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Anonymous
3 years ago

I’m surprised copaxone is the chosen DMT given how active your MS is.

Its not that effective compared to others on the market but the safety profile is good. Its daily injections. No flue like symptoms but injection site reactions are common.


danielvicentte
3 years ago

Rebecca, it’s a little bit strange at the start, but just in a short period of time you should feeling better.


rachhh
3 years ago

I’m curious what you are on currently and the rational for going with Copaxone. Copaxone is really the medication of least resistance. It’s given for those who have less severe cases of MS or as the first drug used to try to see if you can live without something stronger. I was treated at the Mayo Clinic in the US and they were STUNNED to hear I was on it with how severe my first few months post diagnosis were. Their words… “It is the least effective drug you can possibly be on.” It does have the least number of side effects, and is the least “toxic” of the medications, but if your disease is very active, I would run FAST from Copaxone. I’ve been on it a year, and two flares in the last 60 days was enough for my doctor to say “no more.” I’m switching to Tysabri.

To answer your actual question, for me the needle isn’t bad, but the medication burns. Imagine a bee sting every time you inject. Also, the autoject can make it worse. I haven’t used it for about 8 months. That being said, I have no other side effects from the medication. Just the pain of the actual injection. Ice helps. For the love of god, don’t rub it! It will itch, don’t itch it. Try not to move the solution around for at least an hour or so. Heating the area before can help, but don’t ice before. And take the shot out of the fridge and let it go to room temp before injecting. I do the 3/week dosage so I take a pack of 3 out on Sunday night and do the injections Monday, Wednesday, and Friday. They medication can survive at room temperature for a month I think. Let the alcohol from the swab dry completely, otherwise that can sting.

If traveling, ask Shared Solutions for a travel pack to keep the glass vials from breaking. Also, never check the medication in your luggage. Always carry it on board. The freezing temp in the bottom of the plane will kill the medication. And ask them for the needle clipper… it clips the needle point of the syringes and contains them so you don’t need a sharps container.

When injecting the legs, draw an imaginary line down the center of your thigh and always inject to the outside of that. The closer you get to the top or inside of the leg, the more lightly you will end up with these lovely purple spots that looks like bruises and take FOREVER to go away. Mine took about 8 months.

Never inject the same spot more than once a month. The medication, over time, breaks down fat cells so you end up with little dimples in the fat where you inject. The more you rotate, the longer this takes to happen. You will find spots that are easier to inject than others and be tempted to go back to those spots frequently… don’t. Eventually, it can harden and you won’t be able to inject there at all.

Feel free to ask me questions.


danielvicentte
3 years ago

@rachhh: I don’t agree totally with you .
In my point of view the autoject makes the process better because we don’t need to see the needle and that help me a lot.


beccygreeneyes
3 years ago

wow thanks so much. It hasn’t been delivered yet. My MS is active but i am soon sensitive to meds they want to try this first. I took steroids almost 4 years ago and nearly ended up in hosp cos of the reaction! Hmm fingers crossed i get used to it!


janep
3 years ago

Hey Rebecca, welcome back! Sorry to hear that you’ve had such a run of relapses 🙁 I was on copaxone for a couple of years and got on very well with it as there were no side effects, just some skin reactions to the injections. i won’t lie, the first few injections were a bit of shock but one of benefits (okay, probably the only benefit!) of a daily injection is that you very quickly get used to it and it soon becomes part of your daily routine. I was also quite surprised initially that you had been steered towards copaxone after such a flurry in disease activity but if you’re very sensitive to medication then that’s sensible as inevitably the more effective drugs are also more powerful and have far more side effects. Also, everybody reacts to drugs in different ways and the stats on efficacy are based on averages so just because copaxone is less effective than say tysabri overall, it might be great for you- I know people that have been on it and completely relapse free for years. And if your body tolerates it well that becomes more and more likely as you’ll be wiling and able to keep taking it. The only reason I switched off copaxone was because I was getting lipoatrophy on my legs (despite almost obsessive site rotation!), I was relapse free for about 4 years. Good luck with it and keep us posted Jane xx


beccygreeneyes
3 years ago

Thanks so so much for the reply! Yea they want me to start on mildest?

Sorry the skin reaction was bad Hun I am dreading it! 🙂 but at least u felt it helped! Xx


janep
3 years ago

It definitely helped, I was quite sad to come off it in a way as it really agreed with me but my stupid legs didn’t agree! It’ll be a bit of trial and error to find how it works best for you, I would use a warm gel pack before the jab in my legs (as I have oddly cold legs!) and a cold pack afterwards it if was a ‘sting-y’ jab. I sometimes used to get hard little lumps under the skin which was apparently a sign that the drug wasn’t dispersing properly, the warm pack in advance can help with this but when i had lumps I’d use a battery powered massager to help break them down. You’ll be fine, it’ll take a bit of getting used to as self-injecting is very unnatural and weird at first but before long you’ll barely think about it. Also, chat to your nurse about auto-ject vs not and adjusting the settings for the right depth for you. I used an autoject the entire time I was on copaxone and then did manual avonex jabs and part of me wonders if I’d have been able to stay on copaxone for longer if I’d been brave enough to inject manually but you’ll find the best system for you xx


rachhh
3 years ago

Daniel, I don’t have a problem with needles so that’s not a consideration for me. I just know, for me, the autoject was painful and gave my hard lumps, like jelly beans, under my skin that would last a couple months. So, I stopped using it. No more jelly beans.

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