Hi all. I am 26, just recently had my dx after 13 yrs of not knowing! I will be starting on DMDs in the near future (awaiting MS nurse to come out to me to arrange) and after reading a few posts I am worried about injection sites and am after some advise! Firstly I am frightened of needles so getting my head around it has been bad enought, but I have a 2 year old daughter who is my world. I am a full time housewife and mum and am worried I won’t be able to have my daughter sat on my knee and lay around on the floor with her, which I can just about do at the min, because of pain at the injection sites. I hope this makes sense and someone can offer some advise! Thanks Steph
Have you looked at msdecisions to see which DMD you want. You need to be in control of what fits you and your lifestyle.
If you have Avonex its only once a week,but I don’t know where are possible sites for that.
It would be easier to answer when we know what your choice is.
I do have to say my cat is most put out at the mo because I use copaxone and my legs react nearer my knees so he hasn’t been allowed on for 2 days!
Pip
Hi, I was diagnosed in June am 38 and probably in truth still in shock at diagnosis. I have 2 daughters who at 7 and 12 still climb all over me! I chose Rebif and had my first injection yesterday, I was so worried and like you posted on here last week for some positive stories. Took me 15 minutes to press the button during which time thought was going to be sick or faint. Nurse said I was white as a sheet and thought I would pass out. When I finally did it I could not feel a thing not even a scratch, pinching your own stomach hurts more than the needle. I promise you it is so easy you will laugh at the worry you have caused yourself over nothing. The side effects for me were not nice last night but have woken today feeling fine just tired from not sleeping too well. Am looking at it with the view that I am hopefully stopping my MS in its tracks for as long as I can so I can enjoy my family, friends and life to the full. Wishing you lots of luck and please don’t worry. X
Hi Stephen I was dx in sep and started on Rebif at the same time, like pip said above we would be able to help more when we know which choice you’ve gone for. I am 29 and have a 4 yr old daughter, one of the side effects the Rebif leaves me with at the moment is a little red bruse like mark around the injection sites but does not hurt at all, with Rebif you take it 3 times a week but it takes less than 10 seconds to do the injection, I am using the rebifsmart device and find it very easy. I too am not great with needles and when I first heard I would have to inject myself it took a while to get my head around it, now I’m nearly two months into it and finding it fine, I had experienced a big relapse just prior to starting the Rebif which I am still working through so I am looking forward to getting better and then seeing the results of the Rebif in the future. I do the injections of an evening when my daughter has gone to bed - I didn’t like the thought of her watching me do it at her age, at the beginning I did get a mild headache and some very basic flu symptoms but nothing a bit of paracetamol didn’t fix, all in all the Rebif has not stopped me doing anything with my daughter at all. Hope that helps a bit. Liana X
Hi thanks for this. I have been thinking about which drug would be best for me but can’t decide between Copaxone or Rebif! I have been watching videos and reading as much as I can on all of them and I do think I will need an autoject device as I don’t think I would be able to do it without! Are these easily available? I am a little worried as I have read somewhere about mood swings which worried me! Thanks Steph
Good Morning Steph,
I have a wee boy age 7, and I am on Copaxone, this is my 10th week on it!
We were all the same starting out on a DMD, I made my decision which one between the msdecisions website and discussions with my neuro. It is a big step and a crazy thought that you will be injecting yourself! I’m a nurse and I’m fine about injecting other people, but not myself!! however as our friends on site here have said, it really is fine, quick and straitght forward and all about getting into a routine and fitting it within your life.
I was given a nurse who sat with me for my first injection, organised all my meds and supplies, auto injector etc… and was and is there on hand for me for any questions and help I need.
I have no experience of rebif, but as for copaxone, I’m sticking with that and doing fine just now.
Jools
X
Hi Steph,
I went for Copaxone on the basis that a daily shot was easier to build into the morning routine.
The skin-site reactions reduced after about a month, and were no problem at all after six months.
There is a “bee-sting” sensation that fades away after about 25-30 minutes. You are still aware of the injection site, but it is not a problem.
Note that I use the Auto-inject tool. I find this easier, but others prefer to use the syringe direct (but the auto-inject might be safer with little fingers around).
In the main, it is all about a new routine, and building this into your life.
Geoff
Hi Geoff and Jools. Thanks for your input. Yes the “building into a daily routine” is what I like about this option. Although I would more likely do mine on an evening (after daughter is in bed) as little fingers are around all day otherwise. I think this might be the choice I make I just need to run it over with my MS nurse. Thanks again Steph
Hiya.
Mood swings was one of my ‘not for me’ thoughts, and the fact you dont have to go for blood tests swung me in the direction of copaxone…mind you I needed little convincing it was the only one for me.
I knew if flu like symptoms was a side effect I would def get it,and yes you get an autoject with copaxone,which is the poor relation in gadget terms to the rebif nifty little machine.
The rebif one keeps track of where to do and what day from what I recall,where as you get a diary to fill in with copaxone.
I would be totally lost with where to inject next if I didn’t religiously fill in my diary,because my memory is terrible and as some injections don’t react then I can’t remember where I did.
I also keep a week in the bag supplied which has individual pockets with the days on, and tick my diary to show ive done it, as many times you truely can’t tell if you have done it or not .
It really is a very personal choice and to be fair if you really struggle with one type there is the option to change. I am happy with my copaxone despite the lumps and bumps,the copaxone nurse is in regular contact and does home visits,and I do a mixture of manual and autoject.
Whatever you chose you know you are doing your utmost to fight back,and hopefully BG12 will be another option soon.
Good luck whatever you chose,and remember we are constantly changing and evolving to carry on as normal no matter what our MonSter throws at us. You will find ways to carry on doing whatever you want to do with your little un,no matter what choice you make.
Pip
Hi Pip Thanks very much for your input! I think I know everything I feel I need too now. It’s just a case of waiting for my MS nurse to be in touch, she informed me it would prob be next week! I am worried about side effects but not as worried as I was as I know I am strong and have battled other issues and come out stronger. Although my “support network” (family) live over an hour away they are amazing and deep down I no I am probably going to be okay! Thanks again to all of you who have offered advise! You seems like an ace group of people! Thanks Steph
As a nurse myself, daily injections of Copaxone for me. A few good reasons as given by my ever loving wife, and scientific researcher (genuine) She thinks:
Having daily injections become a familiar routine, maintaining interferon levels in your body.
It avoids the side effects as other ones can give (and I am grumpy enough apparently)
And a big plus side is that as it is so many times a week (everyday roughly the same time in the evening) I cannot forget it being once a day!
Hi Vincea and Val Thanks for your responses it’s so nice to hear good story’s from everyone when I was fearing the worse! Thanks all Steph