Hi I know theres the m.s decision tool and I have used that but still am questioning the result as I have reasons also for wanting the one it has put in the last choices for me… It says avonex, copaxone then rebif and another couple. So want I am asking is peoples personal experience: Which DMD did you choose and why How has it worked for you, ie relapse rate, actual wellbeing How it fits into daily life … I have a three year old and work How bad were the side effects. I have asked kind of these questions before but thought id post as a definite thread to get the replies altogether! Thanks guys x x x
I know its a hard choice, but if you are talking about the page that comes up after you have scored everything out of ten. That has a show button under the drug name to see more, its in alphabetical order. You have to click the show button to see the negatives compared to what you have answered.
The first time i took avonex it was when the nurse came round to show me how to take it. I was fine untill the early hours of the next morning with the full flu symptoms. That was in jan this year and now i just get a little headache and slight chills all taken care by painkillers
Copaxone - chosen for “less side effects” and thought to be easier to integrate a daily injection into a daily routine.
Yes it was easier.
Have had no detectable side effects.
Relapse rate massively reduced. Like: 3 and a mild one in six months before starting, to 2 and a mild one in 21 months since.
I fit it in between breakfast and the shower, but could just as easily be fitted in at night.
Remember that this is just one person’s experience. Ask rizzo - Karen has used both Copaxone and Rebif.
I was put on a dmd really quickly as i had 2 relapses back to back at the time i was diagnosed. I had just given birth to my second child.
I had to choose quickly and didn’t have the time to research into them like yourself. I had a quick chat to my neuro. I was told…
Copaxone was every day - less side effects but more possiblity to have injection site reactions. (decided as its every day that i might have sore skin)
Rebif - 3 times a week but possibility of flu side effects. Smaller needle and now have the rebismart device to make it easier. (was not available when i started though)
Avonex - once a week but needs to be injected into muscle so uses a longer needle. (the needle put me off but i believe they have improved this now)
Betaferon - needed to be mixed by yourself. (couldn’t be bothered to do the mixing)
I was told that injecting little and often was better than one injection a week (i can’t remember who told me this though now - sorry!) - neuro or nurse?
I chose rebif - been on it now for over 7 years. I did not get the flu side effects but i know a lot of people do get them. 3 injections a week suited me best as i had a newborn baby and a 5yr old. I did not get the flu symptoms but i did get some headaches at first which i just took ibuprofen for.
I have not had a relapse since so i am not much different now than when i had my diagnosis. Even though i have not relapsed i do however get some ms symptoms. I suffer with fatigue and anxiety. I have had some balance/vertigo symptoms.
I know when you are faced with this decision it is difficult but remember our experiences are individual. We all react differently so until you try one - you will not know how it will work for you.
Pick one that suits your lifestyle the best. They will change you to something else if it doesn’t suit you.
The important thing is that you are trying to slow down relapses in frequency/severity. They are ALL proven to do this.
^Just to point out the avonex pen needle is 1.5cm long
Thankyou Darren for clearing that up. I was just telling Lisalou my personal experience as she requested.
When i started the dmd’s Avonex needle was a ‘whopper!’.
I would also like to say that in recent trials that when avonex and rebif were compared - rebif came out on top. I don’t have the data for this but i know Rizzo has (thats who i got this information from!)
i went on copaxone straight after diagnosis in 2008
its been great. injection site reaction are temporary and can be minimised by moisturing your skin.
although its daily jabs, they’re dead easy to fit into your day
On the msdecisions site the auto injector vid for avonex is awful, a huge needle being used on a crossbow auto injector nasty. Their has been a few trials that show one dmd better than another. But without knowing what was going to happen anyway without dmd’s i find them hard to trust fully.
Which DMD did you choose and why:
I didn’t get to choose, I was given Extavia, which is a beta interferon like Rebif
How has it worked for you, ie relapse rate, actual well being
Hard to tell, but I’ve not had a relapse in the 18 mths since I started on it.
How it fits into daily life … I have a three year old and work
Fits in fine, I have a reminder on my phone for every second evening, I do it in when I put my eldest to bed around 8.30, it takes about 2 mins. I have two small kids and the injections havent interfered with family life at all.
How bad were the side effect
I have very mild muscle ache in my back a few hours after I inject, I didn’t notice at first at all, until I started injecting in the morning and had to switch back to evenings. I rarely notice it though as I sleep through it, and I never take pain killers for it or anything.
Copaxone, chosen because no “flu”.
Relapse rate in the 12 months prior to starting: about 4/5, only one major one I think (my memory sucks). Relapse rate on Copaxone: two minor “blips” (cognitive issues lasting a couple of weeks) and only one new lesion in 3.5 years. Unfortunately, started a major relapse in April 2010, taken off Copaxone.
As far as fitting in with lifestyle goes, I would think that Copaxone is the best option available. You just do an injection as part of your getting up / going to bed routine every day and it’s done. Dead easy. I got red blotches after injecting and the odd bruise on my legs, but apart from one time when I managed to do something wrong and caused a burn like thing on my stomach that’s left a scar (I have never heard of anyone else ever doing this), it was absolutely fine.
Rebif 44mcg (the stronger version). Chosen because, if I had to risk getting “flu”, I may as well opt for the one with the best data (judged mainly from the Campath comparison trial where Rebif44 resulted in a more than 40% reduction in relapse rates, and by the fact that NICE complained that Gilenya was trialled against Avonex and that Rebif would have been a tougher comparison).
Relapse rate in the 12 months prior to starting: about 5, but arguably one 12 month long relapse Relapse rate since starting: none (I had one very mild bout of vertigo not long after I started, but it’s not fair to count this).
Fitting in with lifestyle: fine. Because it’s 3 times a week, I do tend to forget sometimes so I deliberately try to inject in the morning so I have longer to remember! I occasionally have to change days to take account of forgetting, but generally it’s fine. The Rebismart is very good and I’d recommend it. The needles are finer than Copaxone’s so the injections hurt less too. I also never get any stinging or tingling afterwards when I did with Copaxone. I do however get worse red blotches with Rebif: they are bigger and last longer. These have eased off now, but were pretty awful in the earlier months (I would have more than 20 at one time). I have been unlucky with the “flu”. Everything was fine until I went up to the 44mcg dose and, if I’d stayed on 22mcg (which a lot of people do), I would have had no problem. Unfortunately, I can’t take ibuprofen which is supposed to work better at counteracting the “flu” and so I have had to rely on paracetamol, which for the first year or so, wasn’t enough to to do much more than take the edge off. The side effects are now no problem as long as I take about 6 paracetamol (3 x 2 pills at 4 hourly intervals), but they are getting easier all the time. I have never been able to sleep through the side effects although I know most people can. Please note that I am very sensitive to meds - it took me 4 weeks to get up to just 100mg of pregabalin a day (about the same as 600mg of gabapentin) because of side effects!
There’s nothing between them as far as travelling goes - I’ve travelled with both. They can both stay out of the fridge at room temperature for up to 30 days, so nothing between them in that either. I suppose that the Rebif needle cartridges are moderately “safer” than Copaxone syringes when considering a child, but the chances of a child mucking about with needles that are kept in a safe place is pretty low.
One thing that may be important to you: there are no data to suggest that Copaxone helps with progression or with cognitive decline. It appears that interferon works better for these. However, if you are after something to keep a lid on relapses, then I would think that there is nothing between Copaxone and Rebif22. Rebif44 may have the edge, but it is impossible to know this on an individual basis. Someone may find that Copaxone stops all their relapses and Rebif does nothing. Someone else may find the opposite. Someone else may find that neither work. Etc. That’s why there really is no “right” answer. All we can do is pick the one that we think will suit us best, and hope that it works out well. If it doesn’t, then there are other options.
Fwiw, if I had to choose again and knew everything I do now, I would have gone with Rebif44 first time round. Even with the “flu”.
I take Rebif44 and although I still have flu side effects, I take the injection at around 7pm with Ibuprofen and just sleep through it. I did have headaches when I first started but don’t get those anymore. I haven’t had a significant relapse since taking it, however I do still get bad days when I feel fatigued and get sensory symptoms like pins and needles and numbness. I have two young children and work as well so occasionally forget and have to alter injection days. It’s no real problem though. I do get bruises where I have injected and they can itch, however I haven’t had any infections. At the end of the day, you’ll just have to bite the bullet and go with your gut instincts. If it doesn’t work, or you don’t get on with it, you can always try something else.
Thanks everybody. I am edging towards rebif…few reasons really. One it seems to be the one that people end up on when one fails and this succeeds. Also despite side effects people report these are variable and can be controlled. Also I am a needle phobic, I pass out …to be honest don’t even have to see a needle and I’m on the floor. I think however o stand a better chance of this if the procedure is less needle like and I believe the rebi smart is less needle like. One side effect I’m worried about is depression…I had a bit of post natal althought it was more anxiety I think and put down to my traumatic childbirth experience not actually being a new mom. One last question will I still be able to have a social life, I.e go out on a weekend for a meal…when would I do the injection if it was due that night and could I still drink if I’m gonna be injecting that night? I might be better injecting after a drink actually haha x
A vote for Betaferon here! Every other day, under the skin and I use an Autoject so I never see the needle going in. I also had a young son and worked when I started injecting - didn’t make any difference at all. I still work in the same job.
Don’t be misled by having to mix it - it’s actually a kit and does it itself. Dead easy and takes seconds when I go to bed. Side effects were flu symptoms for a few hours after injecting and were totally controlled with paracetamol and went after a few weeks.
Been on it about 10 years and have turned down Tysabri and Gilenya to stay on it as it works so well. Before I was relapsing every couple of months, now it’s less than one a year and it’s over much quicker and I’m back at work in a week or so.
Good luck with your decision.
Thanks val thats really reassuring. Which interferon is it? Is it extavia? X
I had to look that up… apparently they’re both intereron beta-1b but I don’t know why the different name.
Yeah I think the only difference is yours, extavia is every other day and rebif is three times a week. X
Yeah I think the only difference is yours, extavia is every other day and rebif is three times a week. X
One last question will I still be able to have a social life, I.e go out on a weekend for a meal…when would I do the injection if it was due that night and could I still drink if I’m gonna be injecting that night? I might be better injecting after a drink actually haha x
Of course you can still have a social life! Just do the injection when it suits you. It doesn’t have to be timed to the minute. If I’m out for the evening I do it before I go so I don’t forget later. Or if I’m out for the day I might do it in the morning before I go…it doesn’t matter. I had a weekend away last summer and did the injection before I went on Friday morning, then the next one when I got home on Sunday night so I didn’t have to take all the stuff with me.
And you can drink tne same as ever, it has no effect on the injection at all. The thing is, once you get going, you won’t think of things like this, you’ll just find yourself doing it when it suits you. And if you forget one, it doesn’t seem to matter.
Thank you. Thats really reassuring. X x x