ILOPROST: Hello everybody, I hope you... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hello everybody, I hope you are all as well as you can be. I have been busy this week, volunteering at our local community library on Monday morning and Tuesday afternoon. Making teas and coffees for patients on the ward at my local hospital on Tuesday morning, the latter is a reminder that there are people that have gone through their own health scares, they are mostly elderly, and some of them have interesting life stories to tell. Monday my granddaughter came after school and stayed for tea, (chicken tikka), this is not her usual tea day, its usually Thursday. Because Wednesday was day 1 of 3 of Iloprost infusion. As you know if you have had this treatment it is tiring, 6 hours of sitting in a chair, and that doesn"t count the preparation etc. Again whilst sitting having this treatment I witness other patients having all kinds of infusions, and I realise if they can go through their treatments I can endure Iloprost, it doesn"t make it any less tiring but it is humbling listening to their struggles. The down side to sitting so long is I end up with loads of additional aches and pains, and the headaches of course!! the nurses who look after me are wonderful, always there if we need anything, namely drinks, lunch and an evening meal if we want one, the latter is a great help to me because it"s the last thing I want to do when I get home, is prepare a meal. I am looking forward to a relaxing weekend, at any rate, perhaps a bit of gardening. I hope you all have a pleasant weekend, and don"t forget, smile and wave folks, smile and wave xxx

10 Replies

smile and wave to an inspirational lady take care a Fairy and I hope your treatment went well xxKathy

fairy56 in reply to babyinny

Hello babyinny, forgot that Iloprost can knock you for 6, how can sitting in a chair for 7hrs for 3 days be tiring haha, sending you hugs xxx


I hope the weather was nice and you enjoyed some light gardening.

fairy56 in reply to Hidden

Hello autumnsonnet, I am afraid light is the operative word, I mowed front and back lawns all of 20 mins, and picked a few weeds, and I felt as though I had been on a hike over a mountain, only trouble was I had to have a shower, what I want to know how can taking a shower leave me utterly breathless!!! I could barely stand, for the pain!!! So today I stayed in bed till 9 30. I think next time I have Iloprost, I shall take the next day as a rest day. I am afraid today its half a wave but still a smile, my mouth is the only thing not hurting haha.

Hi fairy56, I take my hat off to you, when are you still? At the moment life is a bit of a struggle, I think I am wearing my husband out. He tries so hard to look after me but I can see how tired he is. We are trying to prepare ourselves for the winter, clearing out the garden, this used to be a job that I enjoyed but it has proved too much for me this year. Now happy to make lists and crossing things off as we achieve them. A little praise goes a long way and we are still smiling.x

Hi Debbie, thanks for your reply, if you dont mind I shall refer you to my reply to autumnsonnet, I am still sometimes, today is one of those days, sending you hugs xxx


I hope you had a lovely ray of sunshine whilst gardening without Raynaud's flare.

Please keep us updated on the improvement in your symptoms. :)

I am with you on how can sitting (laying or sitting in my case I get a bed couch thing) for 5 days and coming home each evening and doing nothing else but going to bed to watch tv can be so so tiring!

I do not have any other autoimmune conditions I just have raynauds so I really have no excuse for being so tired but my iloprsot week really does make me tired too!

I have the weekend after as a more chilled one and will spend the next week at work just feeling (and seemingly looking) tired because when people ask if I'm ok I seem so silly answering "yes I'm fine thanks just tired from spending 5 days doing absolutely nothing!"

I know exactly what you mean. I have my every year during Xmas. I’m 5 days on the trott,6 hours sore bum. Not to mention nausea, funny tommy and problem getting a vein and head aches. Hope it gose well. I await mine sometime in December. However its worth it.

fairy56 in reply to Gumchops

Hello gumchops, a week as gone by since my Iloprost, and the side effects have passed. My next session will be in 6 months time, I used to have Iloprost once a year, (5 consecetive days) now its twice a year for 3 days. I hope your treatment goes well at Xmas, and has you say its worth it in the end, take care.

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