Reply to david603 who believes that injectable DMDs....

Everyday living
1

…do not deserve to be called disease modifying

As promised, I am replying in a new thread as David himself stated that further off-topic discussion concerning the points he introduced shouldn’t continue on there.

It’s only the last part of these replies that we haven’t heard many times before, so I’m going to address that rather than go over old ground.

The term disease modifying drug/treatment is a term used within the MS community (including neurologists and MS nurses) to refer to beta interferon, Copaxone, Tysabri and other meds used to change the course of MS. Any other interpretation by someone familiar with the everyday use of this term is disingenuous (i.e. “not candid or sincere, typically by pretending that one knows less about something than one really does” OED on-line) so I am not about to get into that one!

DMDs are prescribed for people who have relapses. For simplicity, let’s assume that this means people with RRMS. The course of someone with RRMS varies between individuals, but the overall pattern is a series of relapses alternating with a series of remissions. Over time, residual symptoms from the relapses builds and the patient becomes more disabled. Unfortunately, the level of disability sometimes means an early death.

So, the normal course of someone with RRMS is relapses and remissions with accumulating disability and, sometimes, death.

So, anything that reduces relapses, disability or death is disease modifying.

From here, the term DMDs refers to the injectables (beta interferon and Copaxone).

David, you continually post links to the MSS info on DMDs. You have been continually advised that this information is neither up to date nor complete. You have been continually advised that if you want to understand the latest understanding of how DMDs alter the course of MS, you should look further afield at websites like pubmed and the multiple sclerosis research blogspot where leading edge science can be read. Since you appear to have no intention of updating your knowledge, here is a starter for ten. If you would like to provide more up to date information that counters it, feel free, but the same old links to out of date reports, blogs, TV programmes, newspaper comments, etc really don’t meet the grade.

  • DMDs reduce the number of relapses that people with RRMS have. Recent evidence suggests that Rebif44 does this significantly more than 30% of the time (see the Campath vs Rebif trial).

  • A very new study shows that of people who were on the original betaferon trial, those on the drug were significantly less likely to die from their MS than those who received the placebo. (And the people who received the drug only received it for 3 years.)

  • DMDs delay the onset of disability.

  • DMDs reduce cognitive decline.

  • DMDs reduce the severity of relapses that still occur.

  • DMDs prevent the development of MS. In fact, DMDs are now widely given to people with CIS. Rebif was approved for this just recently in Europe.

If you do not want to reply to this post David, then perhaps you would rather reply to the other thread (that you started)? There are many points that you promised to reply to on there by Friday 10th February. We are still waiting.

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Dear David,

[Abusive comment removed by admin]

George

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Bump

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Cheers Georgie

Wouldn’t want David to miss it

Kx

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Karen, I do believe that the problem we are faced with is that David is suffering from what has been termed the “Lewis Carroll” or “Humpty Dumpty” syndrome. When he uses a word, it means whatever he wants it to mean; not what the normal person would understand by that word. So, when he writes:

It should not be assumed that he meant to admit that there are effective treatments other than the ones he espouses. We should also not assume that he understands the word “significant” to mean what we understand it to mean. After all, you and I (and a few other people here) do know what statistical significance means in a scientific context.

C’est la vie … whatever that means.

Geoff

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Karen (Rizzo) has summed up the definition and role of DMDs very well and I have nothing to add to the medical side of this.

But I thought it might also be helpful to look at the dictionary definitions of the word MODIFY

mod·i·fy (md-f)

v. mod·i·fied, mod·i·fy·ing, mod·i·fies

v.tr.

1. To change in form or character; alter.

2. To make less extreme, severe, or strong:

modifying present participle of mod·i·fy (Verb)

Verb:

  1. Make partial or minor changes to (something), typically so as to improve it or to make it less extreme.

  2. Transform (a structure) from its original anatomical form during development or evolution.

mod·i·fy

[mod-uh-fahy] Show IPA verb, -fied, -fy·ing.

verb (used with object)

1.

to change somewhat the form or qualities of; alter partially; amend: to modify a contract.

2.

to reduce or lessen in degree or extent; moderate; soften:to modify one’s demands.

Hope this helps to clarify what a Disease Modifying Drug means…

Cheers,

Belinda

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Thank you for this timely reminder about what DMDs actually are and what they do, Karen. I think it is very important to keep setting the record straight on here when misinformation and misguided opinion are (whether on purpose or not) presented as fact.

Alison

x

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Thank you for that Geoff. I’ve never heard of the term before, but it does seem to explain quite a lot!

Karen x

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Thank you Belinda. Very helpful!

Karen x

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You are very welcome Alison. I agree that keeping the record straight is very important.

Karen x

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I guess we’ll have to talk about “drugs commonly known as ‘disease modifying drugs’”

Or maybe accept that the ‘drugs commonly known as’ as read and call them DMDs for short!

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I dont really care ! All I know is that in the two years that I’ve been stabbing myself with Rebif I haven’t had a relapse. Call it what you want -it works for me and I’m happy Sincerely a dumb and uncaring yet happy to have drugs MSer :wink:

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My story: my ms started suddenly, with frequent disabling relapses back in September 2005. 6 months after my first relapse, I started rebif 44. I remained relapse free until after I had my first baby staying off meds to breastfeed. I had 5 relapses before recommencing rebif. My walking has gone from perfectly fine to a bit crap, from just 1 of those relapses and I now have residual deficits - I used to be asymptomatic until then. I had my second baby and didn’t stay off rebif after the birth. I have had no relapses and nothing has changed in my ms. I believe in hindsight that had I taken rebif after my first baby, I would be as I was before, able to walk ages and ages, jog, etc at least I have never once relapsed on the drug. My dream is to be medication free and really really healthy but oh well I think with ms you just have to do what works for you and that’s it, we are all so different.

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I’m also a Rebif user and it comes down to this - do I want to be permanently ill with relapses or not?

It’s 12 years this year and before Rebif, I had been ill with various ailments between every 8 or 12 weeks.

I’m lucky in that my MS is non-progressive (touch wood), but I couldn’t have known that at first and I was also lucky to be able to start Rebif just a month after diagnosis and it’s done what it is suppose to do - slow down/stop the relapse rate.

A relapse is a bit like having a physical injury - like a torn muscle every few weeks. Eventually the continuous state of illness brings awful stress to the immune system and body and you lose fitness and quality of life.

It’s been simple for me. I’d rather be generally well than continuously ill.

I note that David603 hasn’t had the cojones to reply to this.

Shame. I do look forward to reading his erudite opinions.

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At last a comment from the one that even stores my comments from the last message board to discredit what I write.

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But unfortunately not a reply to the original post from the person it was specifically directed at.

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But she was wrong about that, folks:

This looks like another instance of Humpty Dumpty syndrome, folks.
The last time lapreguiceira mentioned that she had file a full of the saying of david603, my memory is that he accused her of stalking him. now, stalking and discrediting have two radically different meanings, as anyone who can use a dictionary can verify for themselves.

This might also be a good time to remind you all - and I do mean all - that lapreguiceira just happens to be a user of LDN. So, she is quite clearly not opposed to it as a medication. You can draw your own conclusions from this.

Geoff

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Karen

I can not see what you want me to say, I do not think the term DMD is any longer appropriate to drugs that do not modify disease progress. You do, why does that require any comment from me, you are entitled to holds a different view to me and expresses it.

I therefore would consider Tysabri to be a DMD and LDN to be an off label DMD because all the available evidence suggests those 2 options do modify the progress of the disease. Tysabri is a more risky option and only available to about 1% of those diagnosed with MS. LDN is not licensed for MS but has a much longer track record, but the evidence will remain the medical conferences and individual experience of 10’s of thousands of people. It is also so cheap almost anyone who wants to try it can. In the end the only way to find out what any treatment will do for you is to try it.

You don’t agree with that so why do we not just leave it at that. You respond to posts the way you want to and leave me to respond to post the way I wish to and leave those reading the posts to do their own research and make up their own minds about what they wish to do about their problem.

Science is about collecting all available evidence and evaluating it, not just about just drug trials financed by vested interests who carefully write protocols to prove what they wish to prove and then hush up trail results that do not show what they want. In the case of CCSVI it would be about collecting the medical notes from those that have had the procedure and evaluating what that procedure has produced in terms of results. Unfortunately until that happens then the leaping out of wheelchair results will dominate because they are the one that create good copy for the press.

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Um David, Tysabri IS a DMD. Although LDN is NOT. It is a treatment for symptomatic relief.

Drugs which modify the disease course### Relapsing MS

There are three drugs called beta interferons and another disease modifying drug called glatiramer acetate, which can be prescribed for people with certain types of MS under the Department of Health’s Risk-sharing Scheme.

Product names are shown in brackets.

Since the launch of the Risk-sharing Scheme in 2002, further disease modifying drugs have been licensed.

  • natalizumab (Tysabri) - licensed in 2006, this drug is approved for people with rapidly evolving severe relapsing remitting multiple sclerosis but is not part of the Risk-sharing Scheme

  • beta interferon 1b (Extavia) - licensed in 2009, this beta interferon drug is not explicitly part of the Risk-sharing Scheme

  • fingolimod (Gilenya) - licensed in March 2011 for people whose relapse rate has not improved despite one year’s treatment with one of the beta interferon drugs or glatiramer acetate, or for people with rapidly evolving severe relapsing remitting MS.

    How is MS treated? | MS Trust

Hope this helps you understand the current terminolgy used in talking about treating MS, David.

Belinda

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So you choose to disbelieve the evidence gathered over more than a decade in favour of your own personal belief that has absolutely no scientific backing of any kind? (After all, you have failed to provide any counter evidence to my original post stating that injectable DMDs do in fact modify the progression and course of MS.)

You also choose to disagree with the entire neurology profession as well as all the scientists that have devoted their time and energy to developing and studying ways to prevent and cure MS. After all, they call the injectables DMDs (or equivalent).

You can call them whatever you want David, but the term that everyone else uses is DMDs. More importantly, the injectables DO in fact modify the course of MS (a disease funnily enough). Claiming otherwise when you have been repeatedly advised of the evidence to support this fact strikes me as uncannily similar to catching a child with chocolate all round his mouth who adamantly denies having eaten anything.

Incidentally, science is not about collecting all the data and evaluating it. It is anything but.