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1st time injecting-what DMD would you recommend?

hi. saw my ms nurse today and been given lots of info to read up about the different DMD to take…just wanted to no what others are using and if anyone would recommond a particular drug? Im not keen on the idea of injecting so obviously the once a week injecting appeals but the idea of having to inject into muscle sounds painful-isit? ouch!!!

Also once i tell them nurse what i decide roughly how long till i have the drugs do you think?

thanks

coleen

Hello Coleen, I have just woken up on the sofa so I will answer better in the morning :confused: My chosen DMD is Avonex, the once a week into the muscle drug you are thinking of. It was my first time today. The injection comes in a pre-filled pen, you don’t see the needle and I can honestly say that the needle didn’t hurt at all (honest!!) If you would like to ask me anything and I mean anything about the drug etc, please don’t hesitate to ask. I would be happy to help. Sam x

Hi Coleen, have you looked on the msdecisions website? If not then have a gander as it’s worth it’s weight in gold when trying to choose a dmd. The dmd’s are fairly similar so your lifestyle plays quite a big part of the drug you choose. I’m about to embark on Avonex myself having already tried Betaferon and Copaxone and I’m not looking forward to injecting into the muscle at all, but I’m going for it! The time span of how long you’ll have to wait for the drugs can vary as your application goes to your local PCT for funding. I know it’s not called PCT now, but I can’t remember the name. Good luck with whatever you choose. xx

The MSdecisions site is great, there are videos showing people injecting the different types which I found really useful.

I have just had to choose myself, and went for Rebismart - I didn’t want to do the intermuscular one and don’t really mind doing it three times a week (although I do hope I don’t have to feel like I have flu three times a week forever!). I don’t have to see the needle with rebismart and it’s a doddle to use.

I went for Copaxone first time because I didn’t want to risk flu side effects as I was a serious martial artist and didn’t want to miss training. When that stopped working so well, I chose the higher dose of Rebif (Rebif44) because it had brilliant results in the trial with Campath and if I was going to risk the flu, I may as well go for the one with the best data. I was happy with Copaxone. Injecting was easy and, because it was every day, it was soon just part of my getting up routine. I injected manually because I didn’t really see the point of the autoinjector - it didn’t make it any easier; harder if anything. (They may have changed it by now.) Rebif is working really well for me. I’ve been unlucky with flu, but it’s worn off now and, most importantly, no relapses for nearly two years :slight_smile: The Rebismart is brilliant and the needles are thinner than Copaxone’s so I rarely even feel them go in. Do check out the msdecisions website. And don’t worry about making the “right” choice because there isn’t one! Just pick the one that you think will suit you best. If it doesn’t work out, for whatever reason, you can always switch. Time to getting the drugs varies a lot. There’s a lot of paperwork involved so 4 weeks is very quick. It’s probably more normal for it to take a couple of months or more. Karen x

Hi, I started on rebif last month, and to be honest I chose it because of the Rebi smart device which is kind of idiot proof, it does have side effects but so do they all, and I hope they will get better in time! Watch the videos on the ms decisions site they are really helpful. One thing though I’ve just had a blood test after a month and apparently I have low neutro’s which have something to do with white blood cells they will test again in a month, I’m not sure what that means. I would think carefully if you have had depression or think you are depressed as it is a side effect that I have been advised about. I was really scared at first but the device is so simple to use I manage that part really well it’s afterwards that is the hard part. Take care Susan

Hi I started on avonex last sept and was dreading it!!!..but it was no were near as bad as the thought of it!..I take 2 ibuprofen and 1 paracetamol half an hour before and then 4 hourly and luckily have never suffered the flu like symptoms only headaches if I miss my painkillers!..a bit of advice would be not to press the pen too hard against your leg as my husband does mine as I’m a wimp!! And I was having problems with bruising and swelling but wd figured out if was because he was pressing the pen into my leg too hard! Maybe purposely lol!!..and to be honest it doesn’t hurt just a little sting you soon get used to it I just need to do it myself now!!..good luck and if you want to ask me any questions ill try to help…Emma x

Hello,

After much thought i went for avonex. I found that the ms decisions site is a little out of date with the auto-injectors. Avonex now comes in a pen (avonex pen). The needle is now tiny only 2cm long, the website shows the very old auto injector that scared me a bit. But which ever you choose do a search for the auto injector that goes with it.

Its not an easy choice so goodluck.

Darren

thanks everyone. The one thing i read on that ms decisions website was that copaxone was the only drug that didnt show any evidence of reducing the developement of disability compared to all the others that do so i kinda thought cause of only that reason not to use that- is this right? also does avonex hurt more than others cause of injecting into the muscle? i would use that cause the once a week but i really have this fear its going to hurt so much??? isit worse than getting a blood test?? or even isit more like getting ur ears pierced?(thats all i can compare to lol)

xx

HI - i have just been diagnosed this week and am awaiting an appointment with the MS nurses to discuss treatment plans so the above advice is very helpful as i have no idea what to do!!! I have just been prescribed Vit d and b but not sure why Vit B? i know what the Vit D is for as consultant explained but not the Vit B. I have contacted the HR dept where i work and they are setting up an appointment with a well work team who discuss your wroking environment etc with you and offer support which is positive, but not looking forward to injections at all!!

Thanks

Fi

I saw my MS nurse on 18th April, decided on Avonex and have first injection on 9th May, I’ll let you know what happens!

Hi, I’ve been using Avonex since July 2012. I was scared to death of the thought of injecting myself at first! But it’s now just part of my Wednesday routine. Most of the time the injection is painless and even when it isn’t it’s only a stinging sensation. Nothing terrible!! A diabetic nurse who I work with told me to make sure I stick to the midline of the thigh and outwards. Avoid the soft part of the thigh. Don’t take any notice of the diagram that comes with the starter pack, the injection area is much smaller.

The last time I saw my MS nurse she told me that trials have just finished that proves that Avonex is just as effective being injected once a month and she thought that that fortnightly injections might be introduced in the near future. So hooray to that!!

To be honest, the actual injection is nothing, the flu side effects were pretty awful to start with but regular paracetamol mean that it’s not too bad now.

Lynne

thanks for everyones thoughts and experiences…it really helps in making a decision…i think im going to go with avonex as itis only once a week so wont effect daily life much…i have worked myself up to the idea of it hurting a bit but i no its something will get use to and maby the first few times might need to get my mum to do it(shes a nurse neway) cause id be afraid im freak out and make it worse than itis…but thanks so much.xx

Hi good plan getting you mum to do it if your anxious as its one less thing to worry about and honestly its only a little sting but remember your painkillers before and every 4 hrs as a precaution I’ve been fine and was dreading it so am sure you’ll find if fine too!..good luck Emma x