Forum

Just a little question...

Hi guys, I hope everyone’s doing good :slight_smile: I was wondering, just out of interest how many of you with a dx are on DMDs? And has anyone been dx and decided not to start them straight away, if so, for what reason? The reason I ask is that I have been recently dx and I am not starting any meds just yet. Take care. Ash x

I wasn’t offered any at DX, been offered treatment for symptoms since but held off almost everything. For me, a lot comes down to being 29 and knowing that anything I start, I’m on for life. I’ve also not had any particularly troubling symptoms til this last 6-8 months. If the progression continues, I don’t think I’d think twice about DMDs because I want to keep working.

i was having a big relapse when i was diagnosed so i started on copaxone and 5 years later still doing my daily jabs.

its a big decision for most people but i was so poorly not to mention black and blue with a broken toe from falling.

good luck whatever you decide

carole x

I had my first symptons and diagnosis within 3 days of each other. I went straight onto Rebif. I cant really say that was a concious decision as I was all of a muddle and scared and just thought well I better go on something. I was on that for 2.5 years and now I am on Tysabri - going onto Ty was a much more thought through decision as I was calmer and more at ease with my dx.

I think its a good idea to get clued up on the DMDs now Ash, then when (if) you are offerred them you will have more of an idea of which to choose.

x

Hi Ash

Sorry, but this is a bit of a long one, but I think it will highlight how important DMDs have been in keeping me fit and healthy and why I didn’t think twice when offered my treatment.

I was diagnosed with aggressive RRMS in June this year. I am 44yrs old and an endurance athlete in my spare time. Running is my life and always has been since I was 13 yrs old. In June this year, four days before I was due to run another Half Marathon, I woke up believing that I had suffered a minor stroke; Itself, an outrageous diagnosis. Fast forward and an MRI scan and consultation told me that I had aggressive RR Multiple Sclerosis. My Consultant was excellent and strongly recommended that I consider Campath (now rebranded Lemtrada). I was booked into hospital for this treatment 9-13 Sept. Between June and September, I could do very little because I was plagued with horrendous muscle spasms and spasticity on my whole left side (including my face). I just wanted to die! I had gone from being an extremely capable individual to one who was finding it incredibly difficult to function at all. Fast forward again.

Three weeks ago, I started very lightly jogging across my local fields. Quite honestly, it was a little difficult, because I was still experiencing some mild symptoms and my left leg still kept dragging slightly, as I fatigued ( I was warned that this might happen though).

Now, I am pretty much back to my normal self. My treatment has been F-A-N-T-A-S-T-I-C. I am elated. I am now training on the running track and easily complete 12 laps at 8 min/mile pace. I still have a way to go, but it’s a start and it’s keeping me ‘normal’.

My story is a little different, after all, we are all different, but if you are recommended to have treatment, you must think very seriously about the long term purpose of your treatment. I found the following thread http://www.mssociety.org.uk/forum/everyday-living/reply-david603-who-believes-injectable-dmds replied to by Rizzo, very helpful and informative. Good luck and best wishes. Tracyann x

Hi I was dx in July and I havnt been offered any medication because I have only had one relapse in one year and I think you need to of had two, I might be wrong has I’m still getting my head around it all but I know I read this forum a lot and I worry because I’m not on any medication when a lot of people are. I get confused with relapses and symptons has my ms nurse thinks I have symptoms rather thank relapses but I am so confused. I have a really weak leg and can’t walk far at all but because I’ve had it for over a year before I went to the doctors medication won’t help she said but I sometimes think I would like to at least try some just to see if I improvex

I was dx in the late '90s and my MS was rather aggressive. Getting funding for DMDs was very dicey in those days, and I remember writing an impassioned letter to my MP when it looked as though we would be out of luck (I got a very nice reply). More importantly, my neuro did manage to secure funding for us without too much delay, which was a relief and a blessing, and I was able to start Avonex the next year. So I did not have to fight to get it in the end, but I would have fought hard if needed, and had many sleepless nights wondering how on earth we could manage to self-fund if the NHS refused. The Avonex kept me well, more or less, for about 7 years, by the way.

So the answer to your question is no, I certainly did not want to delay!

Alison

If you read the Bart’s blog, you’ll see that they think it is very important to start a DMD quickly. They write ‘Time is brain’. Basically, the longer you wait, the more your brain will be shredded by MS.

I’m not sure I agree with their scary stance, but when I was diagnosed, access to DMDs was down to postcode lottery and many, many people had no disease modifying treatment at all - despite having loads of relapses. I was so terrified that I wouldn’t be able to start a DMD, that it made my MS worse through worry.

I was lucky though. I’m still on the same DMD and it’s worked well over the years. I had to stop it for a few months due to a change in circumstances and I’d been on it for 8 years then. I had a very bad relapse which kept me in hospital for weeks. It took months to recover and I was put back on to my DMD almost immediately. My neurologist is very pro-treatment and thank goodness that there’s no more rationing for RRMS/PRMSers - although I think there will be for the newest drugs.

Like some of the other answers to your question when I was dx in 1997 at age of 30, DMDs were not routinely offered. Fortunately for me My MS was not that active and I didn’t take any medication- I just got on with life as normal. 16 years on I now take copaxone and have been on this for a year. Previously I was on rebif for 9 months but I didn’t get on with the side effects. I was offered DMDs following 2 relapses in the space of 18 months and I thought long and hard about starting on them. I took over a year to decide, as compared to some people with MS I was not relapsing that frequently or severely. What made me decide to start them was I wanted to do all that was possible to keep as healthy as possible and if there was a drug available to me which could offer that I wanted to try it. My nurse reassured me that I could stop taking them at any time if I felt they were not helping. So to answer your question I started DMDs 16 years after dx and for me that was the right decision. If they had been more readily available in 1997 who knows if I would have started them- but I think I would have held off to see how my MS progressed. Cathy

Thanks ever so much guys for all your replies. It’s great just to get everyone’s opinion. I have been offered DMDs, but like Mrs Chica said anything you start you are on for life and at 26 I don’t think I am ready for that yet. I was a bit surprised that I was offered them, I only had my first symptoms in may and dx last week with no relapse just another lesion disseminated in time& space. It’s not practical for me to start them now anyway as I am going abroad for at least 6months. I guess it’s just personal opinion and with my neuros advice that I am a very mild case and I am not being reckless, I will just see how things pan out for me. Ash x

Hi Ash

I started on DMDs as soon as possible. I had my first symptoms in Dec 2008 followed by a disabling relapse in March 2009. My neuro felt it was important to start me on DMDs quickly and I agreed. I had to transfer to a prescribing hospital and as it takes a while to get the tests done and the prescription organised we were already into late June. I chose to delay starting until August as I would be off work then (school holidays) and could hopefully get over the worst of any possible side effects during that 6 week period.

Rebif kept me relapse free for the next 3.5 years but I’ve had two this year affecting my legs again so neuro isn’t happy that it is working for me any more. So now I’m playing the waiting game while tests are completed and hoping to start on Gilenya very soon.

Tracey x

[quote=Tracyann28]

Hi Ash

Sorry, but this is a bit of a long one, but I think it will highlight how important DMDs have been in keeping me fit and healthy and why I didn’t think twice when offered my treatment.

I was diagnosed with aggressive RRMS in June this year. I am 44yrs old and an endurance athlete in my spare time. Running is my life and always has been since I was 13 yrs old. In June this year, four days before I was due to run another Half Marathon, I woke up believing that I had suffered a minor stroke; Itself, an outrageous diagnosis. Fast forward and an MRI scan and consultation told me that I had aggressive RR Multiple Sclerosis. My Consultant was excellent and strongly recommended that I consider Campath (now rebranded Lemtrada). I was booked into hospital for this treatment 9-13 Sept. Between June and September, I could do very little because I was plagued with horrendous muscle spasms and spasticity on my whole left side (including my face). I just wanted to die! I had gone from being an extremely capable individual to one who was finding it incredibly difficult to function at all. Fast forward again.

Three weeks ago, I started very lightly jogging across my local fields. Quite honestly, it was a little difficult, because I was still experiencing some mild symptoms and my left leg still kept dragging slightly, as I fatigued ( I was warned that this might happen though).

Now, I am pretty much back to my normal self. My treatment has been F-A-N-T-A-S-T-I-C. I am elated. I am now training on the running track and easily complete 12 laps at 8 min/mile pace. I still have a way to go, but it’s a start and it’s keeping me ‘normal’.

My story is a little different, after all, we are all different, but if you are recommended to have treatment, you must think very seriously about the long term purpose of your treatment. I found the following thread http://www.mssociety.org.uk/forum/everyday-living/reply-david603-who-believes-injectable-dmds replied to by Rizzo, very helpful and informative. Good luck and best wishes. Tracyann x

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