Last reply 3 years ago
Preliminary diagnosis and drugs proposed

Has anyone taken copaxone and to what effect? What should it do and is it effective. Please be open on negative effects as well as positive. Thanks

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graham100
3 years ago

Hi @mtf67. It all depends what your expecting? If you think it might make you feel like you used too, sorry but it won’t. They say it will reduce the amount of relapses you have, i think it shuts you up for a while. Injecting every day is a pain in the ass, excuse the pun, lol don’t really matter what you read or what you do, it a case of (Que sera sera) not what you want to hear,, sorry but only my opinion, you will have your own. Then it will change. Every year it will change again. Good luck on your journey. Stay happy, don’t let it get you down. 👊✌


mtf67
3 years ago

Thanks. Actually I was thinking of injecting in the stomach but I have not received meds or instruction yet guess one probably has to turn on the yes button. Family getting sick of waiting for me and say I am doing further damage to my brain which will eventually lead to dimentia and say to just get on with it but I feel great now and do not want to start feeling like ****. Dr says it is well tolerated??? Meaning? That is why I am trying to speak to people and hear from people with experience what that means.
Going to dif Dr tomorrow if they say same, I will seriously consider taking action. Were you like this? In disbelief? Thanks mtf


stumbler
3 years ago

Hi @mtf67 , I don’t think that was what you wanted to hear.

I’ve not had firsthand experience of Copaxone, although it’s one of the original CRAB (Copaxone, Rebif, Avonex & Betaferon) drugs, used to manage MS. It’s role is too reduce the frequency and severity of any relapses.

Copaxone seems to be well tolerated. Some users have had some injection site reactions, so it is important to rotate the injection sites with some discipline.

Use the forum search function (magnifying glass, top left) to search for previous discussions on this treatment.

As MS is a wide-ranging condition affecting different people in different ways, then treatments become a bit like “horses for courses”. if this one doesn’t suit you, then there are a wide range of options now available.


stumbler
3 years ago

Hi @mtf67 , my post crossed with yours.

Anyway, well-tolerated means that the majority of users have little or no side-effects from using this treatment.

However, as I said previously, there are other options available now, with some oral alternatives potentially being more effective.

Your family support sounds “interesting”. Do they really understand that you are deliberating over serious changes to your life, which will potentially stay with you for life. Families, eh? 😉


denisa
3 years ago

@mtf67 – indeed families can be a little anxious concerning treatment and other MS issues. Been there, STILL doing that :))

As of march this year I started Copaxone. Before I was put on treatment, my mom was constantly asking and questioning me about when am I going to get on treatment, because it has been 8 months since my initial dx and bla bla bla. After I came home with the med and started injecting, guess what? She started feeling sorry that I was injecting every single day and that I have to experience it daily. Who can undesrtand them? :)) just stay focused on your goal of obtaining treatment. The choice of DMD (disease modifying drug) is all yours, as @stumbler said.

As for the good ol’ Copax? Hmm, rotating those injection sites does help. It prevents skin inflammation and helps with the lumps. And by lumps I mean skin inflammation and a bit of a swelling due to Copaxone expanding under your skin tissue. They rightly say that is the most tolerable med (as an injectable). I’m doing my 59th injection today (after I finish this message) and the initial lumps are waaaay little, the sting after the injection is a no.brainer and mostly it’s all good. It’s all about patience, tolerating the first weeks and then it becomes part pf your daily routine.

Do ask about the allergic reactions! The doctor will tell you a lot more about them. If you are allergic to any of the Copaxone compounds, you should have an allergic reaction with shortness of breath, swelling and company. But those cases are rare, although they do happen.

All in all, Mr. Copaxone is a tough friend, but it’s tougher on the MS that you, trust me! :))

Lots of luck, patience and a LOT of health and good days!


simone2
3 years ago

Hi, I took copazone for 6 months when I was first diagnosed it was fine for 6 months but because I have lots of problems with certain foods (sugars) (Copazone contains Manitol) I had terrible side affects but lots of people are fine, you get use to injecting every day and if you change the injection site every day its not a problem.
lots of luck


graham100
3 years ago

Sorry guys. It was only my opinion. Said you wanted good or bad. All my probs seem to be spinal so mane different. I’m actually on copaxon now. Have been 6months. No side affects. But feel no better as I said. Try and see. You can always change. Good luck.


skyzie
3 years ago

Hi.
I’m actually starting on Copaxone this week myself so I’m not sure I have much to add!
Here in Australia they have just released it in a higher dose you take every 3 days. I’m not sure if this will make it easier to take or harder to remember which day to take it! Ah the joys of it all… 😉

Fingers crossed!


sullimaybe
3 years ago

Love Copaxone, diagnosed 11/14 started three times weekly injections 12/14.
Hoping for improved MRI in June 2015.
Diligently rotate 7 sites, easy-peasy!


cameron
3 years ago

It did me brilliantly for eleven years. An easy routine, minimal side effects, kept me pretty well relapse free. I’ve now switched to gilenya because I had the beginnings of breakthrough disease. I chose it because it seemed to have fewer side effects and also because I reckoned it would be easier to remember a daily injection than a two/three day regime. Go for it.


anettauk
3 years ago

I’ve been on Copaxone for almost 10 years now and it’s been working well for me. I used to have some mild side reaction after injecting and tender lymph nodes at the beginning but that’s about it. I was on Avonex previously and suffered very bed flu symptoms. I was a bit reluctant to switch to Copaxone because of daily injection but glad I did.
Good luck!


ksmiffy
3 years ago

I was on Copaxone for 5 years. It definately reduced my relapses but daily injections do get you down. It got to the point where there were some sites that i just could not inject anymore ie: legs. (They became so damaged). I swapped to Tecfidera a month ago (oral) and i have had some of the side effects but i am determined to get through them. Feeling sick all the time is the worse one, the flushing i can put up with! Saying that, it is so much better than injecting but you have to make your own mind up. Injecting was ok for me for the first 2 years but you have to remember that it is not a cure and you will have days that you don’t feel 100%. Good luck!

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