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rebif 44

Hopefully someone can help me. I have been on Rebif 44 for 2 years now and as I have not had a relapse in this time it appears to be working. However I can not get used to the injections. As the rebismart is quite large and heavy (I only have small hands!!) I find using it cumbersome sometimes. I do my best to rotate the sites but have huge red/purple marks which in some cases are painful even after a couple of weeks. I have tried hot & cold compresses to no avail. My MS nurse's only comment when I showed him the marks was that he had seen worse. I understand the need to continue but has anyone been using the new single dose pens? Are they better? Is there any advise on self injecting generally?

Thanks

Might it be worth asking them about Avonex, Daisy?  It's pretty much the same stuff, I think, only it's a once-a-week intramuscular injection which means absolutely no site reactions.  So with luck you might get the good aspects of the Rebif without the bad ones.  I was on Avonex for ages and found it easy to use.

Alison

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I wonder if you've tried changing the settings on the rebismart? I was having terrible bruises (I counted 23 one day), but changing the settings made a big difference. I now have it set at the deepest (is it 10mm or maybe 12mm?) and at +16 seconds for the injection time. It really has helped.

 

I know what you mean about the size of the device - it's not the best for small hands that shake :-(  I struggle to hold it still with one hand and I reckon that adds to the bruising. Can you use it OK when you do your thighs and tummy? I sit down to do them so I can use both hands - much steadier. If you can do it OK with both hands, but not with one, why not just stick to the two hands' sites? You don't have to use all the options (e.g. I never do my arms).

 

If that doesn't work, have you tried asking for syringes instead? Manually injecting can be much easier than using an autoinjector (well, it was for me with Copaxone).

 

I hope you can work something out!

Karen x

Thanks for the advice.

I have changed the settings numerous times but must admit I haven't increased the speed of injection so high so will give that a go next week. It's annoying as some days there is no pain at all, which increases my confidence but that is always shortlived! The bruises are on all sites barring the stomach which only leaves small red marks, arms are worst so if they are painful I will miss them out. The Avonex sounds more suitable so will see if I can change. Don't really want to see any needles but my surgery nurse would be able to do this for me if I struggle.

Thanks again

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Hi Daisy,

I've been on Rebif since 2000. I did manual injections until last year, when I had to change to the Rebismart. I don't live in the UK and the filled injections have stopped being manufactured. (I live in Spain). This may not be the same in the UK. 

I've had huge bruises and red blotches ever since I started. The injections used to hurt a lot at the beginning, but rarely hurt now. I can still  get massive red blotches which then become bruises after. Still, it shows me where to go next time!

I get smaller marks with the Rebismart, although I did have one small ulcerated site that healed on its own. I don't even have the same options on mine.  The maximum depth is 12mm and there's no speed of delivery option. 

It doesn't really worry me - I stick to stomach, hips, back of hips and underneath of my arms. I never do my thighs as there's too much risk of chafing. I don't have huge thighs, but wear trousers and shorts all the time. On re-reading your answer, it seems as though everyone is different - just like their MS. Annoying disease that it is. 

If it's really, really bugging you, then Avonex may be the answer, as Alison suggested. I get my husband to give me B12 injections and they don't hurt as a rule. The needle is pretty long though. 

If there's any other thing you want to know, please do ask.

K

xx

 

 

Thanks for the response. It helps to know I'm not alone with this!

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