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Scleroderma & Raynaud's UK (SRUK)
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iloprost for scleroderma

Hi!

I was diagnosed with systemic scleraderma just over a year ago following a stomach ulcer and a positive ana blood test.

Have been on losartan with fluoxitine, omeprazole and azathioprine but am going in tomorrow for 5 days of iloprost. Bit nervous and somewhat dubious after reading some posts but have definately noticed since the cold weather my hands and feet are worsening :o(

Any hints or tips? My consultant suggested coke for the headaches anything else?

Thanks!

41 Replies
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Iloprost dilates your blood vessels allowing healing blood to reach further parts. The blood vessels in your head dilate as well giving you a possible headache and making you feel tired or grogy. Let yourself rest or read. It is not a cure but a help.

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Take lots of things to do it's really long and boring. iPad, iPod, portable DVD player, headphone, word search, magasigns etc etc keeping distracted also helps with keeping the side effects at bay sometimes if not it's a good way to pass the time if you feel a bit icky.

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Hi, I have just finished 5 days of Iloprost, it is tiring, but worthwhile. Good luck and I am sure you will see the benefits.

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Thanks!

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Hi. I was diagnosed with Systemic Sclerosis about 18 months ago. I have had Raynaud's for at least 20 years but the last couple of years it has worsened. It is now unbearable and I when I saw my Rheumatologist yesterday she suggested I had Iloprost. I have many other health conditions and have to be careful what I have as I take quite a lot of medications and I react to strong medication.

I recently tried Sildenafil but after taking just one tablet my Husband had to ring 999 and I was taken to hospital to be monitored until it wore off.

I am not sure about having Iloprost although I would like to try it and see if it can help me. She said I would have to have it for 6 hours a day for 3 days. Do you sit or lie down during treatment?

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hi day 2 now.. 6 hours of illoprost a day first day only got up to 2.5ml/hr today managed 3.5ml/hr stayed in bed whilst it was going through and had a bad headache and felt rubbish for about an hour after but now feel fine hopefully it'll work :o)

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I find if I sit up in the bed rather than lie down the headache isn't as bad.

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I started day 1 at 1.2ml/hr, then it was to 2.4ml/hr, then 3.6ml/hr. I couldn't tolerate that for long and they had to drop it to 3.00ml/hr and finally back down to 1.2ml/hr.

Day 2 I started at 1.2ml/hr, then 2.4ml/hr then 3.6ml/hr. Yet again I had to have it reduced to 2.6ml/hr, and then I had to ask them to turn it off for a while. It was restarted 2.00ml/hr then raised to 2.5ml.hr.

Day 3 I started at 1.2ml/hr, then 2.4ml/hr, then 2.8ml/hr, then back to 2.00ml/hr.

I found that 2.00ml/hr was just about bearable and anything above was too much.

The chart they had set out for me was to get to 4.8ml/hr but I never reached it.

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I have phoned the Rheumatologists secretary today and asked her to put me forward for the iloprost infusion. Has anyone any idea how long I am likely to have to wait.

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I imagine it depends which hospital. is it a local hospital or a big London type one maybe the waiting time will be shorter for a district general

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It would be our local hospital, so hopefully not too long a wait.

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I had a phone call this morning to book my Iloprost infusion. It will be Monday, Tuesday and Wednesday of next week. Got to be there at 7.30am each day and will have it for 6 hours a day. I asked if I would be able to lie down as I have so many other health problems and she said yes I would.

I am not sure I am doing the right thing but will have to see how it goes. Waiting for the letter to tell me what to do beforehand and which tablets I am allowed to take and which I should stop for that 3 days.

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7:30am feels pretty harsh ! Poor you ! I have to be in at 10 on Monday and 9 every other day - I'm also having iloprsot next week.

Hope all goes well for you !

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I hope it goes well for you next week. Is this the first time for you too? I wish I didn't have to be there so early especially as I have to go a distance to this hospital and actually pass our local hospital on the way.

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That's really annoying having to pass a more local one - the hospital in my town doesn't do iloprost either it's a tiny one that does day surgery etc but mine is about 20 mins away without traffic and an hour in rush hour time (the exact time I go and come back).

I have been having iloprost for 8 years in January I have lost count how many I have done. I am very very used to it all now and know all the tricks like taking my fluffy socks to put on, slippers to walk to the bathroom and bringing my fluffy blanket because it's cold at my day unit. Alsoplanning lots of things to pass the time like films etc.

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I was told I would get a letter telling me what I need to do before hand in preparation for Monday but the letter has not arrived and I will be already out on Monday before the post comes. I have tried to ring them, the switchboard keep putting me through to the department but no one is answering. Is there anything I need to do or do I just turn up?. They have told me not to take 2 of my tablets that day when they rang to arrange the days and time but I just want to know if I should do anything else.

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Just make sure you don't take the meds they said not to take. Apart from that not really, I always make sure I have breakfast as I don't really eat for the day. Bring a list of your currents meds and contact details for your next of kin. You don't really need to do anything else. Just make sure you bring enough entertainment and anything you may need i.e. Phone charger, fluffy socks that sort of thing.

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Thank you Rp321 that is very helpful. I am still recovering from a hip replacement I had in April that had complications, it came out twice and I had 3 operations in the first four days. I now have tendonitis and the recovery is very slow. I hope I can lie down and be comfortable.

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Just thinking about you and wondering how you got on with your treatment. I didn't do too well, but I do feel it has helped me. They kept turning it up and I couldn't tolerate it so I had to ask them to turn it down and one time I had to have it stopped for a while.

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I know someone who had 3 days of iloprost intravenously last Winter. She had no side effects or headaches. It went well and stabilised her condition. It is likely to be repeated this Winter.

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Well that was quite an experience. I didn't tolerate it very well and had to ask them to turn off the infusion at one stage.

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Sorry it didn't go well. I've asked to have the infusion as my raynauds is awful ATM

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Have you had Iloprost before or this your first time?

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A few years ago but I didn’t feel it made much difference - desperate now and will try anything

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Hi Winfield 1, just wondered if you have heard anything about getting your infusion yet?

I think mine has started to have an effect as I seem to be getting less attacks recently.

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No, just waiting - was told it would be January - as a 3day inpatient

Really pleased that the infusion is helping your Raynauds - my feet are terrible this year - I never had issues with Raynauds and my feet until about 4 years ago - I've now started with chilblains - ouch!!! :(

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Hopefully it won't be long to wait then.

I used to get a lot of chilblains but not had so many the last couple of years. Although the Raynaud's in my feet and hands has got much worse.

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I was at that stage that I was prepared to try anything. I have felt a slight difference already and didn't really get that much Iloprost.

Do you remember anything about the level you had when you had it last? I would like to compare the amount I had with someone.

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So I do it according to my weight and my max rate is 2.0ml per hour. In total all day I get about 11.3 ml. interesting I used to have to turn it down however strangely and in a good way I can tolerate it better now I just need ondansatron, metacloprimide and donperidone sometimes.

I used a different protocol where they turn it up until you can't bear it any longer and that finished me off as they did it a ml every 30 mins. I 100% can not tolerate 3ml per hour which is where I would have to have it turned off for a while and really low the rest of the day.

Sorry long old message but the moral is for me slowly means not turning it down or off.

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Rp321 that sounds very sensible to me. Having it on a level you can tolerate for the whole day means you actually get more in the long run.

Did you see my earlier post with all the levels they set mine at?

I was in a recliner chair for the treatment but there was also a bed if I wanted to lie down.

I had severe headaches, my jaw ached and I had chest and back pain. On day 2 I also had pains in my legs. I had to have a sickness drug too.

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I can't find the post ☹️ Which rates were you on ? Were they going by your weight ?

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I started day 1 at 1.2ml/hr, then it was to 2.4ml/hr, then 3.6ml/hr. I couldn't tolerate that for long and they had to drop it to 3.00ml/hr and finally back down to 1.2ml/hr.

Day 2 I started at 1.2ml/hr, then 2.4ml/hr then 3.6ml/hr. Yet again I had to have it reduced to 2.6ml/hr, and then I had to ask them to turn it off for a while. It was restarted 2.00ml/hr then raised to 2.5ml.hr.

Day 3 I started at 1.2ml/hr, then 2.4ml/hr, then 2.8ml/hr, then back to 2.00ml/hr.

I found that 2.00ml/hr was just about bearable and anything above was too much.

The chart they had set out for me was to get to 4.8ml/hr but I never reached it.

They didn't weigh me so I don't know.

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Wow 4.8ml per hour would be pretty hearty I think. I'm not really very built so maybe that has a bearing on my rate max being 2.0ml. But if they didn't weigh you then how would they know what yours should be. I think this is really interesting how the same drug is given differently at different hospitals.

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I know, I was in agony at 3.6ml so I hate to think what 4.8ml would have done to me. Before It started they told me I was in for a rough ride and that they did not do many Iloprost infusions there. Apparently it is tolerated much better by men than women.

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Rp321

How are you doing now, has it made a difference to you since your infusions?

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Hi I feel all back to normal now - felt a bit rubbish during the week but now I'm all ok and yes the iloprsot has helped a lot :)

How about you ? See any difference yet ?

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Rp321. I have found a little difference indoors. I would get white and painful hands and feet just walking from room to room with a slight change in temperature or just touching a plate or knives and forks, that has improved. I went out to the shop yesterday and wasn't out long but my hands were excruciating and I was unable to use them.

I am wondering if it will improve in time as the leaflet said it can take a few weeks to work properly.

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I do still have to be extreamly careful with my clothing etc it doesn't stop it happening but what it does for me is mean that all the extra layers and special gloves etc work. Without the iloprsot no amount of clothing or gloves help and I'm totally stuck with it.

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I have tried all sorts of gloves and nothing helps. I have bought one from Raynaud's Society and tried 2 pairs at once and mittens but nothing has any effect at all.

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So I have the silver ones from the rsa shop and then I also have top of the range ski mittens. I went to a ski shop and said I needed some of their best ski mittens - awkward conversation about where I was going skiing then followed 😂 They were not cheap at all I think just over £100 but I literally wear them everyday from oct - march and then I wear 'normal wooly' mittens after. It's the ski mittens rather than normal ones that help because no air or anything gets in unlike the woolly type that let the wind in I'm sure.

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I was given some Thrumming Mittens for Christmas this year and I think they are going to help my Raynaud's. They are a bit bulky and awkward but I will persevere to get used to them.

I have tried the Silver ones from the RSA shop but they have no effect for me.

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