iloprost appointment

Hi everybody, I have my first iloprost infusion tomorrow and for the rest of the week. I don"t know what to expect so am going with plenty to read, taking my tablet to play games on!! Heres hoping it works. it is going to be long days, and expensive car parking at the hospital, (no special arrangement for cheaper fees unfortunately) but I am going to ask them again!!! I have been reading other posts, and am experiencing tiredness in the afternoons and can quite easily fall asleep, making sure I set an alarm because I have to pick up my granddaughter after school. I am also experiencing aches and pains ankles, hands, neck, hips and shoulders, sounds like that song. I have also noticed a very hard lump on both my big toes, feels like a bone is trying to break through!!! Oh the joys of Ssc and Raynauds, it is certainly an interesting condition.

9 Replies

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  • Good luck,

    There's lots of ppl here who've had it. I'm unfortunately not a candidate for it, so the joys of SSc and Raynauds have to be dealt with by positivity and a few meds lol!

  • Good luck, I have them every year I find them very beneficial. Again everybody reacts differently when being infused, I find that when I'm on a high dose, they put it up in stages, I experience bad headaches. But the nurses are great, they check your obs every half hour!!! So not much of a chance for any naps😴😴. As for your toes I have the same but on the toes next to the big toes!!! As I'm sure you will agree something different all the time, atleast we don't get bored. Hope all goes well.

  • I had iloprost infusions when I was first diagnosed with systemic sclerosis and Myositis a couple of years ago.

    It seemed very busy with all the monitoring checks, but take something to do. You may find that you feel absolutely drained after a session and for a few days afterwards but then you may start to feel a bit better. I have bumps on my toes too, problem getting comfy shoes. Whether you stay on iloprost or go onto something else, it is a good starting point.

    Good luck, hope you don't get too tired

  • Hi Mew53

    Try Hotter shoes they are so comfy!! Don't come cheap but worth every penny, and they last.

  • Thanks Jayne0 for the info on Hotter shoes. I have already tried them, it was embarrassing one day when I want in, I must have tried 20 different shoes on, but couldn't quite get the right ones, they ere lovely shoes. I ended up with a Gabor pair, very pricey £90 but fitted like a dream. I wear my UGG boots as long as I can, cos they have thick soles, they buffer my feet.

    As you say you have to pay the price!

    Thanks again

  • My shoe size is now 7EEE fitting & ever Hotter shoes don't fit me. I would suggest you google 'EEE fit shoes' & see what comes up. We all have enough pain to deal with so uncomfortable shoes adds insult to injury! As my feet are now completely rigid I can no longer wear heels so choice is very limited but it's worth some research to be comfortable. I wish you luck with your search x

  • It's so bad about hospital parking, it's not fair patients should have to pay! Which hospital are you going to? I am also having iloprsot next week, got my bag all packed with things to do as the days do drag a lot I find!

  • I have iloprost every three or four months, although I can now only tolerate a low dose , I do find it beneficial, but everyone is different. Does your hospital do a weekly car park ticket, the hospital I attend does and it works out a bit cheaper.Also get your Specialist nurse or Rheumatology specialist to revere you to the podiatry clinic, or to appliance department for shoes.

    Good luck hope all goes well for you .

  • I had 5 days iloprost last year, I tolerated it well with no side effects and got up to the full dose for my weight (big!). I didn't find the benefits lasted very well though, although I felt it at first, and was put on sildenafil instead which seems to work better for me - I work out of doors.

    Day 1 I managed to use public transport most of the way as I was not sure how I would feel about driving back, but although it took nearly 2 hrs (20 miles) fortunately I was OK so decided to drive the next day. After day 1 I realised there was some off site parking on the road which was free so with it being a relatively early start (8am) I got there before all the places were taken and parked free the rest of the week

    I am also an enormous fan of Hotter shoes, although not cheap they last for years and as I have wide feet are extremely comfortable. They have a fantastic range of styles now, 10 years ago they were rather staid and frumpy (and I'm no fashionita!)

    I have a bony growth on top of my left foot which I think is just that - bone, other smaller lumps on my knees usually end up being calcinosis.

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