Some advice please

Everyday living
1

Hi,

I usually post on the newly diagnosed thread but I thought that this would possibly be more appropriate for here.

Just got back from Wales and I had a letter from my neurologist. It contained the results of my second MRI. Unfortunately I have new lsesions. Pretty fed up right now but would like some advice. They are going to put me on DMDs. My neurologist primarily deals with Beta Interferons. Has anybody had experience of these and if you have, which is the best in your oppinion? Don’t really like the idea of injecting myself everyday but I suppose if it’s going to help then that’s what I have to do. Fairly shattered right now. I hate this [filtered word] disease. Any advice would be gratefully received.

Thanks,

Adrian

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Hi Adrian, my ms has taken a similar course to yours. I had an MRI two and half years ago and on finding more lesions I was offered dmd’s. I choose Avonex which is only once a week, the only downside is it is a longer needle as it has to go into your muscle. I think they can provide a injector pen which I don’t use. I had a few nasty flu like symptoms to start with but after a few weeks they subsided. If you google ms decisions there is lots of info on different dmd’s. Good luck with which ever you choose. Karen

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Thanks Karen.

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Adrian I had beta interferon going back some years now err 12 at least, unfortunatley it didn’t do for me had more relapses on it than off it. All I can say is try it and see how you go never know works for some not others and the thing I liked about it was you couldn’t see the needle as it was in a rebiject pen :slight_smile: don’t do needles! First injection was terrible with really bad flu like symptoms. Hope you get on ok xx

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Thanks Bambi. Do you taske anything now? x

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Adrian No don’t take anything now apart from the odd IV solu medrole steroids when I have really bad relapses, did take aziathiprene for about 2 1/2 yrs after the beta interferon but again had to come off that as there was concerns with my blood test results, liver/kidney function. I do take Gabapentin for the pain in my legs though xx

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Hi Adrian,

I have been injecting Rebif, since April 2011. I was the biggest injection phobic going, but after a while, it just becomes normal and part of your routline. My Neuro was very keen, for me to start DMD, so I did,a.s.a.p.

All the best

Gareth

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Hi Adrian,

I was diagnosed in April of this year. Surprisingly my neurologist suggested DMD’s immediately, hopefully preventing any further lesions. I was a bit taken aback to be honest as I wasn’t expecting to be on any medication quite so soon.

I use Avonex , administered only once a week so less invasive to life in general. I’ve been supplied with the pen and it’s incredibly easy to use. I still suffer from some flu like symptoms up to twelve hours after the injection but I use it on a Monday evening and sleep through most of them. Feel a bit washed out on Tuesday morning but, hey, Tuesdays are a rubbish day anyway so it seems appropriate : )

While the whole process is not my idea of a fun time I keep reminding myself that if all goes well this will be a long term benefit.

Linnhe

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Thanks for input. Very much appreciated. I think I will go for Rebif. I should have been on DMDs years ago as I had my first attack five years ago.

Thanks very much,

Adrian

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Hello Adrian,

I have only been given the one DMD so far (Rebif) and I found this incredibly useful and I didn’t have and side effects thakfully. I used to have two relapses a year as regular as clockwork, but with Rebif I only had one every five years, and with no side effects either, you just can’t go wrong. The jabs are incredibly east too as it is just a push button, and the needles aren’t very long. Unfortunately these drugs aren’t as effective on me as they used to be (after many years) so the Big Cheese will no doubt be changing my DMDs to another, but I have no idea what it might be.

Best of luck with this but you won’t need it, and you will agree when you see just how easy it is.

Best wishes,

Moira

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Thanks Moira. That sounds really good. Going from two a year to one every five years. Brilliant. Hopefulluy I won’t suffer from the side effects either.

Thanks.

Adrian