Forum

Treatment

Hello people, I hope all is well (as can be) for you lot.

Im posting on here after having made aware about it for the last year, or so.

To cut a long story short, I had double vision one morning, mri’s to follow… “We think you may have MS”, spinal test and there we go I’m diagnosed. I was sad and moping about for quite a few months but I’ve decided to just deal with the cards I’ve been dealt and just live as happy as can be… I had a appointment yesterday, in the south London area, and my doctor suggested getting on to medication right now, even though I’ve had no relapse since my double vision. Obviously medication is for a reason and so I just wanted to ask how you lot found medication and whether you’d suggest me getting on to it straight away - rather than wait months, to years, and then deteriorating beyond a manageable level?

love and peace to everybody, x

Oliver.

Hey Oliver,

I don’t know the answer to this! I’ve been told by two neuros that they won’t treat me as my Ms is mild… I know perfectly that this can change any time. I have an appointment in March and am debating whether to fight for treatment? I will be interested to see what everybody else thinks. Ive read about all the different diets and supplements but how confusing and conflicting they seem to be?!

If it was me I would grab the Medication with both hands. You wouldn’t want to regret it a few years down the road. I inject Copaxone daily and its a doddle. Good luck x

Hi Oliver

A lot of research suggests the sooner you start the better. There is what appears to be a window of opportunity early on in the disease course. DMT’s do come with risks but the risk of not treating MS is significant. I would have a discussion with your MS nurse about your options. At the end of the day it has to be your choice and fit with your lifestyle. Your right to spend time thinking about it as it is a big decision.

Sennan, have a look at this document http://www.england.nhs.uk/wp-content/uploads/2013/10/d04-p-b.pdf

Its the current commissioning paper and states the starting criteria for DMT’s. It was published before Lemtrada was licenced though.

Have you had relapses? MRI activity? What rationale has been given when describing your MS as mild?

Yes Sennen, it is all very confusing and overwhelming.

I think, after reading your comments, that the best step would do to in fact get onto medication. The sooner the better, I guess.

Thank the heavens I’m no longer scared by needles, like how i was when I was younger.

I shall look at all the options available to me x

why are we in this dilemma - some neuros wont prescribe anything whilst the m.s. is ‘mild’ others believe the m.s. should be hit hard in the initial stages.

What does the research actually say and why do some neuros accept some findings whilst others dismiss them.

Do they have any idea what they are doing?

Perhaps because medicine is not pure science, where you can just read what to do off a table, but at least part art?

Neuros, like their patients, have varying attitudes to risk. Every treatment has risks. Some neuros will lean more heavily towards the benefits, others will be more mindful of the risks.

I don’t think either approach is “wrong”, although it certainly helps if neuro and patient are either both cautious or both proactive, otherwise you get the situation where it’s hard for them to reach a deal about the best way forward.

Tina

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Both neuros and patients should be guided by the results of empirical research.

Where are the results on the efficacy of certain drugs?

There’s a lot of money spent on research but very little conclusion

I don’t know why that came up as anonymous!

Hugs, Sennen x

Correct. The reason is to help protect you against future MS attacks and their lasting damage.

It has kept me as well as I can be for 15 years, and I am very grateful for that.

Absolutely. Once the damage is done, it’s done; no use waiting until the horse has bolted. It’s good that you’ve got a neurologist who wants to get in there fast and help you to protect yourself.

Good luck with it all.

Alison

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Why would you want to wait until you get worse before starting treatment?

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From what I understand, the best DMTs (Tysabri and some others?) have been shown to reduce relapse rates by 66% and accumulated disability by something similar. These figures come from Stage III trials done by the drug companies before the drugs are licenced. These are large double blind, placebo-controlled trials. The neuros know, and we can know (if we bother to find out) how well the drugs work. We and they can also know the risks associated with taking these drugs. If you are offered the drugs, you have to weigh up the risks and benefits and make a decision.

I was confused by krakowian’s comment

"Where are the results on the efficacy of certain drugs?

There’s a lot of money spent on research but very little conclusion"

The efficacy of the drugs is known and there are conclusions on these things. The conclusion at the moment is that people with MS should be offered powerful drugs, early after diagnosis.

I count myself as lucky; I didn’t have a dilemma. I had two significant relapses within 3 months at the outset and was told I should start on DMDs asap. I agreed as I didn’t want another relapse where I could barely walk. I started on Rebif and it kept me relapse free for almost 5 years with few side effects (after the initial first months).

I’m now on Gilenya as I had another two disabling relapses whilst on Rebif. I may have been lucky without the Rebif but I wasn’t prepared to take the chance. If I’d continued to have relapses that severe without medication I really don’t like to think what state I’d be in now. As it is, I’ve recovered quite well but do need a walking stick when outside for balance and because my left leg is still a bit dodgy.

You don’t have to opt for injectables as the first line treatment now. Some neuro’s will put you straight on the more powerful drugs and there are two tablets offered as first line treatment so definitely do some research and talk to your neuro. Just because you can’t see or feel any damage doesn’t mean there isn’t any. MS is a sneaky little disease and can be working away quietly in the background …

Best wishes

Tracey xx

I hate the phrase “just see how it goes” with an untold amount of passion.

Thank you people, for your comments. For myself I’m just having to get on with it, at the moment. I can’t get put on any medication until one of my next appointments, but I think I shall definitely go onto treatment asap. Also, as a added bonus, I need to eat a whole heap more health. Fresh fruits and veg, rather than all of these saturated fats and what not. Health is wealth, so I’m going to try and do the best for my body that I possibly can.

Whammel: I never once said I’d want to get worse before starting treatment. That’s just silly, come on now.

Yeah I know Tracy, I think that’s what I find most scary about it - how you could be fine and then boom, the next day you’re having a relapse.

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Also I just wanted to ask people how old they were when they were diagnosed and how many years it took for them to become disabled to an extent, if they did ultimately become disabled. I know that not everyone does so just wanted to ask others.

MS is a nonsense.

No one knows why certain people get it, what triggers it, what provokes a relapse, what the prognosis is, what the extent of disability will be, or even how the medicines bloody well work.

However, as said before, the general consensus is the sooner you start the meds, the better. And frankly, if no down side needs to be endured to enjoy the benefits of them, why wait anyway?

For me, Tecfidera (no needles required and a reduction of bad stuff developing by half) was so obvious i would be worried i suffered more than just MS had i refused to start it!

Good luck and for your own sake, get proactive!

Nothing has “no downside”. At the very least, you are accepting a risk of some sort, even if it’s only small.

The equation is always whether the downside (risks, side-effects, whatever) is justified in the context of the alternative. Sometimes that is very clear, to the extent there’s no decision to make. Sometimes it isn’t.

Ultimately, everyone needs to discuss it with their neuro and decide what is right for them - not submit the decision to public vote. No two people are the same: their MS won’t be the same, their attitudes to risks or side-effects won’t be the same.

It’s just occurred to me it’s quite similar to financial planning. You can’t say whether a product is “right” for someone - or even whether they need a product at all - unless you’ve properly understood their circumstances, their goals, hopes and expectations, and their attitude to risk.

Tina

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As Chairman Mao is reputed to have said when asked whether he thought tha the French Revolution had been a success, ‘It’s too early to say.’ I’ve only had it 15 years. Dx age (I think) 36. My MS has been aggressive from the start, so it has always been a matter of trying to stay one step ahead with the drugs or, unsuccessfully, to play catch-up once or twice when I ought to have switched to the hard stuff a little earlier than I did. Which is why I now have a fair bit the matter with me, but it you saw me out shopping locally with not far to walk, you wouldn’t even know, as long as I was looking where I was going.

Alison

hi oliver

i got my diagnosis the week before my 50th birthday.

i had a demanding career, the main job i loved but a load of admin had been added.

i went on copaxone straight away and it did good for me until last year when my injection sites became painful.

this year my ms nurse was horrified by the massive dent in my arm and so she put me on tecfidera.

tec is great, no more faffing around with hot pads, cool pads, needles and massage oil.

you might be interested in the snack i’ve just had (re your healthy eating).

greek yogurt with fresh mango and blueberries!

deeelicious!!

carole x

I was officially diagnosed 2 days after my 43rd birthday. I’d only had my first symptoms 3 months before so it came as a huge shock.

I’ve been trying to eat better for the past few months too - not for the health benefits so much but because it’s too expensive to keep eating convenience foods. So I’ve been making more use of my slow cooker and cooking in bulk so that I have my own convenience foods in the freezer to use up later. It’s been better for my waistline too. I’ve also been cooking one pot meals in the oven like pasta bakes etc so that I have leftovers to reheat the next night. I still only cook about 3 nights a week yet I’m eating better. I struggle to chop vegetables so I do buy frozen ready chopped casserole veg but that’s as far as cheating goes these days.

Tracey x