Last reply 4 months ago
DMDs

Hello all,
I joined this site about 3 or 4 years ago but have never really posted much, but now I’ve come to a point where I could really do with a bit of help from some of you experienced drug users.
I had my first ms relapse when I was 20, I had about 3 more in 10 years but wasn’t diagnosed until i was in my 30s as they said they didn’t know what it was (despite hospital records telling a different story which I’m a little bitter about, but by the by).
Anyway I’ve had a few more relapses, and my disability has got really bad over the last 4-5 years. So finally, after 23 years, the nhs have decided to offer me some drugs! Think they wanted to wait until I really couldn’t walk very well until they were convinced I needed them.
To be fair, I’ve just got a new neurologist who’s great and actually proactive, yippee.
So, what I’d like to know is, of the milder drugs which are the ones I’m considering, what are the pros/cons. What expereriences have you had? Are injections scary? Really I’d just like to know experiencesso I can way up the options. Happy to hear experiences of the harder drugs too.
Thanks a lot.

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dominics
4 months ago

What do you mean by ‘milder’ drugs?


kimarie
4 months ago

Well, @dominics it looks like, from my ms trust pamphlet that there are a whole load of drugs – some for ‘active’ some for ‘agressive’ And some for ‘very agressive’ and they range in side effects. The drugs for ‘active’ seem to have fewer, or less severe side effects but only halt relapse rate by 30%. These are the ones I’m thinking of taking, but would like to hear about experience of the others too.


dominics
4 months ago

@kimarie I was interested to know how you understood it. Not a challenge!

On the Shift MS site you may find the 8nterviews of the leaders in the field at ECTRIMS last year.

The Bart’s MS blog is particularly up to date. Professor Gavin Giovanni – and many others – talks about inverting the pyramid with regards to treating MS. Well worth reading and googling around that.

I was talking at length with my specialist MS Nurse today (whilst having my first Ocrevus infusion!). He was saying that this concept of going in as hard and as soon as possible is getting traction.

Side 3ff3cts on a data sheet are not certainties. They are ranked in likelihood. I had nothing at all today. Nothing. I might have had several. None of the most common ones (1 in 10 or 1 in a 100) are life threatening in a controlled clinical environment.

How a data sheet is constructed is a very strictly controlled process. It is the result of the trials, during which it is a learning process regarding mitigating the administration and developing the best protocols.

For example: I had to have 13-14 blood tests prior, a chest x-ray, several extra immunisations, and only then was I deemed suitable. There was an article published today in the US on this very topic for Ocrevus and how adverse events are better prevented or minimised.

Best,

Dominic


kimarie
4 months ago

Thanks for the tips @dominics I’ll do more reading. Seem to have had this damn thing so long and I know so little.


dominics
4 months ago

@kimarie I understand. I spent the first 5-7 years just ignoring it. Sadly, the bloody thing doesn’t go away.

The irony was that I was working in the pharma industry and my then girlfriend ran clinical trials.

I finally engaged with the MS service in Oxford when I decided to get Rebif, some 15y ago.

The big difference with drugs and MS is the way people often thing of them in the same way as, say, painkillers. You take them and they work or they don’t and you can tell. Drugs for MS are long term things to try and increase the time between relapses and decreasing the severity of them. This is also expressed as slowing disease progression. The only way to assess the efficacy is with long term, placebo or comparator therapy trials. The results are measured over time and it is always a risk/reward scenario. Even ibuprofen can do bad things to you but as it is so freely available we all forget that. The data sheet for that can be alarming.

Whereas treating a headache or not is unlikely to have a long term impact, leaving MS untreated has a demonstrably poor outcome. There is no doubt about the way the disease progresses and the ultimately bad effects it has. Not treating MS because ‘it isn’t a problem now’ or ‘I/a friend knew someone with MS and it didn’t bother them’ is like a smoker saying that they are fine at the moment or they know of someone who smoked and lived to 99 type thing. It isn’t a credible comparison.

One of the very sad things with chronic illnesses is the people who prey on the understandable desparatuon of those of us with them. We’d all love a magic cure. They are happy 5o make upnpseudo-scientific unproven woo to part the desparatuon from 5heir money. It is reprehensible. Evidence based results generated using the scientific method are the only thing to rely on.

*Rant over*

I loathe the charlatans. Follow @docbasta4d on Twitter. He is an American surgeon who debunks nonsense like this. @bengoldacre is great too. He is UK based.

The question to ask a neuro is why they don’t recommend the most efficacious treatment? Is it money (doubtful) or more likely their lack of clinical experience with the drug. Go to a centre of excellence. It is worth the extra petrol. Just ask your GP to refer you to the nearest to you.

Best,

Dominic


wendyhills
4 months ago

@kimarie my experience with DMD or DMT is cladribine (mavenclad). I was led to believe initially by my neurologist that I had a choice in which I felt most comfortable taking. Like yourself I considered the lesser effective treatment as I felt more comfortable with the potential dangers/side effects. However after considering my most recent MRI my neurologist said I had highly active lesions we needed to hit hard and fast and there was only a small window of opportunity and she wanted me to take cladribine. The point I’m kinda trying to make is at the end of the day it is really what your neurologist thinks is the best treatment for you in-particular as we all are different. Scary as cladribine sounded I have finished week 1 month 1 and due to start week2 month 2 on Monday I have had no side effects or bad experiences and the course is just 5 days in month 1 and 5 days in month 2 then nothing for a year and then same again year 2 then that’s it. I suppose the results in June of my latest MRI will tell if it’s being effective Good luck with whatever decision you make x


chvck
4 months ago

It’s worth bearing in mind that you have to meet certain criteria to be eligible for some drugs, though if you’re looking at “mild” ones then this may not be an issue.

I started on betaferon which is injected, initially I used a kind of mechanical helper tool in which you put the needle and it took care of injecting. After a while I just started injecting directly though, the first time that I did that it was pretty surreal and daunting but became normal very quickly. I’m now on Mavenclad and have also used Tecfidera. I’ve had no side effects on any medication but know that other people most certainly have so I think that’s a bit luck of the draw.

I’ll also note that I *mostly* follow the overcomingms diet, which I found on my own but my new neurologist did actually ask me about my diet and saturated fat intake. Whether or not this is effective is, obviously, questionable but having read the book it makes sense to me and on the off chance that it helps I’m willing to follow it. As @dominics says evidence based studies are the best but when it comes to things like diet are difficult to do. There are various other diets which raises more questions than answers about whether they work or not too.

Best of luck.


dominics
4 months ago

@chvck Things are changing fast in the approach to treatment. The Rx criteria are changing too. Quality of life, as reported by the patient must also be given far more weight in the Rx decision making now.

I get the impression that there is a deceasing belie in the idea of a milder MS necessitating a step-wise approach. The thought seems to be that whatever the ‘degree’ of the MS, it ought to be hit as fast and as efficaciously as possible to hinder the progression as much as possible, as soon as possible. It is expressed as the concept of ‘Inverting the Pyramid’.

I too injected with an auto-injector and soon went to a fully manual approach 😉

Best,

Dominic


kimarie
4 months ago

Thanks all, this is all really helpful. Don’t think I actually do meet the criteria for some the more powerful drugs, despite the ‘hitting hard’ approach. But then I have a weird ms that never seems to be active when I have an mri but I have the odd relapse and get more and more unable to do stuff. Grrr I say.
@wendyhills it’s interesting that you say the neurologist has an idea of what’s appropriate for you – my neurologist said, yes we’ll get you on drugs, I’ll book you into the clinic. Apparently at the clinic you get about 15 minutesand you need to have pretty much decided on what you want to take already!
Thanks again for the feed back it really is great to hear other people’s experiences.


funnybank
4 months ago

I am generally allergic to everything I take. I’ve even developed an intolerance to toothpaste, so with that in mind I have been hesitant to take dmt’s. I have a new neurogist who is younger and more insistent on trying things out. I tried tecfidera which seemed to be fine just the mild flushing until I took the higher dose and I felt like i’d been pumped up by a tyre inflator. And nausea and constipation. Now I am on aubagio which doesn’t seem to be marketed as being very effective so I’ll see what happens with my next mri. I’m only 2 months in so not sure how much hair I’m going to lose at some point but at the moment I have urgency and mild diaorrhea at one point in the day and quite a severe loss in appetite. My neuro found out about the symptoms and suggested pledrigy but I’m a bit scared of flu like symptoms being more difficult to manage than my ms. Good luck with your choices


stumbler
4 months ago

@kimarie , don’t be rushed into any decisions that you don’t want to make quickly. This is your body, not theirs……

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