This maybe a strange question, but do you pay for the DMD’s?? I’m currently a stay at home mum but not claiming any benefits. I have my first appointment with MS nurse next wed and then seeing neuro again on the thurs, busy week! Just wondering what I can expect at my first app with nurse. Also wondering if you have a say in what DMD’s you take or is it the neuro choice? (sorry unable to paragraph) Thank you
No you don’t, I’m not sure how they work it but with mine they are delivered by Bupa Home Healthcare and by doing it this way NHS receive a 20% discount. I think because of the cost of them the prescription fee of £7.85 seems pointless to collect. You do have a choice but I didn’t have the full choice between all of them, i think my trust only offered 3 and it was my decision which one I took of those 3.
It is a monthly prescription, so in theory that could be charged at standard prescription rates, but as rufus said it will be delivered straight to you every four weeks (it has to be kept refrigerated so get delivery to somewhere with a fridge) and the drug company just don’t want to collect the prescription charge so they absorb it.
Oh, and I had to choose between two - Rebif and Avonex. My first (only) appointment with the MS Nurse lasted around an hour and was a lovely, informal chat about how I was feeling and coping and things that might help.
After I was diagnosed in January of this year, my neurologist said I could go onto dmd’s if I wanted to. I was so confused as to which one and asked his opinion and he suggested Rebif as it’s only 3 x a week and I hate needles. I still couldn’t make up my mind so I was invited to a dmd information day at Southampton General where there were about 15 of us there all from different walks of life. One woman there had ms for 9 years!. It was really good as you could play with all the ways of injecting the drugs and choose which drug you would prefer and how/what you wanted to inject it with.
It is totally free and is run as part of a “risk sharing scheme” this is where the government and the drugs companies get together and share the cost of the drugs. I too have mine delivered by Bupa Home Care every month. This comes to my workplace during term time as I work at a school and to home in the holidays. The vans are unmarked so no one knows who is delivering to you.
Hope this helps and good luck!.
I am now starting my 4th month on Rebif 22mcg (I didn’t start on a lower dose and should titrate up after this month to the full dose of 44mcg) and have not had one side effect! Just the red site marks at the start of treatment. Even now they hardly appear.
Take care - Dawn x
Thank you everyone for your replies and info! I’m thinking that I would like to try Copaxone, simply because im at home with a little one and I don’t have any family around that can help me if I get side effects. I’m thinking I wouldn’t cope if I had flu like symptoms for 3-6 months! I’m abit apprehensive about injecting everyday but suppose it’s just something you get used to! Thank you again for your help xx
Hi honey1980- don’t want to add to your confusion but wanted to make sure that you knew about the DMD options first. If you decide upon copaxone and then in the future you wanted to go onto gilenya you wouldn’t be able to go straight onto gilenya without trying one of the other betaferons first (eg rebif) as you don’t qualify on copaxone to go straight onto the more advanced drugs. Just wanted to make sure someone has explained this first as originally I was going to do copaxone until this was explained and then I decided upon rebif for this main reason.
Do take note of what Karina has said. I chose Copaxone before Gilenya was available. This may not have much impact on me at my age, but might be very important for you. My choice was on the basis that a daily injection was easiest to build into a daily routine (and the lack of side effects came a close second). It seems to have worked well for me.
The prescription is made out by the hospital you attend (and it comes off their budget), and delivered by a contract pharmacy (Healthcare at Home, or BUPA usually) and it really is free to you. All you have to do is to be able to put it into a fridge if required (Copaxone is, don’t know about the rest).
Met with my MS nurse today, very nice lady. Had a chat and she explained alot of things to me regarding DMD’s etc. I did ask her about going from copaxone to gilenya, she said there was a problem, this was due to funding issues but it has now been resolved. I’m nervous about starting any of the drugs, the injecting isn’t a problem, I just don’t like the thought of any effects it may have on me. Im seeing the neuro tomorrow to talk through all the options some more and hopefully make a decision that im happy with and stick too! Thank you for reading and for your advice xx