In particular we are interested to hear if you have had any difficulties in receiving the infusions, any changes to your scheduled treatment or if it has been stopped by your doctor.
Any general comments can be left below, or if you want to go into a bit more detail please email me at hannah@raynauds.org.uk
Please avoid naming any specific hospitals or doctors (in an email is fine).
Thanks!
Fingers crossed the weather will improve soon- think I've forgotten what the sun looks like...
Hannah
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RSA_Hannah
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There have been so many changes at the hospital I attend and been on so many different wards.
There was a ward set up for Iloprost patients which was open 5 days a week Monday-Friday where you had your date and a bed would definately be available, which it was. There, if you were able you had a bed for the treatment then stayed in a hotel overnight and came back the next day. Then A & E got wind of the empty beds over night and at weekends so if you didnt stay in your bed overnight there would be no guarantee that it would be there for you next day. This would be the same for Mondays as A & E would grab the empty beds over the weekend, guess what, we had to wait until they discharged the patient or transfered them to another ward.
After this some bright spark thought of these wonderful chairs we could sit in for 6 - 12 hours a day for treatment. I had half a day of this and it was the most uncomfortable, backbreaking experience I have had and there was no privacy at all.
They still had beds on the ward then plus a room full of these chairs which were not only used by Iloprost patients but others coming in for an hour or two for other intravenous treatments.
After that Half day I was given a bed and could not wait to lay down - I also suffer with severe migraines and eventually had to be put on it continous for 5 days at a very low rate.
After a while, they changed the whole of this ward back to a Monday to Friday
and now only have the chairs - how people cope with them I dont know - and they stay over a hotel at night.
For others who require to have it continous or because they have problems with getting dresssed etc we have been transfered to another ward - you do still get a date and an allocated bed but because the ward is usually full all the time with other patients, who may have to sit there all day waiting for a bed or get told that there is no bed available and to come back next day.
This is ok but when you have to travel for 2 hours or more to get to the hospital and in desparate need of ILOPROST it is no joke.
I think the care on the ward we attend now has changed a lot - and dont seem to have much knowledge about our conditions.
Ive had Iloprost twice and NEVER again !!! the side effects for me were horrendous !! My head felt as though it was going to explode, as though it was too tight !! accompanied with the most severe migraine headache. I had to wear sunglasses and have the lights off so I was put in a side room. All of the medical staff were lovely and the whole process was very well organised but NEVER again !!
I too am affected by the lights etc and wear sunglasses, eye mask and try to keep the lights off - for some reason they need them on even when its bright daylight!!! I know what you mean about the side effects of Iloprost but having it at a slower rate does help a little although I still get the migraines. Lets hope the sun shines more and more - we live in hope xx
Yes I have Iloprost. I used to have it at a regional centre here in the North, but they never seemed to have any beds. I had to phone up every morning when I was due for treatment until a bed was available, this often took a couple of weeks. When a bed became available I had to get there for 10.00, it was an hours journey in the car. I would then sit for 3 or 4 hours until the treatment was started. I was told that they couldn't order it from pharmacy until I was on the ward. I also had to wait for them to get a Doctor to put the cannula in.
It was suggested that perhaps I could have it done at my local hospital, all the rheumatologist in the area seem to know each other. I started at the local hospital in September and have had 9 monthly 6 hour sessions, I am now having a 3 month break and have an appointment to start again in September.
I go on to a ward that just does infusions/transfusions. It is run by a wonderful team of nurses and as everyone who comes in needs a cannula they are well practiced at inserting them. I suspect most Scleroderma patients are difficult to cannulate. I do not get a bed, just a large rather uncomfy chair, but it is only for 6 hours. It starts at 1ml per hour, is then increased to 2ml after half an hour and then to 2.5ml which is my maximum, I am not meant to go above 3ml as I am a bit of a feather weight. At 2.5ml I usually feel pretty grim - band type
headache, sickness and always restless legs. But within half an hour after finishing treatment I am well enough to go home, if somewhat exhausted. I am always given my next appointment before I leave the ward, no need to phone up to check.
It is not a pleasant treatment and I do have doubts about its effectiveness, but I am assured that it works and that I need it. I still have all my fingers and toes!
I have had a few treatments of Illoprost, when I was initially diagnosed I had it twice within a year but I am now on a pre winter session usually in October or November and
I think it does help with the coping of the bad weather but like everyone else I hate the procedure but keep thinking is it so unpleasant that it must be doing some good.
The last time I went the heating was broken on the ward and because we all suffered from Reynauds we felt cold (the heating had been an ongoing problem in previous weeks) Also because of changes within the NHS we were amalgamated with another ward I felt we became second class citizens due I think to total lack of understanding the schlerderma. We sit on chairs and like most patients I cope for the 6 hours and I now ensure I always have food, blanket, gloves. sunglasses, paracetamol etc etc. so I am prepared for all eventualities. Previously we could make ourselves a hot drink in the kitchen but now healthy and safety issues has discontinued this so we are dependant on the nurses to find time to make us a drink I may organise myself a flask to take in this coming October. Sometimes due to staff work load pressure our obs were not taken on time as per the designated time schedule
Like most patients there is an unwillingness to complain but I did complain on behalf of our group, I did not go down official channels but just wanted those in charge of the ward to realise that being cold was a major issue for us. As a result during the last couple of days we got portable heaters,hot drinks, obs taken on time etc. etc.but I have since spoken to someone who has to have more frequent treatments and I understand the heating was still not working as they still could not get the spare part.
My husband died 4 years ago after having had a severe stroke, without going into detail it is enough to say my experience of his being hospitalised was why I became spoke person on the Iloprost ward.
I have had a number of infusions over the years. When I first started, many years ago, I used to have it at 5ml over 6 hours or so. I thought I was dying. I used to cry with pain because of the headaches. I now go to a different hospital (Chapel Allerton in Leeds) where I keep it at 1ml over 3 days continuously. This way I can cope with just paracetamol, and although the most difficult part is finding a vein and then the canula not tissuing, I much prefer to have it this way.The staff are wonderful.
I have had Iloprost treatments several times for severe raynauds when small lesions had not healed and obviously the finger was beginning to die.
My iloprost treatments were for three consecutive days for 6hrs per day (give or take with titration on day one). Several times I was an inpatient when I've required antibiotics as the same time. On other occasions, I have had this treatment in the chemo ward, where staff were well experienced with canulars and all very positive. This did mean however, sitting for the whole day in a recliner chair. The drug itself, caused me to be naseous and gave me headaches which left soon after the infusion was over for the day. Going back each day was therefore not a nice thought.
The drug was not the most effective for me. It did halt further progression of the finger dying, however, it was not powerful enough to open the circulation to the finger tips already affected. Necrosis had set in and the finger tips have auto-amputated as a result ( a slow and painful process). I have since had preventative treatments of prostaglandin via picc for 72hrs. These and other tablets have helped to manage my condition over Winter.
I have had this done just once, it was done over 10 hours for 5 days. I had dreadful problems with the putting in of the canula and then it tissuing out, so ended up with some swelling & bruising. I felt very sick even after taking anti sickness tablets & I suffered with a bad band like headache & just wanted to lie down, thankfully I did have a bed on the rheumatology ward & the staff where very understanding. It seemed to have a fairly immediate affect but this only lasted for just 3 weeks so I didn't get any real long term benefit so have not had it done since. I now take 5ml of liquid prozac a day & that seems to help along with keeping warm with many layers.
I have Scleroderma and Raynauds. I have been having Iloprost infusions for about 12 years. I used to have them 6 hours a day for 5 days as a hospital in-patient. Now I have them 12 hours a day for 5 days. Nowadays I am on a dose of 1.3 per hour as I cannot seem to tolerate the higher dose that I used to have. Yes, I get a headache and feel a bit nauseous but these symptoms can be controlled by taking paracetamol and cyclizine before the infusion begins. My real problem is that I'm never sure there is going to be a bed for me. The appointments clerk is very helpful and between us we arrange a day for admission but then on the day I have to phone that morning to make sure there is a bed. Usually they can't tell me on the first phone call and so I have to wait until later in the day to find out whether I'm to be admitted or not. I work part time and my employers are very sympathetic but it does cause disruption to my co-workers as shifts have to be re-organised. Sometimes instead of going in on Monday they reschedule for Tuesday but also sometimes I'm told to try again next Monday and we go through the whole rigmarole again. Also, I agree that the nursing staff are not that familiar with Iloprost and they seem to panic when my blood pressure drops (although this is what Iloprost does) and then they reduce the dose I'm having (which is low anyway) and sometimes I wonder if the amount I'm receiving is really worth all the bother. Having said this, I do usually feel a bit better after Iloprost - whether it is all in the mind or what I don't know but I do feel that it is helping. I too have tried receiving the infusions while sitting in a chair and I don't wish to repeat the experience. Nowadays I receive the infusions during the night and, although this means that my sleep is disturbed by the nurses taking my BP etc, this enables me to be free during the day.
I have been having Iloprost for several years. I have 3 pre-planned treatments in the winter months of 5 days each and since my bed is booked in advance, I have had no problems. However, this winter I developed very severe Raynaud's and have had to go in twice as an emergency and then I have had problems accessing a bed.
The staff on the Planned Short Stay unit are brilliant and have got to know me well. Although I only weigh five and a half stone, I do manage to reach 5ml an hour with only backache and headache.
The Iloprost heals all the ulcers and tissue under the necrosis but as with some of you, the effects only last about 2 weeks and then the ulcers start to reform.
My consultant is very good and if I have any problems, I can access her easily via my lupus nurse.
hi, I to have the lloprost treatment, now twice a year and all the problems with the hospital although the staff are so good and understanding. The worst for me is the headache. This is my 12 th year.The thing that I suffer with the most is diverticulitis that just comes on when it feel like it and leaves me in pain for hours on end. thanks for letting me share your thoughts. stevefull2
I have had at least 20 courses of iloprost probably a lot more over the past 12 years. The mail problem I have is that my blood pressure drops suddenly and severely meaning the infusion has to be stopped and restarted.
The headaches and muscle pain are awful but I am told this is the side effect of the treatment so I put up with it and try to walk for an hour after each treatment which clears the stuff out of my system. To be fair it did a little for me at the start but now I suffer all that for no benefits so after careful consideration have decided not to have any more infusions
I had my first treatment about a month ago. It was a three day treatment and really worked. I had a bed and the staff let me keep as much in the dark as possible. I should be having these every three months for three days at a time. It is continuous, so I cannot leave at night which is the only downside as I have two small children. Other than that, no complaints. Really happy to regain some of my life!
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Lets hope the sun shines more and more - we live in hope xx
Heated gloves - research and pilot testing
ILOPROST
Iloprost
