Scleroderma & Raynaud's UK (SRUK)

Iloprost infusion as an inpatient

I am due to go into a major London Hospital for five days of Iloprost infusion, eight hours a day. I have refused this treatment for some years, but my situation has now become critical and my Raynaud's is bad all year round.

I am very nervous as I refuse all drugs if I possibly can. What can I expect? Do I have to stay in bed? Do I wear day clothes whilst the infusion is administered? If I am expected to have the infusion whilst in a chair and I am ill, do I then go into a bed?

This probably sounds naive to most, but I am very, very nervous and would appreciate any advice.

Thank you

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Whilst I have no answers for you, I have to say that these are perfectly valid questions - the kind of things that you would ask quite naturally if you were stood in front of someone. This is a treatment that I have been offered & these are the very answers, that when the day comes for me to say yes, would really make me more comfortable to know in advance. No-body would really be able to say with certainty how the medication will effect each of us, but these small practical matters they probably can & it means that you can go in prepared & able to make an unpleasant event as confident & comfortable as possible.

I hope that it all goes OK for you & that you get the best possible results.

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Hi linda , i have been receiving rituximab infusions which is different to you as it is two infusions over two weeks . It takes 5-6 hours as i get a slow infusion and i sit in a recliner to get it . My advice would be to dress comfortably with layers as you can get too hot/cold and maybe take a small blanket and book , also drink lots of water. You can get up to the loo taking the drip with you. I hope all goes well for you and you get good results , if you have any questions im sure the rheumy nurse will be able to help . Best wishes 🌸🌸🌸

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Hi Linda, I have had Iloprost , as an inpatient and day case.Now mainly done as a day case My infusion was over 6 hours.Started on 10mls an hour .after half an hour blood pressure taken (as iloprost can drop your blood pressur). Was asked if I was feeling ok , then infusion was increased to 20 mls..Monitored every half hour infusion can be increased to a maximum of 50 mls an hour.I only ever made it to 40 mls.If I wasn't feeling to good or blood pressure dropped infusion was lowered.The first three days I was monitored every half hour.The last two days I started infusion on what it was when I finished the day before and monitored every hour.Not everyone can tolerate iloprost or can only tolerate low dosage.I carnt tolerate iloprost as well as I used to.I now only get to 20 mls an hour. Don't be afraid to tell the staff if you are feeling unwell or feel you carnt tolerate the dose so they can either stop the infusion for a while and then restart at a lower dose, or just lower the dose.

Iloprost Does or can give you a bad headache but you are given paracetamol and anti sickness tablets before infusion is started.As a day case I just sat in a recliner chair wore comfortable clothes.When I was an inpatient I stayed in my pj's. I layed on the bed as found it more comfortable ,

Good Luck hope the Iloprost helps.Take care

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I had Iloprost infusions 2 years ago when I had severe digital ulcers (2 fingertips had gone black and it was very painful) . I went as a day patient for 3 days. I wore day clothes but was on a bed or chair, whichever I preferred. As Glynis said I was given anti sickness meds to start with and told to drink lots of water, and was monitored every half hour and the dose increased. It was ok most of the time.Food was provided,( sandwiches/ cup a soup. ) I also brought tangerines which were refreshin. At the end of the first day I vomited, but I think that was partly to do with drinking lots of water too quickly.

Days 2 and 3 were OK, no more vomiting.

Wear comfortable clothes in layers as you can feel too hot/ cold. Bring magazines/iPod or something to occupy the time. I chatted to other patients some of the time; always interesting to hear their stories.

My ulcers did heal, and I have not had any since.

Best of luck.

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I have Iloprost infusions every year, as others have said I get headaches and feel nauseous, the nurses are very good and monitor you every half hour. Wear comfortable clothes, and take book iPad etc to keep you occupied. I have a recliner and a bed and have the choice of either. I go as a day patient because I like to come home to my own bed!! I find the infusions invaluable, my Raynauds is so much more manageable and my hands more flexible. It worth a few days of discomfort. Good Luck x

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I have Iloprsot regularly and as other have said wear layers as you can take cloths off if you get hot (iloprsot makes me hot). Before you get hooked up I would take my arm out of my jumper sleeve with the cannula / line in because once your attached your stuck with your jumper. I also take a blanket because it can be chilly without the arm in the jumper and obviousally there maybe a stray fan on in the bed next door.

Take lots to do, distraction is key in making the day go quicker and helps with side effects. Take chill out stuff too if your feeling a bit rough like music or films or something you can just lay and not take much effort but still provide distraction. There are medicines if you feel poorly so let the nurses know they can help.

I go to a day unit or else I would wear my pjs I love pjs so any excuse! I wear comfy not skinny jeans oh and don't forget your slippers or fluffy socks way more comfy than shoes.

You can go for a stroll around the ward / unit just take the drip stand with you. Maybe take some of your favourite snacks with you too incase you want to eat when it's not food time. My day unit has loads of biscuits but I don't really eat while on infusions.

Ask lots of questions and don't keep any worries to yourself. I was petrified my first infusions and I had no idea what was going on - my second time the nurses taught me what they were doing and I asked any questions I had now I'm a seasoned pro and not worried at all.

I can 100 percent understand your worries etc I had them too.

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Thanks so much. Everybody had been so kind. Are you checked in by a doctor, as I have many allergies?

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I think it depends which hospital. Your allergies will be put on the prescription which goes to pharmacy which is screened by the pharmacist before the drug is dispensed. But it's worth mentioning for your piece of mind too.

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I have iloprost regularly. I am admitted to a ward but with an overnight pass. I go home with the cannula. A dr will clerk you into the ward and will ask your allergies. The nurses will also ask. I too have multiple allergies and never had a problem. I am given a bed and they insist on attaching me to a cardiac monitor. I just disconnect it to go to the toilet during the infusion. I find I can tolerate the infusion better if I lie down and rest. I take an iPad,book,decaf coffee and that's about it. Dress comfortably and maybe take a blanket, I always do. If you aren't offered any pain killers and anti sickness to start with don't be afraid to ask. I can only tolerate the infusions with it so I'm just given it as the infusion starts, they will turn it down if you feel ill or your blood pressure drops too much. I go very red during the infusion and actually it is the only time I can eat ice cream! The infusions have helped me a lot so I find them worth the discomfort

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Thank you so much? That post was really helpful!

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Hi,

The first thing to say is "do not worry" there is nothing to it. The only concern you need to have is taking enough reading material, crosswords, air fix kits, knitting or whatever you can with you to combat the boardom. It's deadly tedious.

One you get there you will usually get into a bed. They will have weighed you and measured your height in order to assertain your doseage.

You will have a line put in to administer the drug through and be hooked up to a monitor with sticky pads. They turn the drip on and check your vital signs every half hour. You may feel a hot flush but that's it. If your blood pressure changes one way or the other they will increase or decrease the flow of your medication. That's it. Have a snooze, read a book, watch tv. If you need the loo you can wheel the infusion with you. At lunchtime you will get fed. With what may be questionable but that is just luck of the draw. Once they have "topped you up" you go home. No after effects, no nothing. Non event of the year. With luck your condition will start to improve after a few days and continue to do so.

You must take notice of what your rheumatologist tells you and take the medication you are prescribed. We are dealing with a vicious and crippling disease and not a cold in the nose. These doctors know what they are talking about, they trained for a long time to learn how to help you they are not magic mongers you need to understand that if they tell you you need to take a drug, have an infusion or jump up and down naked on Nelsons coulomb it is for your good not because they like talking. If you don't fight the disease it will get you so my advice would be take up the offer of every bit of help that is offered to you.

I have been suffering for getting on twenty years now and had every drug n the book. They can be unpleasant but not as unpleasant as dropping down dead. I'm currently on Cyclophosphamide which is a chemotherapy drug to reduce my white cell level. Hopefully will soon be having an infusion of Retuxima. Got to try it. I've got things to do before I go.

Good luck with it all anyway and DONT WORRY! It's a piece of cake.

Regards. Mark.

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Have also been an inpatient for this treatment...no headaches...no sickness...no anything but got a good rest from housework and black fingers!....everybody is different so have different experiences from any medical treatment so, as Mark says,[ but in my words] go with the flow girl and I wish you all the best going forward! Please let us know how you get on. x

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Hi Linda. I have Illoprost infusions every 6 months, these are done as a day patient....6 hours per day Mon thru Fri. Previous to the infusions I was suffering ulcers on fingers and toes and very painful hands particularly when defrosting my hands! I would definitely recommend the infusions and I'd just say begin on lowest dose possible while your body gets used to the drug....it can drop your blood pressure and cause headaches. The infusion unit I go to monitors me every 30 mins throughout, supplies as much water/tea/coffee as one can consume and supplies lunch. Advise is drink as much water as possible to stay hydrated. I'm booked for my next course in October....ready for winter and now wouldn't be without it. Yes it's a drug being pumped into your body but compared to the risks from digital ulcers and amputations I think it's the best way to go.

Anyway very best wishes to you whatever you decide x x

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Thank you Poppy!

I have received many positive and encouraging messages from people in the group who had good outcomes, so am now going to just grit my teeth and go for it.

I'm still concerned, but am now unafraid of speaking up if I experience any reactions to the drug.

Once again, thank you!

Linda

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You're more than welcome Linda. This is a great place for us all to share our worries and concerns and if my message as helped you to feel a little less apprehensive then I'm one happy bunny!

Take care and very best wishes x x

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I have had them and the only thing il add to everyone else's replies is not to let them rush the time as every half hour they up the rate of the drug goin in and this made me vomit first I got cramps I stomach and I told them I felt like I needed to b sick but they said it was just my veins reacting to iloprost but I knew my body and eventually I vomited into those paper kidney shaped bowls so nxt day they kept me at a lower rate and it was bit better I went in for 6 days 6 hrs a day and I cudn lie down nor cud I concentrate on reading it unfortunately made no difference to my raynaurds and I wud not go for this treatment again but I know that it had helped others but not me I was in a recliner nxt to a lady who was on her 9th time and she had 10 days of treatment and her rate of iv infusions were at s higher rate than me because she had got it done so many times.. I wish u luck and hope it works for u you will understand all of our replies when uv had ur first day of it but don't worry just take it hr by hr and day at a time and drink but only small amounts not too quickly as nurses said that's why I was sick good luck and don't be afraid xx

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Hi Linda I am Britty I had infusions from 2011 after a hysterectomy. I found they did help me but only for a short time. I used to have good veins but last few times I had to have midline inserted to infuse the illoprost. I met lots of people some like me others with scleroderma etc. We were all there for the same reason. For many years when the infusion worked I did benefit from it. But sadly the last two times I had two bad reactions and it was decided that it was no longer safe for me to have anymore sadly. It would not have been so bad if it had been after the first hour on high dose but it was about half hour from start on low dose suddenly I could no longer tolerate it. I was gutted as I felt like how will I cope!Now as time went on I was off work almost all of last year. In November, after 11 years working in a supermarket it was mutually decided that I was going to be paid of on grounds of capability. Have been unemployed since then. My fellow friends are still getting their infusions . We made a name for us all the PITU ladies. Everyone is different and has different reactions.

My raynauds and Erythromelagia became worse after a hysterectomy in 2011. I also have venos leiden factor v and struggled with early menopause for over 6 years now. With this condition I struggle with the hot and cold but both can be extreme and painful. I wish you all well and don't be scared the nurses and doctors are properly trained to infuse and monitor you during infusions. hope it works for you. I attended the Royal Free hospital in Hampstead Heath, all the staff there were friendly and approachable. As were the staff in the premier Inn as I stayed mon to Friday at the hotel to rest and recover as I came from Essex.

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