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*%$!*+? Copaxone

Here is my big ol’ Copaxone moan…Enjoy! Any replies will be much appreciated. Not having the best of experiences so far…

So i stopped taking Betaferon and got my mind back and y’know living wihout constant intense flu symptoms has been pretty damned sweet. I’d almost forgotten what it was like to not be constantly anxious and on the edge! Been on Copaxone for just over a week. Got me a few problems with it, wondered if anyone had had similar problems and found solutions…

The first problems being a practical one. I can’t inject the backs of my arms and the bottom of my back. It is impossible, especially seen as i need to pinch a none existent inch in order to not inject straight into muscle. Maybe if i had three arms and they had more dexterity and didnt decide to judder just as the needle is going in. My arms are uncooperative at the best of times. I can do my stomach myself and it seems my legs are just too bloody skinny to inject. So what the hell are people meant to do if they don’t have a partner/friend/family member who can be around at the same time each day to inject them? Currently my partner is doing it but i don’t know what im going to do when he goes away with work. My family live miles away and my friends are all very busy and i wouldnt really feel comfortable asking them to do this.

Problem number two is the pain when injecting my legs. Oh lordy. I have just dragged myself across the room whilst muttering obscenities as it is too painful for me to move my right legs at all after injecting. i am so skinny and i eat like a pig so i can’t really help that fact. Injecting into my arms and back and stomach are painful, like a bee sting/small army of bees stinging me at once. I can deal with that. Never been one to be phased by stuff like that. But the pain in my legs (i guess from injecting straight into muscle) is unbelievable! Like someone is dousing my entire legsin sulfuric acid. I have sworn more this week than i have done in years! The auto-injetor is already set to 6mm and i dont think i should be injecting any shallower than that right?

Other than that, it is pretty impossible to get any sleep as every injection site is super swollen and mega painful to the slightest touch and my MS symptoms love to go wild when i don’t sleep properly. This is particularly annoying as i really want to get back to work. Living on ESA is the pits. Maybe these site reactions will lessen over time…?

Fun fun fun. Eeeeh.

Hi Kate.

I’ve been on Copaxone for a few months now and can say that for me the site reactions have got much better. Still get the odd lump but the stinging is hardly noticable now. Like you the main problem is my legs that have very little padding. I know I’ve got to rotate but I always put off doing them because it can bloody hurt. I’ve never used anything else but I think I’d rather put up with a dead leg for half an hour than flu symptoms!

My MS nurse advised me not to use my arms and I started off getting someone else to do my back but found that I could actually reach it myself. So basicaly I rotate back, stomach and legs and have little problems now.

Stick with it. I’m sure you’ll get used to it

Good luck

Aileen

Copaxone did not work for me but I was on it for over a year.

I gave up with the auto inject and did it manual instead and went in a few mm before the tip of the glass.

I had less lumps and stinging that way and less leaking out of skin.

I did not do arms I must admit and only did thighs, gut and love handles etc.

I’ve have never had any disolved flesh dips etc that others have suffered so never inject in same spot for several days but
I injected in same areas for my insulin also as I’m a type 1 diabetic.

It hardly ever burned, injection bumps lasted hours then dispersed, anyway off it now as more t2 lesions while on it.

Try manual or going a bit deeper, I was convinced the deeper you go the less painful it was for me or no pain most of the time.

Thanks for the speedy reply Monty. So you were injecting twice a day? Jeez Louise!

Never thought i’d be wishing for a gut and love handles but it seems i am. I am so bloody skinny so i dont think i can inject much deeper than 6mm otherwise it’s going straight into muscle. Kinda want this to work as i’m not sure what other options i have as i reacted SO badly to Interferons.

Think i will get rid of the auto-injector though. It’s not the best product design i have ever seen. Guess doing it manually will probably be a bit weird the first time but i pride myself on not being squemish so i should just get on with it i guess.

Think i should just wing doing it manually or get a nurse to show me the ropes?

Copaxone was once a day then 1x insulin lantus 24hr thingy injection in the morning and then Novo rapid insulin anything from 6 + a day dependinng on
how much ben and jerrys chocolate brownie ice cream and jd and cokes I’ve had.

But seriously though all our bodies are different and we react to drugs differently and I’m a type 1 not a type 2 so I have slim legs and no beer gut (ty JD)

If a copaxone nurse has not visited yet I would wait till she shows you how to use it, I was told not to use it until the nurse visited,
maybe times have changed.

Good luck with it though, Copaxone worked for my ex, she walks around better than me and has more energy so its a drug worth sticking with
if it does work for the user.

Hiya

I had a nightmare when I started injecting Copaxone (and I’ve got plenty of fleshy bits to pick from). The pain was unbearable. I ended up getting Emla cream from my GP, it’s the stuff they use in hospital to numb the area. You need the pasters too, apply a bit of the cream, stick the plaster over it and wait an hour for it to go numb. It really helped me get over the phobia I developed (which had suprised me as I’d been injecting Rebif with no probs).

After a couple of months I had to stop using it because I became allergic to the plasters but by then my body was a bit more used to it and the pain wasn’t as bad. I found that using an ice pack after injecting sorted out any pain I would have. Even now (nearly 3 years on) I get the odd bad reaction, usually in my legs, so I keep the ice pack handy and still use that if needed.

Sue

xxx

The nurse who advised me said that a lot of the problems come from not having the Autoject needle set deep enough.
Her advice was to set 8mm - and that meant the top of the 8 just showing.

Having said that, yes, the thighs are really the worst. The “bee-sting” effect can start almost immediately (other sites can be up to a minute), and the actual needle entry can be felt as a tiny jab just before the sting.

What I have found that can help a bit is to pinch the flesh just a little bit at the chosen site so that it bulges up slightly and then press the Autoject lightly against the bulge. NOTE that this is my personal method, and it may not work for anyone else.

Still, after 5+ months, Copaxone does seem to be working for me, so I will stick with it - in the hope that Fingolimod becomes available next year.

Geoff

Oh yes, Fingolimod…the holy grail. I have just sent NICE some feeback concerning their rejection of it for NHS use. Everyone should do the same!

Thanks for your replies everyone. Gonna keep experimenting with different techniques and hopefully something will work out for me.

Kate

Hi Kate,

Hope you are well.

I can see that you’ve had a few replies but I’ll add my bit…

I’ve been on Copaxone since August and despite the fact that I think it’s helping me, I have to agree with you that when injecting into my thighs I feel like I’ve been given a dead-leg and often I’m seen dragging myself along the floor!!

I do strength training at the gym and have a bit of muscle so when injecting in the back of my arms it hurts like hell! I find the best place is in my lower back/top of my buttocks : ) plenty of padding! lol

I spoke to the MS nurse and she told me to avoid my arms if it got too sore when injecting. I am careful not to use the same area within a short space of time. I do get the lumps and bumps and hate the look of my skin. I’ve got bruises on my legs from the injections so I feel conscious when wearing shorts. However, I do feel that it’s working for me at the moment so I’ll continue.

I’m getting used to the ‘bee sting’ but when I did my first injection I chose the back of my arm and it nearly put me off forever!!

Take care,

Shane.

I was on Avonex for more than 10 years and the IM injections meant no skin reactions. IM injections have much to be said for them when you’re skinny as a whippet, as I was throughout that period. Obviously the flu stuff is going to be a big concern if you did not get on with Betaferon for that reason (I was lucky on that one, mostly), but if the Copaxone does not settle down, and you decide that you just don’t have the curves for it, Avonex might be worth a try. The injection really was fine, and there was nothing to show afterwards. Only once a week, too.

Alison

x

I am a new user of copaxone, 1st two injections went ok and no issues. I am using 40mg 3 times a week using CSYNC auto injector and using early morning. My problems started with the 3rd injection - after 4 hrs Felt very cold and starter to shake and, shiver. fatigue hit and I crashed out for the rest of the day. 4th injection complete exhaustion after 4 hours crashed out again for the rest of the day. 5th injection, same again crashed out after a few hours for the rest of the day. I am unable to do anything for the rest of the day and hve missed my yoga class and pilates classes. The following day I am ok but a bit washed out.

Has anyone else experienced this as a new user and of so how long will it last? ai am dreading the next injection on Monday

Door frames are very handy for pinching the extra inch when injecting into your arm. I found them to be very useful when replacing a continuous glucose sensor and also as a child injecting insulin.

Kathy H why do you inject in morning? My wife has just done hers (normally 9.15pm ish). She is on daily rather than 3 times a week so maybe its different? but i am sure we did evenings after advise from MS nurse before she started and the logic was with flu like symptoms as a side effect this was better when you would be going to bed anyway and could be expected to have passed by the morning.

Maybe that is the answer for you? though this is only from memory and i don’t know if you can just change the times by 12 hours or if you would need to slowly adjust by an hour each time or something? Ask your Ms nurse maybe or perhaps others more informed will be along to offer better advise.

all the best

Ollie

1 Like

when i was on copaxone i’d adjust the timing if i was late doing my jab.

for those who it is not agreeing with, talk to your ms nurse.

my site reactions were so bad that she let me choose from the oral DMDs.

on tecfidera now.

I always injected Copaxone in the mornings. But that was way back when it was only a daily injection. And I never had any side effects.

But Ollie is right, swap to injecting in the evenings if you’re getting dodgy side effect.

Or consider switching drugs if it’s not suiting you.

Sue

OMG - this is just like me only I inject in evening. Just started on Copaxone, first two ok then third one, about 4 hours later at 3am I woke up freezing and shivering and feeling nauseous. I also ached from head to toe. Next one I had same but not as bad. Dreading Monday’s round. I have left a message for my MS nurse so hoping for some advise tomorrow. Failing that I will take some ibuprofen before hand. Hoping it’s something that dies down and eases over time.

HI

I have had to stop using Copaxone after just using 6 injections as i had bad reactions from the 3rd injections onwards. After 3 -4 hours after injection i felt so ill, sick, really bad headache, hot and feverish, could not stand as disorientated so went to bed, recovered after 5 hours or so and then felt like I had a hang over for the next day. Was asked to persevere for a few more injections but in the end was told to stop by MS Neurologist as I must be allergic., earlier I was told by MS Liasion Nurse he has not come across this before!, I did get the bee sting once and yes it is painful, I have a bit of padding on my arms so presume i injected into the muscle the once. However i was using the CSYNC Auto injector which makes injecting easier, if you are not using it I suggest you ask for one… Best of luck.

KathyH

Here is my big ol’ Copaxone moan…Enjoy! Any replies will be much appreciated. Not having the best of experiences so far…

So i stopped taking Betaferon and got my mind back and y’know living wihout constant intense flu symptoms has been pretty damned sweet. I’d almost forgotten what it was like to not be constantly anxious and on the edge! Been on Copaxone for just over a week. Got me a few problems with it, wondered if anyone had had similar problems and found solutions…

The first problems being a practical one. I can’t inject the backs of my arms and the bottom of my back. It is impossible, especially seen as i need to pinch a none existent inch in order to not inject straight into muscle. Maybe if i had three arms and they had more dexterity and didnt decide to judder just as the needle is going in. My arms are uncooperative at the best of times. I can do my stomach myself and it seems my legs are just too bloody skinny to inject. So what the hell are people meant to do if they don’t have a partner/friend/family member who can be around at the same time each day to inject them? Currently my partner is doing it but i don’t know what im going to do when he goes away with work. My family live miles away and my friends are all very busy and i wouldnt really feel comfortable asking them to do this.

Problem number two is the pain when injecting my legs. Oh lordy. I have just dragged myself across the room whilst muttering obscenities as it is too painful for me to move my right legs at all after injecting. i am so skinny and i eat like a pig so i can’t really help that fact. Injecting into my arms and back and stomach are painful, like a bee sting/small army of bees stinging me at once. I can deal with that. Never been one to be phased by stuff like that. But the pain in my legs (i guess from injecting straight into muscle) is unbelievable! Like someone is dousing my entire legsin sulfuric acid. I have sworn more this week than i have done in years! The auto-injetor is already set to 6mm and i dont think i should be injecting any shallower than that right?

Other than that, it is pretty impossible to get any sleep as every injection site is super swollen and mega painful to the slightest touch and my MS symptoms love to go wild when i don’t sleep properly. This is particularly annoying as i really want to get back to work. Living on ESA is the pits. Maybe these site reactions will lessen over time…?

Fun fun fun. Eeeeh.

[/quote]

Kathy have you tried manually injecting. I have always injected manually and don’t have any problems. Apparently the autoinject is more painful and sometimes causes issues with bumps in the skin etc.

Apologies just noticed you said you have had to stop copaxone.

Strange how different medicines affect different people, I was on Betaferon for a couple of months & my attacks went from 1 every few months to up to 20 a day! Nightmare. Changed to Copaxone & have been for over 7 years now, odd problem with the sting of the injection but much much better.