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DMDs help please

Hi everyone

I have the difficult decision as to which DMD to take and am thinking about Avonex, does anyone have any positive or negative issues with this particular dmd? My pain threshold has reduced immensely since having MS and I just wondered if anyone has any problems using this dmd, I thought maybe injecting once a week might the better than the alternatives mainly becaused I hate needles and I’m very anxious about the whole thing but my relapses are getting more frequent and the last affected my mobility slightly so I have finally relented with my decision not to take medication. Any help will be greatfully received.

Many thanks

Nicky

Hello, I have been taking Avonex for 13 weeks now and so far I am happy with my decision. The pen is very easy to use and you don’t see the needle going in. Please let me know if you need any more info about it, hopefully some other users will be along to help. Sorry, struggling today. Sam x

Hi Nicky, sorry but my return key won’t on the site today so this may look a little odd??? I have been injecting with the Avonex Pen since April this year. One of the main reasons I deceided on Avonex is because of only having to inject once a week. I choose to inject on a Monday evening as nothing goes on on a Monday evening (even the Pub is closed in our Village on a Monday), and Tuesday is one of my days off, so if side effects are a problem I can just rest all day Tuesday. As for side effects, I only had slight Flu like symtoms after injecting for the first 6 weeks or so and they only lasted for 24 hours maximum, so by Tuesday evening all was well. I just used Paracetamol and Nurofen to releave the side effects. Now I don’t get side effects at all. Now I just take two Paracetamol when I get in from work on a Monday night (approx 6pm) and get the Avonex out of the fridge at the same time. I then have a catch up chat with my Wife, then I take the Avonex upstairs put it on the bedside cabnet then I go for a shower. I will then inject after my shower (approx 6.30pm) and it’s all done for the week and I can get on with my life. I do it in the same routine every week and it seems to work for me. As for the needle, when you are prepairing the pen you don’t see it. You only see it after the deed is done! I still have’nt felt the needle go in my leg on any of the injections (15 or so?). The pen is quick and easy to prepair so there is no long build up to think about it. I hope this helps you make your decision and puts your mind a rest a little? If you want to ask me anything else about Avonex Pen please do. I’m sure some others that have been using Avonex longer than myself and Sam will be along soon to give you their advice? Take care Rob.

Hi again Nicky. I’ve just had a thought. Have you had a look at this site www.msdecisions.org.uk ? My MS Nurse pointed me towards it when I was trying to decide which DMD I should start. It helped me a lot !!! Rob

Thank you both that’s a great help. Rob I did look on the ms decisions website thank you, my MS nurse pointed me in that direction and having done the questionnaire avonex came out best, I am just nervous about sticking a needle in my muscle well anywhere really, so you’re right it is a helpful website I just need to stop being a chicken and focus on the positive effects this should produce. My husband has kindly agreed to help me out to start with until I get used to it.

You’ve both made be feel a lot more comfortable about using the pen so I think I’ll ring my MS nurse and start the ball rolling.

Thank you

Nicky

Hi nicky, ive been using the avonex pen now for 19mths i chose fri eve as i still work full time i take a couple of parcetomol just before bedtime and i must say it works for me, gd luck with your decision… Tony…

Thanks Tony. I feel a bit better about the whole thing now I know you have all been ok with avonex. I haven’t been on this website for ages but I’m glad I did today, its interesting reading other posts too because you soon remember you’re not alone with this rubbish illness and people are so supportive.

Thanks again to you all, you’ve been very helpful.

Take care

Nicky

Hi Nicky, I have been on Avonex since May and only had side effects for the first two weeks, nothing major. Avonex has injector pens so it is really quick, I don’t like needles so was an issue for me but I don’t mind doing these once a week. Ruth

Here is a view from someone else who hates needles, Nicky.

I opted for Copaxone for the lower side effects, the subcutaneous injection, and the notion that a daily injetcion would be easier to build into a daily routine. There is one major downside:
To get Gilenya (oral DMD) you must have been on an interferon-based DMD first. Does not matter which one. Copaxone does not count.

So the advice is go for the one that suits you best (probably Avonex or Rebif).

Geoff

I read somewhere that if you have a history of depression interferon based dmds aren’t recommended - leaving just copaxone. Is that something any of you have come across? I’d kind of resigned myself to maybe not having a choice having had diagnoses of depression in the past.

There is a fair bit of evidence of a link between interferons and depression.

Maybe if I had not opted for Copaxone, I could be depressed - but I am not. I know I am not because I pulled my textbook on Abnormal Psychology and checked.

If I really wanted Gilenya I would probably claim a relapse or somesuch and say that the Copaxone was not working, and could I switch, and then pull the same trick a few months later. But, the Copaxone seems to work for me so why should I bother?

Geoff

Hello Sunflower, I was a bit worried about the interferons as I have had depression in the past and I also have an under active thyroid which is also mentioned but so far, my thyroid hasn’t reacted and my mood is okay (except for pre-period!!) If you have pre-existing things that are on the list I don’t think it means you absolutely can’t but that you would need to be monitored perhaps more closely? I got myself a bit worked up about my thyroid and Avonex but my Nurse wasn’t too concerned at all, I was a bit taken a back! If there is a DMD you would like, talk it through with your Nurse before discounting it as a choice. You could be fine :slight_smile: Sam x

I am on rebif. 22. So low dose. No side effects, a close friend takes avonex and she struggles each week with the injection and side effects, so I decided little and often, using the rebismart as it does is for you and can’t tell it’s a needle. V v little pain, v v simple, vv easy to use. Only side effect red marks about 5 inches wide slightly weird looking while on beach. Injection sites dont like sun either. Only prob with rebif don’t have too much to drink on jab night as I have done, ended up in bed for a few days, totally my own fault… You get a lot of support with rebif… Hope that helps Xxxx

Any thought on Copaxone which I’m due to start on in 2 weeks?

I have been injecting Rebif 44mg for ten years in August and it has helped and like other DMDs I still have paracetemol before the injection. I do have stiffness the following day but no longer have flu symptoms. The bottom line is that although I am now SPMS Rebif has helped me and I dread to think what I would have been like if it had not been available. No matter how difficult the idea of needles and self injecting once I decided that there was no alternative I just got on with it. I have never used the pen as we had to learn to use the syringe anyway and I guess I am a bit set in my ways now. Routine is important and I have not missed many injections and when I have it has been because of other illness preventing me. I can only say do the best for yourself - your like does depend on it.