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Some advice needed - Copaxone

Hi,

I just wonered if I could get some advice. I was meant to start on Copaxone today but decided at the very end not to. I was diagnosed last year and my last relapse ended about three and half months ago. I have tried Rebif but that made me incredibly depressed. My nurse and I decided to postpone it for the next 6 months to see how I go. I really want to give my own regime a chance. I think that with my diet and supplementation I am in a very good place. I just want to see what happens over the next 6 months. My last two relapses were triggered by colds. When I have a relapse, I am going to go onto Copaxone. I feel really well at the moment. Just wanted to get some advice/insights.

Thanks,

Adrian

Adrian I have been on copaxone for 5 years having been on rebif for 5 years before that. I understand what you are saying about diet / supplements but my personal feeling are that they work with the copaxone. Copaxone as an immunosuppresent is there to reduce the severity and number of relapses so you really want to prevent the next relapse. Ultimately the decision is yours but I would say to have a think again. All the best Neil

Hi Adrian, I agree with Niel. It is your own choice… However, I have been on copaxone for 6 months after being diagonised with RRMS since march 2012 and 3 severe relapses one involved losing all function in my right shoulder arm and hand, and I lost cognitive ability including my speech. I still have difficulty writing and at time my speech is affected… But Wow,! The difference after 6months is incredible! I still cannot believe how my energy levels have lifted and month by month my symptoms improve. I take vitamin d3 and watch my diet. These measures see to work hand in hand and I know that everyone is different. The injections still hurt but I feel it’s a small price to pay. Anyway… I wish you all the best whatever you decide to do. Regards Belinda x

I’ve tried to send you a message but it keeps disappearing x will try again tomorrow - sorry if in the mean time it appears 3 times! X bluebell x

Hi Adrian, I agree with Niel. It is your own choice… However, I have been on copaxone for 6 months after being diagonised with RRMS since march 2012 and 3 severe relapses one involved losing all function in my right shoulder arm and hand, and I lost cognitive ability including my speech. I still have difficulty writing and at time my speech is affected… But Wow,! The difference after 6months is incredible! I still cannot believe how my energy levels have lifted and month by month my symptoms improve. I take vitamin d3 and watch my diet. These measures see to work hand in hand and I know that everyone is different. The injections still hurt but I feel it’s a small price to pay. Anyway… I wish you all the best whatever you decide to do. Regards Bluebell xx

Hi Adrian,

Not sure what advice you’re wanting, really. This is not a decision anyone else can make for you, but I do know that whatever you decide, the person who has to be comfortable with it is you. Inviting others to vote on it won’t make any difference, if you’re not doing what you feel is right for you.

I’ve always declined DMDs - controversially, in the eyes of some. Though I must stress, I’ve never defied medical advice - my choice was with my neuro’s backing, though he never tried to influence me one way or the other. Only after I’d said I didn’t want them did he admit that would have been his choice too. So I left feeling a lot better, and that I wasn’t doing anything he thought reckless or silly.

I do realise it was a bit of a gamble, but all we can ever do in these circumstances is what we feel is right at the time. Others may think it’s a no-brainer to be on them, but for me it wasn’t, and three years later, I’ve no regrets. I feel that even if I were to have a big relapse now, I’ve still had a pretty good run, and there’s no guarantee I wouldn’t have had it, even if I was on DMDs, as we know they don’t stop all of them.

Why not have a chat with your neuro? You might be surprised to find that, like mine, he doesn’t believe they’re always right for everyone. It’s a balancing act! If he agrees the case is not that strong for you, you might have a clearer conscience about giving it a miss. Alternatively, if he makes clear his advice is to take them, that’s something to think very hard about.

Personally, I don’t have a “regime” I put my faith in instead. I do religiously take Vitamin D, which I’m confident plays a part - and which was endorsed on a recent visit to a different neuro (first time in three years anyone mentioned I should be supplementing - good job I already was). I don’t find the evidence for diet and other supplements terribly convincing, although I do take combined capsules of acetyl-l-carnitine and alpha lipoic acid, because I once read a study that suggested these showed some promise. They are very expensive though, and I don’t think the evidence is strong enough to suggest everyone rushes out and buys them. Just a personal foible of mine.

Other than that, I do try to stay as active as possible. I don’t have a dedicated workout regime, but I do walk a lot more now than I did when I was well. A couple of years ago, I got scared when I could not walk much further than the post office (about half a mile). By continually challenging my limits, I’m now up to 3-4 miles, including semi-rough terrain (stiles, tree-stumps etc.) I do find that if I don’t keep up the practice, my range drops again quite rapidly, so I have to keep teaching my body how to do it, otherwise it just gives up. I’ve no plans, at the moment, to try to take things beyond four miles, as that’s much further than I ever did when I was well. At 47, with MS, I think it’s enough!

Tina

x

Hi,

Thanks for your feedback. Really interesting. I did get your message bluebell thanks. I don’t know, it’s very difficult isn’t it?

I was ready to take my first dose today, then when the nurse came round, I just thought, no, I don’t want to take this. I want to give what I am doing a chance. I will take it at some point, just not for the moment. Maybe it has something to do with the horrible side-effects I had with Rebif. After two months I was having suicidal thoughts which were really distressing. Not pleasant at all. Maybe it has to do with the fact that I have just come back from nine days in France and have felt really good. No symptoms at all. The irony is that I have started to really tingle today which really isn’t a good sign is it?

I am seeing my neurologist in November, so I will leave it for now. See how I get on and see what he thinks.

Thanks very much for your replies. I really appreciate that. I will give alpha lipoic acid a try Tina. What dose do you take?

Adrian x

Hi Adrian,

Oh dear, I almost wish I hadn’t mentioned the alpha lipoic acid, as I haven’t noticed it doing anything, so it’s in no way a recommendation. I do think it’s pricey for something that might - or might not - be helping. It’s a bit eccentric of me to be taking it at all, as I just read one study about it, once, and thought there was a chance it might be beneficial, but I wouldn’t rate it as established fact.

If you’re determined you want to try, I take a combined capsule of 400mg acetyl-l-carnitine and 200mg alpha lipoic acid twice daily. At least, it’s supposed to be twice daily - I think I’m rather prone to forgetting the second pill.

I have found it expensive to obtain, especially at these doses. I’ve seen cheaper, but they turned out to be much lower strength, so you couldn’t compare like-for-like. I used to get mine from Holland and Barrett, but they were so dear, I order them in from the U.S. now. I have to pay import VAT on top, and a handling charge, yet it still worked out cheaper than buying them domestically. You have to get the calculator out to be certain, and work out actual price per tablet, inclusive of any extras like customs and P&P. Only then do you find out which is better value.

Maybe the tingling today is just that you’ve got yourself stressed worrying about the Copaxone decision? And also getting so close to taking it, but then not - you’d probably got yourself all psyched up. Stress is well known to aggravate symptoms, so I wouldn’t assume the worst just yet.

Don’t forget, you haven’t made a lifelong decision. As I understand it, all you’ve agreed is to put it on hold for six months, and review things again then. If your nurse thought this was a reasonable approach, and didn’t caution you about the error of your ways, it’s a good sign she doesn’t think you’re doing anything terribly risky. I can certainly understand you not wanting to rush into anything else so soon, after having such a bad experience on the first lot. But I don’t think Copaxone is associated with depression - although it might have other side-effects.

Tina

x

I agree - about diet and exercise, but Copaxone isn’t an immunosuppressant. It’s an immune modulator, it won’t suppress your immune system. Most people tend to choose it first as it has less potential side-effects than the other older drugs.

I had my worst ever relapse when I wasn’t on a DMD- not by choice, by circumstance. It’s not worth the risk - whatever your age. A relapse could rob you of a year’s useful and enjoyable activity and mobility.

I was able to restart my DMD after my weeks in hospital and it’s been doing ‘what it says on the tin’.

Hi we have followed a similar path, I was diagnoised late last year started betaferon which was awful so stopped. I take a range of vitamins, juice everyday, try and de stress and all the self help Iacan. I had an mri this yr which showed improvement but still have just started copaxone. I think you need a mix of natural and medical ms is to risky and its a high price to pay if ithelps. I look as it as if someone advised a vitamin that might help I would take it. Dmds are the same it might help. I was very nervous after my bad experiences but I knew I could stop if my body didnt tolerate it. It wasnt the 7injecting I was worried about just the side effects and copaxone is a completly different drug which at present is ok for me.when I read posts of people saying it becomes a daily routine like brushing teeth I didn’t believe it would be like that for me but it is and I feel good im doing another thing that might help to fight this I dont want to look back and regret not trying. I guess what im saying is try it might help and thats good enough for me. Hope this helps and I understand its a personal opion and we all know are own bodies best just dont be put off because one drug didnt suit. Zoe

Sed

Thanks for your replies. I thnk that I will. I’ll speak to my neurologist first and see what he has to say. I think it has to do with the experience I had with Rebif.

Thanks again, much appreciated. x

Hi I had to stop rebif around April time as it was making me so very ill. I gave it six months but I was losing three days every week and it was ruining the quality of life I had. I do understand the hesitation to try another DMD but as with all medication you won’t know how it effects you until you try it yourself. Unfortunately the reason there is choice is because not all drugs suit all people. At the end of the day it must be your choice. I don’t know how badly ms has effected your life so far but there is not necessarily a sliding scale. I went from two minior episodes which completely cleared up to a full blown attack in March 2012. I lost complete use of right hand arm, the ms hug and my balence was shocking to name a few of the delights. The thing is it hasn’t cleared up even now. I couldn’t write for seven months and even now I struggle to do much because of the pain in my hand. My stamina is not good. I had a wheelchair delivered two weeks ago to allow me to spend a whole day out with my family. I can still walk reasonable distances but after 2-3 hours out, I have to have a proper rest for rest of day because of fatigue and the ms hug which gradually tightens the longer I stand. I am not trying to scare you, it could have happened anyway, DMDs only reduce the number of attacks, it doesn’t stop them. However I wasn’t on DMDs at the time so I will never know. You just don’t know when an attack will occur that will leave disabling symptoms. So please think long and hard about your choice…it must be your choice but wanted you to consider what an attack may do if you wait for one to arrive before choosing to start. I am now on copaxone and for me the apart from the stinging sensation (which goes after a few minutes) and a few bumps, it has been a very different experience. Make the right decision for you. Good luck. Mish x

I really agree with what Mish says above Good luck with your decision

Hi I can only speak from my experience of ms treatments. I first went on a trial drug and after numerous skin rashes etc, I then had a severe allergic reaction to it. It was the most horrible time and I ended up on steriods for six months amongst other drugs to recover. I was terrified to try new treatments but after lots of reading, I choose copaxone, mainly due to the least amount of side effects. I have now been on this for over a year, and at my last appointment, the neurologist was quite shocked at how well I was doing. Downside is that you do have to inject each day, and it may sting but feel this is a small price to pay as I feel that copaxone has helped me to carry on living. My only thing I have noticed is that although it is not an immunosuppressant, my white cell count is slightly under normal, but not sure if this is due to this or other medications like antibiotics or anthistimines. Good luck in your decision

Started Copaxone in March 2012, have had one relapse last year (August - October, numbness chest downwards) but still have the injections with plethora of tablets as well (Vit D when dull days as taking it every day saw a level 160++), Glucosamine, B Complex, Omega tabs. When I first started Copaxone, my SO said she would have not started it but it was my decision. That is what it boils down to, it is your decision. Have worked full time and still do sporting activities through it all. Sometimes a positive mental attitude to the daily injections and a good method of getting rid of the lumps helps :wink:

Hi I forgot to say, but you may already be aware of this, that it takes sometime to start working/build up. My neuro told me at least six months but potentially my second year on treatment should tell if it is working for me. I have just started my second year and may be in relapse after a long lasting viral infection, so a it hard to say. Having said that I am still managing to keep on going! Helen

Thanks. I have just seen your replies. Yes, I think it is down to what you think is best. It is very reassuring that there is so much good feedback for Copaxone. I think that I will have a long talk with my neurologist in November and make a decision then.

Thanks for all your feed back, it is very much appreciated. Have a good day.

Adrian x

When I was initially diagnosed I wasn’t all that keen on the thought of medication especially since what is offered as first line is not all that effective. 2 reasons I decided to start - I glimpsed what the MS monster can do to my body if it chooses to in my last relapse. Annoyingly the main reason I decided to start = If you get a relapse whilst on first line drugs you are then possibly eligible to be considered for the more effective (reducing disability progression), oral medication. If I just had another relapse while on o medication the neuologist would say we advise you start on DMD’s. Also DMD’s give you a chance of less severe relapses and some slowing of progression/relapse rate. That was why I decided to start.