Okay, so I went to my “Newly Diagnosed Day” . Met my nurse, and met bew people in the same boat. However, none are on dmds, none have been invited to go on a dmd day prior to starting injections. I go this Tuesday and am nin the wiser! Do I or don’t i? Am on the milder side. Diagnosed august last year, confirmed again this january. I work full time as a teaching assisrant, have 2 children 10 and 13 and a supportive hubby. My neuro said rebif as I am needle phobic. Have checked out ms decisions. Still don’t know! My nurse said its mt call. She suggested aconnex as its only once a week but omg its like 2 foot long!!! Help!!! What if I dont relapse? I know that you still do on the dmds so will I benefit in the long run? I am so stressed over this
its really your decision but look at it this way, you need to fight this b*stard disease with all the weapons you can get.
i’m on copaxone and its dead easy. i know its every day but it easily becomes part of your routine.
if you consider copaxone there are a lot of horror stories about injection sites but they can be avoided by keeping your skin in good condition and massaging the site the day after.
I use avonex, the needle on the msdecisions website is for the normal injection and the auto injector is a crossbow like thing. I use the avonex pen and the needle is 2cm long not so bad. You get the “sharp scratch” as the needle goes in, that last’s a second and then its gone.
Msdecisions is a bit out dated, you need to research on the auto injectors for the dmd’s,
It is a very hard choice but i chose to start avonex because i didnt want to blame myself for not trying further down the line.
Best of luck it is a hard decision,
I would look at it this way: if I try one and it works, brilliant; if it doesn’t, then at least I tried and there are others that might work better that I can still try. If I don’t try and I relapse, then I will never know if I could have prevented or reduced it - will I be able to live with whatever damage the relapse causes without regret or recrimination? (That’s the key question really.) DMDs are preventative. People do best on them if they start early, before there is any significant disability. Injections are MUCH easier than most people think. Sorry to be blunt, but you are making a very much bigger deal out of this than is warranted. If you cannot stand needles, then go for something that you don’t see the needle (eg Rebif & Rebismart), get someone else to do the injections (eg your GP practice nurse may be happy to do an Avonex injection once a week?) or say no. But, if you say no, be sure that you can live with it. There really is no right decision. We all have our own views, but it has to be whatever’s right for YOU; no one else. Karen x
Thankyou all for your advice. Karen I am sorry but I don’t think that I am making a bigger deal out of this than warrented. I wish I was as I could do without any of it. Yes we are all in the same boat but we all cope differently. My life will never be the same again and I will get used to it in time x
I think you also need to take you lifestyle into account also. You have a full time job and 2 children. Perhaps Copaxone would be better as you will not suffer any flu like side effects. I expect those sort of effects may be detrimental to your job etc. and I think they can last for up to 12 weeks. You may have mild ms at the moment but taking a dmd will hopefully reduce any relapses which can cause on-going damage which never truly disappears so prevention can only be a good thing…right? Honestly, the actual injection part is quite easy and you’re speaking to a real needle phobic and I’m not saying there wasn’t a few tears at the start but it was more my anxiety and fear at the thought of injecting. You will be surprised at how mundane and routine it becomes. Yes, sometimes it stings ( sometimes, not often ) but the important thing is to get the right needle depth for the particular part of body and to make sure the solution and your skin is not cold. As for site reactions, they become less and less…when I was on Copaxone my reactions started to get better after just 10 days of injecting and within 2- 3 months it was hard to tell sometimes where I had injected. I spent about 2 weeks trying to decide which one to choose and there were a few very surprised people at my choice of Copaxone as they knew about me and needles!!! But I simply didn’t want to take the chance on the flu symptoms. Unfortunately I’m now in the position of having to take an interferon which is going to arrive in the next few weeks but never mind, I’m sure i’ll get through it all ok in the end. I do hope that you make a decision soon really for your peace of mind as it’s stressful ( which you don’t need ) agonising which one to choose.
You’re right Dawny, your life will never be the same. But you have this option to make it a bit less unpredictable.
DMDs lessen the frequency and severity of future relapses and my guess is that if you are newly diagnosed, you haven’t experienced a relapse that floors you and keeps you off your feet for months at a time. Stops you going to work, looking after your children, your home and family. Because believe me they can do that. I hope they never do that to you but if you’re in any doubt, have a read on the Carers board.
This may sound harsh but don’t underestimate MS. You asked what if you don’t relapse… well, what’s the chances of that if you have RRMS? It’s not all remission. Relapses can be truly awful and if you can do an easy - yes, easy because there are autoinjectors to make it easy - injection to prevent them, why would you not do that? I went on to DMDs as soon as I possibly could because if I can prevent just one relapse, it’s worth it. There was nothing for me to be stressed about - I was, and still am thankful to have the Interferon.
Good luck with your decision.
Thankyou fudgey x
We are all used to taking medicine to make us better. DMDs are not like that. You take a punt that going on them will keep you out of trouble, and the evidence is good that they will help, but there are no guarantees and you will never know how many bullets you missed, if any. Plus, you have to stick a needle in yourself on a regular basis which, most of us feel, is a bloody liberty, coming, as it usually does, on top of a life-changing diagnosis. So it requires a lot of mental adjustment to get used the idea of DMDs as it does to the idea of having MS in the first place. And it is easy to forget that the having MS bit is the biggie - choices about DMDs are actually second order of importance in the scheme of things. It is a pity that it is usually necessary to deal with it all at once, and that is tough. Personally I just wanted to do all I could to stay well, and for me that meant DMDs. Avonex was what was offered and that’s what I got, but I would have gone for whatever I could get. Good luck with your decision. Alison x
You say you are on the milder side with your MS but that doesn’t mean you will always be that way. Think of DMDs as an insurance policy, they are a heck of a lot easier than dealing with the ramifications of a relapse that leaves you permanently disabled.
Because of complications with my medical history I was unable to take Interferons or Copaxone (a very rare situation which almost NO one else in the world has run into) which meant that for 10 years my MS has been uncontrolled until last year when I was able to start on chemo.
I am severely disabled now. I can’t walk more than 20 metres, have severe permanent visual deficits, problems swallowing which resulted in pneumonia last year which nearly killed me and I need someone to come in EVERY day to help me shower, cook, shop for me, clean… do everything basically. I spend probably 85-90% of my time in bed.
I am a single mum. To see the effect this has all had on my kid is heart breaking. So many things we can’t do together, so many things she will never have experienced as most kids do and take for granted.
Rarely a day goes by that I don’t wonder how different my life might have been had I been able to start and successfully take DMDs 10 years ago. But the damage is done and cannot be undone… this is for life.
And the irony is that I have another medical condition that requires injections every 3rd day and which will increase to twice daily in a few weeks. Do I care? Nope. Self injecting is no big deal. Staying healthy is.
Please, please, for the sake of your children and for your own sake do think very carefully about what you are gambling with here. Maybe you need to do some reading on how severe MS can become and how devastating a disease it can be.
For me it was a no-brainer; I had had two acute relapses (one affecting speech and hands and one affecting mobility) which had led to my diagnosis within 3 months of each other and this came out of the blue. I was desperate to do anything to prevent more severe relapses happening so quickly and was frustrated that it was going to take a while to get the DMDs and that I had to be referred to a larger hospital for them. I do understand your turmoil to a certain extent, emotionally I was still coping with the shock of diagnosis and having to choose which DMD just made me realise that this was really happening. There was no chance of staying in denial ;-). I think you can tell that I was a bit mixed-up at the time!
I was really scared about self-injecting but my nurse gave me full training and was with me for the first one. After the first one, I remember thinking “What was all the fuss about?” Now I think nothing of it. I’m on Rebif by the way and I didn’t find the flu type side-effects too bad. I work at a school and planned the first injection for the first week of the school holidays so I could get the worst of the side-effects out of the way while I was off work but in fact they were easily controlled by ibuprofen and paracetomol for up to half a day after each injection. Compared to the effects of a severe relapse (ie not being able to walk) the effects of the injections were nothing.
- i’m the same as i was dx a year before my 2nd relapse and that let my neuro start me on dmds and it was a no-brainer to me either and after appt with ms nurse last thursday i’m waiting to start rebif…as a few said before me i want anything to help fight this as so far i haven’t been floored by relapse and just had things i could manage and still work…i really dread the day it comes along and really hits me so here’s hoping the dmds do the trick
anything to keep this at bay for a while will do me…
I meant to say I have just had my first relapse since 2009, had steroids just over a week ago and walking is almost back to normal. Feet are still tingly and one arm is heavy, but I carried on working through this relapse, wasn’t in hospital barely able to walk, didn’t need to sleep constantly and am recovering very quickly. For me this is proof that Rebif is working for me as it has reduced the number and severity of my relapses.
Thought I would let you guys know that I went to the DMD day at the hospital and played around with the needles and autoinjectors etc. I have decided on the rebismart as being needle phobic it’s the thinest and smallest and I won’t see it. It’s also what my neuro suggested when I last saw him. So I am just waiting for the phonecall to arrange delivery to start. I am feeling more positive now. Thankyou to all who gave me support xx
That’s the one I have chosen…we must compare. Est start date or me is 20th may and I chose it for same reasons as you x
Yes definately. I just have to wait for that all important call for delivery x