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Drugs - are they worth it?

Hello,

I have been reading many accounts of drug experiences for the past couple of days. I am at the start of my MS journey - diagnosed in Feb and just had a second MRI to see where I’m at with lesions etc. My neurologist talked about drug options last time I saw him and I am waiting for an appointment with the MS nurse to discuss further.

At the moment, I am luckily experiencing mild symptoms - fatigue, the odd pins and needles - I have worked really hard since my diagnosis to improve my strength, mental wellbeing, diet, vitamin intake etc which has helped. I know that a lot of the drugs (and the ones my dr. mentioned) have side effects - and I am conscious that I am am trying not to fill my body with junk when actually, would i just be doing this by taking lots of drugs?

Are the side effects going to be worse than my current symptoms? Are the drugs going to help me in the long term - if I dont take them now, will I be kicking myself in the future for not starting them as soon as possible?

I’m not expecting answers - just needed to vent a bit as although I have told some people, no one ever asks me how i’m doing, and I sort of feel like no one really cares, understands or actually wants to make the effort to understand which is frustrating adn hurtful and even when I try and explain, I get the impression that I’m not really being listened to.

Anyway, sorry for a moan on a Wednesday eve - complete self confidence meltdown and feeling a bit lonley!

Jenny

[quote=“secondrowchick”]

Are the side effects going to be worse than my current symptoms? [/quote]

possibly, but if so, they wont last long (depending on the drug you go for).

Are the drugs going to help me in the long term - if I dont take them now, will I be kicking myself in the future for not starting them as soon as possible?

that is the general idea.

drugs offer no cure and perhaps not even a significant reduction in current symptoms. but like vitamin munching and exercising, they offer a chance to feel like you are fighting back, whilst also being potential, positive investments in your future self!

Anyway, sorry for a moan on a Wednesday eve

Please don’t apologise; this is the correct place for a good moan; we all know where you are coming from and you have caught me on my lunch break anyway and so you’ve not even soured my evening! :slight_smile:

With the mental aspect of coming to terms with your diagnosis, feel free to take your sweet-arsed time about it all. but when it comes to choosing a drug of choice, sooner is understood to be better than later.

good luck!

Hi Jenny

Assuming you are given the diagnosis of relapsing remitting MS I would definitely recommend disease modifying drugs as a means of staving off potential relapses. Unless you are very (relatively) lucky, you are likely to have relapses and they could give you long term nerve damage. At least these days you have lots of options regarding DMDs that are supposed to reduce relapses plus severity of relapses to various extents; when I was diagnosed it was considered great news that there were beta-interferon and copaxone available. Now there are so many more options, the oral therapies, Gilenya and Tecfidera as well as the four injectables: Avonex, betaferon, Rebif and Copaxone. Then there’s Tysabri and Lemtrada. Yes they all have potential side effects but again with a bit of luck these will be mild. Personally I had side effects with Avonex so went onto Copaxone for 5 years with absolutely no problems and very little disease activity. I had a few years with no DMD (a variety of reasons) and had many more relapses. I had a major relapse during this time that left me unable to walk. Unfortunately Tysabri affected my liver (and that was picked up fairly quickly and completely recovered), although I had no other side effects from Tysabri. I’m now on Tecfidera and tho I have odd days still when I feel quite nauseous, it’s still early days and I’m still tinkering with diet etc.

Apart from the drugs, you are absolutely doing the right thing with diet, vitamins and exercise. If I had one piece of advise for anyone newly diagnosed it’s to get your body as strong as possible, especially getting your core muscles right. it will pay dividends in years to come. I was a bit lazy and regret it now!

Theres a lot to take in when you’re diagnosed with MS. It’s pure bad luck that you’ve got it, but whatever path you choose to take regarding drugs etc, you can always change your mind later. There is no right or wrong, just find out as much information as you can, this forum is great to get people’s views, but you can also look at the information booklets published by the MS Trust which are downloadable. There are many other sources of info, just search the Internet.

Best of luck.

Sue

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Hi Jenny,

The MS drugs have strong evidence (statistically significant) they reduce the number of relapses. Apart from the inconvenience of a relapse at the time they probably affect long term progression. Early treatment improves the outcome so my conclusion was (is) that they are worth it. The Barts multiple sclerosis blog (that’s enough to search for it) certainly advocates early effective treatment from a strong medical science point of view.

It’s really a matter of weighing up the risks. The chances are that drugs will improve things.

Best wishes,

Jonathan

The evidence is that they reduce the frequency and severity of relapses. They won’t do anything for what’s already happened but will prevent some future deterioration. So they are best started early, don’t leave it too late.

The problem with MS is the future is largely unknown. We all might stay as we are now but the chances are with an incurable progressive condition we won’t and it will get worse. And if there’s something that will help you take some control over that, it’s worth it.

You might have some mild flu symptoms to start with, but a debilitating relapse that has you off your feet for months and unable to carry on anywhere near normal, has got to be worse than that.

I’ve been injecting Betaferon for about 11 years. I wouldn’t be doing that if I didn’t think it was worth it. Not only for myself but I also felt I owed it to my family who might have to help me out if I have relapses. And I hate relapses, they are nasty horrible things that can drag on for months and leave you in a worse state than before, so yes, the drugs are worth it.

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The $64K question you should be asking is ‘Could this drug do me harm?’

If I didn’t know the answer I wouldn’t take the drug.

The answer is that all drugs (I’m not talking just DMDs) could do you harm. In most cases, the risks are quite to very small. Neurologists have a duty to explain any risks and side-effects of anything that’s being considered, so you can make an informed choice.

But if you are unwilling to accept any risk of harm, however small, the harsh reality is you won’t be able to take any drug, ever - not even an aspirin.

Whether something could harm you is a redundant question. The answer is always: “Yes”. What’s needed is a realistic appreciation of the risk (1 in 10 is very different to 1 in a million). You also need to understand the nature of the harm. Is it that you might get an upset tummy, or that you might die? It could be both, but with the likelihood of each being very different (e.g. upset tummy 1 in 20, death less than one per million).

To understand the risks in context, you also need to have an appreciation of what the drug can (and also can’t) do for you.

Nobody in their right minds would accept a 1 in 20 risk of death to treat a headache, but they might be quite comfortable with those odds if there was a chance of curing something they were dying from. So risks can’t be viewed in isolation - it always has to be in the context of what the prospective gain is. It seems to be a sad fact - I don’t know if it’s just with MS, but I suspect it’s common to the whole of medicine - that more impressive results tend to be associated with greater risks.

Of course, history has given us some miracle drugs (such as penicillin) which are genuine lifesavers with few risks. But even penicillin is not 100% safe. My dad was allergic to it, and could have died if he was inadvertently given it (he was OK with alternative antibiotics).

But the general pattern seems to be that if it achieves more, it risks more.

Medicine is not the only aspect of life where this is true. I’ve just been doing a course about investing. It’ll come as no surprise that if you want to chase the higher rewards, you have to be willing to accept greater risk.

So with medicine, as with investing, there’s no “one size fits all” solution. It depends on the person’s initial circumstances - e.g. how aggressive their disease is (or how much money they’re able to lose), and their personal attitude to risk. A naturally cautious, pessimistic person will be much less accepting of risk than a naturally upbeat person, who thinks: “Yes, I know it’s gone wrong for some people, but I’m confident I won’t be one of them.”

Tina

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Hi, I was started on Copaxone which I had for 6 months then had terrible side effects so stopped then with on Avonex well one injection felt terrible so stopped I have lots of problems with intolarance with food etc so wasn’t surprised I had bad side effects, It is a very personnal thing not having Drugs, my Husband and I had long talks about it, but for me I think it was the best thing even though I still worry about it sometimes but I feel so much better than when I was diagnosed.

good luck X

Hi Jenny, I’m with Tina on this 1.Everything carries risks in life, including drugs. My thoughts, in the beginning were what could happen if I didn’t take them. Personally to me the benefits far out weighed the risks & side affects of the medication. They all did not agree with me, granted, but I found the ones that did, as many of us on here have. To me, the MS “side affects” are far worse if left without medical intervention. I’ve been extremely lucky, that the drugs have helped up til now, my circumstances have changed, but I will take what ever is offered to me in the hope I can control life with MS better, so don’t be afraid of being advised to take the drugs, all bases will be explained & covered by everyone involved in your care, Tracey x

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Wow! What a great thread. Like Jenny, I too, am also weighing up whether to take drugs or not and also which one - it’s a minefield! . I’m off to hospital for iv steroids next week and dont have my appointment with my consultant until August. My gp has been fab and is trying to book me in for an MRI so the consultant can see how/if the progression has affected me. The down side appears to be the side effects and, at the end of the day, most people post about the side effects and not so many pushing the positives…eg the lack of symptoms.

Hi Sallum,

Hope you don’t mind me clarifying one thing about “lack of symptoms”. DMDs won’t do this for you - they don’t treat symptoms. Anything you’ve already got - that’s happened. They won’t repair it, and they won’t relieve symptoms.

So taking a DMD to “feel better”, and certainly in the expectation of being symptom-free, is destined to lead to disappointment.

Instead it works like a kind of insurance. It’s all about reducing or preventing future relapses - which may in turn reduce the number of future symptoms you add to those you’ve already got, but won’t do anything about the ones you’ve already got.

So please make sure you understand the difference between a DMD and symptom relief. There are lots of drugs for symptom relief, but they’re not DMDs, and vice versa.

Tina

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I’m sorry if I worded it wrong. When I said symptoms, I really meant ms symptoms within a relapse, as I am lucky enough not to be left with side effect from my relapses, except for a bit of numbness, which shows up every now and then along with sharp icepick head pains from my 2nd ever relapse 10 yrs ago. I consider myself to be lucky but I now need that bit of ‘insurance’ and need to find as much info as well as real life experiences both good and bad to make an informed decision.

No probs - I just wanted to be sure you understood, as I didn’t want you to go on a DMD expecting it to fix symptoms, and then feel let-down when it didn’t. As I’ve said already in this thread, it’s important to know what you can expect - but also what you can’t. I didn’t want anyone to feel they were mis-sold a DMD, because they believed it would fix symptoms.

Tina

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Hello everyone,

I just wanted to drop back in and say thank you for all the information. I am awaiting my first MS appointment and feel much more positive about drug therapy based on your contributions. I am still not sold on what I will take but hopefully talking with the MS nurse will help me to focus on the viable options. I can totally see that this is the way forward for the future.

Many thanks

Jenny xx

Hey Jenny,

It’s a hard decision, one of which I am yet to make! Been told that my Ms is mild, I know that can change. Bloomin hard hey?! Let us know how you get on,

hugs Sennen

Thanks Sennen,

Me to - although I’m not sure Mild is the best description. I got the impression that the Nuro was saying this not to panic me!

Good luck!

=)

I’ve always advocated the use of DMT’s. Yes with MS you can argue you don’t know which way its going to go but ultimately it is a progressive disease so one can expect consequences in the end. Its just the how soon and how bad we don’t know.

One could argue I have "mild"MS. I have no symptoms, no disability and to date only one relapse which happened over two years ago. My MS has been silent since. I don’t feel like I have MS or any health condition for that matter. Does this fill me with confidence? No. I’ve read enough to know I’m not likely to be saying the same in 10 years time and have experienced enough of MS to know what it can do to me. I’m enjoying a period of remission that is all and long may it last.

Despite the silence my MS has continued to cause further brain damage evidenced by a new if silent lesion on a recent MRI. It is only luck this lesion has popped up in a none vital area, next time I may not be so lucky. I was offered Lemtrada and I took it. I have no regrets. Do I worry about the risks of the medication? Yes, a little but I worry about the risks of MS much more. I wish there were better tools available but there are not so I will gratefully take what is offered. A generation ago there were none and the natural history of MS is bleak. Don’t under estimate what it can do to you, the statistics speak for themselves.

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