Help Re DMD Injections

Hi

Over the last two years I have had some issues and lots of tests. It started back in September 2010 with a Retrobulbar neuritis Left eye), this was what promted the tests. The following August (2011) I had another RN in my right eye and received IV steroids for this. Jan 2012 started with terrible vertigo? but the hospital I was with at the time did not seem to follow up on anything, and as a result of this I have had my care moved closer to home (ish).

I had my first appointment last Friday (14th Sep) and found them to be most excellent. The examination was thourough and the Doctor listened, as in between the change over I have developed deadness to outer of left hand/arm and left foot/shin.

The Doctor said that I will have to have DMD injections and I have since had my appointment throgh to see the Nurse Specialist to be shown how to use them. Obviously I am a bit concerned and wondered if anyone would be able to help me.

Thanx in Advance Andie

Have you discussed which DMD you will be using?

Hey Andy…i had the intramuscular avonex once a week for a while, its not as scary as it looks and you’ll be surprised how quickly you get used to doing it yourself, i chose to stop taking it as i didnt find the side effects wore off as they did for other people.

I didnt have any site reactions and i think they have a little autoinject thing you can use too…it is a bigger needle for the once a week intramuscular injection than it was for the every 2nd day injection…my reasoning was once a week sounded better than every 2nd day…all about personal choice…hope it goes well, the ms nurse who showed me was very helpful

cat

Not yet discussed what DMD I will be using, I have an appointment on 9th October with the MS Nurse to discuss and receive instructions.

Very scary at first. Has become second nature now. I’m on 44 rebif with an autoinjector - don’t even see the needle. Stings a bit but not too bad. There’s a DMD decisions website which should help you choose Best of luck Min xx

Hiya Andie

As flowerfairymin has said, have a look at the MS Decisions website as that’s really helpful and give all sorts of info as well as a ‘which might suite you best’ sort of questionnaire.

I’ve been on Rebif 44 and I’m currently on Copaxone. I was lucky with Rebif and didn’t really get the dreaded side effects from it, I took my MS nurse’s advice and did the injections at night and took 2 ibrupofen to help if I did have side effects (so you sleep through them). The injections were easy to do and I believe they are even easier with the new auto injector that they have these days. I would do mine Mon, Wed + Fri and use the reminders in my phone so I didn’t forget.

Unfortunately after a couple of years, Rebif stopped working so I changed to Copaxone. The change to everyday injections was no big deal for me, I still have to use my phone reminders to remind me. I’ve had worse site reactions from Copaxone than Rebif but took a 1-a-day antihistamine until my body got used to it and the reactions eased.

Hope that’s given you a bit of info. If you have any specific questions about Rebif or Copaxone, feel free to pm me.

Sue

Hiya…as others have said please use the msdecisions site which will guide you step by step through the ins and outs of what is going to be a big commitment on your part.

At the end there is a tool to use where you rate the importance of the various aspects of each one against your lifestyle and preferances…for example not having flu like side effects and not having to always keep the injections in the fridge was important to me,so to my suprise I chose to inject daily with copaxone.

If you go to your nurse with knowledge of the options and informed view on your likes/dislikes you will get far more out of the meeting.

Good luck

Pip

While everyone is different, I would reccomend the Avonex once a week injection pen. It has flu like side effects for the following 8 hours but even though they haven’t gone away for me (they are supposed to) It’s still a very easy to use method of injection and dare I say…idiot proof!

Hi Everyone

I’d like to say thank you to you all for the comments you have added and say that I have found them extremely helpful. The information you have provided for me has given me more time to think and made a stressful time have more clarity.

Thanx to you all!! XX