Iv only just found out that there are... - ITP Support Assoc...

ITP Support Association

4,126 members2,101 posts

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

Written by
crissy22a profile image
crissy22a
To view profiles and participate in discussions please or .
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

Not what you're looking for?

You may also like...

Help just found out I have low platelets

I have only just found this site as I have just been told I have low platelets between 33-44 at...
Lynwoodley profile image

Is it safe to just take Promacta 50mg every other day since my platelets are high and I don't have a lower dose.

Hi All, I am at 311,000 platelets on 50mg promacta since 11/23 before that on 75mg Promacta. I am...
CDmom profile image

ITP Symptoms & Homeopathy Ayurvedic Meds

Does anyone else see that their platelets drop every time they are fighting a virus or cold? My...
bebtaz profile image

MMF and chicken pox

Hi, I am off prednisolone for 4 months and on MMF for 6 months. I have also had splenectomy 10...
lc12345 profile image

Moderation team

AnthonyHeard profile image
AnthonyHeardAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.