I was diagnosed with MS in December having had 3 relapses although the 2nd one wasn’t obvious but did show up on MRI scan I am now going through my 3rd relapse and neurologist is referring me to the disease modifying drugs consultant
My first episode affected my optic nerve, peripheral vision was way off ,my right hand was shaky couldn’t write, right leg was heavy and overall balance was terrible
My current relapse has affected my vision I had a 5 day course of metped steroids which seem to stop the vision problems this was 2 weeks ago I now have numbness all down right side particularly my hand
I am looking for info from anyone regarding the drugs that will be offered to me and personal experiences please
Hobs. Thanks for that I have already read up on whats available. Would be nice to have some feedback from people who are already taking DMD’s as I need to be making decisions soon
doesnt matter hugely what other folks experiences are cos its ur ms and it different from everyone elses. before i am shot down by others i also understand that u just want some sort of idea but i dont see how that will help you with ur decision-it will be up to neuro and self.
for me i have never had any dmd and started tysabri 7 months ago but i dont see how that will help you!
please understand that i am very realistic but that doesnt stop me understanding ur question-i just think dont there is an answer to it. folk will have taken them all-not altogether! but still that leaves YOU with the decision. depending on choice folk will have positive and negative reports so u will still be left with final decision-probably even more confused than u r now!
sorry if this is not the sort of reply u wanted but its the only truth i can offer.
Hi I have been on 2 DMDs over 11 years and agree with Ellie that each mser is different. Look at each drug and think how it will fit into your lifestyle and needs. Do injections worry you. Are the new tablets an option open to you. Try one. If it don’t work then you can swap. All the best Neil
Whilst I agree with Ellie, having to make a decision yourself is very difficult without understanding what you can expect from the treatment offered. I guess you need to start with setting out what you want from your DMD. I am also on Tysabri which is for highly active relapsing remitting MS, which I went for because I was going downhill fast and it is successful in reducing relapses. Relapses in my case was causing permament damage, so I was prepared to gamble the possible side effects (including PML) against slowing down the inevitable long term consequences. I also liked the fact that the teatment is only once every 4 months at my local hospital.
New drug are coming on stream so your neurologist should be able to let you know your choices, (funding is an issue for certain treatments).
Thanks for feedback - I will chat with consultant and see how thats goes - I have heard good reports re Tysabri but i dont think my episodes have been severe compared to others on Tysabri - oh my word what a mindfield I have found myself in !!!
Like a few have said everyone reacts differently to DMD’s.
I first was on copaxone for 14 months had more T2 lesions while on it, injecting every day is a pain and lump under injection
site gets old fast.
From copaxone moved to Tysabri for 5 months did feel great on it until the crash happened on it where I developed Tysabri antibodies so could not have it anymore. (nothing to do with PML)
Now on Rebif for 16months needles are simple and pain free, no site reactions and its just 3 days a week. Any so called flu like symptoms stopped after few months. But being moved to Gilenya soon.
Also unless guidelines have changed a PCT would like you to try a beta interferon before starting Gilenya so you can’t jump from copaxone to Gilenya (Pill)
There is a 3 day version of Copaxone coming out but can’t remember when that is, I read it somewhere.
Hiya, have not been on the site for a while but have just seen your post reagrding DMD’s. My first relapse was in March 2010 and I was diagnosed by the August that year. I started on Rebif in the December choosing that as the best one to fit in with my lifestyle. I did not have any of the usual side effects like flu like symptoms but started to get stomach cramps especially around that the of the month. I did not put this down to the MS or the rebif and went down the line of having every other possibilty checked. I had a new scan at the beginning of January and my consultant was pleased that there was only a slight change so the rebif was doing its job but agreed that if I can not cope with cramps that I have been having then I can change to either Avonex or Copaxone but at the moment I would not qualify for any of the other treatments. So I am back with the dilema of which one to choose, stay with what I know or try one of the other two. Cramps with Rebif is one of the rarer side effects and I would recommend it as a good place to start, 3 time a week and not into the muscle. Using the rebismart makes it easy too.
Hi you any further forward with your decision. I’m ok extavia but they’re thinking of moving me to tysabri or Gilenya. This is not a reflection in extavia I only started it in dec they just think my ms might be a bit more active than first thought. With regards extavia it’s injected every 2 days. You can inject with the needle or the pen. There’s 4 site locations legs arms stomach and bum. It’s not into the muscle. I’m not left with site marks. I thought it made my muscles burn but it turns out to be a relapse. Good luck with your decision X
Hi Alice, I am on rebif - for a couple of years. Started on 22 then persuaded neuro to put me up to 44. I hate injecting and would far rather have the tablet one. However I know I have to inject and its not too bad. Only stings a bit. - I think I just resent it as its so unnatural to inject. Can leave injection marks. So wearing a swimsuit is out for me as I’m a non disclosed. Don’t really get fluey side effects. Sometimes I feel rotten day after which I blame the rebif for - but then it might not be. Delivery of rebif, needles and sharp bin all go to my local,chemist every 3 months who keep it in the fridge ready for me to pick up. My chemist also gets rid of my sharps bin for me. No major relapses on Rebif but do still get mild sensory relapses. Good luck in your decision and journey Hugs Min xx