Forum

DMDs - how to decide?

Dear all

I am very recently diagnosed and am really grateful for all the kindness and support shown on this forum.

I am in reasonable good shape just now and since my last relapse (I have only had two significant ones two years apart) I am just left with some balance problems and pins and needles in my face (which is a new thing).

Anyway, the neurologist asked me if I would like him to prescribe DMDs. He told me the benefits they can bring but didn’t really recommend one way or the other. I said I would think about it and am due to go back to see him in August.

Clearly the choice is wide and from what I have read the main difference seems to be around how you take them and how often.

If I am going to have further relapses and the drugs extend the length of time between them, then it seems fairly sensible to have them. But I have no idea what the future holds. I have been lucky and my symptoms have not not been too dramatic so I am inclined to wait and see - just because I don’t fancy the idea of taking lots of drugs.

What do you do?

Thanks for listening!

It’s your choice, but there is a strong argument , that the sooner you start on DMD’s the better, why wait for further relapses and possible permenant damage. I understand the thought about taking lots of drugs, but if you have been DX with MS ,sooner or later you will take something. Good luck in whatever you decide Gray

wait and see, that’s what I have always believed in too. Stayed clear of nasty side effects, but on the other hand I now have that neuritis problem which is irreversible + permenent. So mybe not such a good idea.

Hi, I too was only dx last nov after 3 x ‘episodes’ leaving me with a weaker left leg, just gets more tired quicker and odd numbness and sensory issues. My neurologist offered betaferon, which, like yourself I was not really happy about as my relapses were not too bad. But like the neuro, ms nurse and gp all said, you don’t know what the next relapse is going to bring. At least I am trying to do something about it. I had side effects for two months but am fine now, just have to have a blood test every three months. It is a very individual choice though and I wish you well whatever you choose to do. Lots of best wishes, Sue x

I agree with Gray, why wait as the next relapse could leave you with a disability. Daughter on Tysabri which I think is the best at reducing relapses and allowing past ones time to heal. There can be horrendous side effects with this one but because of that you get your blood checked every month and it’s a once a month infusion as opposed to taking tablets every day or giving yourself injections. I totally freaked when Tysabri was offered to my daughter after reading up about it as the main side effect is PML which is usually fatal but her quality of life was such that it became a no brainer and they do keep a close eye on her for PML so my fears although still there are lessening. It is a very personal thing but I believe the DMD’s are there to be taken if you need them and why soldier on having relapses if you can take something to stop/lessen them. Good luck with whatever you decide. Linda

Just to add, I’m on tysabri , it was offered to me from the start and yes there are risks, but I gladly accepted the treatment because after I had a massive relapse last year and spent months virtually unable to see or do anything, I wanted to do as much as I can to fight back.

I got my definitive diagnosis after 15 years during the year, and I share your considerations. My Neuro suggested BG-12, which he expected to be available next year. Just another option to be aware of. Wishing you all the best.

I’m going to be blunt - it is very, very foolish NOT to get on a DMD as soon as possible. I couldn’t get on anything in the first three years I was diagnosed due to a cost embargo in my area at the time - if you are being offered the chance, bite their hands off. Seriously. After ten years on two different ones (Rebif then Gilenya) and now eight weeks on nothing, I am really, really feeling it. Waiting to get onto Lemtrada I hope. Seeing a new neurologist at Addembrookes next month - it can’t come quick enough. A cautionary tale - I also worked with a woman with MS - she was diagnosed a year after I started working there (I’d already been diagnosed five years at that point, on Rebif for two) who dillyed and dallied, wanting to go down the holistic route. The day she was diagnosed I gave her the same advice I’m giving you - get on a DMD. In the end, she did but it was already too late as I believe she was in SP at that point and the difference between us was and still is marked. What was so frustrating was that she repeatedly begged me for advice but NEVER listened and it was very sad to see her go so downhill so quickly when I knew (and she did too) that it may have been so different - it was like this unspoken thing between us. I had my first relapse over fourteen years ago and I’m still walking unaided. I’ve had a rubbish couple of years - Gilenya did not agree with me but it was obviously doing something as my latest MRI scan shows no new activity - but I’m still hoping the right DMD can help me get my life back once again. I’m firmly in the “the more drugs the better” camp. I am willing to try anything to live my life the best way I can.

I do understand where you are coming from especially if you have only had mild relapses up to now and fairly mild symptoms day to day. In between relapses I would also say my symptoms are fairly mild. Just the ever present fatigue, tingling, numbness and now my legs seize up when I have been walking for a while and my feet won’t lift off the ground properly. The last two are since the relapses I had last year.

My relapses are not mild and each time they leave me with a bit of damage. It is therefore important to reduce the frequency of my relapses and the severity. The two relapses I had last year affected my legs and were milder than the relapse which led to diagnosis. Even so my legs are worse than they were before those relapses.

Just because you have had mild relapses up to this point, does not mean that you will continue to have mild relapses. MS is unpredictable and I like to try and be a step ahead of it if I can. For me, that means taking whatever drugs are offered. I was on Rebif for 4 years and for most of that time it kept me relapse free. When it let me down last year, my neuro recommended that we look at switching. I’m now on Gilenya and I’m hoping it will keep me relapse free for at least several more years.

If Gilenya lets me down then I will look to the next strongest drug and so on. There is a lot of evidence that DMDs work better if taken soon after diagnosis. My advice would be to get yourself on one and asap. A good place to start considering them is to look on this website under What is MS? then look at the Treatments tab and have a look at the Disease Modifying Treatments. You can also try the www.msdecisions.org.uk website but be aware that it is a little out of date and does not have the newer drugs on there. I believe that some of the auto injectors have changed also.

Good luck

Tracey xx

I also meant to say that I think the big fear with accepting the drugs is that it makes the MS a reality. I went from first symptoms to diagnosis in just 3 months and then had to choose a DMD immediately so I completely understand that. I had another meltdown when my first injecting kit arrived because I wanted to bury my head in the sand and of course, I couldn’t because this big box of stuff was making it all real! In a way, the injecting eventually helped me come to terms with it and it felt good to be doing something positive. Don’t forget you are now part of this online community and we are all here to help you. You don’t have to do it alone :slight_smile:

Tracey xx

I was dx 6 years ago although now beleive I have had very mild symptoms for at least 20 years. I was not offered nor beleive I would have taken dmds at the time of dx but now after having a bad relapse 2 years ago, I have been left with a limp and have a weakness on my left side of body. My stick has became my best friend and now think I need a rollator. For longer distances I need a wheelchair. Inow think my ms has become spms but no dx as yet. Take my advice if you get offered dmds take them because mine was mild and look what happened.

With other conditions you are strongly advised to take certain drugs but with m.s. the onus is passed on to the patient. Also neuros seem reluctant to specify which drug someone should take.

A considerstion regarding which drugs to take shold be the possible side-effects - worryingly long-term side ffects are not known.

After a couple of mild relapses which my GP put down to trapped nerves I had a big relapse where I lost coordination in my right hand/arm together with lots of other symptoms and developed a general weakness on this side which two years later I still have problems with. It took me seven months to learn how to write again as although I knew what an A looked like my brain and hand were not connecting. I now also use a FES to help with my walking. My symptoms were very mild before in comparison. Sometimes with ms you will recover from your symptoms after a relapse, sometimes you will not. Symptoms hopefully improve after a relapse but no one can say how mild or severe the next relapse will be or how well or not you will recover from it. MS is just so unpredictable. DMDs are there to slow down the progression of this disease and reduce the severity of an attack. As with all drugs some agree with you some don’t. The first DMD I tried made me very ill but knowing the benefits at stake I swopped to another one after six months and now it just slots into my way of living, no fuss. When choosing no one can tell you whether a DMD will suit you, in terms of side effects, until you try it. If you decide to go for it, choose the one that you think will best fit in with your life style. The DMD decision website can give you lots of information on all the drugs available. Hope this helps Mish x

There’s a choices website to help you decide www.msdecisions.org.uk which is really good. I’m on Avonex, no lasting side effects and feel much better. Hoping I’ll stay this way for a while.

Many thanks for all these really helpful responses. I am writing to the neurologist to get things started now.

Best wishes

Hi all,

I was diagnosed in Feb after having an inkling re MS for a few months, and have been offered DMDs too… I came away from my consultant appt thinking I’d go to the gym, pilates, and get acupuncture etc., and that somehow everything would be ok… and then just read this so am thinking again now. I guess I’ve been in denial but am meeting my MS nurse for first time on Monday so will talk to her then… Yeh, it was weird not getting any advice from teh consultant, though he did say there was a new treatment coming out in a few months and I dont’ know if it’d be good to wait for that.

Good to hear all your experiences,

x