My app is tomorrow to discuss and decide? I was leaning towards rebif now leaning towards copaxone too…obviously I don’t want both ;_) any opinions, advice, experiences welcome. I was leaning towards rebif because of the rebismart and also some proof it reduces lesions etc. However leaning towards copaxone because of the reduced side effects. Fworried about the depression one…i have had post natal depression. Ooh I hate needles too hence the rebif decision. Even passed out when someone did a blood prick test for sugars :-0 x x x
Trust me after awhile you will get used to the self injecting. It is hard to imagine but like all of us it does get so much better.
Its such a hard choice but if you have narrowed it down to two thats a great start, for a chat with the ms nurse. They will help you from their.
I choose avonex because its once a week but if it doesn’t work out i will try copaxone, because im used to using the needles now. I hated injecting at first, and the idea of doing it myself scared the *&^% out of me. But we do get used to it. I find it almost natural now.
Thanks for that Darren…I nearly went for avonex but I think I’ll be better with needles if I use them more often whereas weekly I think I would be getting anxious by the time the next one comes round, plus I believe side effects can be quite bad on avonex with it being a weekly dose each time? Thanks again hun x
The side effects were bad to begin with but have subsidded now. A week is along time between jabs, so getting used to it is harder.
But narrowing it down to two is a great start. My ms nurse had all the auto injectors for me to play with. So you can have a go with the rebismart. Which i must admit i was impressed by, nothing atall like a needle or even a medical device. Just looking at the copaxone autoinjector’s, they look much the same as the avonex pen. Quick and easy to use.
You don’t have to make a choice till your appointment. You have done all your research and got it down to two, let your nurse help you with the final choice.
Like you I was undecided when choosing DMDs and I initially went for Rebif. The rebi smart was dead easy to use and at first everything seemed ok. I would get red blotches where I injected . At first you start on a small dose and gradually titrate up-the rebi smart does it all for you so you don’t need to worry about injecting the correct amount. However I got some really bad headaches which would last all day. I couldn’t take ibuprofen and just took paracetemol to stop the flu side effects. A couple of times I forgot and woke up in the night shivering but in a cold sweat-not nice. I tolerated the headaches for 9 monthes but then made the decision with the help of my MS nurse to stop taking rebif and have a break from DMDs with a view to starting copaxone. Three months later I started the copaxone and have got on ok with it. The injections do sting abit but after 7 months this is easing and the site injection marks do form lumps under your skin-but these do go if you massage them with a moisturising cream. I have felt better on copaxone as no horrible headaches.
Remember you can always change DMD if you don’t get on with it.
Hope your appointment goes well.
Thank you guys. Ooh not looking forward to seeing the auto injectors, worried I might pass out! Getting a bit scared now. But I know I’m going t have to get over it if I want to minimise the chance of relapse. The last one has left damage so I don’t want anymore damage. Did any of you suffer any depression on your DMDs? As you can tell its something that worries me esp as I have a three year old. Must admit I did have three in mind, rebif, extavia and copaxone… I believe rebif and extavia are the same more or less. X x x
I’ve been today. Take a trolley with you to transport all the info booklets you will come away with!
I was told that they don’t offer Extavia with it being, as you pointed out, basically the same as Rebif, so I guess, as it’s the same clinic, you won’t be offered it either.
Went in not having a clue, but having read the info I came away with, I think I’m siding with Rebif simply for the ease of use that the RebiSmart seems to offer.
The nurse I saw was great. I didn’t feel rushed and had plenty of time to ask all the questions I had. She provided a phone number and e-mail address to contact her and said once I made my choice to either call or e-mail and they would do the rest. She also gave me the impression that any concerns no matter how small and I hadn’t to worry about contacting them. I feel a little bit more reassured now that if I’m not sure about anything there is a point of contact I can go to.
Good luck for tomorrow
By same clinic do you mean your at RPH too? And thanks that’s reassuring x
Yes, we are both at the same hospital.
Aah I see, so playing detective you must be from Preston area? X
I’m seeing a nurse called Shirley. X