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DMD

Is anyone on a DMD because the neuro said to go on it.

But in reality not happy to be on it either because of side-effects or the slight possibility of problems later on or not convinced of its efficacy?

Despite it being easy to consider me a Tecfidera fanboy, i do not like taking pills. Growing up, i wouldn’t even take a single painkiller for a head ache or tooth ache. I always figured there was a more natural remedy and that in any event, such things would work themselves out.

The notion that any artificial element or pharmaceutical product was completely devoid of potential negative effect was obscene to me. I now pop 10 tablets every single day and will likely have to forever.

In addition, DMDs for MS require a certain amount of faith to accompany taking them; few of them have an action which is fully understood; pretty much all of them were ‘discovered’ by fluke or coincidence. And no one can tell me that my current lack of relapse would never have occurred had i never taken a single DMD capsule!

So i do have doubts, and fears, and concerns, and lack of conviction. I do worry about the long term accumulative effect of all these things i am taking. But then i am also acutely aware of the cocktail of chemicals applied to the fruit and veg we consume and the contaminants in the meats we eat and fluids we drink.

The science and prevailing wisdom says the DMD i have chosen and the lifestyle tweaks i have made are, at least seeming to me, conducive to a more positive and healthier future. And so here i am.

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I felt that way about Avonex, and eventually was proved right (in my view)

Next step alemtuzumab and couldn’t feel more differently about that :slight_smile:

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Yes, my neurologist persuaded me to take tecfidera after 10 years of persuasion to take a dmd.

I had an anaphylactic reaction to it and stopped after about 4 weeks.

I am happy to be dmd free again and follow the “Overcoming ms” plan. I am starting to feel the benefits.

Anna

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I’m supposed to take Aubagio. Had them delivered 3 weeks ago but haven’t started them yet. We’re getting married soon and I don’t fancy the “A” spoiling the big day. But I’m not sure I want them thereafter either

The science (big clinical trials follow up) says that people who take dmds end up less disabled than people who don’t. Having said that, I deteriorated massively in my four years on Tysabri and more after trying Cladribine. Now I’m taking Gilenya and am improving, very, very slowly - sometimes able to walk with two sticks rather than a walking frame, bladder control mostly normal (i.e. under control). So I’d say, take a dmd and if it doesn’t seem to be helping, try a different one. I wish I had done this.

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there is an element of things being a bit hit and miss with these dmd’s – I wonder why some people do badly on one drug but do well on another.

My MS Nurse is very pro Aubagio. I had a good read on here before I agreed to it. I later signed up to an Aubagio page on Facebook and have to say I am quite shocked by how bad people are saying that it is affecting them. Interestingly, the theme that I noticed (no offence to any ladies out there) but the majority of the complaints were from ladies. Most of the guys on there had no notable side effects.

What bugs me is they only claim to reduce relapse rates by 30%…so what about the other 70% chance that we may not relapse? AND, these things work BUT they don’t know how or why?

I think you have to accept that it’s an average. So some people for eg have been on Copaxone for years and haven’t had a relapse. Other people don’t do well on it at all, so for person A, Copaxone is working to reduce say 90% of relapses, but person B is only getting a 10% relapse reduction rate. Clearly, person B should consider changing to another DMD. Equally, person C might be getting a 50% relapse reduction rate from Copaxone, but have terrible skin reactions which make the costs of the drug (for them) outweigh the benefits, since there are other options that are not injectables.

So Aubagio looks like it’s a less good treatment at a relapse reduction rate of 30%, but for some people it works brilliantly and gets much better results than that with few side effects.

Our MS is different, our reaction to drugs is different. In every case it’s down to individual results.

Sue

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There is also the other consideration to be thrown into the mix when choosing the right DMD for as individual patient and that is COMPLIANCE. As my neuros and M&S nurses have always told me, it would be pointless for them to force their choice of drug on a patient who might find it impossible to accept - e.g. injectibles are pointless for people who are needle-phobic or strictly regulated regimes for people with irregular lifestyles. That is why neuros tend to suggest a list of possible treatments and tell patients to go away and do a bit of reasearch before making a decision. Everybody has different needs, as they say on American MS sites “your mileage may vary”

Definitely - I didn’t mind a weekly injection but would have struggled with a more frequent one…

Also, side effects do vary. Some people do brilliantly on one drug that floors another person. Horses for courses!

If we all had the same illness we would expect the same treatment to work on us all - but it doesn’t.

This isn’t true for other diseases - for example drugs for breast cancer affect some women differently to others - why should it be true for MS?

We end up with a dx of m.s. after other neurological conditions are ruled out.

What I’m alluding to is the possibility that the generic term m.s. covers a lot of very different conditions. Some of these conditions will respond to certain dmds but others will not.

I suspect that the person who responds well to say Tysabri has a different condition to the person for whom Tysabri proves to be of no use at all.

I don’t want to be awkward about this but people are diagnosed with MS using the Macdonald criteria which are demyelination of the brain with lesions disseminated in time and disseminated in space. People do not get diagnosed because “other neurological conditions are ruled out”.

In fact, I met a woman last week who has MS-like symptoms (problems with balance and tremor) who has no lesions and has an unknown neurological condition. She has been told she does not have MS because her MRI does not fit with a diagnosis of MS.

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I think that the McDonald Criteria are used a lot less often than you think.

The criteria were developed along with the development of MRI scanners, and revolve around scan evidence.
If you read the criteria, you will find:
“Positive tests on cerebrospinal fluid drawn off by lumbar puncture”
and this is after one year of observation, or scan evidence

Many neurologists use the LP as another diagnostic tool, very early on - and there are a lot of new members here who are concerned about the LP. Often the LP comes before the MRI Scan. A good neuro will call for a string of blood tests to rule out (that is to say eliminate) such things as Devic’s Disease, B12 deficiency, Lyme Disease, and so on.

Geoff

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Do you mind me asking about Avonex? Did you not get on with it? My MS nurse called today to tell me MRI had new lesions and my MS is active, suggested Avonex…im scared of starting DMD’s…feel like i have to accept i have this bloody disease now.

i cannot believe ‘professionals’ still prescribe the inferior Avonex.

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My neurologist recommended Avonex as a first line DMD due to its long safety record.

It has flu-like side effects which for most settle down within a few weeks or months. Just take some paracetemol or ibuprofen, make sure to do the shot in late afternoon / early evening - and you should sleep off the side effects. I did feel rubbish the day after (until about lunch time) for the first few weeks but after that no trouble.

I came off it (1) because I was relapsing while on it and my neuro wanted to switch me to something stronger and (2) I had mental health side effects that were becoming more than I was willing to handle. Not everyone gets mental health side effects.

Many people get on really well with Avonex - I just wasn’t one of them.

(Paolo is a Tecfidera evangelist who likes to be provocative.)

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Thank you for your reply, I already take anti depressants, so do you think it may not be a good option?!