Pegasys doses: I now have to administer 45mcg... - MPN Voice

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Pegasys doses

I now have to administer 45mcg Pegasys each week and the dose needs to be taken from a phial containing 90mcg because it seems it is not possible t get 45mcg dose. I'm OK with doing the injection myself but I just cannot get the fluid into the syringe because the needle is so fine. I need to go running up to the hospital for a nurse to do it and I'm feeling pretty useless as a result.

Does anyone have an easier way to get the right amount of the drug into the syringe OR better still, if there is anywhere we could source 45mcg dose?

18 Replies
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Depends where you’re based. In the UK I get 90mcg pre-filled syringes and discard half each time I inject 45mcg - easier to empty half a syringe than half fill one perhaps?

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I suggested that but there is no mark on the 90 mcg phial for 45 and my doctor isn't happy with the guesswork.

I have an idea I'll do it anyway as you are managing.

Thank you to you both for taking the time to reply.

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I do exactly the same I have 90 mcg syringes and discard half the pre-prepared syringe so I inject 45mcg.

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Thank you. I will do that whether or not my doctor thinks I'm able. I have only done one on my own so far. I can oly get better but sure it will be easier your way round.

All the best

Penelope

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If you’re in the uk syringes should be easy to obtain. I can send you details and an image if you want.

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Thank you so much. That would be really helpful because they only seem able to get unmarked syringes except for the 90mcg.

Now I know there is one available, I'll tell them if you send me the supplier, please.

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Hi Penelope - mine are the same as Frances’, so it’s easy to measure 45mcg from the markings.

The manufacturer is Roche and details are here medicines.org.uk/emc/produc...

Good luck - Pegasys has worked very well for me.

Andy

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Would you believe, even though my specialist nurse has established that this exists and my doctor has prescribed it and requested Pegasys in a prefilled 90 mcg syringe, Lloyds are still denying its existence. I have just finished speaking to Roch directly and informed them of this. Still, I'm not likely to get it unless my doctor takes the time to insist and the Lloyds pharmacist wants to help. ATB Penelope

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That seems really strange - I’ve not heard of anything other than the pre-filled syringes in the U.K. Is the Lloyds pharmacy hospital based or high street? I get mine from the hospital pharmacy (albeit that’s now franchised out to a private sector company!) and have had no issue. Have you shown the link from my previous message to the pharmacist and/or your doctor?

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Hi Andy

Mine is from the hospital pharmacy, which is Lloyds. I have again contacted my nurse and just received an email from her saying she has sorted it. I did originally send her the link you sent and her husband actually works for Roch, so she was already aware it was available. She promises me the order has gone in and the pharmacist says they'll have it there for Friday. I'll keep you posted. It's very strange isn't it?

I visited Dr Naumann Butt in Liverpool a month ago and he told me also that 90 wasn't available because he needed it for a pregnant patient and when he inquired was told by Lloyds it wasn't available.

It's going to be some achievement on Friday if I actually get my hands on it!

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Good luck - it sounds like you might have got there in the end..! Andy

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I'll let you know on Friday!!!!!

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Hi Andy

I said I'd let you know and guess what? Success! I contacted Roche as well as my specialist nurse. they were very interested and it seems it has been Lloyds Pharmacy who is the culprit.

I collected two 90 mcg syringes on Friday and managed perfectly well getting rid of half and successfully injecting 45. I did tell Roche that they should be producing 45 mcg as well but understood why they didn't. However, it seems that Pegasys is still very effective at that level, so why not? Plenty need just 45 mcg. Let's hope.

I would never have pursued it if it hadn't been for you giving me the full details I needed. All the best and thank you for your advice. Penelope

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Great news - I’m glad it’s worked out for you in the end and hope Pegasys continues to work well - I’m still very pleased with it! 😀

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Excellent. So far so good. ATB Penelope

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Hi, the hospital pharmacy gives me a syringe with 90mcg in. It is marked 90, 65, 45 so I just have to discard until I get to the 45 mark. I'd speak to the consultant and get him to speak to the pharmacist, I've never heard of anyone having to do as you do. He could also prescribe the pre filled pen injector which some people prefer. Best wishes, Frances.

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Thank you. I will do. That makes so much more sense. I'll tell my nurse and hopefully, they'll be able to get the marked ones.

Much appreciated.

Penelope

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Oh I really wish that was a possibility. I'll stick at the 90 mcg for now and maybe approach that one later. Thanks for the info. P

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