Copaxone

[nuchnib]

Hi all

I've had MS 13 years but avoided dmds up till now....after more relapses recently I've finally been persuaded to start - thinking it's got to be copaxone cos of the (possibly) fewer side fx....but injecting every day and the issues that brings, well, I'm very anxious....also I'm alone so got noone to hold my hand (if you know what i mean)...I'd totally appreciate anyone's experience and opinions, tho I know everyone's different.....THANKS!!!

[Rama]

Hi,

 

Welcome to the forum.

 

I started Copaxone about 4 weeks ago. I had been on Rebif for two years. While I was on Rebif I suffered some flu like side effects but nothing too much. However I was struggling more and more with my walking and apparently muscle stiffness can be a side effect of Rebif. So they changed me over to Copaxone. I started using the auto injector as I was a bit scared of physically having to push the needle into myself. However now I nearly always just use the syringe manually. After the first time I realised it was really easy. The Copaxone injections sting a bit for about 10 minutes after the injection but it soon wears off. I also find that my thighs are quite tender after injecting. But that might be because I have very little fat on my legs so not much to inject into. Don't have that problem with my stomach or hips!!!!

 

I honestly think it is the fear of the unknown that has you so anxious. Once you've done it a few times you'll see it's not too bad. Just make it part of your daily routine. Wash, brush teeth, inject, go to bed!!

 

Good luck with it.

 

Gill x

[nuchnib]

Hi Gill,

Thank you!

Everything you said is really helpful. You're right of course - it's definitely the fear of the unknown,

as well as the possible reactions (heart palpitations) immediately after injecting, and the possible lipoatrophy etc etc....

It's also the idea of it being every single day for, maybe, years.....

But again, I totally appreciate your input and it's definitely made me feel less anxious hearing about your experiences. Pretty reassuring in fact.

x Beth

[Rama]

Hi Beth,

Glad I could be of some help. And you never know maybe they will discover a miracle cure and we can all stop injecting!

 

Seriously though - don't worry about it. It will soon become just part of your daily routine.

 

Gill x

[lala]

Hi Beth,

 

I have just started injecting (rebif not copaxone) and I was very nervous about it all as well, think its only natural to be anxious of the unknown. Like Gill had said after a week it had become just another thing, like brushing your teeth! I have had very few side effects (thankfully) and although I'd rather not have to inject at all it's far better to feel in control of this disease.

 

Good luck

Laura x

Edited 13 Aug 2013, 3:55 pm by lala

[suzysue]

Hi i was on copaxone last year for about a year, i got used to injecting every afternoon after id finished work was part of my day altho i disliked it i new hopefully it was going to help me,unfortunatly that wasn't the case for me i relapsed in the november i had another mri scan which showed i had more lesions,so i was put on GILENYA which is a tablet which i thought was great,but each medication comes with its own problems,i had to go to hospital for my first tablet had to be administered by neuro himself then i had to be moniterd all day as my blood pressure dropped, eventually i got used to it, just took a while,recently had my eyes photographed as it can cause problems with my sight so all being well it comes back good,won't find out till monday when i see my nurse for more blood tests.

susan x

[nuchnib]

Gill - thanks again, in the absence of a miracle cure, I at least feel I've got some company!

 

Laura - It's great to hear you've had few side fx, those were the main reason I'm leaning towards copaxone, but now I'm reconsidering!! Though of course, 'everyone's different' is the recurring theme. But thanks also for your reassurance, big help!

 

Susan - Less reassuring but very important to hear your experience! It's interesting also because I thought Gilenya was only prescribed if you'd already tried one of the interferons, but not copaxone. Had you already been on rebif or one of the others? Or have things changed? That's confused me (not difficult)! Also do let us know how the blood tests go...

 

Again, thanks everyone for responding, I'm pretty much alone with all this stuff so it really helps to share with people who get it!

x Beth

[suzysue]

Hi beth i had been on avonex for 6mths before copaxon, but i got very depressed on it and not being a depressive kind of person it was really bad, i thought that about copaxone not being in that group but i think at the time it had been aloud, sorry to not sound positive in last message,but as you say,everyones experiance is different and good to hear them all take care will update after my visit to hospital monday susan x

[nuchnib]

Susan, thanks for explaining, it makes sense now. Being already a very depressed kinda person, was interesting to hear how the avonex affected you.....It's a concern that avonex et al might make things even worse! And I totally don't expect people to sound positive all the time, I reckon it's more important to hear the truth, warts 'n all. Look forward to your update...x Beth