Help Required (any ideas?)

New diagnosis and before diagnosis
1

I am a recently diagnosed mother, age 41. I am due to visit Queens Square tomorrow to discuss my DMD treatment.
After much research I have reached the conclusion that Avonex and Rebif are the best solutions for me. I have put together a pros and cons list and both come out as the same.

Does anyone have anything to say about their own experiences with either of these drugs? Something that might be useful so that I might use someones personal experiences as a way to tip the balance. I know that everyones experience of the drugs are going to be different but I am hoping that there with be some good reasons / faults from personal experience that I might be able to consider as both are equally appealing at the moment.

Thank you for your help in advance.

Fae

2

Hello Fae, Welcome to the forum :slight_smile: I have been taking Avonex for 9 weeks now. So far has been the right choice for me. I mainly chose it due to it being once a week and into the muscle as I didn’t want to worry my 7 year old with injection site reactions. I need to work on a Saturday morning, so I inject on Thursdays to give me some time to recover. I have school runs to do so anything more than once a week is just not going to work. You don’t say what your daily routine is but it may be worth considering how each drug would fit in with that? As for side effects, mine have been controlled with paracetamol and occasional ibuprofen. The pen is very easy to use and I am happy with everything. I have read some positive posts about Rebif which sounds easy to use etc. I am sure you will get responses about Rebif. It is a hard choice and it took me a while!! Got there in the end :wink: Good luck and if you want to ask me anything, please do :slight_smile: Sam x

3

Hi Fae,

I’ve been taking Rebif for 3 weeks and so far have found iy very easy. The Rebismart machine makes it a doddle and you don’t see the needle at all, which is a bonus for any one who is a bit nervous about injections.

Side affect wise, I felt a bit sickly after the first 8mcg dose and then fine until I went up to 22. After the first 22mcg dose I felt a bit achey that night and a bit grotty the following day, but then after the next jabs I felt absolutely fine. Unfortunately I had a bit of a disaster with the meds when I came away on holiday. The reception managed to freeze them by putting them too close to the cooling element in their fridge, so I’m on an enforced break til I get home and so can’t tell you what the 44 dose is like yet.

If you post over on the everyday living forum, it’s a bit of a busier board and there are quite a few of us who have started Rebif recently who will be able to offer their experiences and I’m sure there’ll be some on Avonex as well.

Good luck with your decision, it’s not an easy one to make.