Since my RRMS became more active last year, my consultant offered me DMD’s and sent me away with DVD’s about Copaxone, Rebif and Avonex. I am really struggling emotionally with my MS at the moment and have spent most of the new year in hospital in relapse. I am seeing my neurologist tomorrow morning and am supposed to have decided which DMD I wnt to try but I just can’t make a decision. At the moment I have had to go back to work as I only get SSP and can’t afford any longer off work and the pain/fatigue is killing me even though Im only working very part time. I have 2 small children and finding that i am totally run off my feet. My husband doesn’t help very much. I am worried about coping with potential flu like symptoms of Rebif or Avonex, and having the time to take Copaxone. I watched all the dvd’s and they all showed people taking plenty of time to sit down and relax before giving their injection and I just can’t see me with that happening off an evening.
Looking for any REAL advice from REAL people who have been on any of these treatments. i know the response varies by individuals so what happens for one will be different for another but would just like to hear from anyone who has experience of DMD’s
I started off on Rebif 44 and then changed to Copaxone when it stopped working for me, so I’ve experienced both.
When I started Rebif, I was in the middle of a relapse and felt really rough so didn’t notice any flu like symptoms, if I did get them. I did the injection in the evening and took 2 ibrupofen just before, just in case (so you sleep through the worst of the side effects). I started with the auto injector (which has changed now and easier to use), the noise would make me jump and pull the needle out, so I changed to manual injections. I would get red lumps at the injection site, which would last about a week at first but soon settled down. Unfortunately for me Rebif stopped working after a couple of years so I changed to Copaxone.
Changing to injecting everyday was no big deal (still have to use my phone reminders!). At first I really struggled with site reactions as I was apparently a bit allergic to it. I dealt with that by taking a 1-a-day antihistamine for about 6 weeks. The needle is very slightly thicker for Copaxone so it also stung a bit more than Rebif (again I manually inject as the auto injector makes me jump…I wish they’d make a new one like Rebif did). Saying all of that, once my body was used to it all, it settled down well and I’m still on it after about 4 years.
Once you get into a routine, your injection will take a couple of mins at the most, whatever you choose (plus a bit of warming up time, I pop it into my bra to warm it up a bit and keep my hands free).
Hope I’ve not confused you even more now and that whatever you choose works without too much hassle.
Like Sue I started on rebif.At first it went well,yes some skin reactions where I injected using rebismart device. After I had titrated up to full dose I started getting the flu symptoms, shivering/sweating if I forgot to take paracetemol. I also started getting bad headaches. After 9 months I decided to change DMD to copaxone. I don’t get any headaches with this medication but do get site reactions where I inject. Mainly red marks and lumpy swellings under the skin which I have to massage away-they do go but tend to last 3-6 days. I generally feel better on this DMD. I tend to inject at night before bed.
Hope you make your decision without too much stress and remember you can change meds or stop when you want to. Don’t feel rushed into a decision-I took a year from my MS nurse mentioning DMDs to actually deciding which one to try.
Thanks for the replies… I’ve looked on the MS decisions site tonight too and have decided that I have too many questions to make a decision tomorrow (unless the consultant and MS nurse can clear up all my queries) - in addition to that, I’m not feeling in the best place to make a long term commitment decision.
You both mentioned site reactions after copaxone - do the lumpy / red areas settle down at all? When I had my last 2 relapses they were both really disabling so I had to have a daily injection in my tummy for anticlotting as I was so immobile and after only 2 weeks of being injected by nurses my tummy was black/blue and lumpy! I’m highly unlikely to wear a bikini ever again after recent weight gain after steroids and increased gabapentin but don’t really want to feel worse about my body than I already do. (I know that sounds really vain)
I’ve done a bit more research this evening and am not sure now if I will be offered Interferon based DMD’s as I have a history of depression so guess it might be copaxone or nowt. my MS has become much more active so Tysabri has also been mentioned but the side effects are a bit too scary!
I started out on Betaferon but hated it - I felt shocking on it, and it didn’t do anything to reduce the relapses. I switched to Rebif and found it so much better. There were still a few side effects, but theylessened after the first couple of weeks. I also found that ibuprofen the morning after did a quick job at getting me back to feelng normal (for some reason ibuprofen was much better than paracetamol). But best of all was that it dramatically reduced the number of relapses.
The important thing to remember with all of this though is that it doesn’t have to be a life-long commitment. If you don’t get on with one, you can always ask to switch to another one instead.
I hope you get all the support you need though - physical, financial, & emotional.
Hi mad cat lady I don’t know if this helps at all, but I have just started on Rebif…4th injection tonight. All is going well. I have posted a fair bit on “newly diagnosed” forum under “Rebif or copaxone thoughts please”.
Hi Mad Cat Lady, - I’ve been on Rebif since 2000 and never had the flu side effects - well just once, when I started on the new formulation in 2009 and they went within a week.
It’s been brilliant. A real quality-of-life saver. Yes, I get huge red splodges where I inject, but it’s a doddle - the first injection is the worst.
I hope you have good results with whatever you choose,
I started on avonex at the start of the year. I chose it because it was only once a week and how its made. But on avonex you do get the full weekly dose in one go. Which does seem to me to make the side effects worse. But only doing it once a week you get more control over what days the side effects hit you.
I narrowed down the choices too avonex and rebif. Then made the choice with the ms nurse, after getting more info.
Its a hard choice, but you are not stuck with your first choice if it doesn’t work for you.
I started on Copaxone and then switched to Rebif after 4 years when Copaxone wasn’t working as well. I manually injected Copaxone and use the Rebismart for Rebif.
First thing to say may be the most important judging by your comments - the videos are nothing like reality! I do my injections in about 10 seconds, in between washing my hands and brushing my teeth. Dead easy and no faffing about at all.
I get red splodges from my Rebif injections. They come up a day or two after my injection and gradually fade over two-three weeks.
I got red splodges from my Copaxone injections too. They came up quicker, but faded quicker too (in about a week). I got more bruises with Copaxone (possibly because I was manually injecting?). I used to get temporary lumps with Copaxone too, but just small ones and nothing that others would notice I don’t think.
As far as flu goes, it varies massively and most people find it wears off. It also seems to depend on the dose of Rebif. You titrate up to whatever dose you are prescribed, starting on 8.8mcg, then 22mcg and then 44mcg, if that’s your dose. I was absolutely fine on 8.8 and only needed the occasional paracetamol on 22 so the reaction at 44 surprised me. But I’ve been unlucky - the first six/seven months were pretty awful and I’m still taking a lot of paracetamol on Rebif days now, 19 months after starting, although as long as I take them I’m fine these days. Ibuprofen is supposedly better than paracetamol, but I can’t take it - so I may not have had such a hard time if I’d been able to take ibuprofen. Even though my side effects were pretty bad, I don’t think I would have taken a day off work if I’d still been working - it was bad, but not “I have to be in bed” bad.
About the site reactions… As I said I found the site reactions with Copaxone far worse than the ones with Rebif. I was a bit allergic to it would really hurt and then swell up and bruise, the lump and bruise would last more than a week at first, so I was running out of injection sites pretty quickly. I started taking a 1-a-day antihistamine which helped a lot. The lump would still be there but not as bad as before. After about 6 weeks, once my body had got used to it, I was able to stop with the antihistamines. It did take a about 3 months for the site reactions to settle down more but they were no big deal by then. Afer about 18 months I noticed that I was getting indentations in my skin, which is apparently quite common. I was then told to change to injecting every other day to give my skin time to recover more. I did that for about 6 months but then got told to start injecting everyday again as I was a bit up and down with symptoms. That was about 9 months ago and since then I’ve been inecting everyday and not had any problems. The lump tends to last a few hours…I can feel under the skin where I’ve done an injection, for a couple of days but can’t see anything.
Over all I think it just takes a bit of time for your body to get used to the injections, whichever ones you have. The most important thing I’ve found it to make sure your skin is in good condition and to massage the area well, the next day as this helps break up the lump (if you know what I mean).
If you have any specific questions, please feel free to PM me. Most imporantly try to to stress too much about it, once you’ve done the first one, you’ll wonder what all the fuss was about.
Honestly, it doesn’t much matter which one you choose.
In terms of effectiveness, they’re all much of a muchness. They all involve you sticking needles in yourself, which is an outrageous thing for a person to be expected to do, but you’ll manage. They all have potential side effects, but not everyone gets those, and you will only find out when you try, so there is absolutely no point losing sleep worrying about which one you should go for. I think you might as well write the names on little pieces of paper and draw one out of a hat.
OK, I’m exaggerating to make a point, and the point I am making is that this decision is nowhere near a big a deal as you feel it is. MS takes so much of our scope for decision making away - I don’t remember being consulted about whether I wanted to have MS or not, for instance, and I don’t suppose you do either. MS affects every aspect of the biggest things in our lives, family and relationships, careers, hopes and fears for the future, everything. And there is pretty much damn all we can do about that. So what can happen is that a person can really struggle with making a decision when, for once, she actually does have any filtered word-ing choice in the matter: for instance, when choosing a first-line DMD.
The important thing is that you get on one of them. Try not to worry too much about which one.
For what it’s worth, I was on Avonex for many years, and it did a good job for the first 7or 8 of them, which isn’t bad going. Avonex was what was offered, so that’s what I got - things were easier in those days in some ways! I have no doubt that, had I been offered a choice, I would have been on the rack fretting about it too, so I really do feel for you.
As far as the injecting routine goes it really does take only a few seconds. I did it as part of my getting ready for bed routine and all up it took me a maximum of a minute. If you have been taking anti-clotting injections it takes the same amount of time as that… The needle is almost identical. I have been on Clexane anti-clotting injections recently too and trust me the bruises with Clexane are a zillion, squillion, trillion times worse than anything you’ll get on any of the DMDs
Copaxone does sting quite a bit just after injecting but I found if you kept a weeks supply out of the fridge at a time so you always had some at room temperature it wasn’t as bad and I warmed my tummy with a wheat bag before injecting. It can cause a lump under the skin whcih can take about a week to settle down and you can get a welt at the injection site which usually lasts up to a few days but as others have said taking an antihistamine helps with it. The skin reactions do tend to ease off after a few months.
I can’t really comment on the Interferons because I wasn’t on them long enough to know as I had an allergic reaction fairly well immediately after starting but I gather from most people that the site reactions tend to be less than with Copaxone.
The other thing to remember is that if you choose one and after a few months it really isn’t suiting you, you can always change. It isn’t set in stone.
Hi, I was on Copaxone for 5 months but have had to come off it as I’d been having too many of the post injection reactions which in turn had made me wheezy and kickstarted a return of childhood asthma. If I hadn’t had these reactions I still definitely would choose Copaxone over the interferons. I found that for the first couple of weeks I had some skin reactions which were a bit red and itched but they went within a couple of days and after a few weeks it was difficult to see where I had injected as there was no mark. You mention that you will find it hard to sit down and relax before injecting. I would say that it is extremely important that you find time to relax espeicially with Copaxone as I know that one of my post injection reactions was because I’d been stressing and rushing around just before I injected. My nurse told me that the best time to do injections was when you were not tired and to try to do the injections around the same sort of time every day. ( But don’t worry if you don’t do this so long as you leave at least 12 hours before the next jab ). Also it was important to massage lightly the injection site 24 hours afterwards to disperse it and stop lumps forming. I also found that carrying extra weight definitely helped with injections. I was advised to have the autoinject on level 10 everywhere but in all honesty I reduced it to 8 when I did my arms and legs as they hurt if it was on 10. Tummy and hips were absolutely fine on 10. I too kept a weeks supply out of the fridge in the pouch supplied and found injections a lot easier if my skin was warm beforehand. The cool pack eased any itching afterwards. I’m gutted that I now have to have an interferon as I think the side effects may be more debilitating but I may be lucky and manage them ok. I hope that you get on fine with whatever you choose.
Wow - thanks for the responses everyone. My appointment today didn’t go quite as expected… my neurologist was due to be going on maternity leave on friday but baby decided to put in an appearance early and she went into labour this morning at clinic. Needless to say - I didn’t see my consultant and the consultant who is taking over my care doesn’t have an appointment free until at least September. I managed to see my MS nurse and we discussed DMD’s properly. She said that it would be most likely I would be offered Copaxone only due to my previous bouts of depression, although that my depression was never awful so she would discuss with new consultant. She suggested that I might be a bit anxious/depressed at the moment and tbh she is right. She is getting me the next available appointment with other MS consultant with view to starting DMD then, and if I have another relapse in the meantime she will push for me to start them then.
I guess I am as happy as I can be with that - not consultants fault she wasn’t there, just frustrating that I had got myself ready mentally for decision making.
Thanks again to everyone who took the time to respond to my post
I finally decided on Rebif after weeks of angonising. I took my first injection on Monday. I took my second about 30 minutes ago. I am on the titration which means the dose goes from 8.8 mcg to 44 mcg over four weeks. I have had no site reactions but I have had some achey symptoms which went after half a day. I did feel that it affected my mood too, this went too after about half a day. I went for a walk in the sun. I have used st John’s Wort for depression over the last five years. It has worked really well for me. I use the HRI, Good Mood which you can get on Amazon. As for the injections, I just did mine in ten minutes. I didn’t rush it, I got the Rebismart, switched it on, pressed start and followed the instructions. It’s really easy.
About your decision, don’t rush it, take your time. I went for Rebif because of it’s efficacy. It was either that or Copaxone because of it’s lack of side-effects.
I’m on Copaxone, have been since end of September 12. Doing the injections is fine, you quickly get into a routine and they are straight forward to do, a bit stingy at time of injection, but that quickly passes.
I do mine in the evening, once the house had calmed down a bit and I’m changed into my joggers and slowing down for the day. My husband was shown how to do them too, so he does my hard to reach areas.The drug company help is excellent, I was assigned a nurse who phones me, visits me and is there to take my calls with questions,
I have lately unfortunatley been getting a lot of lumps and bruises which are angry and sore and are taking a long time to go down, despite masssage, cold packs etc…so my site rotation is all to pot as I have to “rest” sites for one or two weeks at a time and double up on other sites, which isnt ideal.
I like copaxone and would recommend it, but it might be nescessary for me to come off it sadly, if the site reactions don’t improve, I’ve to carry on as I am doing and it will be reviewed in April by my MS nurse inconjunction with my Copaxone nurse and see what happens then.
Hi I totally agree with Alison. I too was on Avonex for 7 years without any problems. I chose this as the best option to suit my lifestyle as it was only injecting weekly and I was well enough to work at the time. Initially for the first couple of months I had quite bad flu like symptoms but these soon wore off. I didn’t have any problems with skin or site reactions. I think it is also worth pointing out that it is not a miracle cure and I still had significant relapses while on it. My neuro took me off it at the beginning of January as my ms had worsened significantly and I now have SPMS. Anne x.
