Last reply 1 month ago
Started Copaxone – tips from MS Nurse!

I’ve just started Copaxone and did my first injection with the MS Nurse a few days ago. I just wanted to share some of the advice she gave me in case it’s of use to anyone else, as some of it I hadn’t seen mentioned before.

Firstly, she said she doesn’t like the CSYNC autoinjector because it leaves a mark on your skin due to how long you have to press down on it for and the trigger sound is so loud and dramatic. Obviously this is all down to personal preference, but she advised me to just inject straight from the syringe. When I asked how far to insert the needle she said all the way, and if I decide to use the autoinjector set it to 12 because deeper is better – this I was a bit confused by as I thought if you do it too deep you risk going intramuscular rather than subcutaneous which is more painful (I have a normal BMI/fat amount)? I’ve also read other people say they alter the depth depending on the injection site, but she said it should be left at 12. Does anyone else inject this deep?

About 5 minutes after the injection (which was fine) it felt exactly like a wasp sting, which she said it would feel like every time. Because the area around the site had a slightly raised itchy red rash she suggested taking an antihistamine tablet 1 hour before to help with this. She also suggested antihistamine cream, aloe vera or witch hazel gel to soothe the area.

24 hours after each injection she advised massaging the area with a nice oil to help prevent hard tissue forming, and something I’ve never seen mentioned before – using a small vibrator (yes that kind of vibrator) to help break up any hard lumps that form under the skin! Interesting.

Another thing she suggested was Arnica tablets/cream to help with any bruising.

Overall, it was a very helpful appointment, but keen to know other people’s thoughts on needle depth?

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rhona74
2 months ago

Hi @moglula
I’m on week 15 of Copaxone. The sting!!!😱
I only use the auto inject for my hips. Depth of 6 I was advised. I did try the auto inject on other sites but found doing it manually better for other areas. I have noticed I bruise on the right side of abdomen only. Sometimes I put Aloe vera on and I put ice pack abdomen and thighs. I hope it goes well for you.
I’m just on Copaxone until things settle with Covid, then plan on changing.


moglula
2 months ago

Hi @rhona74

Thanks for your reply! When you inject manually do you push the needle all the way in? I’ve done both sides of abdomen now, going to try back of arm today 😬

I’m on Copaxone at the moment because I’m trying for a baby, not sure how I feel about staying on it long term, we’ll see!


rhona74
2 months ago

@moglula, yeah all the way in and I count slowly to 10. I have never used arm sites.


itsmewithms
2 months ago

I was on Copaxone for many years and it was stressed that it was a subcutaneous injection (intended for into fat layer under skin) and not IM (intra muscular). Too deep and it stings was the rule. I would actually kind of position my supporting hand to make sure I didn’t have to press so hard against myself to bury the needle. I was on it for like 9 years so ended up with some dimpling in the fat in my inner thighs as that became my “favorite” spot to take it.
https://www.copaxone.com/injection-assistance/how-to-inject

After taking it for years I was encouraged to put a warm compress on the site afterwards and vigorously rub the area to diffuse the shot. Maybe that would have prevented the bumps and dimpling but now after being off it for years they have gone away.

It was about all there was when I was first Dx so eagerly took it but stayed on it as new DMTs were introduced as my Neuro wanted them to have time on the market before I switched. I still had attacks over the years and more lesions. I wish now I would have pushed harder to transition to a more effective drug as all the damage lurks under the surface until you are older or your reserve drops. I’m now on Ocrevus so hope progression is stable.

There are situations for Copaxone as Dr Boster covers above but encourage you to look at the full range of options out there if you continue to accrue lesions- Good luck-


moglula
2 months ago

Hi @itsmewithms, thanks for your reply! Good tips. I think I will look at other DMTs in the not too distant future, I’m on Copaxone at the moment as I’m trying for a baby x


itsmewithms
2 months ago

It sounds like you are on the right DMT for the time then. I was Dx when my daughter was 2 and was only planning on one child anyway. Also be aware of any issues with breast feeding. Not sure if you intend that (I did and there are health benefits to doing it as well for both you and baby) but that may influence when you’d want to change to a different DMT.

I had a blind spot in an eye in my second trimester that led them to suspect MS but at the time they weren’t sure if MRI’s caused birth defect issues to the developing ear (I think they have said that it is safe now). The spot went away in the third trimester with it’s wonderful hormones. i think many MS issues do. Now when I describe the blind spot the Neurologists say it likely wasn’t Optic Neuritis at all but more likely a long Optical Migraine. Basically being pregnant can cause funny things to happen to a body ;-0 The spot wasn’t serious or large. Just odd and it went away to never come back post-baby although I have had similar brief episodes now close to 20 years later when under stress.


stumbler
2 months ago

@moglula , the makers of Copaxone beg to differ with some of the things advised by your MS Nurse. Their advice is here :-

https://www.copaxone.com/injection-assistance/how-to-inject


moglula
2 months ago

@stumbler I know! She also said to ALWAYS pinch the skin when using the autoinjector and the website says to NEVER do that. So confusing.


stumbler
2 months ago

@moglula , we’re all different, so it’s what works for you…….


mich
2 months ago

This is really interesting.
I’m just starting week 4 of copaxone & on it for the same reason as you, we want to try for another baby soon (ish!!)
I was on ocrevus which I really liked but was told it needed to be out of my system for 12 months before conceiving so I’m trying this.
I’m getting a reaction every time I’m injecting & it’s turning into a swollen hot red rash which eventually turns into a bruise.
I contacted the nurse & she said people try warm & cold compresses & take the medication out of the fridge for a while before injecting. That helped with the sting but not the reaction afterwards so will try what you’ve written!
Thanks for the advice 😊😊😊


itsmewithms
2 months ago

I wasn’t really injected into pinched skin but would try to kind of create bump to inject it just under the surface…as told that wasn’t good for me 😉 over time (like 10 years) I developed dimply skin and kind of like “scar tissue” under the surface and when I tried to inject into one of these dense areas it seemed like the injection would kind of clog. I think, after all that time, my body was kind of worn out of being jabbed all the time. Until the last couple of years it was daily!

Of course after all this I am told it would help to rub the area vigorously after the injection to get the drug to disperse. Not sure if that would help…so some warm compresses and rubbing…you could see if that helps. I thought an infusion would be such a bother to basically set aside a day every 6 months but now I prefer that to 10 minutes at night several times a week that I dreaded…

you could see if that makes it easier 😉 and prevents damage from accumulating


moglula
1 month ago

Hi all! It’s been 2 weeks for me now and for the last 3 injections I used the autoinjector – so much easier IMO. I find that engaging it with one hand and pressing the button with the other means I don’t have to press it into my skin too hard or pinch up the skin (it’s possible to engage it and press the button with one hand but a bit more fiddly!)

I’ve been taking an antihistamine an hour before and whilst I do still get hot, red site reactions but they don’t seem to last long. The only site that’s been problematic so far has been the top of thigh – can still feel a lump and it’s still a bit itchy almost a week later. I think a bruise might be coming too. Time to try the Arnica cream!


thenewguy
1 month ago

Onto my 10th week or so now – I suppose I was a little over-cautious and would not inject deeply out of fear of it going too far. I have isolated 6 distinct sites that I rotate around, using the autoinjector.
-(thighs (7-8mm), but still not mastered it as thigh fat really varies as you go from the knee upwards).
– abdomen (8mm).
– upper right quadrant of buttocks (6-7mm)!).

The length of the needle (using the autoinjector) for me goes between 6-8mm as you can see. First few would sting, now I don’t really feel it. I guess I am fairly lean on the grand scheme of things, but I have some padding to back me up.

Interesting that you ask, because I made a post asking about needle length too. Only site I really have trouble with is my thighs because I seemingly inject too shallow and the medicine is stuck in the skin for 2 days or so (can literally feel the fluid beneath the skin), but otherwise, I have injected too deep on only one occasion too. Only recently noticed this though.

I never had a face to face appointment, nor a follow-up so have had little guidance. I would recommend keeping a log (i.e. I use an injection tracking app) and each time I inject, I just add another post onto there, with details of needle length, any side-effects and such (and to make sure I am only injecting in that place once a fortnight). That way, you will be able to see what length suits you, is least painful, and most effective. First few weeks are the hardest, then it’s smooth sailing. I also take out the needle around 30 mins to an hour before injecting (because I am aware of subcutaneous insulin injections being painful directly from the fridge, so I would assume the same for this one).


hope33
1 month ago

I have been using Copaxone for about 5/6 years now and never auto-injected because of advice that it could cause more lumps and bruising. I have always manually injected with no major problems – yes the odd stinging which gets better and sometimes a lump which never stays for good. Every Saturday I take 3 injections out of the fridge and keep them in a draw or table by my bed ready for the next week. I heard that injecting at room temperature was better than taking straight out of the fridge and injecting at a cold temperature. Injections, I think can last a month at room temperature. I inject with the needle all the way in.


moglula
1 month ago

Thank you for sharing your experiences all, I might switch back to manually injecting as I’ve got little bruises/hard lumps in 3 of the places I used the Csync. It’s the hips and thighs that have bruised for me, belly and backs of arms are fine (sting a lot but no bruises or lumps). Will have to experiment to figure out what works best I guess.

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