Last reply 4 months ago
Copaxone… thoughts?

I have recently started on this medication which involves having to inject myself daily. Not an easy task in itself. I’d be keen to know and understand the side effects others are having when using this drug. I’ve been on it now for two months. Might be too early to say if I have noticed any difference but I struggle with the pain after immediate Injection. Is this the same for you? How do you alternate sites? Any recommendations or tips for managing the side effects? Many thanks x

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


jamoranto
4 months ago

My only thoughts and advice for copaxone injections is…do it first thing in the morning and get over it and get on with your day.
Best
Jorge


gary_a_preston
4 months ago

This was my first dmd. The injections get easier except the stomach. After a year i stopped and went to gilenya.


pwilsonlondon
4 months ago

Thank you @gary_a_preston and @jamoranto for your replies. I do feel this DMD will not be a long term option for me due to the pain I get upon injecting. I wish you all the best with your treatment options.


jane_watts
4 months ago

@pwilsonlondon

I was on Copaxone for 3.5 yrs.
Go to your health shop ask for an orange secnted gel it’s in a tube can’t remember name of so long ago this eases site reaction.

Alternate injection sites you’ve over 30. I found lower tum the easiest however the other sites not so easy.
I didn’t inject my upper arms used only thighs, tum above & below navel, bottom too.

Were you not given a body site map to inject then crossing of which site you used daily?

I never suffered side effects until Copaxone gave up working suffering nausea, severe fatigue, loss of appetite,
No energy whatsoever. I stopped the Copaxone on my own advice, was fine felt great no kick backs there is no withdrawal with Copaxone which was what I liked about it.

Copaxone can be administered 3 times weekly at a 40mg dose but your neurologist needs to change you over. I don’t know much about this 3 times weekly as it wasn’t built when I was injecting daily Copaxone.
Has to be your decision really.

You’re on daily @ 20mg. At least that’s what it was.
Site issues are caused by the thinness of the needle the thinner the needle the sorer the injection site.

I injected early morning.

Best of luck,


arya
4 months ago

@pwilsonlondon
Hi, I’ve been on Copaxone for 2 years now. I usually inject myself in different sites: stomach, arms, hips and legs. On the official website of the medication you can find pictures to help you with the exact area of the body you should choose. For examples, when injecting your stomach you should stay away from your ribs and you shouldn’t be very close to the belly.
When I started, I also looked on Youtube: there are loads of useful videos you can watch to help you with the procedure.
I had no side effects AT ALL: the injection is annoying, but if you do it early in the morning and go on with your day, you’ll forget about it soon.
Did you know about 40mg Copaxone? It’s a different dose, 3 times a week. You could speak with your doctor about it, if you want.
Unfortunately, I’m going to change DMT soon because it’s not powerful enough for me, but my advice is to try and improve your injection technique and give it a try, because it is one of the safest drug for MS (though it’s not the most effective, of course).
Xx


pwilsonlondon
4 months ago

@jane_watts and @arya Thank you both for your feedback and suggestions. I tend to inject stomach area but making sure I am not too close to my belly button. I do not rotate sites to other areas of my body but I do alternate from left to right side.
I started on the 40mg dose three times a week however I found the side effects to be so severe I went to the daily dose. I am very slim build on the side effects would mainly be local to the injection sites. I would come up in a bee like sting reaction and very swollen in that area. Like a golf ball. 😬 I shall stick with this and see how I get along. Once again I wish you all the best on your MS journeys.


arya
4 months ago

@pwilsonlondon Being slim could be a problem with Copaxone, you’re right. Hope it gets better in time.
Wish you the best, too!


jane_watts
4 months ago

@pwilsonlondon

I agree with @arya I’m slight build extremely light & yes the injection sites just like you hense why I suggested the health shop.

My stomach muscles started to sink in as did my thighs, where was sites.
Mind that keep a look out. Here I am years off Copaxone my muscles did not reform & I used a different site each day but there are 365 days annually, so plz keep an eye out especially since you’re slim build such as myself.
Do you measure with the long finger knuckle at navel button inject area at the top of your finger. Top of finger pointing down towards legs ?

I Kno sounds stupid but I was trained into self injecting, I’ve a needle phobia auto jector while good needles & I don’t see eye to eye. 😂
Best of luck keep well.


pwilsonlondon
4 months ago

@jane_watts thanks you for your reply and also the recommendation. I shall ask at the pharmacy to see if they have any gel to relieve the sais symptoms. I will also use the finger knuckle trick to ensure I am rotating and injecting in the right sites. Sounds like a winner. How did you know when to stop and you say your muscles sank in but could you share (only if that’s ok) what to look out for in advance of this happening to me?
Many thanks as always and best wishes to you. P x


pwilsonlondon
4 months ago

@arya Thank you for your kind wishes and the same to you of course x


jane_watts
4 months ago

@pwilsonlondon

I had a perfect reply it flew off 🙄

Ok I’m giving you symptoms after 3.5 yrs of injecting Copaxone.

Nausea

Excuse me plz Diarrhea each morning

Blasting headache most days

Eyes couldn’t handle sunshine

Dragged myself around incl work

Totally exhausted requiring more sleep

Aches & pains

As the evening wore in I was perkier

feeling ‘normal’

This went on for my last 3 weeks of injecting Copaxone.
I’d had enough, stopped injections
& Hey presto…. I had bags of energy to spare, all the above symptoms ceased immediately.

With your muscles.

Check for a small ding like what you’d notice in the body of a car.
That’s what then becomes a dent
Again like car.

This is what you need to keep an eye out for, neuro etc won’t tell you these things as they don’t know til like me when I asked, like I said I moved sites daily.

Your tum, hips, thighs are more delicate then we think.

Keep smiling

Always here if you’ve any questions

I’m not on any medication now for quite some years.

Oh it was the Copaxone nurse that trained me to inject

I’m an open book regarding Copaxone

Keep the sun shining in your heart x


dominics
4 months ago

@pwilsonlondon

Evening,

Copaxone was my second DMT c. 9 years ago. Curious to know why a newly diagnosed young chap in London was put on it. Not the usual London choice these days unless there is a specific medical reason.

It is a faff as it is daily. The reason I stopped was, after Rebif being no problem for several years, the injection site reactions. Cool gel packs help, carefully mapping, experimenting and varying the sites helps. I always got the jab out of the fridge and popped it under my armpit to warm up to body temperature, as cold jabs of any kind are bloody painful. Soothing gels or something else etc. My layman’s view is that it either works or you or it doesn’t.

For far less shag and hassle, there is Ocrelizumab (6 monthly infusion that is generally v well tolerated and one of the most efficacious meds) or Tecfidera which is oral, twice a day.

Copaxone is v old skool these days!

Best,

Dominic


pwilsonlondon
4 months ago

@dominics and @jane_watts

Thank you both for your replies. Indeed this medication type is very old fashioned but I was selected for it due to another medical condition I have that requires me to protect my liver as much as possible. It is of the understanding that this drug is one of the only ones safe for your liver.

I wish both of you the very best with this condition.

Thank you Jane for your kind words and thank you Dominic for your suggestions and advice.

Have a great evening x


jane_watts
4 months ago

@pwilsonlondon

My pleasure P

Yes you’re advised well Copaxone is THE safest, no repercussions.
Hence my choosing same all those years ago.

If you need us we’re here.

Big hugs to your puppies.

Stay in contact to let us know how you’re getting on.

Remember, always have the sun shining in your heart.

Take care. x


pwilsonlondon
4 months ago

Thank you @jane_watts for your kind messages of support. I do find Copaxone to be the safest option however, the side effects like you say can be tough. Especially stomach cramps, the need to use the toilet more often due to an upset stomach etc. Where about in County Mayo are you based? I only ask as I had a very good client who owns a pub there. I believe its quite a small place and hence most people may know each other 🙂 I hope you have a nice day and will pass your hugs on to the pups. P x


dominics
4 months ago

Sounds like you have a great team. Tricky balancing everything to achieve the best outcome for you.

Working and keeping two Chow’s has to be hard! They are exuberant hounds who like plenty of exercise if I recall the one I knew.

Stiff upper lip, KBO etc 🙂


pwilsonlondon
4 months ago

Thanks @dominics – Actually one of our Chows is a lazy bugger lol but I’m not complaining 🙂 They are wonderful and very loyal hounds that have helped massively overcome my diagnosis. Do you have dogs?

Best, P


dominics
4 months ago

@pwilsonlondon no dogs at present as we live in a flat. ‘My’ dog lives w daughter and ex-wife atm. 17y old Jack Russel! Happy as Larry, but the rabbit murdering days are behind him. Grandmother was a specialist dog breeder of the stupidest dogs in the world, King Charles Spaniels.

So yes, plenty of hounds since I can remember. We want to get a house and have a few Border Terriers. I am trying to start a living writing etc.

Br, Dom


jane_watts
4 months ago

@pwilsonlondon

I’m Lahardane based 15 mins drive from both Castlebar or Ballina. Westport is further but a lovely town. Nearest city Galway I was raised in Roundstone Co. Galway all the coast so miss sailing. Fishing. Swimming in Sea, mountain climbing.
Mayo yeah it’s small the 4 towns are small enough but Ballinrobe feels like all buildings are squashed in lol.

I’ve a shih tzu, a golden lab which I rescued she was 5 weeks old & a cat again I rescued she was approx 2 hrs old my vet taking a wise guess Maggie our cat I hand raised. They’re all healthy so intelligent & loving. They make a person smile. So I understand where you’re coming from with yours.

Let me know the pub name you say small wondering if it’s the small pub in Westport …. John Wayne & Maureen O’ Hara frequented during the making of ‘the Quiet man’,

Yes side effects can be a pain.

Thank you for your replies to mine

Enjoy your day, let the sun shine in your heart always, hugs to your 2 chows.

Chat later. Keep on smiling x 😊


hope33
4 months ago

pwilsonlondon, do you autoinject or manually inject? I have been on Copaxone for 3 years and have never autoinjected because I heard it can be more painful than manual injecting and causes dips and raised bumps in the skin. I haven’t had any problems injecting 3 times a week and always inject just before I go to bed. By the morning it is a distant memory. Also make sure your skin is well moisturised. Wishing you all best.


hope33
4 months ago

One other thing, I do not inject straight from the fridge but take a weeks supply out of the fridge (3 injections) and leave in bedside drawer at room temperature ready for use the following. Apparently injections can stay out of fridge for a month.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.