changing dmd advice please

Hi all this is my first post i have been reading on here for the last few months and have found it great help. I’ve been on copaxone since last november i was given choice of that or rebif wasn’t keen on flu symptoms,im thinking of maybe coming off it as had 3 horrible injection reactions with 1of them being quite scary burning up, tightness of chest difficult to breath. I also suffer quite bad with bruising on injection sites now i have noticed dents on my thighs Sorry to go on im thinking of changing to rebif or aubagio any advice is much appreciated . I have also read that rebif is a better drug not sure How true this is. Thank you for any help x

Hi Jabby

You can find lots of information about the DMDs under the What is MS? section of this website and then click on the Treatments and Therapies tab. There is now a considerable choice of DMDs so if one doesn’t work it should be possible to switch to another. The more information you have, then the better you are placed to make a decision that feels right for you.

It’s very difficult to say which drug is better than any other. There are statistics available but they are average figures and do not really tell you how you will respond to the drug. Sometimes you just have to try a drug and see if it works for you.

Do you have access to an MS nurse? If so, then you may find it helpful to discuss it with him/her especially if you are having nasty reactions to copaxone. A proper discussion about the pros and cons of each drug to help you reach a decision.

Good luck whatever you decide.

Tracey x

Hi there,

I did the opposite to you-changed from rebif to copaxone and it was really easy. I was getting bad headaches with rebif and so after 9 months I had a chat with my MS nurse. She suggested I have a months break from rebif which coincided with a holiday I had in Spain so no need to take it away with me. During the break I decided to stop rebif permanently and try copaxone-felt so much better off it and so had another appointment with my nurse who agreed with my decision and dealt with the paperwork. About a month later I started on copaxone.

Copaxone suits me better-I have not had the scary breathing reaction hat you have but I have to be careful with site rotation as I am getting some lipoatrophy on my thighs but the copaxone nurse is monitoring it closely and visits every 3 months to support me and advise where to inject.

Good luck with your decision and hopefully any new drugs will suit ou better.

Cathy

I’m on rebif and finding it fine. I do have flu like symptons but they only last for 3 hours after every injection. One dose of painkillers easily take this away. Everyone is different.

Hi thankyou very much for your replies its nice to here advice from someone who has been in your position. I do have a ms nurse she is aware of my first 2 reactions we decided to stay with it as had only been on copaxone 12wks i haven’t told her about dents on thighs as its only been recent. I suppose im scared to make the decision to come off copaxone in case its the wrong one and i feel worse on a different dmd,im making a point to be sure i move sites around on my thighs. Thank I think im finding it hard to come to a decision as i actually feel quite well in myself for past 4-5 weeks compared to the first 3-4 months of copaxone where i thought i was having relapse as had sensory problems again in my weak leg especially when bending neck forward but nurse said it was just a symptom from an earlier relapse,maybe i will give nurse a call. Thank you again x

Hi all i rang ms nurse today spoke to her about my recent reaction and the dents on my thighs she said the dents can be common with copaxone she agree i should change dmd especially with the after injection reactions,she thinks i should try the new tablet aubagio which should be available very soon. Also not to inject my thighs anymore so just bum and belly it is . Hopefully aubagio will be better i’ve read hair Thinning can be a side effect,fingers crossed i will be ok x

I’m on Avonex and having trouble with the injections. Went to the GP today and got some beta blockers to calm the panic attacks and anxiety. Going to try again tomorrow with hubbie doing injection. If this doesn’t work I’m thinking of moving to aubagio even though MS nurse wasn’t keen on idea as bit of an unknown

Hi all! I have rrms and it hit me like a train! I started on Rebif and things were not any easier for me, I decided that actually I’d rather have nothing at all! I really couldn’t feel any worse at that point! My Neuro panicked and asked me to try a relatively new tablet called gilenya, and I have been taking a tablet a day since last June, and I’m doing a night class and home study course now! Something I really didn’t think was possible 18 months ago! Different meds suit different people, don’t be afraid to try something different, I’m glad I did! Good luck x