Copaxone.... Help!

Everyday living
1

Hello

I’d be so grateful if anyone could advise me on how they get on with Copaxone. I was diagnosed in April this year but I first saw an MS nurse in June. It was a half hour appointment where I was shown what the treatments look like and what they involved, she told me about the possible flu like side effects that you can get from 3 of the medications and also that Copaxone does not give the same effect but the downside is that you have daily injections.

I was then told that I can’t be told which to take because it’s a personal choice, to me I swayed towards copaxone but went away to think, I was told to ring back in August after my holiday, which I did. But at that time, I wasn’t decided because I don’t like to take medication of any kind unless I know it’s absolutely the best thing to do, and I didn’t know what was in these drugs but they all seem very powerful and the benefits are that they can help control the amount of relapses you might have. When I said this, I was told I must decide soon or I will have to re assessed. This scared me, as I was very ill after the lumbar puncture and I wll never have another one! It was just after that when I became ill, with dizziness and weakness in my left leg. But at this time I wasn’t diagnosed, I wasn’t able to contact anyone at all, my doctors told me to ring my neurologist and they never returned my call. The GP was unable to prescribe me anything as it was possible MS and I ended up being off work for 6 weeks! During that time (after 4 weeks) I had a routine appointment with my neurologist, luckily or I wouldn’t have had treatment, who prescribed steroids for 5 days. However I had to get this prescription from my GP but it wasn’t sent through immediately which meant I had more time off work.

When I did see the neurologist however at that time she said I definitely had mild MS. She hadn’t received my scans etc from Kings at that time. But I was then given an MS nurse. I didn’t really understand about the medication except about the flu, the length of the needles and the applications but I was told to go away and decide which one. Its a bit like a lucky dip, I have no idea what else they do. They might help with MS they might not.

I then decided I have to choose to avoid being reassesed again so I chose Copaxone.However, when i rang my ms nurse, she had left a recorded message to say that she was on long term sick and to contact my hospital, which i did and they never rang me back again, so glad i wasn’t ill like last time. I finally got an appoinment by going to my GP who wrote to my neurologist and then I was sent an appointment. By this time my ms nurse had come back to work. When I saw my neurologist, she didn’t seem to know what drug I was on or even if any! I told her that my MS nurse had said my medication was all ready and waiting for her to sign it off before I could receive it. She then said that she had signed it off in early September! This what she said earlier about if I was taking a nythng yet. I then asked to see my scans from Kings that I had in March and she kept clicking the computer only to say that they hadn’t been sent through. I would have like to see the difference because if I had more lesions that might have made me think it was the right thing to do to start treatment. I asked and was told that its better to take Copxone as I had mild MS and why make myself ill with the alternatives if I am feeling well. I am just so confused. I feel like no one cares about me and if I did need help I won’t be able to get it easily as this has been my experience so far. Anyway, the Copaxone was due to be delivered today, but last night I read about it on the internet and now I am scared to death. It has a lot of horrible side effects as far as I can tell and I feel so well at the moment. I’m not blind to the fact that this won’t be forever but, i’ve read copaxone can cause weight gain that is hard to move and hair loss and frequent urination etc etc.

I hope this doesn’t sound silly, but I have never felt so good about myself than I do now, I have always put on weight easily and since I started exercising a year and a half ago have lost weight and feel really fit and healthy ( even though I know I have MS and its waiting to appear I guess).

I am just so scared of putting something in my body when I feel so well. I rang the Healthcare delivery people and they are going to put my medication on hold until I’m sure but I would really like some advice from someone who knows. I’m so upset and worried and I’m not ungrateful for being able to receive the medcation but is it always the right road to follow. :frowning:

4

Hi I have been on Copaxone since May and it’s so far working for me, it can be a thought injecting everyday but I do everything I can to keep it at bay… I have had no side effects what so ever and hope it continues that way. I hope you make the right choice for you which I’m sure you will… best wishes Laine

5

hi

i’ve been on copaxone since march 2009.

it’s working well for me. i havent put on weight and don’t have any side effects.

they are planning to offer a double dose for taking 3 times per week, but my neuro couldnt tell me when.

carole x

6

Hi there,

I started Copaxone 5 weeks ago. The daily injections do seem a chore at first, but I’m starting to get into a routine with them now and you are asigned a nurse from the drug company, who will be in regular contact with you, visit you at home while you do your first injection and be there if you need them, my Copaxone nurse texts me regularly.

I had some reactions in the first few days, hives, rash, itching etc…, but took antihistamines and that settled.

Otherwise, I experience, site redness and stinging for a few minutes and bumps at times and weilds, but they tend to setting within a couple of days, esspecially if you are good with site rotation.

I have had back to back relapses and been off work for 6 months, so I see Copaxone to me as a chance to slow things down a bit hopefully.

Regards

Jools

X

7

Thank you for your replies. It is so hard. I read that although these drugs can help ms, they also stop your immune system from working to fight other diseases and therefore you can catch anything and everything Potentialy more serious things than ms. I don’t feel I have had enough help with understanding it all, so I just wanted to find out how others are doing. I would like to know how people who are not taking anything are doing to (I mean cause they decided against it, not because they didn’t have the drugs available to them) I have not been given any advice on all the side effects, only that it can help MS by 30% in regard to relapses.

I just think that we should be given all the facts, good and bad, so we are quite clear what to expect in every aspect. I am scared really. I looked on Copaxone’s own website and their is a disclaimer on there about claims that they have published. I am worried about taking it but also worried about not taking it. :confused:

8

Thank you for your replies. It is so hard. I read that although these drugs can help ms, they also stop your immune system from working to fight other diseases and therefore you can catch anything and everything Potentialy more serious things than ms. I don’t feel I have had enough help with understanding it all, so I just wanted to find out how others are doing. I would like to know how people who are not taking anything are doing to (I mean cause they decided against it, not because they didn’t have the drugs available to them) I have not been given any advice on all the side effects, only that it can help MS by 30% in regard to relapses.

I just think that we should be given all the facts, good and bad, so we are quite clear what to expect in every aspect. I am scared really. I looked on Copaxone’s own website and their is a disclaimer on there about claims that they have published. I am worried about taking it but also worried about not taking it. :confused:

9

I’m on copaxone and have been for nearly 10 years - it has kept me fairly stable and only the occasional relapse - just coming out of one, thank God… One thing I will say, and i’m as guilty as the next person, stay clear of the internet, as it will conflict everything and fry your brain, I can speak from personal experience…MS diagnoisis and living with it can be terrible and get you down, so keep sane and carry on - try the copaxone and see how you go…most drugs cover every eventuality to be honest…“may cause drowiness - may cause insomnia” Nuts…

10

Thank you Redman

I do know what you mean about the internet, it’s just I feel my ms nurse and neurologist haven’t given me any info. I just don’t know what is the right thing to do. I know I don’t want to end up going down hill though :frowning:

I am glad you are doing ok, and also the others on here who have replied, it is making me feel a bit better about it. Thank you x

11

Thank you Redman

I do know what you mean about the internet, it’s just I feel my ms nurse and neurologist haven’t given me any info. I just don’t know what is the right thing to do. I know I don’t want to end up going down hill though :frowning:

I am glad you are doing ok, and also the others on here who have replied, it is making me feel a bit better about it. Thank you x

12

Hi. Been on Copaxone for 6 years, the only side effects have been sore site areas, & only sometimes. I have always weighed 8 stone, actually lost in beginning, but sure it was down to stress. Wasnt aware the drug caused weight gain, as a dietitian it wouldnt have done my ability to give diet advice any good!!! Most people who are on this I have come across seem to tolerate it pretty well. I personally am glad I used it, it did keep things in check for quite a long time. Although I am progressing at mo is probobly due to other health factors, not the Copaxone itself. They are also very expensive, so if you have been recommended them its because the MS team believe they will help you. Goodluck & let us know what you decide!! & keep off the internet!!! Tracey xx

13

Hiya

I’ve been on Rebif and now I’m on Copaxone. I started DMD’s because I had very active MS but even if I didn’t I would have still have gone on them if offered because they would help keep my MS stable.

I was lucky with Rebif, that I didn’t have the flu like side effects that are reported, it worked well for me for about 3 years, then it stopped working so I changed to Copaxone. The change to injecting everyday, was no big deal it’s probably even easier as you don’t need to remember what day it is. The biggest difference I found was that the site reactions with Copaxone were worse than Rebif. I think I was a bit allergic to it at first so took a 1-a-day antihistamine to help with that. Once your body gets used to it, the site reactions go away. It’s very important to keep your skin in good condition and massage the areas you inject, the next day (not the day you do them). I’ve not gained weight because of it or lost any hair. The best bit is that it’s kept my MS under control and I’ve only had 1 or 2 small relapses since starting it 3 years ago. Even though I found it quite hard to deal with the site reactions at first I’m glad I stuck with it.

The scary Copaxone side effect that you hear about is the racing heart thing. I’ve never experienced it…I think they tell you about it so that if it happens you don’t panic too much and just site down and take deep breaths till it passes. Just because they tell you that it might happen, doesn’t mean it will.

Good luck

Sue

x

14

Hi ClaraLara,

The DMDs (Rebif, Avonex, Copaxone and Betaferon) don’t lower your immune system. They modify it so that it doesn’t overreact to viruses and turn on you.

There’s a very good explanation of how they work on Wikipedia - for example, Rebif strengthens the Blood/Brain barrier and has other beneficial effects.

The 30% figure is a statistic. You’ll find people who’ve had a 90% reduction in relapse rates and others who their DMD has done nothing - there’s no way to tell unless you try one for a few months.

I started Rebif in 2000. Prior to that, I had relapses about every 8 weeks (on average). Since it started working (it can take a few months) I’ve had one relapse every 3 years and no progression - but the progression part may just be good luck.

I actually chose Copaxone first, but it wasn’t available. I started Rebif and was very lucky in that all I’ve experience is huge red blotches, that become bruises after a few days. It’s a small price to pay for such a reduction in relapses.

I reckon that having a relapse is a bit like any other injury. If you break a bone, or tear a ligament, it takes weeks to recover - or longer. The more times that you have a relapse, the more scar tissue you develop and the recovery will be slower.

If Copaxone or any of the others don’t work, then there are stronger, but more effective drugs.

best wishes,

K

15

Oh thank you so much for your replies, it seems its doing more good than harm which is very reassuring, and yes I will heep off the internet now! Lol!!!

I am going to wait til after christmas I think and then try Copaxone, I am just a worrier.

Thank you for your advice :slight_smile: x

16

Oh thank you so much for your replies, it seems its doing more good than harm which is very reassuring, and yes I will heep off the internet now! Lol!!!

I am going to wait til after christmas I think and then try Copaxone, I am just a worrier.

Thank you for your advice :slight_smile: x

17

Hi there, your post really reminded how I felt when i made the decision to take DMDs after diagnosis. I was worried about Copaxone after having bad side effects with Rebif but I can honestly say in my expereince its been absolutely fine.

I’ve been taking the injections since May, I initially took daily injections but developed worsening daily headaches i.e, standard painkillers weren’t hitting the spot. My consultant advised to try every other day as research has shown this would still be effective. After this I’ve not had any post injection headaches…

I do get the red marks after injecting, they are worse on my legs and are sometimes itchy but as time goes on the reaction gets less and less each time. If i inject in the more fatty sites like stomach / area above bum there’s no reaction at all. I haven’t gained any weight since I started the injections.

I know you’ve read various things on the internet and as other people have advised please don’t believe everything you’ve read. My ability to catch colds / bugs hasn’t worsened in fact others around me have had colds etc and I’ve been fine. Please just try to stick to what’s on this site and read other peoples expereinces.

On a plus note I had a relapse in September which was over a lot quicker, was a lot milder and after effects improved a lot more quickly than ever before. I feel positive about Copaxone.

I hope all goes well for you xx

18

I have been on Copaxone for 16 months. I wish I had started sooner when I was first told I qualified.
Have not had any sort of relapse since February (and I had three in the six months before I started on Copaxone).
I chose Copaxone because of the daily injection - figured it would be easier to build into my daily routine.
The down-side is that you cannot go from Copaxone to Gilenya - you have to have been on an Interferon DMD first.
No noticeable side effects - maybe the breathlesness, but when it only lasts for a few seconds, can you be sure. No hair loss, no weight gain (I’ve been able to lose nearly half a stone this year).
Fear not.

Geoff

19

The only website worth looking at when considering DMDs is the msdecisions site because the information on there is objective and factual. Unfortunately, the same cannot be said of most other websites, to the extent that some are just full of scaremongering rubbish :frowning:

The truth about injectable DMDs:

They do not lower the immune system.

The side effects are negligible compared to the effect of a clinically significant relapse (i.e. one that is disabling / debilitating) for almost everyone. If someone is unlucky enough to have more severe side effects, they can switch to another injectable DMD.

They reduce the number of relapses someone has by 30% on average (as lapreguiceira has already said, this means that they work brilliantly for some, not at all for others, and everyone else is somewhere in between).

They also reduce the severity of relapses that still happen, delay the onset of disability, reduce disability, can help to slow progression (only Avonex and Rebif officially claim this I believe) and extend life expectancy. They also reduce the number of people who go on to develop MS from CIS.

They are (usually) officially deemed to have failed to work when the patient has a clinically significant relapse. At this point, the patient should be offered a different injectable DMD or a second-line med like Gilenya or Tysabri, depending on MRI results.

I was on Copaxone for 4 years. It kept me pretty much relapse free for 3.5ish years (I had two very mild “blips” in that time, but they weren’t remotely troubling). It was dead easy to inject with only a wee bit of stinging afterwards and that only occasionally. I did not gain any weight or lose any hair or anything else like this. Actually, I have just checked www.drugs.com and these are not even listed as potential side effects so I’m wondering if there is any proper evidence that these are related to Copaxone?

I was taken off Copaxone in 2010 when I started a relapse. In the 15 months I was not on any DMD, I had back to back relapses taking me from being an internationally competing martial artist to someone who needs a walking stick.

I started on Rebif44 in June 2011. I’ve been a bit unlucky with the flu side effects, but I have been relapse-free and have even improved in many areas.

Funnily enough, I am a big fan of DMDs! Sure, they don’t work for everyone and they are a long way from a cure, but they are the only thing proven to actually reduce the effects of MS. Every time I inject, I am fighting back. I only wish I had fought my neuro and still been on Copaxone in that gap before I started on Rebif - I might still be doing taekwondo.

Karen x

20

Thanks Karen

That helps alot, sorry to hear you have had a tough time. I have just been looking in the wrong places I think it seems. I am just so confused but I can tell by eveyone’s opinion on here that starting treatment can only be a good thing and I’m glad to hear that no one has had the horrible side effects that I have read about.

Take care

Claire x

21

Thanks Karen

That helps alot, sorry to hear you have had a tough time. I have just been looking in the wrong places I think it seems. I am just so confused but I can tell by eveyone’s opinion on here that starting treatment can only be a good thing and I’m glad to hear that no one has had the horrible side effects that I have read about.

Take care

Claire x

22

Hi Claire,

I apologise as this is a lengthy reply but I do sympathise with how you’re feeling.

I started on Copaxone on August 7th this year after deliberating since May which one to choose. Being a needle phobic i was reluctant to start any of them, I had my mind set on Avonex as it’s only injected once a week but then i got cold feet as it’s into the muscle and I once had a bad experience in hospital with a muscle injection. Then i decided that I really didn’t want to feel as if I’d constantly got the flu so I chose Copaxone.

I am the type of person who hated taking any medication for anything but when my ms started to cause spasms and pain I had to take some of the medication prescribed for these things. To be honest with you I believe that they are the cause of some of my weight gain, not Copaxone, and the fact that I just cannot move around as freely as I used to. Like you, I read that my hair might fall out !!! I also asked the same question on the forum but nobody elses hair had fallen out. \with regard to your worries about the urinary frequency, again i have found that this was a slight problem for me BEFORE I started Copaxone and the copaxone certainly hasn’t made it worse. I actually find Amitriptyline has helped with this problem.

It doesn’t help that you’ve had such a confusing time with your whole medical team and I feel sorry that you’re feeling pressured and panicky about your choice. What I can’t understand is how on earth your neuro can tell you that you have mild ms if she hasn’t even seen any scans or did she diagnose just through LP and symptoms ?

My ms nurse couldn’t tell me which DMD was better for me than another, basically each pharmacutical company will tell you that theirs is the best as at the end of the day it’s a business for them. She said each one claims to have a 30% reduction in the amount of relapses you will get and clinical trials have backed this up. Some of the interferons have slightly proven a reduction in progression of the disease but they have no data for copaxone with this issue.

I’m not sure whether it makes you more susceptible to illnesses. I had the flu jab 2 weeks ago and within 48 hours I had the most dreadful cold and aches/pains, fever which wiped me out for just over a week. Now I don’t know whether that was the " fake flu" which the gp warned me about or whether I was unfortunate to pick up a virus and my body just couldn’t fight it as well as it used to and this may or may not be down to ms. The frustrating thing is that a lot of the time I find ms quite a confusing disease.

Getting to the injection itself. I was totally terrified but the nurse from Connections healthcare was really lovely. If you live in the East Midland/East Anglia area and choose Copaxone, her name is Tricia Wallace. She helped me through the first one thank god. I still get a bit anxious about each injection but that’s because I still worry about getting it in the right place and whether my skin is the right temperature etc. I use the auto injector which I know is easier for me and I do get some site reactions but they are not too troublesome and only last a few hours.

I sometimes feel a bit nauseous and dizzy/tired day to day, again this may be down to Copaxone or my ms. I just simply cannot tell.

I remember asking my ms nurse that would I be silly if I decided not to take anything and she replied that what she wouldn’t like to see is me saying in a couple of years time that I wished I would have taken the DMD’s sooner and regretted my decision.

Unfortunately, annual MRI’s are not done routinely, only if you are suffering more relapses or your symptoms are getting progressively worse. I wish they were as you could then know for sure if more lesions are appearing.

I think the ms decisions website is a great help in making a decision on the DMD’s, it helps you decide which factors are most/least important to you. I don’t think the ms nurses or neuros can be of any more help to you regarding your choice as they can only give you the clinical facts. You need to decide what will fit into your lifestyle the best and if you decide not to take anything that’s entirely your choice. If you just bear in mind that you have been ill enough to warrant the use of steroids so that might be a deciding factor.

If you feel well enough to keep moving about please keep going as that’s going to be the thing that keeps the weight off primarily but whatever you decide to do good luck with everything.

Anne-Marie