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Trying to decide on DMD'S - what's your experience?

Hi been trying to find out about DMDs. I think it sounds as if it is a personal choice in terms of what side effects you least fancy experiencing! Just wondered what other people chose and why? I am still waiting to see MS nurse and I guess she will talk things through with me but was trying to get an idea of which way to go (assuming there is a choice) before I speak to her. Rebif and avonex both seem to have possible flu like symptoms although they seem to last longer with avonex, but rebif seems to have more serious side effect possibilities…I am sooo confused. Any help grrrrreatly appreciated ! : ) Mish x

Hi

I chose Betaferon about eight years ago, and would do the same again. In fact I have turned down Tysabri to stay on it for now. It’s worked really well, reducing relapses from every couple of months to less than one a year, and even then it’s all over sooner so I can get back to work.

It’s injected under the skin every other day and only takes seconds to do. I had flu symptoms for the first six weeks, for a few hours after injecting, but this was totaly controlled with paracetamol or similar so I never noticed them. Then one day I realised I hadn’t taken any paracetamol and never needed them again.

The MS Nurse will show you how to do the injections, and they’re delivered to your home or somewhere convenient for you. Mine come every three months with a new sharps bin, and they take away the old full one.

I think that’s about it, but if there’s anything else, please feel free to ask.

Good luck with whatever you decide.

Hi Val Thank you for your reply. I’m hopeless at choosing what cream cake to have, let alone something this important. Just thought hearing how others have got on with their choices might help…so thank you. : )

You’re welcome. There’s for and against all of them but they all do roughly the same thing so you can’t go far wrong. And you can always change if your first choice doesn’t work out.

Hi Val I have RRMS and started on Copaxone in May this year, I inject everyday with an auto pen. initially I was very reluctant to take DMD’s however after much deliberation and 2 bouts of the flu at the tail end of last year that completely floored me I decided that I wanted to try and minimise future relapses and deterioration as much as possible, I also have a very active 3 year old and need to keep on my toes as much as possible :slight_smile: Initially when starting the injections they sting a bit like a bee sting but this soon subsides with 10 mins, I tend to do my jag then occupy myself with the washing up etc to take my mind off it … How exciting. The injection site tends to go red for a while and sometimes there is a little swelling again like a bee sting but soon subsides although the redness can stay for a few days, I also get some lumps under the skin, a bit like a tiny egg (sorry only way I can describe it) but these do subside over a few days and are very rarely noticeable to anyone else. Massaging them helps. I was absolutely terrified about starting the injections and thought that the injection sites would look awful however 3 months in and all going well and pleased at making the decision to start on it, I have just had a viral infection which knocked me for six however 4 days in and the numbness and tingling has almost completely gone and my energy levels are increasing greatly everyday… Now is that down to the Copaxone, I couldn’t say but what I do know is that it usually takes me 2-3 weeks to recover from a minor relapse so heres hoping it is.

i started copaxone in 2009 just after my dx.

as tigger said, there are little lumps and sometimes sting feelings. but these aren’t too bad. the autoject pen means that you don’t handle the syringe (good for cowards ike me)

i went for my annual appointment with my ms specialist neuro on monday. i was thinking of coming off copaxone because the injections have started hurting. however my results on the peg board test and the times walk were excellent. my neuro was beaming! i told him that the injections have started to hurt just this year and he told me that they have been doing a trial using a double dose of copaxone but only 3 x per week. he has promised to get me on this asap.

whatever you decide, i wish you good luck

carole x

i just started rebif on Monday 30th July, it’s three times a week and the only side effect i have had is headaches but painkillers help me get on with my day. Have you looked on msdecisions.co.uk? It is a website that has no bias on any of the drugs. With my rebif i got the rebismart which all i have to do it insert the needle and push a button as it is an electronic device.

Hi, thank you for your replies.Still trying to decide between multi bee stings or flu and headaches…hmmmm.

I have had a look at the msdecisions website which had some great information. I have never been worried about needles, thankfully, so copoxane is a possibility. Rebif is possibly the other one I might go for. The flu reaction (if you get that) seems like it could be over by morning if you inject at night, from what I can find avonex ‘flu’ can last upto 36 hours although is less likely to cause other problems. Still umming…

I started on Extavia interferon beta last year. I didn’t get a choice on what type, here everyone is started on Extavia and if it doesn’t suit you can change but you have to try it first.

I had flu type side effects for a week but hardly noticed them, took ibuprofen and was fine. Don’t notice anything at all now, and self injecting is fine, can’t pretend I love it, but its more the hassle of remembering and not being able to be spontaneous etc that bugs me, its actually fine.

Hi

I started rebif in 2002 & had relapses every 6-9 months.

Due to kidney problems I came off it in 2008.

I started copaxone in 2009 and have had just one relapse since then so it seems to work ok.

I use the auto injector with no side effects.

As others have said it is a personal decision.

all the best

Neil

ps

If you are buying the cream cakes then mines a chocolate eclair :wink:

I’ve been on both Copaxone and Rebif.

I was very happy on Copaxone. It’s dead easy to inject, most people find that there are no side effects apart from some stinging, redness and the odd lump at the injection sites and, because it’s every day, it just becomes part of your getting up routine (or going to bed routine, but I didn’t risk that in case I forgot!). It kept me pretty much relapse-free for 3.5 years (just the odd brief and mild blip). I came off it because of one or two new lesions and the start of a nasty relapse.

I’ve been on Rebif 44 for a year now. If anything, it is easier to inject than Copaxone. The needle is thinner and I don’t get any stinging or lumps, just red blotches. (I use the Rebismart, a very snazzy autoinjector thing. I manually injected Copaxone - didn’t like the autoinjector.) I do however get the “flu-like” side effects. It was pretty nasty in the beginning, but paracetamol keeps things under control these days. I’ve been really unlucky though - most people find the flu wears off long before mine has and some don’t get it at all. The reason I chose Rebif is basically if I had to have the flu, I may as well have the best injectable DMD - and that’s Rebif44, according to recent research. I’m very happy with it overall and am feeling better than I have in yonks - it’s like Rebif’s actually helping me to improve, not just stay in remission!

We are all different so don’t be swayed too much by others’ experiences. Pick whatever you think will suit you best. There really is no “right” decision.

Karen x

I started on rebif August 11 and used the rebismart auto injector which was great. At first it was fine but as monthes passed I was feeling really lousy,really bad headaches and my legs felt stiffer and stiffer. So in June my MS nurse suggested I have a break from it, which I am currently on and I feel so much better. Since stopping I have had no headaches or any other relapse symptoms, I was having 3-4 a week whilst on it and seemed to be taking paracetemol all the time to try and prevent the flu symptoms or help with the headaches. I now have to decide whether to persevere with the rebif or try a different DMD or not bother with any DMDs. My nurse wants me to stay on a DMD and has suggested I try copaxone. I see her next week to discuss but am thinking I will probably give copaxone a go as I don’t want to get any more side effects from rebif and the other DMDs are interferons too so I guess I would probably get the same headaches with them. Oh decisions decisions!!!

Cathy

Thank you all for replying. I know I will have to make my mind up at some point, but it is good to hear others experience of different DMDs. I guess until you try one you just don’t know how it will effect you. Remembering to take it will be tricky. Working in a school I am out of routine on holidays at the moment, not that I’m complaining : ) but keep forgetting my mid day meds by a couple or so hours. I think I will just have to organise myself better! It sounds like the benefs are worth the side effects for you karen. I am heading towards rebif as there seems to be more info to suggest it can help to reduce the severity of a relapse more. Not being able to write properly since March has been a problem and is quite a big consideration. At least I can scribble something down at the moment…just have to challenge the children to make their writing better…not to difficult a challenge to be honest! Lol Decisions, decisions indeed cathy and I am so bad at making them. It’s a bit of a family joke the number of times I change my mind and take things back to the shop…I’ll have to stick with my choice this time though to give it a fair chance. Good luck making your decision cathy. Thank you Mish x PS Neil choc eclairs on the shopping list! : )

Hey Mish - love your name For me I am on 22 rebif would prefer to be on 44 will need to talk to neuro about that Rebismart injector. Inject mon, wed and Friday - it becomes a habit. Stings a little - I tend to learn where to inject to minimise stinginess. No injection site marks unless I inject my legs - so I don’t. No side effects I am lucky Bupa deliver it monthly at first now three monthly to my GP practice who store it in their fridge. Bupa text me day before delivery as a reminder. Needs to be stored in fridge. Except current vial can be kept out of fridge. Take care my cranky old fridge froze it once - no problems getting new unfrozen supply. Now have fridge thermometer Bupa also deliver sharps I.e needles bin and needles Ms nurse should take you through first injection Travel - I have a GP letter to take me through security that i carry liquid meds and needles. I let airline know before I travel that I have liquid meds and needles. They say let checking staff know and cabin crew know too. Never been stopped at security. Obviously your decision but I hope this helps Hugs Min xx

I set a reminder in my phones calendar to beep every second night to remind me to inject, and another for my meds.

Hi Min thank you for your reply and useful tips. I have a fridge thermometer, had just set up a cake company (to go with other part time job) before main relapse, not sure what to do about that now…at least the thermometer may come in useful for something! Lol X