DAY 3 ILOPROST

[fairy56]

Hello everybody, day 3 finished. Managed to get to hour 4 before I got headache and upto 40ml an hour, took my paracetamol and continued on to my 6th hour! I had my cannula removed last night cos I wanted shower and wash my hair, but tonight I decided to leave the cannula in, safes the nurses trying to get it in tomorrow. 2 more days to go.

[mc_clean_david]

Your doing well. When they up the rate to 50ml you may get sore jaw & headaches but it eases very quickly after the drip has stopped. You may also get tingly feeling in your lips and even stabbing pains in your stomach or legs (or maybe thats just me!!) I got my first treatment in November and emptied the bag on day 4&5! Nurses said that I am the first person to empty bag on both days.

[fairy56 in reply to mc_clean_david]

Hi mc clean david

Thanks for your encouragement, I have been having the headaches and sore jaw all week, but today I managed to get to 50ml only for my blood pressure to play up so it had to go down to 40ml! At the end of the day the iloprost was nearly all gone, so an achievement. I am becoming quite a celebrity on the unit having had a junior doctor come and ask me questions about Ssc and Raynauds on Monday. Then today a doctor and 4 second year students visited me to do the same but they had to diagnose the Raynauds from what I had told them. Day 5 tomorrow hopefully I can get to 50ml.

[Rp321 in reply to fairy56]

Sounds like your doing great - it's my day 5 tomorrow too! Yipieeeee although I'm a light weight and don't get up to such high levels lol looking forward to getting being tied to a bed / couch type thing over and done with.