Forum

should I stop taking meds?

I was diagnosed nearly 6 years ago after one major flare up that paralysed me down the right side of my body - it cleared up fine after a couple of weeks in hospital - and then another that had me cross eyed for a few months. I went on copaxone after the second relapse and have had nothing since. I had an MRi recently and the major holes in my spinal cord have decreased in size by more than 40 percent, the dozens of littler blips in my brain have all but gone while the bigger holes have also reduced in size by more than 40 percent.

ALL GREAT NEWS.

I realise I should be thankful and not worry but I wonder if I will every be able to stop taking copaxone and say I USED to have MS?

I’ve been reading about people who have been on copaxone for 19 years without any relapses or side effects, which again is great but I hve also read about people who had a few relapses and were then fine for ever without drugs.

What does everyone think?

1 Like

hi

it would be wonderful if you could say that you used to have ms.

however that’s not possible.

you’ll never know if you’ll be fine without drugs or worse.

copaxone does seem to be working for you. do you really want to risk it?

good luck

carole x

Hi,

As things stand, no, MS is incurable. Nobody can say they used to have MS. Anyone who does so is either a fraudster or deluding themselves (to put it politely). At the moment, the best any of us could say is that we’ve been blessed with very long remission.

I hope that may change in the lifetimes of some here, although as I’m already 49, I don’t realistically expect to be around to see a cure.

I think stopping DMDs is a very separate issue from being able to say you used to have MS. As medicine stands at the moment, you have to assume you will have MS for life. I don’t mean to sound negative, but there it is. The cure has not yet been found, and if it was discovered tomorrow, it would certainly not mean we’d all get it next week, and that’s the end of MS. These things take years in development.

So being an ex-Copaxone user would have absolutely nothing to do with whether you still had MS - you still would. That part’s a definite.

As to how you’d be without Copaxone - I don’t know. Touch wood, I haven’t relapsed since diagnosis over 4.5 years ago - I’m not on any DMD. Does that mean I can pronounce myself free of MS? Of course not. I’m aware every day that I have it, in hundreds of different ways. Not relapsing unfortunately doesn’t mean feeling well. I felt rubbish for years before diagnosis, and have felt mostly rubbish since, but know I’m still lucky compared to how it goes for some people.

Why are you thinking of stopping Copaxone? I don’t mean it to sound a judgemental question - I’ve never taken a DMD, so am certainly in no position to say anyone else should. I’m just curious what’s getting you down about it. Is it the injecting? Is it side-effects? If it’s the injecting, I certainly understand your sentiments about that. I don’t think anyone can genuinely say they want to do that for life, even if they accept they might have to.

However, Copaxone is starting to look quite old-school compared to the newer drugs emerging now, several of which are pills. There is no plan (that I know of) to migrate people who are successfully on one of the old-style injectables as a priority. I think if you’ve had excellent results on Copaxone, it’s unlikely your neuro would propose a switch.

However, if you are experiencing side-effects, or the injections are really getting you down, it might be worth discussing what other options are open to you, as things are moving on, treatment wise. But I don’t want to give you the illusion one of the others might cure you - it won’t.

Do you have an MS nurse (I do, but never use mine). Can you have a chat about all this?

Tina

x

1 Like

Im not down about anything

I couldnt be happier with my current condition

I just wonder how will I ever know how much of this is the drug if any and how much is me - again if any?

I feel great, but I guess I will never know why

but its such an unpredictable disease you just never know

I guess I should shut up and count my blessings :slight_smile:

thanks for the replies

an interesting post -

surely if there are no obvious physical signs of m.s. and all scans etc are clear this poster is perfectly right to say he ‘used to have m.s.’ because he hasn’t got it now.

there is no cure for MS, simple and medical fact. and there is still evidence of the disease, just reduced.

1 Like

and a person will never know if its the DMDs helping with relapses or not. the only way to know is to stop taking them, and take the risk of a relapse or not. Its a risk a person has to think long and hard about. people have the option to stop taking the drugs and often when they feel good do, because they don’t think they need meds of any kind and then problems can start back up again without the meds. a person could be fine without meds, but like i said they need to go over the risk of stopping or starting and talk to medical people about concerns. dont stop cold turkey with a lot of them with out talking to someone.

It’s a personal choice. If someone on Copaxone had no relapses in 19 years, it could have been because the drugs were working. They’ll never really know for sure and you’ll hear plenty of reports like that. Similarly of people relapsing over and over. That’s the decision we all have to make.

But as things stand now, you won’t be able to say you used to have MS because Copaxone doesn’t cure it. Nothing does. You might be able to say you never had it in the first place if you think you might have been misdiagnosed.

Personally, I wouldn’t stop the drugs even though I haven’t had a relapse for over four years. Whether it’s the drugs or me, I don’t care - it’s not a risk I’d consider taking, not with something as unpredictable and vile as MS. You might have had no relapses but how do you know you won’t wake up with one tomorrow? What you see on an MRI scan won’t tell you about the progression of your MS. If only it were that simple…

2 Likes

If it was me, I would stay on the Copaxone. You’ve improved & that’s fantastic, but would you be prepared to maybe suffer a (possibly huge) relapse if you stopped?

I wouldn’t risk it…but you’re the only one that can decide if you would

Good luck

Rosina x

1 Like

Hi Guys.

This is a very interesting topic, especially as I’m considering coming off Copaxone because of the injection site reactions. I’ve been on it for almost two years, the injections are getting more and more troublesome with often golf ball size lumps taking up to two weeks to heal. I’m tired of it, REALLY tired of it.

There was 4.5 years between what I now know as my first relapse and my 2nd major one which left me with disability.

What I wanted to add into the mix of conversation is, these DMD drugs are here to help prevent relapses but when I started Copaxone the hospital said it could help reduce relapses by UP TO 1/3 or 33%. That is “UP TO” 1/3 ! And 1/3 or 33% is still fairly low.

So you see, I wasn’t on any kind of drug between my 1st and 2nd relapse so I’m thinking if relapse no. 3 is round the corner would it happen anyway whether I’m on Copaxone or not. So why not stop the drug?

Warm Regards,

PuddleJumper.

2 Likes

Hi, those injection site reactions sound as if they’d put anyone off, they sound awful! But not all DMDs are injectables now and the newer ones have far better results so you could have a look at those.

Statistics can always be interpreted in different ways, when I started Betaferon all those years ago, a reduction of a third in frequency and severity of relapses was a huge benefit. Before that we’d had nothing at all so anything was better than that. Nowadays it doesn’t look so good. It is an average though, and I believe that for me it’s been far better than a third.

As I said before, we are lucky that we have these options now. Anything to stay as normal as possible for as long as possible because the next relapse might wreck that for good.

3 Likes

Hi Val.

Thank you for your response.

Yes I do agree with you, we certainly are lucky we have these drugs available to help reduce the relapse rate. My last major relapse was Feb 2012 which left me disabled but I’ve not had one since (plenty of flareups), I know its impossible to tell but it just makes me wonder if that’s down to the drug or not.

Part of me wants to come off Copaxone, pull myself away from the safety net and see how my body is coping without it. But, yes it feels like taking a big risk or does it? After my first onset of symptoms in June 2007 I went 4.5 years without any drugs and my body continued to repair itself.

I would even consider continuing with Copaxone as I’ve had absolutely ZERO side effects apart from the injection site reactions, but I’m just so tired of all the lumps and bumps. My hospital I now believe are offering Tecfidera, and although its got a lot of good reviews, have you looked at the side effects!. I suppose the scariest thing is putting you at risk of the deadly brain disease “Progressive Multifocal Leukoencephalopathy (PML)” not to mention the hot flushes and the Sicknesss/Gastro issues.

Maybe a break from DMD’s is what I need then look again with a fresh pair of eyes.

All the best.

If you will forgive a fanciful analogy, DMD/RRMS is a bit like global warming - there is no certainty about how wrong things would go if you did nothing. But there is a risk that, if they did go wrong, they could go very wrong indeed, so it makes sense to manage the risks down a bit even though you don’t exactly know how big those risks are. So I suppose I take DMDs for the same reason (i.e ‘better safe than sorry’) that I support reductions in carbon emissions!

There is certainly a debate to be had (both on DMDs and on global warming) about where ‘better safe than sorry’ stops being good value, so to speak, and tips over into costly and irrational loss aversion - give me a large glass of Chardonnay and I’ll pontificate and wave my arms about on that one all day long.

In the meantime I’ll just stick to my Tysabri and hope that I’ve got it about right, but I’ll never really know. It’s all relatively easy, of course, when one’s MS has shown its teeth very clearly. But I wouldn’t trust even slumbering RRMS further than I could spit a rat.

Alison

2 Likes

Hiya

I had no treatment for 7 years. Not through choice I hasten to add but a very dismissive neuro! Long story!

I went from working driving and all that life entails to 48 hours later being doubly incontinent, lost sight in left eye and right sided weakness and requiring power chair and carers and that is ongoing today.

Am a bitter?! Angry?! Damn right I WAS! But now this is my life and my head is strong tho body is falling apart! I guess that neuro never gives me a 2nd thought so I don’t waste my precious energy giving him a thought (until I wrote this!) and live my life as I can, difficult tho it is!

So I would suggest do all you can to prevent even just one relapse cos it might be li!e mine!

Take care, Ellie.

4 Likes

Thank you Alison, and Thank You Ellie.

Definitely food for thought, take care.

All the best.

1 Like