Forum

Chose Copaxone, but now dithering, got a question about it please

Hi all,

I recently chose Copaxone as my DMT of choice, but it is a while before I start.

I had a thought though, and it is that when I travel, I don’t necessarily want to be carting a load of liquid that needs refrigerating around, and so I thought I’d ask people who are on it already, how it comes to me as the end consumer.

Is it a powder that needs mixing? Is it a chilled liquid? How many days supply do I have in advance? What if it runs out?

Hopefully, if I can get an answer or two about this then I’m not too late to change my mind, so I could really use a little help here, and would be very grateful for it.

Many thanks,

Nev

hi nev

copaxone comes as a pre-filled syringe.

if you are flying you must keep it in your hand luggage.

a letter from your GP is essential for getting it through customs.

wherever you are staying should have a fridge to keep it in.

you get a small bag which holds enough for 2 weeks.

i never had a problem with it.

good luck

c x

Copaxone is an easy DMD. Prefilled syringe, little tiny needle which goes in a fat bit of you, so thigh, bum, stomach, upper arm (depending on where you have any fat, I stopped using my arms as they were too skinny). It doesn’t give you flu type side effects. Some people do have injection site reactions. I never did when I took it for 5 years. (I suspect ISRs are more likely when you use an autoject device rather than just hand sticking the needle.) Some people also get a kind of flushing/breathlessness right at the start. But it’s very short lived and it would soon stop if you even get it.

Taking it on holiday is easy, as Carole said, just get a letter explaining what it is from your GP. I vaguely remember getting a small cool bag to travel with the drug.

Sue

Thank you both for your speedy replies!

I guess the main reason I was worried was that next year I plan on taking my wife to Asia for up to 3 weeks.

Most of our normal travels are just short breaks of 3 or 4 days, but that one was a concern to me, and still might be if I only get 2 weeks worth at a time.

Did you ever have issues with a GP’s letter not being translated into the local tongue?

I guess I’m just trying to cover the bases before I get caught out by something I hadn’t thought of.

I’m really grateful for your thoughts.

Nev

hi nev

you can take as much copaxone as you like. it’s just the little bag holds 14.

i have no idea about the gp’s letter being translated.

maybe ask your gp, ms nurse or other medic.

c x

Thanks Carole,

That’s some really helpful stuff mate,

Cheers,

Nev

Oh plus Nev, you’re likely to be sent a months worth at a time, and if you’re going to be away and the deliveries fall at inconvenient times, you can always talk to the drug delivery company and see if you can get more than usual on a given delivery.

The last thing you should be worried about is your meds when you’re planning a fabulous trip.

Sue

Cheers Sue,

Sounds like shouldn’t be insurmountable problems.

Thanks for your advice,

Nev

Just had a thought Nev, when I took Copaxone all those years ago, I think it says to keep it refrigerated. But that it can be at room temperature for quite some time. So I took them at their word and used to stash a week’s worth in the bathroom so I wasn’t having to keep going downstairs to the fridge to get a dose. So have a good read of the leaflet when you get yours, see what they say about how cold you have to keep it. Obviously, going round Asia could be a touch warmer than the average British summer.

So pleased you’re taking such a big trip.

Sue

Hi Sue,

That would be a relief it that’s the case! But as you say, in a hot country, might be a little different.

The trip is for my wife’s 40th, and it is a case of going where she wants, but it’s a long time away (Aug 18) so will hopefully have time to iron out all these little problems!

Cheers Sue, very helpful.

Nev

Hi Nev, have they given you the 40mg or 20? I inject 3 times a week on the 40, not 7. I take mine out of the fridge (in threes) at the beginning of the week & leave the rest out. They recommend you don’t use them straight of the fridge, but at room temperature, Sue is right though, check the guidelines when using somewhere hot, perhaps you could take them out of fridge 30 mins before use? Would be up to temp by then & should not get too warm. Think if your room is sufficiently air conditioned, it wouldn’t be a problem, according to the manual, if a fridge isn’t available, you can use them safely in a range between 15 & 30 centigrade for up to month, problems occur if they accidentally freeze, they are then not usable . The drugs company will provide you a travel sharps bin as well if you ask them. Tracey

This is all brilliant help Tracey, thank you very much.

I had been quite worried that I was not going to be able to fly, or it was going to be too much trouble to do so.

It’s not great, but it’s not as bad as I feared.

Cheers,

Nev

I have been on Copaxone for 10 years, I’m used to carting it round now​ haven’t taken it abroad to be honest, but I can’t foresee a problem with the storage. Seems to be that it freezing is more of a worry, can’t see that happening in Asia!! It is relatively easy to transport, have been on a ferry with it & taking into account that you are possibly on other meds, it’s just 1 more to add. Have a lovely time, chances are, by the time you go, taking it will be second nature anyway. The equipment needed for the injections are all kept in a nice, neat purse, for want of a better description, so ask for a travel sharps bin & they wont be cumbersome either. I am presuming you will be on the 40mg, I inject Mon, Weds & Fri, weekends off, not too bad really. Tracey

Funnily enough, I received a phone call from the MS nurses at my hospital today asking which dose I wanted of this DMT!

I was able to appear reasonably clued up thanks to this post, and all your replies, so I ended up opting for the 3 times a week dosage. Having never been a junkie, this will be the first time I’ve injected myself, but I’m not anticipating any problem doing it.

She said the same things as you’ve both said, so I really am grateful for some top info.

Cheers,

Nev

Injecting yourself for the first time is a bit kind of scary. I remember trying to make my hand actually stick the needle through the skin and my hand basically not wanting to do it. But brain overcame scaredy pants hand. And subcutaneous injections are way easier than intramuscular (which was my first!). When you see the size of the needle, you’ll perhaps realise that it’s titchy. It’s literally just beneath the skin.

So you’ll be an expert within a couple of weeks Nev.

Sue

A year ago, it wasn’t something I imagined becoming an expert in!

You can never tell how life’s going to go, eh?

Many thanks, have a lovely day Sue,

Nev

Hi everyone

Very interested in this post as still uming and aring about dmd. Am getting keen on trying Copaxone as have heard favourable opinions on side effects and long term use. Tracey if its ok hows has it been for you side effects wise and have you been free from relapses and other symptoms while taking it. 10 years is a long time.

Many thanks

Noel

Hi Nev

Depends which parts of Asia. Most customs people will speak english but if your doing abit if mini over land traveling ie china you can get stopped by officials while on the road but it would be very rare for them to riffle through you bags. I would get the letter translated for places like china, Japan, Mongolia, (would give North Korea a miss! :slight_smile: ) English language isnt really used (as i said its more for when your out and about rather than customs) India, Nepal, Pakistan, Sir Lanka, Singapore and South east asia youll have no problems explaining what its for if you get asked. You can probably buy it over the counter in Bangkok, lol.

Might be worth taking a print off of basic MS illness info though helps explain stuff as well. It will be fine smuggling it through customs no problem. (Great choice of words, lol)

Great places to travel around Asia. Lovely.

Noel

Hi Noel, to be fair Copaxone has served me well over the years. My relapses were well controlled. I am now SPMS unfortunately, not to do with the Copaxone not working, just destined to progress I suppose. That’s not to say you will progress, not everyone does, in fact an awful lot of people with RRMS don’t. I am still on it, but they will be stopping it in the near future, they do keep you on DMDs sometimes even with a different dx. My main side effects have been my sites. Sometimes they are red & sore & after 10 years you can imagine rotation is getting limited!. I have quite noticeable dents, especially in my legs. It’s called Lipoatrophy, the fat cells break down under the skin. As for other side effects, I had a few days of sniffles & flu like symptoms when I first started, but they were short lasting & bearable. Hope this helps Tracey

Hi Tracey

Yes that helps its great to let me know your thoughts and very much appreciated. Alot of folks are using tec but its a fairly new one so no really long term users past 4 years. Everyone seems to get on well with it but for me I have a strange thought in my head thats its a fairly aggressive one and if copaxone doesnt work to well I have a more aggressive one to fall back on.

I started last August with a cis, all rather hideous looking back. But to date alls been well. Im not diagnosed with ms just yet but ive got it, I can tell its moving around. Nothing to bother me just like a twinge here or there that cleary has no reason why. A small patch next to my eye that tingles. Its really faint, comes and goes. Stuff like that. If you could decide again woukd you take a pill? If you don’t mind me asking, how has it all affected your mobility over the years? I guess youve had loads and loads of issues but mobility is a big one.

Thanks

N