Sarah_T 03/05/12
Last reply 6 years ago
DMD Decision time ..Ugh!

Hi
I’m currently trying to make a decision between the 4 DMDs. I’m sending myself slightly mad trying to choose one. I’ve been through the ms decisions site – http://www.msdecisions.org.uk . I’m spending evening scouring forums to get people’s opinions on them and very day I change my mind as to which one to choose.

At the moment I’m thinking Avonex. Originally I thought Copaxone would be the one for me as there are so few side effects but I’m now starting to think maybe Avonex as the site reactions are fewer. This may sound vain but I go swimming several times a week and I have enough trouble with body image without adding red bumps and dents. My thinking is that I have never had flu and I didn’t have any side effects from the steroids that I may be okay on the Avonex.

Is that a really ridiculous reason to choose a DMD? This is starting to stress me out and that is pretty hard to do normally, I’m very easy going person.

Sarah
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pebbles19
6 years ago

Hi Sarah,

I was diagnosed in Jan with RRMS and also given the 4DMD options. I really relied on the advice from my MS nurse, who has been very supportive, who told me to try not do too much “Googling” on the medication, side effects etc. She told me everything I needed to know about each one, advantages & disadvantages and I made the decision to go with the new Avonex Pen. I’m not a big fan of needles so the thoughts of having to inject myself more than once a week really worried. Injection sites are less on the Avonex as you only have to inject once a week rather than daily or every second day. When i first started I did get flu like symptoms for the first few weeks when I started such as hot & cold flushes and muscle stiffness and aches but I did the injection in the evening time so as to not effect me during the day. This decision suited me and my lifestyle and I’m happy using (well as happy as I can be :))but at the end of the day you need to choose whichever one suits your needs! Hope this helps….shoot me any questions you may have!!! 🙂


Lillylilly
6 years ago

I have heard and read so much from people who have had flu like symptoms from Avonex. At the time I had to make the medication decision, I just couldn’t deal with feeling fluey as well as having symptoms.
After deciding on Copaxone, I had a few months of lumps and itchy sites, but no physical reactions. I’m injecting a year and a half now (using the Autoject, which makes it easier) and have no reactions at all.
Don’t be worried about the sites being visible though, someone would have to feel your skin to notice a lump and if you stick to your hips and tummy noone will see anything.


Sarah_T
6 years ago

Hi

Thanks for both of your replies

How long did you wait from diagnosis to starting your DMDs? I know my neurologist is keen to get me started and I do want to take control of this condition. Starting DMDs along with a few other changes in my life will make me feel like I am. I have an appointment with my neuro next Wednesday and would like to have come to a decision by then.


Lillylilly
6 years ago

I was diagnosed after a week of symptoms, they kept me in hospital for the week to find out what was wrong. They sent me home and I was back two weeks later with REALLY bad symptoms. They gave me the options of meds and told me to go away and discuss it with family, mill over the leaflets etc. I didn’t want to wait any longer, so decided then and there and they gave me a perscription for Copaxone. The Copaxone nurse came out a few days later and taught me to inject and that was that. Diagnosed around Oct 23rd and first injection on Nov 11th.


Gav
6 years ago

If it helps you, I didn’t get any injection site reactions when I took Copaxone, but everyone does respond differently, I guess yyou have to pays your money (or not) and take your choice 🙂 You will always have the option of switching your choice of DMD if its really not working out for you.


Sarah_T
6 years ago

LillyLilly – Crikey that was a quick time to DMDs.

Gav – actually that does help and LillyLilly – I hadn’t thought about sticking to my hips and tummy. I’ve certainly got enough fat there to avoid hitting the muscle!


Lillylilly
6 years ago

Same as myself, Sarah!! Only my boyfriend sees those places 😉


Gav
6 years ago

My preferred area for injecting was in my bum 😉 seemed to be less pain receptors there


Lillylilly
6 years ago

Oh my God, by bum KILLS me to inject. I thought my legs would be good and sturdy but they bruised and stayed like that for MONTHS so I don’t do them anymore, and I just can’t bring myself to inject my arms. Just no!!!


Sarah_T
6 years ago

Hehe, Gav & LillyLilly – you two make me laugh. I’ve been giggling away at my desk for a little while now contemplating the funny side of injection sites. I think my colleagues think I’ve lost the plot. Nothing new there then! :o)

I think I’m going to stop googling and side with Capaxone. If I can’t get on with it I’ll try Avonex afterwards. Saying that I’ll probably change my mind again before the day is up!

Right now I really must get on with some work!


meg
6 years ago

I decided on Betaferon for the following reasons:
1. It doesn’t need to be kept cold bcause it’s powder in one vial and sterile water in the other which are mixed before injecting – much easier for holidays or visits away from home
2. As a diabetic, I’m used to subcutaneous injections and they are normally much less painful than those into the muscle although betaferon is more painful than insulin
3. I had had MS without realising it for some years (benign R & R) and when I started having strong relapses which led to the diagnosis I thought I might be heading for secondary progessive and Betaferon is the only one suitable for secondary as well
4. I was afraid that if the injection was only weekly I would do it at the weekend to avoid the side effects interfering with work and would spoil whatever free time I had.
5. With 4 insulin injections a day, 1 alternate days seemed a doddle.
When I started on Betaferon I was so tired, I was coming home from work to lie on the settee til my husband got home and made tea. I’d spend most of the weekend in bed, building up strength for work on Monday. I was planning to try and take Wednesdays off to restore some sort of work life balance but the Betaferon had an immediate and dramatic effect and gave me my life back. I can’t say how it works for anyone else but it is worth considering.


aardvark
6 years ago

Hi Sarah

I have just started on Copaxone (today’s will be my 15th injection). I too was erring towards Avonex because of the frequency of injections, but on hearing of my desire to start a family some time soon, my Neurologist steered me towards Copaxone (don’t know why, I’ll ask him next time I see him).

I’m using the Autoject, and I haven’t yet suffered with any of skin-site reactions that my MS Liaison Nurse (big shout out to Jim!) told me that were a possibility, although it’s obviously very early days. I’ve also not encountered any of the side effects that he warned me about – frankly after he’d done his spiel I was expecting near death experiences.

All I am getting is mild discomfort immediately after the injection, rather like an exotic insect bite, which is completely gone within 15 minutes. As yet, I have no marks showing 24 hours later.

In contrast to some other people on here, I’m happiest injecting into my arms. I have very muscly legs and buttocks, so I find it very difficult to find an area to inject into that is fatty. Obviously, as you’ve no doubt seen all over MS sites, YMMV.

On a completely different note – I just want to say how delighted I am to have found this website. Like many recent sign-ups, I came here after reading about George Pepper on the BBC website and I’m already feeling part of the community. Props to Jess-Monster for sending me my first friend request and making me feel at home…

Mark


Sarah_T
6 years ago

Hi Mark,
I’m glad you are getting on with Copaxone. I think it is definitely the one I will go for. Being steered to it because you want to start a family soon is interesting. I was thinking the same but have put it off for now. Do let me know what he says when you next see him.

By the way – your photo doesn’t match your personality in your profile at all! You seem like a positive person but you look so unhappy in your photo. No offence meant by that. 🙂
Sarah


aardvark
6 years ago

You’re right about the photo! It was the only one at hand when I wrote my profile. Hope you like the new one 🙂


Sarah_T
6 years ago

Aw what a cutie! :o)


tracy
6 years ago

you guys are funny!
i went with Copaxone as well, i am three months in and i get red lumps and itchy. but i stick to the hips and belly as well, good fat there 🙂 the nurse told me soon i won’t even notice where i injected!


maryklou
6 years ago

hi sarah i was diagnosed with ms about 4 years ago and when i had to pick one of the dmd’s it took me a while. They all sounded bad to be honest but in the end i went with Avonex as it was only once a week and i thought the less days i have to inject the better. Even though the side effects for Avonex sounded the worst my doctor & nurse told me they would only be bad for the first couple of months, Iv been injecting Avonex for 3 years now and the side effects r still just as bad as they were the first time i injected 🙁 Iv complained to my doctor repeatedly and so at my last appointment he thought it would be a good idea to change me to Copaxone. I haven’t started it yet as they still have to go through my blood tests but hopefully i will be in a couple of months. The site reactions and lumps that people have been talking about don’t sound too nice but anything is better than the Avonex side effects. Hope the injection you pick works well with you.

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