Forum

Should I be on DMD's

Hi

This is my first post but I have visited the site regularly and have found it very helpful.

I was diagnosed in September after a year of feeling dreadful and thinking I was losing the plot so it was a huge relief to be diagnosed.

My first neurological symptoms started in June with altered sensation in my leg and as soon as that happened I had an inclining that it could be MS .

in November the altered sensation went down my other leg and up my torso. My MS nurse felt that it was a continuation of the first episode. To me 5 months after the start of an episode seems a long time after the onset to get worse but who am I to say.

I have now got sever pain in my left eye which the nurse is saying is due to optic neuritis which I have had for 10 days. My vision is slightly blurred in one eye.

My query is wether I should be on any medication?

From what I have read I think I am entitled to go on DMD as I have had 2 attacks but my nurse is very keen that I hold on .Why?

Also with the optic neuritis would it not be better to treat with steroids now in the early stages and improve the condition rather than leave it to progress and potentially damage my sight..

Many thanks in advance.

Emma

Hi Emma,

Steroids have absolutely NO effect on disability progression, so taking them will only give nature a bit of a helping hand to speed up recovery from a relapse - it won’t alter what the long-term consequences may be (if any). So not taking them doesn’t result in any further damage, and as they can be rather nasty drugs, with risks and side-effects of their own, there can be quite a strong case for NOT taking them, unless it’s absolutely unavoidable.

So I think your real question boils down to DMDs. I agree it looks like you have had two, probably even three relapses in a year. I don’t think suddenly getting worse after five months is all part of the same episode, either. :frowning:

I think this shouldn’t really be up to your MS nurse: what does your neurologist say? What were you told when first diagnosed about eligibility (or not) for treatment?

The difficulty is that even though you seem to satisfy the eligibility criteria in terms of frequency of attacks, they do include the weasel words “clinically significant relapses”, not just “relapses”. And there is no definition of just how bad “clinically significant” has to be, so it could vary from neurologist to neurologist. As a layperson, I’d assume optic neuritis always to be “significant”, because it causes functional impairment, not just sensory. But opinions may vary as to whether relapses causing only sensory disturbance (no disability) are “significant” or not.

Either way, I still don’t think it’s up to the nurse. I had a detailed assessment, with a neurologist, of my suitability for DMDs. I got the option of having them, but decided not to, in the end. But my decision’s irrelevant to your question - the important part is having the option, which I think you should, in your situation. I’d have a word with the GP, and see if you can get referred back to the neuro, for a discussion about treatment. If you’re not considered suitable, you’re entitled to know why. It should be a bit more than “because the nurse said so”.

Good luck!

Tina

Hi Emma, I have been dx a year past nov, after 2 relapse I was offered dmd last July + started them oct 12 last year. Ask to be referred to your neuro to discuss options, then it’s your choice if offered them if you want to start treatment or not. Hope this helps julsiexx

You could consider LDN many people find it stops disease progress but since it is based on an out of patent drug it is never likely to be formally tested.

It is very cheap so even if you are in an area where the PCT will not fund it you could probably afford to try it if you want to

 

 

LDN has not been proven to stop progression despite what David603 says

I can't answer your question about DMDs and your MS nurse, I would ask her to explain her reasoning.

LDN may help alleviate symptoms but it is not a substitute for DMDs.

I think the criteria for DMDs is two or more clinically significant (DISABLING) relapses in one year. Your altered sensation is not likely to be classed as clinically significant. ON will get better with or without steroids usually in about six weeks, although my preference is to take them. As Anitra says they have no effect on overall progression.

Much as I love my own MS Nurses they are not qualified to diagnose - did you see the nurse or just speak on the telephone?

If you are concerned that you are not being offerred the correct treatment you will have to see your neurologist.

Why indeed?

Your history sounds remarkably similar to mine when I was diagnosed 12 years ago and my neuro was as keen as I was to get me on DMDs - funding and availabiity were very difficult in those days - as most people just diagnosed, or in the early stages back then will remember -and , for that and other reasons,  it was about 8 months before I got started on the Avonex that I continued to take for the next 10 years.

There's no curing RRMS - the best available deal is an attempt at reduction of the severity and frequency of relapses and that means DMDs.  If your MS nurse has a better idea, I would like to hear it!

If I were you, I would get a consultation with your neurologist and have a serious conversation about DMDs.  I think sometimes it makes a real difference when the patient is pro-active and clear about - at the very least - needing a very convincing explanation of why they don't want to get you on DMDs at this stage in your MS.

BTW, where I am, they prefer not to give steroids for ON unless it is causing massive problems.

Good luck

Alison

x

 

Hi Emma, it sounds to me like you should be on dmd’s, but I am not a doctor, I would have to question as well why your nurse is telling you no, I think you need to see a neuro again, even if it is just so he can explain why you are not eligiblie if indeed that is the case.
As for Ldn, it is not a dmd but by all means try it, I tried all sorts of “alternative” (for want of a better word) treatment, but don’t be hung up on Ldn as a cure all.
Cheryl:)

As some of the others have said, the criteria for getting onto DMDs depends on the very woolly phrase "two clinically significant relapses in two years."

 

"Clinically significant" seems to mean disabling or debilitating. For example, I had vertigo in October which I told my neuro about in November (my words: I had vertigo throughout October, but it was really quite mild and didn't really stop me doing anything). In his letter to my GP, he wrote that I had had some vertigo in October but that it had not been clinically significant. So, perhaps your sensory relapses aren't considered clinically significant. If they were disabling, then you clearly meet the NICE criteria.

 

However, someone posted on the New Diagnosis forum recently saying that their PCT wouldn't let anyone go on DMDs for the first 12 months after diagnosis. I have absolutely no idea what the medical rationale for that is as there is plenty of evidence that starting on DMDs early slows the onset of disability never mind reducing relapse rates, but perhaps there is something similar happening in your area? If there is, then this is outside the NICE guidelines so you can challenge it, but that does mean a legal battle which could take a while (and be very stressful). If you want to know more about this kind of thing you could try the MSS Helpline. They might be able to refer you to someone who knows about it.

 

Incidentally, and I know this might seem a bit daft, but are you sure that your neuro can prescribe DMDs? Some can't, but they keep it very quiet!

 

As far as LDN goes, the evidence is all anecdotal as there have been no proper clinical trials done on it. Some people find it helps with some symptoms and some people find that it helps with their progression, but some people find that it does nothing or even makes them worse. The people on here who report that LDN has helped with progression do not have RRMS. I also don't remember any RRMSer reporting on here that LDN has stopped their MS. I do however remember plenty of MSers saying that it has helped with a couple of things but that they are still relapsing and still progressing. It is NOT a cure after all!

 

Re steroids: as others have said, they don't actually change the outcome. When they work, they reduce the length of time the relapse lasts. If a relapse is very painful or disabling, then speeding up the time to remission is probably worth taking steroids, but if a relapse is livable with, I reckon it's better to avoid taking them (they are pretty heavy duty drugs remember).

 

I hope you can see your neuro soon and sort out the DMDs thing. Why not have a look at the msdecisions website in advance, so that you can speed up the process a bit by already knowing which DMD you want?

 

Karen x

Hi Emma

The decision as to whether you're entitled to DMD'S does not lay with your ms nurse - this is something that you should speak with your neuro about and then there is a criteria that needs to be met. I'd definitely give him a call to clarify things.

As for steroids - they can help to speed up the recovery time of a relapse and like all drugs can also have side effects. Last year I had a bout of ON and lost the vision in my left eye and so I had 3 days of iv steroids. I have ON again at the moment but this time - thankfully - I've not lost any vision so have not gone down the steroids route. Plus I had oral steroids in the summer so I really don't want anymore. Your eyesight is precious so if you have any doubts then give your neuro's secretary a call and ask for a call back - see what he says.  

I know there are others here that have tried LDN but personally I think finding out whether you are eligible for DMD'S is the route to go for now.

Good luck

Debbie xx 

 

I list below the evidence that LDN can be considered as a DMD and as has already been said that does not include trials to licensing standards. However I think it is very important to realise that the older licensed DMD’s have little or no evidence to support any disease modifying effect / long term benefit. They are really only proven to reduce relapses. The newer ones have a proven disease modifying effect but this comes at the price of greater risk.

In the UK DMD’s are effectively rationed anyway so not everybody has that choice unless the can fund them privately.

http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/beta-interferon-and-glatiramer-acetate

The I would suggest the main evidence base is LDN is Anecdotal/ Clinical experience

 

http://www.ncbi.nlm.nih.gov/pubmed/15694688

25 years clinical experience

The medical conferences just a couple of links :-

 

http://glasgowldn2009.com/

A few very small clinical trials:-

 

http://www.lowdosenaltrexone.org/ldn_trials.htm

Confirmation that any doctor can prescribe LDN

 

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

House of commons written answer:-

 

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

Re confirmed in the recent debate on 8.12.11

 

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

Loads of scientific papers dating back years:-

 

http://www.ldnscience.org/

This is of course only the smallest snippet of the available evidence base.

When looking at the issues of evidence base for any treatment you also have to take into account that may trials are financed by vested interests so it is important to take this into account as well.

 

http://www.jsonline.com/features/health/drug-research-routinely-suppressed-study-authors-find-qd3kfnn-136625848.html

 

.

In the end it therefore must come to a personal choice of what you consider adequate evidence

 

I list below the evidence that LDN can be considered as a DMD and as has already been said that does not include trials to licensing standards. However I think it is very important to realise that the older licensed DMD’s have little or no evidence to support any disease modifying effect / long term benefit. They are really only proven to reduce relapses. The newer ones have a proven disease modifying effect but this comes at the price of greater risk.

In the UK DMD’s are effectively rationed anyway so not everybody has that choice unless the can fund them privately.

http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/beta-interferon-and-glatiramer-acetate

The I would suggest the main evidence base is LDN is Anecdotal/ Clinical experience

 

http://www.ncbi.nlm.nih.gov/pubmed/15694688

25 years clinical experience

The medical conferences just a couple of links :-

http://www.lowdosenaltrexone.org/events.htm

http://glasgowldn2009.com/

A few very small clinical trials:-

http://www.lowdosenaltrexone.org/ldn_trials.htm

Confirmation that any doctor can prescribe LDN

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

House of commons written answer:-

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

Re confirmed in the recent debate on 8.12.11

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

Loads of scientific papers dating back years:-

http://www.ldnscience.org/

This is of course only the smallest snippet of the available evidence base.

 

When looking at the issues of evidence base for any treatment you also have to take into account that may trials are financed by vested interests so it is important to take this into account as well.

http://www.jsonline.com/features/health/drug-research-routinely-suppressed-study-authors-find-qd3kfnn-136625848.html.

In the end it therefore must come to a personal choice of what you consider adequate evidence

 

 

 

 

Bllcks

LDN IS NOT in any way comparable to a DMD and to claim that is, is misleading and dangerous.

This poster also clearly knows f all about DMDs

I have listed the evidence it is up to those who have the decision to make up their own mind.

What is dangerous or misleading about that?

The evidence available suggests slowing or stopping progress.

Hi Emma & welcome to the site.

With the benefit of hindsight, I wish I had started DMDs a lot sooner. I actually started them immediately upon diagnosis but even by that point I had had a number of relapses, some minor and others more significant including an episode where I lost the sight in my left eye for a few weeks which I know now was probably ON.

The thing is with relapses they do tend to leave you with a few residual symptoms afterwards & obviously they build up over time, so the less relapses you have the better - obviously!

If I was in your position then I would definitely be asking my neuro for DMDs at the earliest possible opportunity. Despite what David says, the licensed DMDs are the best bet for RRMS. They are proven to reduce the number of relapses & less relapses is very good news. It also stands to reason that the earlier you start them the less relapses you are likely to have.

Please don't take what David claims about LDN at face value, he is what could be termed as an LDN zealout. You should also be aware that he does not have MS himself and has never experienced a single MS symptom. His wife does have MS, but not RRMS hence her rather more limiited treatment options.  He trots out the same guff about LDN ad nauseum, but as Tonto rightly points out, it largely consists of utter b@ll@cks and should be approached with extreme caution.

As far as steroids are concerned, some people do find them very helpful & they do speed up the course of a relapse. However, they are seriously heavy duty drugs & you get a massive dose for an MS relapse with some potentially pretty nasty side effects. I tend to avoid them if I possibly can, but if the pain gets unbearable then they might be worth considering & if you really want them then ask your neuro.

I hope this helps and that it eases for you soon. 

David, I don't think you quite understand the complexities of MS. 

A person can be diagnosed with aggressive MS - with many, many relapses in a year, which leaves them terribly ill. This person may recover. 

What a person in that situation needs, is to halt the relapses. This gives the body a chance to recover and the person a chance to get some stamina and muscles strength back. 

The next patient may have similar symptoms, but less recovery and therefore more progression. 

There is no way for the neurologist to know how the person with MS will fare for lets say, the next 10 years. 

For the first patient - the older DMDs may work - and continue to work for years. There are people here in northwest Spain who have been on beta-interferon since the mid 90s -  and who are still walking and even working. 

The second patient would most likely respond to the newer and more powerful drugs. (Tysabri, Gilenya and Campath).

You wrote;

"However I think it is very important to realise that the older licensed DMD’s have little or no evidence to support any disease modifying effect / long term benefit. They are really only proven to reduce relapses. "

 

This is not true. There's plenty of evidence to show the long-term effect of DMDs. You are confusing newly diagnosed people and I think  this is very dangerous and unfair. 

You don't know enough about the DMDs. The only drug you know anything about is LDN and that's not even your own personal experience with MS, as you don't have MS. 

Maybe your wife would not have progressed, had she had the opportunity to stop her relapses earlier - but the drugs weren't available for her. It's obvious that she had progressed,  but you don't tell people this. All you ever write is that LDN stopped her relapses - but no more information on how your wife actually is. She could be running marathons for all we know.  Is she? 

For people with active relapsing MS the most important issue is to stop or slow the relapse rate. LDN may work - but what newly diagnosed people also need to know, is that they'll be on their own. 

With clinically trialled treatments, the patient gets 2 appointments per year, for the older DMDs and monthly checkups for Tysabri.  LDN patients won't get this level of care and I think this is unfair - but how is a neurologist to know what to do about LDN as there is so little information and such short trials? 

MS is complex. It's very difficult to treat and it's time you accepted this fact. 

Hi Emma, me again, lol, I don’t wanna debate ldn and dmd’s but in response to lapreguiciera above, I have been on betaferon since it was newly licensed so nearly 16 years, my walking and balance are very poor but I do still work. Don’t know if I hadn’t been on betaferon if I would be the same now or not but I guess, that, if then, you had told me how I would be 16 years on, I would have thought, well that’s not too bad, considering.
Cheryl:)

Your ignorance knows no bounds. If you spent even a fraction of the time investigating DMDs that you do promoting and exaggerating the ANECDOTAL evidence about LDN, you would know that there is indeed evidence that DMDs have a disease modifying effect and long term benefit. The clue is in the name: disease modifying drugs. A name, incidentally, that is used to describe drugs that have been clinically trialled and proven to alter the disease course of MS and that does not, therefore, include LDN.

Listing links is neither dangerous nor misleading as long as people understand the validity of the “evidence” that the links lead to (mostly very poor). What is misleading is wilfully exaggerating the evidence. You continually state that “LDN stops all disease progress.” You have even claimed that “LDN stops all relapses” in the past. There is NO evidence for either of these claims; not even anecdotal! Even though you have been repeatedly advised of this, you continue to make exaggerated claims. Even the people who supply, prescribe and promote LDN do not make these claims. Unless you don’t actually read the things that you post links to, you know this, but you persist in giving false testiment. No one else on this forum makes these claims, even those who have found LDN to be of great benefit to them. The very best claim you can ever honestly make is that “some people find that LDN helps their progression and symptoms” and that this seems to be true for your wife. Anything more than this is utterly misleading. And because it has the chance of being persuasive and making someone choose LDN over a more effective treatment for their MS, it is downright dangerous.

You may think that you are helping people. YOU ARE NOT. This is true for two reasons. First, you may make someone choose a treatment option that is ineffective for them at the expense of one that could have worked: a choice that could lead to permanent disability (that could have been avoided). Second, you may actually be putting people off trying LDN! It can be a very effective treatment for some people, especially those who do not have alternatives. Your wild claims smack of fanaticism and that is enough to make most people run a mile.

You do LDN a disservice. Leave it to people with some credibility, like Whammel.

Lapreguiceira

However I think it is very important to realise that the older licensed DMD’s have little or no evidence to support any disease modifying effect / long term benefit. They are really only proven to reduce relapses. "

‘‘This is not true. There’s plenty of evidence to show the long-term effect of DMDs. You are confusing newly diagnosed people and I think this is very dangerous and unfair.’’


I quoted the MS Society statement as suggesting that there was no proven long term benefit of the older DMD’s perhaps if you disagree with the MS Society you should quote your evidence source.

As for people being on there own with LDN I have no doubt that is true with some doctors. However that was not my wife’s experience, she was monitored for 5 years by her neurologist before he effectively signed her off to stay on it and ask for a further appointment if she needed further help.

You seem to have entirely ignored the risk of clinical trials conducted by vested interests, I quoted the following report :-

http://www.jsonline.com/features/health/drug-research-routinely-suppressed-study-authors-find-qd3kfnn-136625848.html

I think this is an issue that the newly diagnosed may not be aware of and it is vital that they look at the source of any evidence and evaluate such evidence with the source in mind.

Those who give their experience of LDN have no possible financial gain. MS is very variable so it is important not to base any decisions on a few people but with LDN that is not the case there are 10’s of thousands.

http://www.ncbi.nlm.nih.gov/pubmed/15694688

Hi Cheryl, that’s interesting because I’m 8 years on Betaferon, my walking and balance are poor but I still work too. You’ve given me hope for at least the next 8 years!!!

Val

Hi Val, you sound just like me, yes let’s keep hoping!