Question for Copaxone users

Everyday living
1

Hi all,

I’m due to have my first delivery of Copaxone on 23rd July and I’m just wondering how people manage with rotating injection sites. Do you rotate to all the different sites ( i’ve heard that there are 7 areas ) or just to the ones which don’t hurt so much!!

Also, has anyone suffered from lipotrophy?

Next question…Does having more fat on your body make it easier to inject and do you have to have a deep setting on the needle if you do have a fatty area? ( I’ve actually got ample fatty areas, I knew one day they might come in handy!! ).

Does anyone have any tips on reducing post injection site reactions and has anyone experienced post injections reactions like breathlessness or chest pain. These reactions were the only ones my neuro actually mentioned might happen.

I’m now off to buy myself a mini fridge as my main one always has too much food in it to fit my Copaxone in !!!

Thanks

Anne-Marie

2

Hi again

I forgot to ask in my post, does the starter kit come with both a manual injection and an autopen. I would rather use the auto injector but I’m not sure whether you have to request this especially.

Thanks again

Anne-Marie

3

hi anne-marie

to inject manually you just use the syringes. i never have (too chicken).

i rotated to all 8 sites for the first 2 and half years but now i skip my stomach because it had started to hurt.

sites are: back of upper arm, stomach, thigh,buttock. left and right sides makes 8 sites.

just say arm, arm, tum, tum, leg, leg, bum, bum

ms nurse and neuro said its ok to skip sites as long as i get my daily jab.

you’ll be glad to know that in my opinion a bit of fat is helpful.

my gp explained that the stiff leg side effect was because i wasnt injecting deep enough.

i leave one box of copaxone out of the fridge (it has a i month life at room temperature)

so use your mini fridge for the gin and tonic

good luck

happy jabbing

carole x

4

hi anne-marie

ive been on copaxone now for about 7 months i say that because i forget things a lot,

but i do know that the starter pack comes with both auto inject and manual, i didnt choose my ms nurse did and im glad she did , me terrified of needles used the rebif auto injector, she told me not to even look at the auto injector because id be fine and it was easier, whod have though i was able to do it myself first time and then carry on like id never been scared, haha,

i alternte all 8 sites my husband does mybum (more like hips) and the backs of arms,

at first they sting coolpack helps and in time for some reason it gets better it never seems to bother me, the red mrks and the itching can be a little annoying but that gets better after a few months too,

Honestly its not as bad as it seems, make sure you do it when your relaxed too it does help, and take it out of the fridge about an hr before use or longer xx

i have noticed that its better in the fattier areas tooxx

s for the lipo thingy a little bit not sure what to do about that one xx

sami x

5

Hi anne-marie,

The skin site reactions can be a bit scary at first, but they don’t happen much after the first few weeks.

I have always used the autoject device. Get the thing in position and watch the sweep hand on a watch, when it passes the next marker (for each five seconds) pop the release in with my thumb - twenty seconds later take it out (that is straight out - don’t drag the nedle sideways). The big trick is to make it a routine and build that into your daily routine. I use a setting of 8 all the time (did try 6 for my thighs, but went back to 8). A bit more fat does not hurt, but ladies have a touch more fat under the skin anyway. In a year, I have only had a few moments that could be called “breathless”, only lasted for a few seconds (not enough to bother about).

Some people use an ice-pack on the injection sited, and I think some have tried an anti-histamine cream. I have no expeience of either of these myself.

My own technique is to fill both the insulated bags you get in the kit, and put them into the larger padded bag that goes into the box that also comes in the kit. You use syringes from one of the padded bags as per the day marked on the bag. On Monday morning, start on the second bag and refill the first. Put this behind the bag you are now using. This way you always have some syringes slowly coming up toward room temperature. The one you are goung to use that day can be brought up to body temperature by curling your fingers round it for a few seconds.

The tirk I found to make life easy is the lollipop stick (although I use a coffee stirrer). Take this flat bit of wood, cut the end off at an angle of about 10 degrees. Now you can use the slightly pointed end to push the syringe into the front body of the Autoject instead of having your finger down inside. It is just that bit easier, and you are not pushing on the syringe plunger at all.

Do use the diary provided to help with the site rotation - when it is full, the Copaxone Helpline will post you another. All this might sound complicated, but it only adds about 5 minutes to my morning routine. While I am waiting for the slight stinging to stop, I usually check my e-mail (and other routine computery things). Hooking up the FES takes more time.

Geoff

6

I always manually injected Copaxone - more control! I was on it for 4 years, injecting in the morning as part of my getting up routine. It kept me pretty much relapse-free for 3.5 years so I’m a fan :slight_smile:

I never had an injection reaction (the heart racing etc thing) and I also didn’t get lipotrophy. The autoinjector came with the rest of the kit so, unless that’s changed, you’ll get it without needing to ask.

I found that injecting into fat is much easier than injecting where there isn’t any - I always found that getting close to muscle hurt a lot more! Saying that, pretty much all of the injections left red marks and occasional bruises, and they would often be itchy and/or sting for a while afterwards - nothing serious though, and not really noticeable over getting up, getting the kids up, etc.

I kept all but seven syringes in the fridge. I used a box the nurse gave me to keep the seven in my bathroom cupboard. I filled the box every Sunday, using the last one on Saturdays. (Btw, Copaxone is OK at room temperature for up to 30 days.)

You can pretty much do what you want with injection sites. I went clockwise: Sat = left thigh, Sun = right thigh, Mon = right hip, Tues = right stomach, Wed = arm (I alternated because they were more painful), Thurs = left stomach, Fri = left hip. I gave up on the diary after about 2-3 weeks because it was so simple to remember. There’s no need to do all the recommended areas - if need be, you can just inject into your thighs or stomach or whatever - but it’s best for your skin to rotate as much as you can.

You might be surprised at how little space the Copaxone takes up in the fridge (especially if you keep some out) so you might find that the mini fridge is best dedicated to the gin and tonic, as Carole said!

I hope it goes really well for you.

Karen x

7

Hiya Anne-Marie

I inject manually, though I have tried the auto-injector thingy too (the noise makes me jump and pull it out too quick DOH!).

When I started on copaxone (3 years ago) I really struggled with it, I’d been on Rebif before and never had a problem. I found that it really hurt after the injection, so much so I would be in tears. The Copaxone nurse came to see me and was a great help… she was happy with the way I was doing the injections but thought I was a bit allergic to it, hence the pain and the big red lumps and bruises. She advised me to take a 1-a-day antihistamine for a while and to use the gel packs, warm or cold before and after injecting. I found that a warm pack before and a cold pack after, really helped. Once my body got used to it (about 6 weeks) I stopped the antihistamines.

I also got Emla cream (and the plasters to put over it) from my GP, it’s the stuff they use in hospitals to numb the area. I got this because I’d developed a bit of a phobia and REALLY struggled to push the needle in. It’s a bit of a pain because you have to put it on an hour before you inject, but it really helped me get over that fear. In the end I became allergic to the plasters and had to stop using it but by then I was over the fear and managed fine without it.

I’ve never had the heart beating fast reaction, I’m sure I will one day but I’ll deal with that if/when it happens.

I was told not to inject my arms because there wasn’t enough fat there, but alternate all of the other sites each time. I asked the Copaxone nurse to drawer x on my skin on the sites I should use and took photos to refer to, this really helped at the start. Once I got used to it I didn’t need to refer to it any more.

I’ve got big dents on my legs and smaller ones on my tum, my neuro told me to miss those sites out for a while but that didn’t help so he told me to change to injecting every other day, which is what I now do. The dents are still there (always will be I think), but they’re not getting any worse. They started to appear after being on it for about a year.

The biggest bit of advice I can give you is to make sure you keep your skin in good condition. Use Bio Oil or a soothing body lotion the day after you inject and massage the area well. If your skin it well moisturised, the needle will go in easier, however you inject.

My neuro told me that my experience was definately NOT ‘the norm’ and most people don’t have site reactions as bad as mine. I’m glad I stuck with it though as it’s working well for me, with only 1 or 2 small relapses a year (I was having bad relapses every 6 weeks when Rebif stopped working).

Sorry if I’ve gone on a bit! Good luck.

Sue

x

8

Hi

I’m new to the forum and haven’t posted before, but have been lurking in the background reaping the benefits of all your sage advice.

I started Copaxone three days ago, and was really dreading it, expecting to suffer terrible side effects and hate the needles. Did the first one at clinic with the MS Nurse, the second in my bedroom with dh supervising, and yesterday just nipped upstairs and did it on my own. In fact my dh decided to remind me about half an hour after I had done it - was very surprised it was all over.

Yes it can be painful, but its not the needle that I find hurts, but about two minutes afterwards, I get a burn which is in the surrounding area which is a bit like a cramp crossed with a bee sting - really bad description sorry!

The autoinject makes it really easy to do - I did the tops of my arms first and then tried my thigh yesterday - thigh was more painful for me.

When you get the kit delivered, you will get a DVD in there with it with lovely instructions on how to inject it - seriously worth a watch, just remembering that it is produced by the drug company and is a bit of a sales pitch. My ms nurse commented that a large number of people don’t take the time to read anything or watch the DVD as they are very overwhelmed by it all.

Taking drugs of any sort can be horrible (I certainly prefer these injections to the antibiotics I once got from a dentist that made me vomit everywhere) and I have found that for me the anticipation is worse than the experience.

Hope this helps

s

9

Hi all,

Thanks to all who have replied, it really helps to gather what tips I can to make it all as easy as possible. Unfortunately I’m the sort of person who nearly faints /faints whenever I have to have an injection, the nurse at my gp’s said that I must tell any health care professional to make sure I am lying down before they inject me!! ( she’d just had me passing out in her treatment room !!! )

People will probably think that I am very strange choosing copaxone because of the frequency of injections but not getting the flu like symptoms is very important to me and also sometimes I can get very gloomy/despairing moods so I thought the betaferons might make me worse.

I’m just going to bite the bullet with the whole injection thing and my hubby has said he will help ( just hope he remembers to put his specs on !!! )

Thanks again

Anne-Marie

10

Hi I apply firm pressure to the place I’m injecting 1st and don’t use the auto device, I like to be in control. It is good to massage the area well and keep the skin in good condition. I can’t do arms, i have noticed swelling in my inguinal glands and the doc reckons it could be related to the copaxone. I’ve never had the heart palpitations. For what it’s worth It is my belief that a calm disposition and stress free life is worth all the drugs you can take. I’m a year in to copaxone and relapse free so far. Best of luck with it.

11

Hi again everyone,

Well, the copaxone has just arrived, I’m reading the leaflets supplied and will watch the dvd later. I notice some of you have metioned gel packs warm/cold. I don’t appear to have any gel packs in my kit, is this normal? Where would I buy them?

Also do you have to use alchohol wipes for your skin, I’m not sure whether they were supposed to be in the kit, I haven’t been supplied with those either. I have some alchohol hand gel in a bottle, do you think it’s ok to use that?

I feel very strange looking at the medication, it all seems so real now and I’m so anxious about it. The people at copaxone said that someone would contact me reference how to do the injections so I’ll wait a couple of days to hear something.

I am so very nervous espeicially reading all the common side effects aside from the ones I already knew might occur.

I’ll let you all know how things progress

Bye for now

A very nervous Anne-Marie xxx