Forum

DMD advice please

Hi Everyone

I was wondering if I could get some feedback from you lovely people with regards to your situation with DMDs.

I know that there are a lot of people on here who take different DMDS to each other and not all DMDs are suitable for everyone, but what in your

opinion is “the” DMD to try to get on at the moment? If you were just starting off and had to make a choice?

Is there one which you are looking to switch over to and start taking soon and what is the reason for this?

I only ask these questions as my neuro wants to discuss treatment options when I see him in two weeks time and I would like to be a little prepared before the appointment. I would rather not start injecting every day if I can help it and popping a pill does sound like an easier option but I do understand

that the easier option is not always the best.

Thank you

Hi

I found it hard to reply, maybe a blip in the new software.

anyway, I’ve been on Avonex for the last 6 months. This is a weekly injection via a pen. Really easy.

Side effects vary for everyone but I had bad flu symptoms initially. I believe it’s important to allow the meds to get to

room temperature prior to injecting. I still get some side effects but they are very bearable.

I’m awaiting Gilenya which is the daily pill. This is preferable as it’s rated at 50% reduction of relapses and improved

disability deterioration. Avonex is only 33% reduction.

all treatments have a balance of benefits and side effects.

There’s a good website on one of the MS orgs explaining the choices but I can’t find it currently- someone else may be able to post the link or

My advice would be to speak to your MS nurse and discuss it with her. If you don’t have one yet then call a local one.

Different drugs have different protocols on the NHS and some are and aren’t available as initial treatments.

The treatment options constantly change and some information though well intentioned may not be accurate.

So get what info you can - esp MS nurse and then you’ll be able to have a better discussion with your Neuro.

also write down all the questions for your Neuro as otherwise you will forget some.

good luck

Adam

Hi number 08!

In my personal opinion, Tysabri is the one to be on. Thats an infusion in hospital every 28 days. Its one of the big guns in regards to treatments for MS. I was on this for nearly 3 years and I have just recently come off it which I am gutted about. I have gone onto Gilenya. Gilenya is the tablet you take everyday and I believe its inbetween Tysabri and Beta interferons for reducing rate and severity of relapses. Before Tysabri I was on REBIF which just did not work for me.

I cant really talk about Gilenya yet - only been on it 3 days! But REBIF didnt help me at all, I relapsed all the time. Within 5 months of being on Tysabri I didnt and still havent relapsed. Touch wood! And I know alot of other people who are on/have been on Tysabri and very few of these have had issues - the rest of us say its a wonder drug!! They all work differently for different people tho!

Good luck xx

Hi number08

It depends on how aggressively you want to hit the MS from the outset. Your neuro will probably guide you towards what he thinks is the right tactic for YOUR MS because we all have different MS and some people’s MS is more aggressive and if you have had a lot of relapses in a short space of time you may need to use the big guns straight away.

I was offered a choice of the first line treatments which 5 years ago were all injectables. I chose Rebif as I didn’t want to inject every day and the size of the Avonex needle scared me! Rebif is 3 times a week and that seemed a reasonable compromise. I did have some flu type symptoms at first but these were easily controlled by taking over the counter painkillers like ibuprofen and it was still better than a big relapse. Rebif kept me relapse free for just short of 4 years.

Last year I had two disabling relapses within 3 months so I have now switched to Gilenya with advice from my neuro. I have been on it for 10 months and haven’t really had any side effects. One positive thing is that I don’t overheat any more!

If/when Gilenya fails me then I will have to consider my options again and I think at that point, if Lemtrada is offered to me again, I would opt for that. Unlike Tysabri, once you have had your Lemtrada infusions then you just need regular monitoring for side effects. I think I would prefer to get all the infusions out of the way in one hit. You see, we all have our own preferences based on what we have read/been told.

Good luck with your decision.

Tracey

PS Be wary of the msdecisions website as I believe it is still out of date. This site has up to date information and so does the MS Trust.

I have been on Tysabri for nearly three years. It is meant to be the most effective drug - reduction in relapses and progression of 66%, on average. I don’t know whether it has reduced the progression of my MS by anything like that - I have deteriorated a lot while on it. I have generally been washed out for a few days after having the infusion but have no other side effects. A couple of months ago I went from being JCV negative to JCV positive. My viral load is low at present, so the doctors are happy for me to stay on Tysabri. I believe that going on one of the less effective DMDs before Tysabri makes it more likely that you will end up with a high viral load if/when you are JCV positive. But you might want to ask your neuro about that.

The neurologists at the cutting edge in MS belive in treating it early and aggressively, I believe. The idea that your neurologist will be able to give you advice about your MS is just not true - they don’t know any better than us how a particular person’s MS is going to develop. So you need to decide for yourself whether you want a more effective treatment where the risks of the treatment itself are higher.

Tecfidera

Thanks for the replies.

The neuro I am under now follows the rule that if you have had one clinical relapse then you should start on a DMD treatment straight away. My last neuro had a “wait and see” approach and I was not offered anything after my first episode/ relapse and only then if I sustained a second disabling attack,then I would full fill the criteria for treatment. Things have changed now and my latest MRI has shown increased activity in new areas of my brain and spine which has shown that the disease is still active. Thankfully, I have not had any serious disability or too much numbness etc as part of the increased activity but I have had some.

I have read some of the options available DMD wise and I think I would like to be offered to start on Tecfidera I think, as I like the fact that its a tablet and the side effects don’t seem too bad. Also I gather its been around for about 20 years helping psoarsis (sp) sufferers so hopefully its been well tested.

Does anybody know if Tecfidera is being prescribed in England yet? or has anybody who is recently diagnosed been offered this?

Thanks again

http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/Tecfidera

This tells you all you need to know about Tecfidera and when it should become available in England.

I would recommend this resource: http://info.adverseevents.com/multiple-sclerosis-resource-center

You may have to sign up (give up your e-mail address) to a ‘trial’ before being able to access the report document pdf.

It is well worth it.

Tecfidera is predicted to become a ‘blockbuster’ over the coming months. Frankly i am bemused that it is not simply being deployed immediately as a standard, first line DMD.

In addition, any neurologist that follows the ‘wait and see’ approach (for more than a few months) is potentially deleterious to your future, even after a single ‘flare up’. Another resource: http://www.hindawi.com/journals/msi/2011/724871/

Additional info - that link is two weeks out of date; a study called ENDORSE has recently issued interim findings;

Hopefully this will undermine the fears regarding long term safety, in the minds of would be users.

You’re right, it is out of date. Probably because the MS Society is concentrating on trying to fix the forum! They are usually quite prompt with their updates on latest news concerning treatments.

According to the MS Trust Tecfidera was approved by NICE for use in England in August 2014. Here’s the link.

I tend to stick to the MS Society or the MS Trust for my information as I know they are charitable organisations and are therefore not looking to make a profit. They were also recommended by my neurologist and specialist nurse. I am wary of sites that seem to be either run by the drug companies or are funded by numerous adverts for drug companies.

Tracey x

We do need to be cynical of pharmaceutical companies, but we are lucky that MS DMDs are so lucrative; once a company issues unsubstantiated claims, their competitors are quick to destroy their credibility. It becomes more of a ‘scientifically based peer review’ than the efforts of an unchallenged charlatan.

I try to use only impartial articles, but if you know of any potential for bias please let me know. Oh, and ‘non-profit’ organisations are still in a fight for a place in a very cut throat industry themselves.