Forum

dmds working ?

I have ppms so theres no viable dmds for me.I was wondering what,if anything,im missing

do the dmds people who have rrms take actualy work 100 % or is it a hit and miss affair

just curious
cheers
Andy x

It’s hit and miss. For some, they don’t work at all, for others, they work a bit, and for some, they work very well. On average (i.e. across everyone taking them) they reduce relapses by about 30%, but there’s no way of predicting whether a particular individual will fare worse than that, or indeed better.

In any event, none of the standard firstline DMDs actually “stops” MS. Some of the bigger guns that are only prescribed when MS is very aggressive, or when firstline drugs have failed, are getting closer, but come with correspondingly higher risks.

Tina

cheers tina that confirms whati thought.I thik ifi had rrms i wouldnt take any as some of the side effects dont seem to be worth any benefits
Andy x

Hiya

I’ve got RRMS and I’m so glad that there are DMD’s available to us. Before I started DMD’s I had 5 relapses in 6 months, I started Rebif (didn’t get any of the nasty sided effects) and I didn’t have a full relapse for 2 years. Unfortunately it stopped working and I went back to realsping ever 6 weeks. I’m now on Copaxone (after having Mitoxantrone) and I’ve had 2 small sensory relapses in 3 years.

Yes I still have to put up with the effects of my MS, wobbles, cognitive probs etc BUT I’m not having big relapses all the time and can function in my day to day life which although it may not be how it used to be it’s better than having horrible relapses all the time.

Sue

andymorecambe wrote:
cheers tina that confirms whati thought.I thik ifi had rrms i wouldnt take any as some of the side effects dont seem to be worth any benefits Andy x

Not everyone suffers side effects. I have never had them and I’ve been on Rebif for 11 years. My neuro reckons that it’s kept me in RRMS, but I reckon it’s good luck.
You can work out the percentage - I had relapses every 6-8 weeks over 2 years before diagnosis and 4 whilst on Rebif. Basically, 4 in 10 years is a pretty good result.
x

andymorecambe wrote:
cheers tina that confirms whati thought.I thik ifi had rrms i wouldnt take any as some of the side effects dont seem to be worth any benefits Andy x

I bet you would seriously consider them if you had RRMS - relapses can be mild with almost full recovery or have you off your feet for months and if DMDs can prevent that, wouldn’t you give them a go? Relapses are nasty horrid things and if we can prevent just one, it’s worth it.

There’s a lot made of the flu like side effects which for many don’t happen at all and for people like me were comtrolled with paracetamol. That was for the first few weeks then nothing since for the last 8 years. So I am concerned that new visitors to the site aren’t put off by reading about side effects that my never happen.

Val

not sure if your aware val but theres nothing at all out there for ppms its just symptoms all the time just varying by degrees.its very easy to feel as if its a diferent beast to rrms .people with ppms do realy get the worst end ofthe stick.
so yes if there was any sort of treatment id give it a go ,so maybe people with rrms are a bit luckier than us with ppms but i dont want to enter a my ms is worse than yours competition its a dreadful thing for all of us
Andy x

andymorecambe wrote:
not sure if your aware val but theres nothing at all out there for ppms its just symptoms all the time just varying by degrees.its very easy to feel as if its a diferent beast to rrms .people with ppms do realy get the worst end ofthe stick. so yes if there was any sort of treatment id give it a go ,so maybe people with rrms are a bit luckier than us with ppms but i dont want to enter a my ms is worse than yours competition its a dreadful thing for all of us Andy x

I couldn’t agree more Andy, it’s shameful that there is so little for PPMS.

andymorecambe wrote:
cheers tina that confirms whati thought.I thik ifi had rrms i wouldnt take any as some of the side effects dont seem to be worth any benefits Andy x

Sorry, but I think you might be misinformed.

The standard injectable DMDs

The more common side effects with interferon are typical fairly mild flu-like symptoms which can be eased by paracetamol or ibuprofen. The injections also tend to leave marks / bruises. More severe reactions are very rare and patients are monitored for them. With Copaxone the common side effect is lumps and redness at the injection site. There are no flu symptoms at all, but the odd person might very rarely experience a completely benign kind of panic attack after an injection. You don’t even need to be monitored after the first injection of Copaxone.

Now for this 30% figure. It doesn’t sound a lot, BUT just one relapse can make a world of difference. My bad one last year took me nearly 5 points up the EDSS scale and I’ve stayed there; it ain’t getting better despite me being in remission now. At the time I wasn’t on a DMD. And boy do I regret it. Because it’s not just the 30% figure that the injectable DMDs deliver - they also reduce the severity of the relapses that the patient still has and they can delay the onset of progression and disability. So if I’d still been on Copaxone I might never have had the relapse in the first place, and even if I had, it probably wouldn’t have been so bad.

Worth the odd lump and bruise? Damn right!
(Incidentally, one of the main reasons that people with RRMS reject DMDs is because they don’t like needles. Well, I don’t like relapses.)

Tysabri
Only people with highly active / aggressive RRMS get this (or relapsing SPMS). It comes with the risk of PML. The very very tiny risk of PML. Which is monitored for. Which there are procedures in place to halt if detected. Which no one in the UK has died from. Moreover, you can’t get PML unless you carry the JC virus. There is a new test for the JC virus. However, some long-term users of Tysabri would happily continue using it even if they carried the virus - just ask Chubbster and Markolad. The reason? - because the average reduction in relapses on Tysabri is about 70%. Now some people don’t respond to Tysabri at all. So the people who do respond to it actually get a higher reduction in relapses than 70%. And the number of lesions actually reduces. Progression slows. And existing symptoms can improve!

Would you refuse a treatment that could actually make your existing symptoms improve and even stop your frequent and sometimes severe relapses and progression, but that comes with a one in a thousand chance of catching PML, which the hospital will be monitoring you for and which they will immediately do something about?

What about DMDs for PPMS?
Did you know that there is a fortune being spent on researching this? For example, there is a trial just starting for a drug called masitinib. According to the media, the primary end point (i.e. the main measure of the study) is the proportion of patients who get a 100% improvement in symptoms. I cannot even comprehend what that would be like - 100% improvement in symptoms! The downside: only 30% of patients respond to it at the moment. Well I guess it’s not worth trying then? I don’t know what the potential side effects are, but they are supposed to be less than the likes of Tysabri and Fingolimod/Gilenya. How much would you risk for a 100% improvement in your symptoms?

Please do not believe the scare stories and the raw numbers - it is a far more complicated picture. No one should make a decision about DMDs without considering all aspects.

Karen x

andymorecambe wrote:
not sure if your aware val but theres nothing at all out there for ppms its just symptoms all the time just varying by degrees.its very easy to feel as if its a diferent beast to rrms .people with ppms do realy get the worst end ofthe stick. so yes if there was any sort of treatment id give it a go ,so maybe people with rrms are a bit luckier than us with ppms but i dont want to enter a my ms is worse than yours competition its a dreadful thing for all of us Andy x
Hi again Andy,

Not everyone with RRMS elects for treatment, even if they’re eligible. My neuro told me 50% decline. I’m one of that 50%.

I think whether or not it’s “worth it” depends very much on how aggressive you perceive your MS to be: how frequently you’ve been relapsing, and how disabling they were.

I’ve been lucky, so far, to have only infrequent relapses, and none that was severely disabling. I thought carefully about my past, and reckoned I’d had MS for years without realising. Obviously never being treated in all that time.

So I reckoned, why bother now? I thought permanent injections, along with any possible side-effects, would adversely affect quality of life. And at the rate I currently relapse, I wasn’t sure I’d notice any benefit at all, even if they were working. So I decided no.

I’m very glad my neuro told me about the 50% refusal rate, because sometimes, round here, I feel as if I’m the only person mad enough to turn them down. The reality is lots of people do. My neuro said he’d have done the same, in my position. He’s not anti-DMDs, and neither am I, for that matter. He’d have been quite happy to give the green light if I wanted them. But he admitted he didn’t think they’d make a huge difference to me in ten years time, so on that basis, he was quite happy to leave things as they are. He promised he’d tell me if he thought I was being silly, but he didn’t think I was. So for now, both he and I are happy.

I can always reconsider if my MS becomes more active. The decision isn’t binding for life.

Tina
x

I wish I could find the report that stated the % of refusals that were because of fear of needles / injecting. All I remember is that it is very high and that most of these individuals would happily take a pill, even if it had the same benefits and side effects as the injectable.

Incidentally, it is all very well saying that the decision to refuse DMDs isn’t binding, but unfortunately there are criteria and just one relapse can leave patients unable to walk the 100 metres unassisted - in which case, it’s too late. However, if you have a relapse like that while you’re on a standard DMD you are likely to be offered a stronger one, which might just get you walking better again.

It’s probably also too late to get the benefit of slowing the onset of progression because the cut off point for that is 2 years from diagnosis on average.

Ultimately it is the individual’s personal choice. If they aren’t scared of what their MS might bring, then good on them and I wish them the best of luck. Me? I’m not so brave. My MS was very mild for the first 12/13 years post diagnosis (and I can trace relapses back for 14 years before that) - in the past year I’ve had back to back relapses, gone from an EDSS of about 1 to 6 and had to give up work completely.

The only thing certain about MS is that it is not predictable. The past does not predict the future. Certainly in my case :frowning:

Kx

Anitra wrote:
I can always reconsider if my MS becomes more active. The decision isn't binding for life.

Hi Tina,

I had a neuro like yours who didn’t consider my MS “severe” enough to justify DMDs. I ended up changing neuros and my new neuro got me onto Copaxone immediately. Sadly I was allergic to it which is extremely rare and I was switched over to Betaferon and I was allergic to that as well. So I tried Avonex and was allergic to that. This is so rare it is almost unheard of.

In this time the MS had become extremely active and I had gone from walking 10kms with ease to being in a wheelchair.

I am now on chemo to slow things down. But a hell of a lot of irreversible damage has already been done.

I wish that a) I had been offered DMDs MUCH MUCH earlier and that
b) I wasn’t allergic to the standard 4.

You are very fortunate that to date your MS has been fairly benign but there is no guarantee it will stay that way. DMDs are the best preventative medicine we have in the MS armoury at this stage and I would hate for others considering going onto DMDs to come away from this thread thinking that they are not particularly worth while. They can make the difference between an independent life and needing a carer come in every day to assist you as I now do.

All the best and hoping your MS continues to treat you kindly,

Belinda

Anitra wrote:
andymorecambe wrote:
not sure if your aware val but theres nothing at all out there for ppms its just symptoms all the time just varying by degrees.its very easy to feel as if its a diferent beast to rrms .people with ppms do realy get the worst end ofthe stick. so yes if there was any sort of treatment id give it a go ,so maybe people with rrms are a bit luckier than us with ppms but i dont want to enter a my ms is worse than yours competition its a dreadful thing for all of us Andy x
Hi again Andy,

Not everyone with RRMS elects for treatment, even if they’re eligible. My neuro told me 50% decline. I’m one of that 50%.

I think whether or not it’s “worth it” depends very much on how aggressive you perceive your MS to be: how frequently you’ve been relapsing, and how disabling they were.

I’ve been lucky, so far, to have only infrequent relapses, and none that was severely disabling. I thought carefully about my past, and reckoned I’d had MS for years without realising. Obviously never being treated in all that time.

So I reckoned, why bother now? I thought permanent injections, along with any possible side-effects, would adversely affect quality of life. And at the rate I currently relapse, I wasn’t sure I’d notice any benefit at all, even if they were working. So I decided no.

I’m very glad my neuro told me about the 50% refusal rate, because sometimes, round here, I feel as if I’m the only person mad enough to turn them down. The reality is lots of people do. My neuro said he’d have done the same, in my position. He’s not anti-DMDs, and neither am I, for that matter. He’d have been quite happy to give the green light if I wanted them. But he admitted he didn’t think they’d make a huge difference to me in ten years time, so on that basis, he was quite happy to leave things as they are. He promised he’d tell me if he thought I was being silly, but he didn’t think I was. So for now, both he and I are happy.

I can always reconsider if my MS becomes more active. The decision isn’t binding for life.

Tina
x

The point about the Interferons/Copaxone Tina is that they are designed to reduce the severity and frequesncy of future relapses so are best started early. If someone waits till their MS ‘becomes more active’ they may well have missed the opportunity of using them because they will have progressed too far.

It’s a difficult decision for some, but there is no way any neuro can tell what will be happening with your MS in ten years’ time. I wonder how he thinks he can?

“so yes if there was any sort of treatment id give it a go ,so maybe people with rrms are a bit luckier than us with ppms but i dont want to enter a my ms is worse than yours competition its a dreadful thing for all of us”

Very true. I was replying to Tina, but the phrase MS- it’s all shades of bad, popped into my head.

To be honest, RRMS can be awful. I almost died during my first relapse and I have a good friend who was paralysed from the neck down in her first relapse.
I still have life-threatening symptoms when I have a relapse, so get steroids immediately now. The older I get, the more the risk of stroke, so I have to be good and do all the right things.

There should be something that works for PPMS (not just LDN and clean living) and it’s dreadful that there isn’t.
I have been reading at various places that it is a quite different type of MS. Maybe the new stem cell treatments will do something to help with PPMS.
best wishes,
K
xx

Anitra wrote:
andymorecambe wrote:
not sure if your aware val but theres nothing at all out there for ppms its just symptoms all the time just varying by degrees.its very easy to feel as if its a diferent beast to rrms .people with ppms do realy get the worst end ofthe stick. so yes if there was any sort of treatment id give it a go ,so maybe people with rrms are a bit luckier than us with ppms but i dont want to enter a my ms is worse than yours competition its a dreadful thing for all of us Andy x
Hi again Andy,

Not everyone with RRMS elects for treatment, even if they’re eligible. My neuro told me 50% decline. I’m one of that 50%.

I think whether or not it’s “worth it” depends very much on how aggressive you perceive your MS to be: how frequently you’ve been relapsing, and how disabling they were.

I’ve been lucky, so far, to have only infrequent relapses, and none that was severely disabling. I thought carefully about my past, and reckoned I’d had MS for years without realising. Obviously never being treated in all that time.

So I reckoned, why bother now? I thought permanent injections, along with any possible side-effects, would adversely affect quality of life. And at the rate I currently relapse, I wasn’t sure I’d notice any benefit at all, even if they were working. So I decided no.

I’m very glad my neuro told me about the 50% refusal rate, because sometimes, round here, I feel as if I’m the only person mad enough to turn them down. The reality is lots of people do. My neuro said he’d have done the same, in my position. He’s not anti-DMDs, and neither am I, for that matter. He’d have been quite happy to give the green light if I wanted them. But he admitted he didn’t think they’d make a huge difference to me in ten years time, so on that basis, he was quite happy to leave things as they are. He promised he’d tell me if he thought I was being silly, but he didn’t think I was. So for now, both he and I are happy.

I can always reconsider if my MS becomes more active. The decision isn’t binding for life.

Tina
x

The only people I know who have been offered DMDs but have refused them are either needle phobic or have never experienced a disabling relapse.

I didn’t go through limbo land. I woke up one day paralysed from the waist down and was diagnosed immediately with MS. With hindsight, I’d had MS for probably over twenty years without realising it but I was having funny things going on like numb hands, wobbly legs, poor balance…all minor little relapses which were so intangible I never even mentioned them to my GP, until that day when I woke up unable to walk. I was offered DMDs immediately upon diagnosis.

The choice for me was inject yourself 3 times a week, maybe experience some fluey side effects (which never actually happened for me btw), potentially reduce your relapse rate and severity by 30% on average or run the risk of waking up again paralysed from the waist down or something far worse.

I chose to take the route recommended by my neuro & thank god I did. It staved off the relapses for over three years, but when they hit they floored me and each one took another bit of my mobility and quality of life away. When faced with that kind of future, for me it was a no brainer. If I’d known then what I know now, I would have gone to my GP much sooner with these little niggles and I would have moved heaven and earth to get onto DMDs much earlier.

I also find it very strange how some people are prepared to go under the knife for a totally unproven procedure like CCSVI, but will attempt to discredit proven treatments like the licensed DMDs.

Each to their own I suppose.

rizzo27 wrote:
andymorecambe wrote:
cheers tina that confirms whati thought.I thik ifi had rrms i wouldnt take any as some of the side effects dont seem to be worth any benefits Andy x

Sorry, but I think you might be misinformed.

The standard injectable DMDs

The more common side effects with interferon are typical fairly mild flu-like symptoms which can be eased by paracetamol or ibuprofen. The injections also tend to leave marks / bruises. More severe reactions are very rare and patients are monitored for them. With Copaxone the common side effect is lumps and redness at the injection site. There are no flu symptoms at all, but the odd person might very rarely experience a completely benign kind of panic attack after an injection. You don’t even need to be monitored after the first injection of Copaxone.

Now for this 30% figure. It doesn’t sound a lot, BUT just one relapse can make a world of difference. My bad one last year took me nearly 5 points up the EDSS scale and I’ve stayed there; it ain’t getting better despite me being in remission now. At the time I wasn’t on a DMD. And boy do I regret it. Because it’s not just the 30% figure that the injectable DMDs deliver - they also reduce the severity of the relapses that the patient still has and they can delay the onset of progression and disability. So if I’d still been on Copaxone I might never have had the relapse in the first place, and even if I had, it probably wouldn’t have been so bad.

Worth the odd lump and bruise? Damn right!
(Incidentally, one of the main reasons that people with RRMS reject DMDs is because they don’t like needles. Well, I don’t like relapses.)

Tysabri
Only people with highly active / aggressive RRMS get this (or relapsing SPMS). It comes with the risk of PML. The very very tiny risk of PML. Which is monitored for. Which there are procedures in place to halt if detected. Which no one in the UK has died from. Moreover, you can’t get PML unless you carry the JC virus. There is a new test for the JC virus. However, some long-term users of Tysabri would happily continue using it even if they carried the virus - just ask Chubbster and Markolad. The reason? - because the average reduction in relapses on Tysabri is about 70%. Now some people don’t respond to Tysabri at all. So the people who do respond to it actually get a higher reduction in relapses than 70%. And the number of lesions actually reduces. Progression slows. And existing symptoms can improve!

Would you refuse a treatment that could actually make your existing symptoms improve and even stop your frequent and sometimes severe relapses and progression, but that comes with a one in a thousand chance of catching PML, which the hospital will be monitoring you for and which they will immediately do something about?

What about DMDs for PPMS?
Did you know that there is a fortune being spent on researching this? For example, there is a trial just starting for a drug called masitinib. According to the media, the primary end point (i.e. the main measure of the study) is the proportion of patients who get a 100% improvement in symptoms. I cannot even comprehend what that would be like - 100% improvement in symptoms! The downside: only 30% of patients respond to it at the moment. Well I guess it’s not worth trying then? I don’t know what the potential side effects are, but they are supposed to be less than the likes of Tysabri and Fingolimod/Gilenya. How much would you risk for a 100% improvement in your symptoms?

Please do not believe the scare stories and the raw numbers - it is a far more complicated picture. No one should make a decision about DMDs without considering all aspects.

Karen x


hello, totaly agree with you here… talking from my own experiences…,. I am on tysabri and the difference to me has been amazing… had one very small relapse just after xmas( was having unrelated medical probs going on at the same time which contributed to this) I atually had to come off Tysabri for 6mths as i was poorly and awaiting a total thyroidectomy. In that time i was very worried that at any time the MS could have creaped up on me (pre tysabri had so many relapses).Was over the moon when I was able to re start my monthly tysabri infusions again… I recently had the test for JC virus
It came back possitive… which increases my risks a wee bit more… my reaction?.. I am going to continue with Tysabri… I personally would prefer to take that risk as my life has imporoved so much with out the constant effects and worries of further relapses… I am monitored very closely … and have constant support if i had any worries … some may say I must be mad!! lol … hey life one big gamble with or without MS… the facts are all available and agree peope should consider all aspects re choice of DMD’s… all up to the individual at the end of the day

best wishes sarah XX

I have read all replies. They are brilliant - very informative. I am on Rebif and have been relapse free for 2 years. No side effects to speak of - just a slight headache which I do not get if I remember to take paracetamol. No one has so far mentioned that taking interferons can result in a low white cell count. This has happened to me and so I have regular tests. I suppose I have had a side effect from rebif if you count this. Also, no one has mentioned that many many people with PPMS take LDN and find it a great help. Roger.

Hi Andy,

I believe its hit and miss I was on Avonex I gave it 9 months it didn’t work for me I was just having relapse after relapse things got very bad for me I got the chance to take Tysabri I grabbed it with both hands its been amazing for me I’ve been on it 3 years there on August and I haven’t had a single relapse.
Relapses for me where bad and always left me bed bound the first few relapses I recovered from but as time went on steroids didn’t really work that well they just made me put on weight.

I know there’s a risk of PML but its a risk I’m willing to take I don’t know if I have the JC virus and to be honest I don’t care going from having to use a wheelchair and only having use of my left hand and getting to almost 23 stone with all the steroids and not being able to exercise to being able to walk have all the full use of my limbs and being off steroids watching what I eat and loosing 10 stone I am able to goto the gym a few times a week now I wanted to tone up and build my strengh up again I put on a stone and a half but its all musle now :slight_smile: I feel fitter and healthier than I’ve ever felt in my life.

I think when things got that bad and being able to get to where I am today it makes it easy for me to carry on with the Tysabri,
I know it doesn’t work for everyone and I would never tell anyone they must take it the normal DMD’s work fine for some people and some my think they’d never risk taking anything like Tysabri thats there choice I seen where I was going and it wasn’t nice I took what ever I could nothing else worked for me.

Mark

I just want to add to the positive vote on DMD. I was dx at the start of 2011 after 2 episodes the second which left me with real mobility problems, led to my having to give my beloved job up (though I was given a different one by v nice company!) and as I was told that I have very active RRMS I am sure the main reason I haven’t been hit again is because I am on copaxone
Clarex

“I have also read that its worse to start a DMD and stop than it is to have never taken them. I don’t know how true this is so don’t take it as fact but it seems the MS can be more aggressive if someone as been on a DMD especially something like tysabri or even copaxone and then stopped it.”

Which leads us to the MS paradox. How do you know if your DMD is working or not?
Well, as someone who’s been on a DMD for a very long time, I know that it’s done what it was designed to do - cut the relapse rate.

If you were to take the above example - how does the person whose MS becomes aggressive know this?
What if their DMD was working and they stopped treatment and so had more relapses. Anyone who has stopped their DMD or had it withdrawn dreads this.
I haven’t had bad side-effects, so I was happy with my DMD.
I worked very hard to get my MS into a calmer state. It took a very strict diet and exercise and it did the trick. This stopped the awful fatigue.
However, I learned that relapses can still happen. After 3 years of no MS activity and a much better quality of life, I took a risk and moved countries. It wasn’t until I’d been without Rebif for 8 months that I had an awful relapse.
I don’t think that’s a rebound reaction. It just showed me that Rebif had worked.
I didn’t choose to stop Rebif, but had run out after moving to Spain.
After a week in hospital, my neuro told me that he’d apply for funding for me to restart Rebif and so I did, along with LDN, which I’d had to stop whilst I was in hospital.
This was Spring 09 and I haven’t had a relapse since then. I’ve had bad nights and bad days, but nothing like a relapse.

I started treatment in 2000 and I’ve always been confronted by this problem. How do I know it’s working?
I think after all this time that it’s done what it’s supposed to do - cut the relapse rate.
This is an awful disease, but for the most part it’s not the worst disease. If you have RRMS or PRMS then there are treatments that can stop relapses.
If you are having lots of relapses and are offered treatment, then don’t take a risk. Keeping mobile and on top of MS is the best thing you can do. Throw everything you can at it. You are worth it.
If your relapses aren’t awful and you can get on with life, without risk of disability, then I’d go for alternatives. Take LDN, try diet and do exercise. It can really help so much.
I don’t understand the rebound theory. If the drug that you were taking is withdrawn, then you are going to relapse at some point. This does not make a valid argument against DMD treatment.