als12 10/03/17
Last reply 1 year ago
Copaxone

So I was diagnosed 3/1/17 and they are starting me on copaxone and I’m scared to death. Anyone on this medication please comment below and tell me about your experience. Please and thank you in advance.
– Alisa

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gemma87
1 year ago

I was on this when I first was diagnosed (2013) but had to switch to Tecfidera due to a relapse in March 15. My understanding and from my own experience is that there are no major side effects. Yes it takes a bit of getting used to with getting your head round with doing injections and you have to make sure your injections sites stay smooth but overall i found this a good dmd! If the capaxone worked for me i would go back on it tomorrow if i could. Initially you will find that the injection stings and leaves a bee sting like lump but this heals after a few days. (You really do get used to it and a good tip is to do the injection before bed so when you wake up in the morning the sting/itch has gone.)The sting is not as bad as it sounds and it gets less stingy each time you do it. Another good tip to reduce the sting is to make sure you let the injection warm up to room temperature after you take it out of the fridge. Good luck and i know its easier said than done but try not be scared of this dmd as I found it the more pleasent one to take xx


als12
1 year ago

Thank you so much! I really appreciate you responding! ❤


californiadreamin
1 year ago

I am not a dr but did you have other options for medication besides copaxone. My wife was diagnosed with ms in November and we went with Tecfidera. I ask because you said “they are starting me” and in our experience it’s important to make sure you have the facts and information to make your own decisions. There are a number of trade offs with everything but hopefully you are making an informed decision that you feel comfortable with. Definitely worth researching or discussing on forums like this if nothing else.


petlamb
1 year ago

@als12, Hello and welcome!

It’s your body, your choice. Are you familiar with the MS Decisions website? If not, you need to be – especially the Decision Aid, which will help you make informed decisions.

Copy and paste into your browser:-

https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions

Check it out and good luck. 😊


cameron
1 year ago

Agree with all the above. It would be worth asking your team why they are putting you on one of the lowest efficacy DMTs. Current thinking is ‘treat early and hard’, but judging from posts here not all neuro teams are following this. I was put on Copaxone in 2004 and it served me very well for eleven years, but in 2004, there was nothing stronger available. Had there been, I would definitely have gone for it, because IMO the MS needs to be stopped in its tracks. The good thing about Copaxone is that of the four ‘low-efficacy’ CRABs (Copaxone, Rebif, Avonex, Betaseron), it has the least side effects. No flu-ey reaction, chills etc, just possible skin reaction issues. Interestingly, its mode of action has never been fully understood. The CRABs aim to reduce relapses by an average of 30%, the newer drugs by upwards of 50% (and the most powerful being found to shut off the MS altogether in many cases). However, as I was told in 2004, relapse figures are averages and I did a lot better than 30%. In eleven years I only had three or four very minor relapses. Avoiding even minor flare-ups is vital because each relapse may leave some degree of permanent damage. A drawback for me, however, was the effect of the Copaxone daily injections over this time on my legs. I followed all the advice about changing injection sites, but nonetheless I have noticeable, disfiguring ‘dips’ in both thighs, where the fat cells imploded as a result of daily injecting (lipoatrophy). I believe this is quite a common occurrence. When in 2014 I developed a new sensory symptom, the neuro offered to move me up to a second (of three) level of drug and I have been on Gilenya since then. That’s a daily pill, much easier than injecting and so far no relapses! It’s really a matter of judging the risk-benefit of each treatment on offer. We know that untreated MS gets worse, so doing nothing is (IMO) definitely risky – although there are many MSers on this site who will categorically disagree with me. The CRAB drugs are the least toxic to the system and as you go to second and third level drugs, they are more potent and carry more risks. However, their considerable risks are well known to the neuros and all patients are very regularly monitored with blood tests, MRIs etc., so that problems are spotted and dealt with – often by switching drug. It’s a complicated picture but hopefully once you’ve read up as @stumbler suggests, you’ll be able to ask your neuro team the right questions and decide what’s best for you. x


californiadreamin
1 year ago

@cameron I think you articulated what I was trying to say really well.

@als12 I guess more directly I would say when presented with a similar choice we choose Tecfidera. Was that an option offered to you? Did you rule it out? If you have good reasons for not considering gilyena or Tecfidera that’s totally reasonable. However if those options weren’t seriously presented to you i would be concerned with your dr.


jackie1953
1 year ago

I was on Copaxone since 1998. Went from the two bottle mixing to the syringes already filled in the pack of 30. But an MRI showed in November that it had stopped working and I had a new inactive lesion. I was then put on Tecfidera and like @Gemma, I’d go back to Copaxone today if it would work! Yes, my body is filled with lumps but they are getting smaller as time passes. As I just started on the Tecfidera last week, I’m still getting used to it, but I sure hope it works! It’s more of a hassle than the Copaxone.


katfight
1 year ago

@als12
Feeling all ur worries. I was diagnosed Nov 2013 started copaxone June 2014 and omg the run up to it was a nightmare for me. I had every single bad situation flying round my head.. but apart from that it was the needle that scared me the most. 3 years later I’m injecting when I remember (eeek) and some days it’s nothing and other days I still get anxious still. In all its not so bad it’s keeping me stable and doing its job, I’ve jus started 3 days a week so it’s pretty cool tbh. Use the autoinjector and try have a bit of fat around the site ur using. Don’t forget to rotate sites, I made the mistake of thinking I’ll get ok in my stomach as it never hurts there and day after day I carried on until a month later I had indents.. ooops. So I’ve laid of my stomach the past month and i can see progress. So rotate and use ur injector and don’t worry to much. Drop me a message if u wanna talk more. Good luck 🙂


hels99
1 year ago

I’ve been on Copaxone (by choice) for almost a year now. No problems but my tip would be to abandon the injector device as soon as you’ve got your head around injecting. Doing it manually causes less of a bruise. I also keep a spreadsheet to record where I’ve injected to help with rotating eg 7 inches above elbow, 2 inches right of mole (turns out they have their uses!) etc. I use an eyeliner to draw arrows to the chosen spot. As everyone has said, there are other options and you need to decide what is right for you. All the best!


nikitadawndelorey
1 year ago

I was diagnosed in December of last year and I’m still not really accepting it all but take Rebif 3 times a week, I take mine in the mornings because I would panic a lot in the evenings. It really does get easier 🙂 all the best & message anytime 🙂


isaacson72
1 year ago

I’ve been on copaxone for just over a year now. Had new MRIs done last week – no new lesions so it’s working for me. It’s the least scary, I think, of the DMTs. Not really any side effects other than injection site reactions. Some sites are worse than others — I hate doing my legs and frequently take them out of rotation. I’ve had some nasty looking bruises if I nick an artery but you can’t really help that. It looks bad, but it doesn’t hurt. Some shots do hurt – I did my hip this morning, it was a doozy but it fades within 20 minutes or so. For the record, today was the first time a hip shot has hurt that much. I must’ve hit a nerve or something.

As long as you were educated on the best option for you, and you’re comfortable with the decision, you’ll do just fine. It IS scary. Nobody likes injections. But it’s really not so bad once you get used to it. If you have a smartphone, copaxone has a great app for keeping track of your injections (copaxone iTracker). You input your rotation and it reminds you on injection days, and keeps track of where you’ve injected for the previous 3-4 shots so that you can easily avoid injecting the same spot every time.

Michelle xx


livealittle
1 year ago

I was started on Tecfidera and had horrible stomach problems that started about 2 &1/2 weeks after starting it. I did everything they recommend to mitigate the side effects, but holy moly – 3 consecutive nights of up all night sick to my stomach with sweats and heart racing.

Dr. switched me to Copaxone 3 X a week injections. I don’t use the auto-injector, too much of a control freak to not see the needle going in I guess. I does burn a bit after the injection is given. I have some bruising that shows up later and lasts about a week.

There’s an app for tracking your injections that I use. I’m not completely happy with the app as it tells me I missed a dose every week, even if I record all 3. It also said I had used my left arm within the last 6 injections even though you program what order of rotation to use the sites in and that’s what I’m following. I’m thinking of going to a spreadsheet approach like a previous poster said.

I agree that the stomach tends to hurt the least. I don’t use ice or heat on the injection sites. I had a 4 month follow up and assessment today and my Dr suggested I try heat and/or ice on the injection sites to help minimize the bruising and lumps. She said they weren’t a problem (medically speaking) but I may want to try the heat immediately after the injection to help the medicine dissipate and then ice to mitigate the bruising.

we’ll see. I asked today if Copaxone and Tecfidera are both considered Tier 1 drugs, why she didn’t start me on Copaxone and she said a lot of people can’t handle the needles. For me the needles are way easier than taking pills twice a day, with aspirin beforehand, and eating fatty food with it.

good luck and feel free to message me if you want to discuss further.


newbie2017
1 year ago

I’ve been on it for 6 months now. I’m not really that affected by my ms (only get L’hermitte’s Sign) so I didn’t want to introduce anything that would impact on life more than the disease itself does. I would have however hit it harder if or when I was more affected. For me I’ve had zero side effects. I had some dizziness when injecting in the morning but switched to evening and it’s all good. Yes get some lumps and bumps but nothing too bad. Still braving a bikini in the summer!! Injections are scary but you soon get used to it. Good luck

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