Forum

DMDS

How do I go about getting on DMDs? Ive had three relapses in over two years. So I think I qualify. My M.S nurse is saying itll be April before I see the consultant but I’m getting worried in case I have another relapse or deteriorate further. Could I contact his receptionist? Also how often should I see my Neuro rehab. I saw her last Monday but she said she didn’t want to see me for three weeks and wanted to build up slowly really given I’ve only just had a relapse? Thanks x x x

hi lisalou

use the waiting time to find out about the range of dmds. ms decisions site is useful.

meanwhile make sure that you are eating well and sleeping well.

carole x

hope you are soon joining us happy jabbers

I’m eating well but not sleeping well which really isn’t like me. I feel like my brain is too active and this results in me struggling to get to sleep then when I do u dream loads and these dreams are all about my m.s and injecting which I think is due to my needle phobia. Ive been determined I wouldn’t go on medication for so long you see and been well really up until these last few months. Thanks for your reply Carol x

ask your gp for something to help you sleep.

i had some tablets that worked and didnt make me feel like a zombie in the morning.

dont worry about the needles. there are auto injectors for rebif and copaxone. you dont need to see the needle.

talk to the consultant or ms nurse about your phobia, i’m sure they will reassure you.

carole x

I thought about that if it continues but I have a little boy, he rarely wakes in the night but I worry I may not hear him if I was to have a sleeping tablet. Thanks though I might try some herbals first x

Just bumping this up to get more advice and wanted advice or recommendations on the DMDs ? Thanks x

Hi, April is a long time away isn’t it, when you want to discuss something important. However you might not be able to get an appointment any sooner. How do you get on with the ms nurse, quite frankly, I find the nurses (I have had many over the years) more bother than they are worth and another layer of beaurocracy that holds up important decisions. I mean if you are going on dmd’s, and I am no expert but it sounds like you should qualify, how long is it going to take. Personally if I was you and wanted onto dmd’s, I would go back to your gp and see I he can get you seen sooner by the neuro. Don worry about injecting, it really is quite easy and painless, like anything, the first time will be the worst, after that it will be easier. Hard as it is, I don’t think you need worry about injecting and as Carole says you get auto injectors. I’ve never used the auto injectors but believe tey should make the job even easier. Cheryl:-)

Hi lisalou, ive been using the avonex pen injector once a week and i feel it works for me! and have been touch wood have been relapse free for 14 months… gd luck. Tony…

Hi That sounds about the right length of time to see a consultant unless it’s an emergency. As Carole says, use the time to research the different DMS’s…it took me a few days to decide which one to go for. Also, do use your MS nurse…mine is amazing and I def couldn’t have managed without her for all sorts. The MS nurse is usually the direct link between you and your consultant and therefore it would be worth explaining how you are feeling to him / her.

Thanks for all the advice. I suppose April is actually only about six weeks off. The M.S nurses are good but I’ve never had to use them that much until recently. They take a while to get back to you when you ring too. She did say she had asked him to see me as soon as possible especially as I’m not on any medication as yet. Some of me is reluctant to on it, however a lot of me thinks maybe its time really. I just don’t know a lot about them really then people also say if you can keep away from meds its better for you etc (some people actually haven’t got M.S) and then I question if I’m doing or thinking the right thing. But I want to be as well as I can for as long as I can for my family and me. Can I ask since you’ve been on DMDs what have you been like physically I.e any deterioration? It’s good to know tony that you’ve been relapse free so long, that’s great Thanks x

Hi lisalou, I haven’t started them yet…I see my nurse on Thursday to collect them and for her to run through everything with me. So I think my first injection will be Friday…I’ll let you know how it goes !! I chose Rebif because apparantly not only does it reduce the frequency of relapses but also the severity. Am a wee bit nervous !! Xx

Yeah please do Hun, I would be very grateful. All new this bit for me, been diagnosed nearly nine years but its not till this recent relapse I’ve looked at this especially as my leg is not recovering as much as I would like :frowning: Good luck Hun x

Oh bless you. I was only diagnosed 6 months ago but have been off sick since due to the severity of the relapse. Apparantly a brain scan 10 years ago showed the start of it but … I’ll let you know on Thursday what nurse says and keep you updated as I go on. Xx

Do you pay for the DMDs? Just something I suddenly thought.mive just done that m.s decisions thing and it came up with AVonex for me, probably because I said I didn’t want to inject often. :wink: all the side effects worry me though especially as I have a three year old too. Your relapse must be bad, I’ve been off two weeks with this one, going into third but only because the nurses want me to rest more to see if the leg improves more however I feel I would be fine at work. It would mentally do me good. Previously I’ve only been off a week or so with them, one a couple of years ago I carried on going in. Good luck with your appointment hun xxx

No…because the hospital organises them. The thing that put me off Avonex was that they have to be injected into the muscle rather subcutaneously. Xx

Hi again Lisalou, I went on Extavia (didn’t have a choice of what kind) just over a year ago. You get used to the injections I promise. I have not had a relapse since I started, there was six months between my last two relapses. No side effects, which is good with small kids. I would agree trying to stay off extra meds like sleeping tablets, esp with children. There are other things you can do to help your sleep before resorting to tablets. Once you get started on injections they won’t seem as scary and won’t be in your head as much. take care xxx

Which one is the extavia…does it have another name? How often do you inject with that one? It’s good to know that’s working for you. I had a relapse Nov 2010, then sept 2012, then apx two weeks ago although the new symptoms (weak leg) started mid November but I weren’t sure it was a relapse. As a result of leaving it my leg is taking longer to recover. Thanks for replying x

Extavia is a beta interferon, i inject every 2nd day.

Not sure how it works in your area, but I was sent away with all the leaflets about different options for DMDs but when I went in to see Neuro she said I HAD to start on extavia cause it was the cheapest, and if any probs then could try others afterwards. Kind of wish I’d not bothered doing any research since I didnt get a choice!

Thanks for the information amylou. I will keep you posted. Really wish I didn’t need to look at this avenue. Does it effect things like going out for a meal and a few drinks etc as I do this every other week usually when well. Would I have to inject whilst out? X

Hi Lisalou,

I am starting Rebif on Monday. I will let you know how it goes too. I was meant to start almost a month ago but they forgot to deliver half the stuff. That only arrived today. I was very nervous but now I am resigned to it. I am on a titration, so it will start off on a low dose of 8.8 mcg and build up to the full dose of 44 mcg by the end of a month. So, I think that the first month should be fine.

I was looking at your other thread about exercise. I love exercise and I especially love cycling. From my experience I have found that exercise exacerbates symptoms during a relapse and is good when you are out of relapse. I am really bad with over doing things, as soon as I feel OK I am off on my bike and I usually suffer over the next few days. I think that you just have do listen to your own body. It will tell what you need to know.

I would also really like to know how it went with Mrs H aswell.

Take it easy,

Adrian x