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Any experience with Copaxone?

Hi,

I am about to go to an appointment with my MS nurse in about 10 mins argh! Have ummed and arred over the last year about started treatments and have decided possibly Copaxone might suit me best as it seems to have fewest side effects. Anyone have any experience of this or other treatments would be appreciated. Still not sure I want to start them but silly not to if they will reduce my relapses.

Thanks, Clare

Hope the appointment went well :slight_smile:

I was on Copaxone for 4 years. After a couple of weeks I found injecting no problem at all and, three after coming off it, I can still remember my injection routine! Sat: left thigh, Sun: right thigh, Mon: right hip, Tues: right tummy, Wed: alternate arm, Thurs: left tummy, Fri: left hip :slight_smile:

I injected manually, in the morning, after brushing my teeth - just part of the getting up routine. Injecting manually was very straightforward, I liked being in control and disliked the abruptness of the autoinjector. I did the injections in the morning because I’d have plenty of time to remember to do it on the same day if I forgot!

I got a bit of itching / stinging at injection sites and red blotches, but nothing of any note and I was busy getting up and getting the kids up so I didn’t really notice anything. I did have a weird thing happen once when I must have injected into something I shouldn’t have in my tummy and I sort of burned the inside of my skin, leaving a scar, but I’ve never heard of anyone else ever doing this, so I wouldn’t worry about it if I were you.

I only had a couple of minor “blips” (not worthy of the word relapse) while on it and developed just one new lesion in 3.5 years. I had to come off it when I started a nasty relapse and my neuro told me it wasn’t working for me any more, but if that hadn’t happened, I’d have been happy to stay on it.

I hope it works really well for you :slight_smile:

Karen x

Hi Clare,

Hope the appointment has gone OK.

I started Copaxone 6 weeks ago and so far, haven’t really had any major problems. I too inject manually, as I can’t be bothered with the autoinjector and I do it in the evenings when I’m a bit more relaxed. Apart from a few red blotches and some stinging, I don’t really have any problems, although I did inject into muscle in my arm a couple of times, which was uncomfortable for about 30 mins. It’s still early days for me yet, so I don’t know quite what’s happening with the lesions etc, but I don’t feel any worse!

Good luck with whatever you decide.

Sarah

Thanks for your comments. I chickened out of Copaxone purely for the every day injections and decided to opt for Avonex as it’s only once a week and think it will be more manageable for me. I was initially put off by the side effects but the MS nurse said this depends if you get colds/flu a lot anyway which I don’t generally. Everyone at work is ill at the moment and I am one of 2 staff well. I’ve just got to wait to hear for the next steps but my neuro wanted me to start taking some treatment so I think it should be quite swift.

Clare x.

Hello Clare, I’m waiting to start on Avonex too. Just wanted to wish you well. Sam xx

Hi Sam,

Nice to hear from someone in the same boat. What made you choose Avonex? Have you had any feedback from anyone else?

Clare x.

Hello Clare, I chose Avonex mainly due to my daily routine with my son. I am the only person who can take/pick him up from school and I am hoping that I will be over the worst by the start of the week etc. If it doesn’t work out the Nurse said I could change. Did it take you long to decide? I felt like a right dithering, blubbing wreck until I felt so bad last weekend, I had to make a decision. I have had great advice from Darren on the EL forum as he also takes Avonex. I also spent a lot of time on the MSDecisions website and YouTube watching people taking all the various drugs, focussing on Avonex. From what I have learnt, the side effects can be bad but so can all the interferons. Just need to have a blood test to check certain levels and then the Nurse will order it. Sam xx

Hi Sam,

I have tried to put off medication for as long as poss really. I’ve had 2 major relapses in 2 years and my neuro suggested it but I cried everytime I thought about taking it and now have had a new mind set I have 2 young sons and want to last like this as long as possible so decided this was probably the best way. Trying to think of medication in a more positive way now. Must admit I did little research on any of them. Decided on this as like you I felt by the beginning of the week I would probably have recovered from side effects. My MS nurse said it’s not so bad if you don’t get heavy colds and flu normally which I don’t . I work part-time and have Mondays and Tuesdays off anyway so felt this was the best option for me. Also as it’s once a week and into muscle rather than tissue you are less likely to get injection site problems like you would on the everyday one.and I kinda like my legs!

I was at the hospital having a vitamin D blood test so the MS nurse got me to have my blood tests then so just waiting for my order now. It would be great to keep in touch with you as we start the treatment, I don’t know anyone else in the same situation. My Dad has primary MS so has some relation to my symptoms but receives no treatment.

Let me know how you get on,

Clare x.

Hi Sam,

Just an update really. I’ve been given 2 new appointments in May - one with Neuro and one with MS nurse so I guess this will be my start of treatment! I think you have to have one of them present when you do your first injection. I think the MS nurse is right and that I am minor relapsing a lot. I still have to have regular naps when I’m not working otherwise I’m fast asleep by 9pm. I’ve just lost my energy and find it hard to give 100% to my job (infant teacher) where I used to be really outgoing with them. How are you getting on, any appointments yet?

Clare x.

Hi Sam,

Just an update really. I’ve been given 2 new appointments in May - one with Neuro and one with MS nurse so I guess this will be my start of treatment! I think you have to have one of them present when you do your first injection. I think the MS nurse is right and that I am minor relapsing a lot. I still have to have regular naps when I’m not working otherwise I’m fast asleep by 9pm. I’ve just lost my energy and find it hard to give 100% to my job (infant teacher) where I used to be really outgoing with them. How are you getting on, any appointments yet?

Clare x.

Hello Clare, Good news that things are moving along with your appointments, shouldn’t be long now :slight_smile: I had my blood test last week, so once that is back, the Nurse will check and if levels are good, she will place the order. I hope I’ve made the right choice :confused: I am really struggling lately. I never feel right, some things like fatigue are always there but I just feel like I struggle with absolutely everything. It’s getting me down but I’m putting a brave face on and carrying on. Are you working everyday? I used to work 6 half days until I got made redundant. It was a terrible time but a relief at the same time due to symptoms. I feel for you, it is so hard trying to do everything. I still have my morning Saturday job which is very physical and that is becoming very hard which is really upsetting. Sam xx

Hi Sam,

I work 3 days a week since I’ve had the boys. That’s enough for me and I get 2 days with my baby too which is lovely. My husband would like me to go back full-time for financial reasons, he’s self-employed so quite often out of work, I find the stress of money makes my MS worse but don’t think I’ll ever want to be full-time again. I haven’t checked my results but guess they were O.K if I’ve got new appointments. Will phone up on Tuesday to get vitamin D test too. I feel like I’m living in a haze a lot of the time as I’m partially sighted in one eye and sometimes things are quite blurry.

Take care and catch up soon.

Clare x.

Hi Sam,

I work 3 days a week since I’ve had the boys. That’s enough for me and I get 2 days with my baby too which is lovely. My husband would like me to go back full-time for financial reasons, he’s self-employed so quite often out of work, I find the stress of money makes my MS worse but don’t think I’ll ever want to be full-time again. I haven’t checked my results but guess they were O.K if I’ve got new appointments. Will phone up on Tuesday to get vitamin D test too. I feel like I’m living in a haze a lot of the time as I’m partially sighted in one eye and sometimes things are quite blurry.

Take care and catch up soon.

Clare x.