Last reply 2 days ago
About to start Copaxone!

Hi guys! Not been on for a few weeks been a mad couple of weeks. I’m due to start my first treatment of Copaxone in a few weeks. It has been delayed to my body having a bad reaction to the carbamazepine I had been prescribed for my lhermittes. Full body rash, really bad fever, temperature and vomiting for 6 days straight. Over the worst now but my bloods are all abnormal including my liver enzymes. So hopefully after my re test on the 9th my bloods will be back to normal for me to be able to start the Copaxone. Anxiety is kicking in due to having to inject myself 3 Times a week. Can anyone offer any advice to this? Does it hurt? I’m not looking forward to side effects and praying I’m not affected as much as some users are. What are everyone’s experiences with the side effects of Copaxone?
Thank you x

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bonang1975
1 month ago

I was on it for about 3 years my biggest side effect was headaches so i was living on painkillers but everyone is different. Best of luck 👍


look
1 month ago

Sorry to hear of your horrible side effects from the drug you’ve been taking for L’Hermittes – sounds awful. I was on Copaxone for six years in the UK and US and a good thing was you didn’t have to have blood tests for liver function etc. what really helps you is to inject using the autoject pen -try not to worry too much; once you’ve done one injection it won’t feel so overwhelming I’m sure. You just have to keep an eye on the injection sites. Good luck with it all.
Loo-K


stumbler
1 month ago

@jadeshelley , wow! Carbamazepine for L’Hermittes! That’s a bit hardcore. You must have had it bad, as you can normally control it by not looking down too far!

Let’s hope your bloods settle so that you can start the Copaxone before the anxiety creates too big a hurdle.

You shouldn’t worry too much about the injections. The thought of injecting is usually a lot worse than the injection itself. However, injection site reactions can be a bit of a problem, so disciplined rotation of injection sites is key.

There are various strategies used to manage the injection process. You can just click on the “Copaxone” tag, at the bottom of your post above, to access all the previous posts on this drug.

Good luck. 😉


jadeshelley
1 month ago

Thank you. And no my lhermittes doesn’t even bother me! My neuro didn’t ask me if I wanted any medication for it he just gave it me…. :/ I’m off it now due to the reaction and I’ve said I don’t need any other meds for it because it doesn’t bother me. X


smalltownpa
1 month ago

Good luck with the copaxone! I was on the 20 mg for over 10 hrs. Did excellent. The injection hurts some but doesn’t last long. Then they started me on the 40 mg which sounds like what you will be on. Hate to say it but awful side effects. Not at all like the 20. But according to my neuro, I am an exception. As far as his patients go. But why I am even telling you this is not to discourage you, but if you have similar problems with the 40, don’t hesitate to try the 20. I had multiple problems before and they have all been resolved. Can walk well again, motor skills came back, feel great. And that is what this is all about. To stop progression in its tracks. And the 20 mg copaxone is doing that. The autoject is simple. Easy to use. Just keep picking different sites. Keep track of them and don’t repeat for a wk. you will be fine!!!


smalltownpa
1 month ago

Oops meant 10 years.


hope33
1 month ago

Hi I have been on Copaxone for 2 and a half years with no side effects. I manually inject because I heard that autoinjecting can cause site reactions, itching, bumps and dips in the skin where fat is affected. Manually injecting doesn’t hurt. The needle is very thin and short. I inject just before I go to bed on a Monday, Wednesday and Friday. It takes about 5mins or less. I don’t use an ice pack but keep my injections out of the fridge for the week I will be using them so that they are at room temperature. There can be a light sting a few mins after injecting but that quickly disappears. Vaseline with aloe vera helps with any slight itching you may get in the first few days. All the best.


pikilily
1 month ago

Lol @smalltownpa.,. Was going to say that must be a record…:-)


shadowfox
1 month ago

Just wanted to stop by and say hey as I contacted my MS Nurse today to say I wanted to start on the 3x a week Copaxone so should be starting soon too! 🙂


jadeshelley
1 month ago

Thank you all for taking the time to reply! I guess I just have to wait and see don’t I as everyone is different and will respond different I suppose. I have anxiety anyways so waiting for something to happen kills me off haha. @shadowfox looks like we will go through this journey together then haha x


shadowfox
1 month ago

@jadeshelley Copaxone buddies lol! Have you got your date to learn how to do it from your MS Nurse yet? My appointment isn’t until 23rd July. Eager to get started tbh but not sure what to expect with it. All I want is to not feel tired and weak all the time! If it manages that I’ll be happy!


stumbler
1 month ago

@shadowfox , I don’t like to burst your bubble, but adopting Copaxone is an investment in your future.

Along with all other Disease Modifying Therapies (DMTs), their job is to reduce the frequency and severity of any future relapses. It won’t be able to fix symptoms from previous MS damage.

But, if you can stop your immune system from attacking you, your body may be able to effect some repairs.

I just didn’t want you to have false expectations. 😕


jadeshelley
1 month ago

@shadowfox I have been sent a letter from my ms nurse to ring her when I’ve had my delivery from pharmacy with my injections. However had a repeat blood test Monday and it’s come back abnormal still from being ill the other week. So have to wait another 2 weeks for another blood test before I can even start my treatment! Nightmare lol! X


shadowfox
1 month ago

@stumbler At the moment I don’t have expectations of what it will do, but I know DMTs aren’t a cure. If I can find some relief from my main symtoms as a result of treatment then great. If not, then I’ll just be content knowing I’m doing what I can to limit future damage.

@jadeshelley That’s annoying about your blood test but hopefully you can get started soon enough!


jadeshelley
1 month ago

I know yeah so annoying! But hey ho better to be safe than sorry eh! X


dan_saunders
1 week ago

I have just agreed to take copaxone, interested to hear how you got on. I too am apprehensive about self injecting!


jadeshelley
1 week ago

I finally have my training date for Tuesday. Very worried if I’m honest. Mostly due to the possible side effects…… I know it’s not guaranteed to get any side effects but after reading some horror stories it doesnt fill me with much hope!


dan_saunders
1 week ago

Hi Jade, yes there are always a lot of negative stores around, but I always think people are more likely to comment on a bad experience than a good one – hoping there’s a silent majority!

I look forward to hearing how Tuesday goes, and wish you lots of luck!


shadowfox
1 week ago

I started my Copaxone treatment on 23rd July and honestly it’s been no problem so far. I know it’s different for everyone but while it stings a little afterwards, I can barely see where i injected the next morning. I’ve had some more tingling sensations in my hands and feet since starting but I knew that might happen, and my fatigue is a little worse some days but that could be down to other factors. I have no issue injecting myself, once you do it a few times it becomes pretty straightforward! I use the autoject device which makes it simpler too. Don’t let horror stories put you off!


jadeshelley
1 week ago

@shadowfox I am so pleased that you are getting on well with copaxone! Gives me a little bit of faith not to always expect the worse 🙂 The dread of Tuesday is still with me but I think it’s become a burden emotionally to be honest! The whole woe is me sort of play in my head! I’ve got my sister coming along with me so she can learn to inject me if I struggle with certain areas or the auto inject but I’m sure I will get the hang of it…. well I have to really haha! Xx


shadowfox
1 week ago

@jadeshelley I hope it all goes well for you! I went to my appointment by myself cos my husband doesn’t like the thought of needles, I’m sure he would help if I really needed it but I’ve done all 7 sites myself so I know I can do it without help. Tbh I find something nice about doing it, I barely feel it and it’s good to know I’m doing something proactive to deal with my MS. Dont let the ‘woe is me’ voice win! 🙂


jadeshelley
1 week ago

@shadowfox I think I need to come up to ur level of thinking 🙂 I appreciate your positivity and I think it’s time to work on mine! Xxx


angieh
3 days ago

I am about to begin copaxone 40 mg as well. I guess that’s what it is because it’s three times per week. I am very interested to know how it goes for you! Keep posting! I am anxious but feel good I’m doing something!


jadeshelley
2 days ago

So had my first injection of copaxone today! Safe to say I was very nervous but my ms nurse put me at great ease and let me take my time before injecting. Not going to lie it did sting like hell and I had quite a bit of pain in my thigh where I injected which has become swollen and still very sore hours later. I went slightly dizzy after the injection but thatcould have been because the room was very warm and I had worked myself up all day! The injection itself I never felt which was so great 🙂 I have had no side effects other than the sore leg and swelling which is minor compared to what I was expecting! I am very happy with how today has gone and @angieh it really isn’t that bad 😌😌 hope yours goes as well as mine did! Xx

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