilliant really, but my neuro took me off it because I started a bad relapse.

I started on Rebif 6 months ago. The first 3-4 months were not pleasant because of the flu, but this has mostly worn off now. It comes with a very nifty autoinjector device, has a much smaller needle and therefore is less painful to inject than Copaxone. It’s early days yet, but I honestly think it’s making a difference. Recent research suggests that it is the most effective injectable DMD.

I don’t know about the depression thing - that might be the deciding factor.

Good luck choosing

Karen x

Thank you all for your replies.

My MS nurse is posting me out some videos about them all to try and help but I have seen videos on the MS decisions website and just so confused.

So far Copaxone is standing out for me as it says you don’t get the flu symptom side effects but then thats injections everyday.

Any more experiences?

I’m in the same boat as amylou, in that I was only offered Extavia. I’ve been on it since July 2011 and its going fine. (I was diagnosed in January 2011) I had flu like symptoms for the first week or so, and I was told to take it in the evening so that I would sleep through the worst of any side effects. I find it easy to remember to take it every other day, but have a reminder built into my computer diary just in case I did forget.

I was (and still am) scared of needles, but you cant actually see the needle until the injection is done if you use the automatic injector thingy.

I had three minor relapses in total (May 2010, Dec 2010, June 2011), but have been very well since starting on Extavia.

Good luck x

Injecting every day actually has its advantages. I used to inject in the morning so if I forgot, I still had lots of time to remember(!) but also so doing the injections just became part of my getting up routine: go to the loo, wash, do injection, brush teeth, get dressed,…

Dead easy.

Karen x

I was not given a choice by my neuro I was put on copaxone, I have only been on it since October, I was actually dreading the needle bit, its part of my daily routine now I was adviced by my ms nurse to always have someone in the house when I inject incase I get a bad reaction, so I do it at night and go to bed at least if I do get a reaction I sleep it off,

the injection needs to be out the fridge for 30 minutes I use the autoinjection one.

up to now the only bad reaction I’ve had in my right arm I could not even lift it it felt like a lead weight, since making sure I dont inject there its been ok

Hi Lindsay,

I was on Avonex the flu like symptoms and the night sweat weren’t nice I didn’t stop or ease the relapses for me I was told my MS was aggressive RRMS and I’d need something stronger so I began Tysabri.

The Avonex works well for some.

My friend was diagnosed a couple of months ago and he was told to pick one he’s going for Copaxone he suffered from depression and is on anti depressants and his neuro told him Copaxone is good with that the rest can make the depression worse I don’t know I’m just telling you what he told me.

Mark x

Have just been reading the Pathways mag-[MSRC] There is a very distressing article about a lady who had tried a number of dmd’s and suffered terribly from fatigue and injection site reactions. She then changed to Tysabri - and after 42 infusions she contracted PML- and is now a paraplegic. The poor dear soul cannot even speak - has to have everything done for her. She is Dr Natalie Murphy Walsh - and has PhD in pharmacology. lts the saddest thing to happen to this couple - Her husband is trying to raise money for her continuing care - as there is no compensation as she had signed a disclaimer. So do be careful Lindsay - look at all your options. The msrc site - and -ladieswithlesions - will give you more of an insight into what to choose. l haven’t seen Campath mentioned - is this not used anymore. l did hear of [another] Dr.

who had been in a wheelchair - but improved enough to get back to walking and working when taking Campath.

l have never taken dmd’s as l have spms - so l cannot add any personal advice - but after reading about this lady - l would really take care. l have the mag open now - and the photo of Natalie on her wedding day - looking so happy - is heartbreaking.

Frances

This is a very sad story. I think, however that it is important for anyone choosing a DMD to remember to look at the occasional sad story in the context of the thousands of people who are benefiting from the drugs. In other words, all the people you don’t see sad photos of in magazines because they are doing perfectly well!

Alison

This is sad and I herd about poor Natalie when I’d started Tysabri but it didn’t put me off It did make me go and write a living will I’m doing really well on Tysabri just had my 42nd infusion there on Thursday I was going the way Natalie was before I started Tysabri not as bad but In a wheelchair with only the use of my left arm my speech swollow and eye sight where going and fatigue well if I could have stayed awake for a few hours at a time I was lucky.

I was on Tysabri and out of the wheelchair walking and getting a life back when I herd about what happened to Natalie the reason I made a will is I don’t want to be left like that if Tysabri went against me my family cared for me when I was bad washing and dressing me and the day my electric wheelchair came it almost broke my heart (I never needed it and gave it back) I said to my family If I ended up in hosipal like that please let me go in peace they said they’d never do that so that’s the reason I made a will now when I’m well enough and can choose what happens.

The risk of PML is at its highest if you’ve tried all the other DMD’s your JC positive and you’ve been on it over a year I know of at least 1 person who is like that but he’s still on Tysabri and has had his 68th infusion yesterday.

I just seen what MS can do and I’m the kind of person that would rather die trying then wasting away doing nothing.

But thats me the choice is yours and no one else can or can’t make you do something.

Mark x

Ps Tysabri is starting or has started stage 3 trails for spms I hope it has good results I have friends that would give anything just to try Tysabri there spms and are just told there’s nothing for them

Sometimes the stories you hear are so frightnening aren’t they? How sad for that lady, it does make me seriously think about redoing my will as mentioned and just pray that her story isn’t common.

I’m also in the ‘make a choice’ of four disease modifying treatments. It’s so hard to choose, I like the little rebif machine but am concerned like Lindsay about the depression, flu and the fatigue. I keep swaying towards Copaxone but really not sure. Feel like my legs are getting more numb all the time, and fingertips now (do symptoms of numbness spread in the cold?) I was only diagnosed a few months ago, I’m 37 and I’m on relapse number four in 12 months arrggggh. Feeling like I just want to crack on with a treatment asap to get on with my life and enjoy being a mum again.

Phew rocky road isn’t it . xx

I’ve been on rebif for almost a year.

Bad points are that you have to inject 3 times a week which if you don’t like needles can take a bit of time to get used to. You also get injection site marks which aint too pretty and flu-like symptoms to start with.

Good points are that you get the rebismart which is easy to use and it auto injects you so needles aren’t so scary, flu-like symptoms don’t last forever (for me it was about 4 months & you can save on your heating bills!) & most importantly for me, I’ve been relapse free since I started it (I’d had 2 relapses in less than a year before I started it).

Good luck & best wishes

Karen

xx

Hi, I decided on Copaxone which I started only 9 weeks ago. I was dreading the thought of daily injections but it has been fine. So far I haven’t had any bad reactions and my skin is fine apart from the occasional bruise. I use the auto inject pen. I have two children (3 and 9mths) and I didn’t fancy the thought of trying to look after them when i had flu like symptoms. Especially when my nurse said some people have to schedule work around injections as they feel so ill the next day. Good luck with your decision

I opted for Betaferon to begin with as i travel a lot and it can be kept in a cool bag and it is only taken every other day. BUT i also had suffered from depression in the past but had gotten it under control so i thought i’d be fine but it all came flooding straight back. I lost it completely! Felt horrible for 9 months (depression and mega flu symtoms) and changed to Copaxone. The site reactions are a pain in the ass (yeah i know, ha ha!) but i feel like i have got my sanity back. As much as it is ever gonna be back! I know every drug is different for every person but i just thought i’d stick my oar in and say that it was a very unpleasant experience for me. Although it is a big decision, if whatever you choose doesn’t work out for you, you can always change drugs if you have a bad reaction. Good luck with it all. x

Don’t seem to hear much about Campath - is it still available - and does anyone take it. Only, l had heard of people having amazing results on it.

And with dmd’s - does everyone have to sign a disclaimer - l know you do with Tysabri.

And l fully understand Mark’s situation. And if l had aggressive RRMS - l would probably have done the same.

l have been SPMS right from diagnosis - 30yrs now- which is strange - but perhaps l had rrms before and did not realise -l could have been effected mildly.

We are all so different.

F.