Forum

refib avonex or copaxone?

Following a recent relapse and subsequent MRI. It has been recommended that I begin disease modifying drug therapy. This has all been pretty overwhelming if I’m honest and reading the through the pro’s and con’s of refib, avonex and copaxone. I am still none the wiser regarding which route I should take. I suppose I’m interested to hear from people who have already gone through this process. I have been off work since my admission to hospital for steroid treatment in September and I’m due to return to work next week. Ideally I would like to return to work as planned however I worry that the side effects from taking the injections will hinder this. Thanks in advance

Hi there, hope you are feeling better after your recent relapse. I can’t offer any advice on rebif or avonex as I wasn’t allowed to take them due to my history of anxiety and depression, which apparently these drugs can worsen. So I was basically told by my neurologist that copaxone was the best option. So I started taking it and found it was a doddle. No fluey side effects as had been reported in the other drugs and I found the daily injection fitted in nicely with my daily routine. The only side effects I did have was irregular periods so assuming your female maybe be aware of this. I’m not taking it at the moment as I’m pregnant but plan to start taking it again after the baby is born. Best of luck with your decision x

Thanks for your comment and congratulations on your pregnancy. Avonex and rebif also have changes to period as a side effect too. Copaxone also notes potential depressions and anxiety symptoms. I’ve noticed that people have switched to copaxone from avonex and refib due to the flu like symptoms. Fewer injections and maximum benefits and few side effects would be ideal as my concerns lie in the practicalities of ordinary day to day life juggling 2 kids full time job with the potential side effects and how realistic it is to assume that I will manage to work on through the symptoms. The more I I read the more think refib and copaxone as an alternative should the side effefts of refib be too much. Thanks again for telling me about how copaxone has been a positive experience for you.

Hi Jacqui

I chose Rebif four years ago as I didn’t want to inject daily and I didn’t like the size of the needle with Avonex. My nurse showed me the various syringes and the auto injectors that went with them. She also gave me a large pile of literature and the msdecisions website address which I found the most useful. I looked at the videos of other DMD users and then filled in the Q & A section about my lifestyle which narrows down your choices.

I delayed the start of Rebif until the school holidays (I work in a high school) so I could get over the worst of any side effects before going back to work. As it happened, they weren’t so bad (and neither was the injecting part actually). I was a bit achy the next morning but I used to take ibuprofen with my injection at bedtime to sleep through the worse of it, a couple more on waking and by lunchtime I would be okay. Tbh, I was still recovering from a relapse so it was hard to know what was side effects and what was relapse recovery. The achiness eased off just before I went up to the full dose and I didn’t have any other effects apart from injection site reactions - 50p sized red marks which didn’t hurt. They just don’t look attractive and take about 2 weeks to fade away.

Sadly, I’ve had two relapses this year so I now need to switch to Gilenya so it didn’t work for me long term but there are loads of patients who’ve been on it much longer. Rebif did keep me relapse free for 3.5 years so it worked well for a good while and I’ll never regret trying it and it’s opened the door to Gilenya which I start on Friday :slight_smile:

Tracey xx

Using Rebif myself. Best taken just before bed to avoid the usual side effects. Using the rebismart device as this avoids seeing the needle. If you want any questions answered on this device just pm me. BE

Thanks Lisa C for telling me about your experience with Copaxone and congratualtions on your preganacy Having reviewed the literature provided by the MS nurse and searched the websites recommended, I have decided that I will try Rebif as I do not wish to be taking injections daily if this can be avoided.

Tracey it was reassuring to hear that the the symptoms you expereinced were not as bad as you had anticipated when you started taking Rebif which leaves me hopeful that my return to work following my recent relapse and after starting the treatment may not be as difficult as I anticipate. I usually work from home 2 days per week and this should afford me the time to get used the the potential side effects of the treatment. Sorry to hear of your recent relapses and I wish you well on starting your new treatment.

BE I have left a message for the MS nurse to call me to confirm that I wish to start Rebif using Rebismart. When she has confirmed when I can start this treatment I will PM any questions I may have.

Thanks again folks, I do appreciate your comments.

Jacqui

Hi Jacqui, It’s good that you have researched the different DMDs and made your decision. When I started on DMDs I chose rebif with the rebismart. I also didn’t want to inject every day. The rebi smart was very easy to use and the rebif nurse came to my home to show me what to do etc… At first everything went well but I started getting bad headaches which lasted all day and were very debilitating despite taking paracetemol to avoid the flu symptoms. I persevered for 8 months but then on advice of my MS nurse decided to change to copaxone. This has suited me much more and injecting every day is not too much of a chore. Yes I get lumps under the skin occasionally where I inject but no headaches or flu symptoms. So hopefully you will get on fine with rebif but if not copaxone is a good alternative, I haven’t regretted changing. All the best. Cathy

I’ve been on Rebif for 8 years and i’ve done well on it so far. The side effects were minimal for me.

Everyone reacts differently to the dmd’s so you won’t really know until you try one.

If you don’t get on with the Rebif they will swap you onto another one.

Good luck

Teresa.x

Good luck Jacqui, both with Rebif and with your return to work. Remember to listen to your body and if you need time off to rest then do so. I returned to work too soon after a big relapse and that’s why it took so long to recover. It was supposed to be a phased return but I felt under pressure to work my full hours very quickly … Never again, now I work what I feel able to do

Tracey x

When it comes to work attendance, uncontrolled RRMS is your enemy and DMDs are your friend! So don’t worry about that.

Which one? Well, I don’t know. I was only offered one, so that’s what I took (Avonex) and it was very good for me. TBH I am not sure that which one matters much. If the one you plump for works for you, that’s great and, if it does not seem to suit, you can try another. Try not to stress too much about the choice. The big thing is to be on one, so that it gets to work to keep you well.

I am sorry that you are having such an unsettling time of it. Starting a DMD can really give a person a feeling of wresting back control of the steering wheel, and that is all part of the therapeutic benefit (or so it seems to me), quite apart from the other clever stuff it is doing.

Good luck with it all.

Alison

Thanks once again ladies. Im still unsure if im ready to return to work on Monday as planned. I tend to talk down my symptoms and feel awful for the extra work my colleagues must be taking on in my absence. I also dont feel my mangers fully appreciate what its like to have a relapse so like how Tracey has felt in the past, I too feel pressured to return probably sooner than I should. It’s difficult as everyone seems to think you look ok so why are you not at work? Physio has been treating me for pain in my shoulder which also causes pain in my arm. Physio assumed this was muscular however recent mri has shown its actually wear and tear in my neck. So this too is causing problems. Im hoping after speaking with MS nurse about DMD and physio about pain that I will be in a better position to know if its a good idea going back to work this Monday!

Thanks once again ladies. Im still unsure if im ready to return to work on Monday as planned. I tend to talk down my symptoms and feel awful for the extra work my colleagues must be taking on in my absence. I also dont feel my mangers fully appreciate what its like to have a relapse so like how Tracey has felt in the past, I too feel pressured to return probably sooner than I should. It’s difficult as everyone seems to think you look ok so why are you not at work? Physio has been treating me for pain in my shoulder which also causes pain in my arm. Physio assumed this was muscular however recent mri has shown its actually wear and tear in my neck. So this too is causing problems. Im hoping after speaking with MS nurse about DMD and physio about pain that I will be in a better position to know if its a good idea going back to work this Monday!