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Iv only just found out that there are people out there that have been injecting themselves with Romplostin. i want to.

crissy22a profile image
3 Replies

I was told by my consultant that, that wasnt an option. So now I now that isn't true . I am so excited. Im going to Thailand in june and I've arranged my trip around my injections. I really want my life back and this would be the only way for me.

so if anyone has any information for me, on how they went about it , I would be very grateful.

Thanx crissy22a

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crissy22a profile image
crissy22a
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3 Replies
Robert1959 profile image
Robert1959

Chrissy

I believe that you can however I never did it for a number of reasons.

Firstly the drug is very expensive.In Australia it costs $1,000.00 per 250mcg vial and I needed 3 vials per treatment each week. If you need more than 1 vial for a dose it is tricky to transfer the drug into one large syringe for the injection. I watched the nurses do it and I was afraid I would muck it up.

Secondly the dosages are very small and are based on your weight. I weigh 90kgs so for me a Level 1 dose was 90mcg =0.18mls.A Level 5 dose was 450mcg = 0.9mls, etc. The drug is very powerful and so you do not want to get the dosage wrong. I was given too much once and my platelet count rose to 1,084,000 but I did not have any issues and they went back down again.

Lastly the hospital kept the vials refrigerated but I am not sure if this is essential.

I don't want to spoil your holiday but that was just my experience on Romiplostim.

Regards

Robert

Crissy it depends where you live as to whether you can self inject. In the UK it is usual to self inject while in the US for example, it is not. I self injected at home for three years and then got into a remission. It's a good option.

crissy22a profile image
crissy22a in reply to

Thank you so much for your help. Im in the process of speaking to my consultant about the injection. The nurses in the unit are geeat , but they don't know any information . They have told me it would be the hospital board that would be the ones who would decide because of the cost. I'm going to try any way. Wish me luck. You are soooooo lucky you went into remission. All the best crissy

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