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inkedup

To have Iloprost or not....

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I have had it a few times, and it is time to have it again. It does help my Raynaud's. I am just put off by staying in hospital, not sleeping, not keeping cannulas in etc. I know I'm moaning a bit, but what are other people's thoughts who have it?

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Hi Inkedup,

 

Obviously only you can decide whether you consider it worth having Iloprost infusions again to improve your Raynaud's symptoms and as I've never had this medication I can't give you any advice from my personal experience.

 

However, there's a link to Iloprost for the treatment of systemic sclerosis which may give you more information and there are two Iloprost threads here and here as well where some of our members have given lots of helpful advice and their first hand experiences of it.

 

Kind regards,


Jo Frowde

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Hello Inkedup

 

I am not the person to ask about Iloprost because I had it in October 2007 and NEVER again. Mind you my Raynaud's is mild so I have the luxury of deciding against it. I had it 6 hours a day over 5 days and despite anti sickness drugs and pain management prescribing medication it was awful. The fact that I had incompetent nursing that resulted in a formal complaint didn't help either!

 

Don't forget to ask for a sleeping tablet at night when you are in hospital, I alway do whenever I have been in and of course take ear plugs with you, silicone ones are best but failing that wax ones.

 

Take care.


Amanda Thorpe

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I have had it once, 10hours a day over 5 days. Had issues with getting the cannula in & was also quite sick & had violent headaches even with the meds they give you but it didn't help for very long (about 3 weeks) so decided it wasn't worth it for me even though for a few weeks I really did feel much warmer & didn't have many Raynaud's attacks. I never sleep while in hospital but do use ear plugs now & that really helps!

For my Raynaud's I take liquid Prozac which has helped to cut down the length of attacks & the number of them.

 

Buttons

 

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Hi

 

Iloprost is a life line for me at times and I find it helps a lot. Yes there are side effects but I have learnt the best way they can be managed for me. My 'cocktail' is pain medication phosphate and paracetamol for the headaches and ondansetron for the sickness all prescribed by the medics. Where I am treated I go home after treatment with my cannula in place, ready for the next day. I have five days of treatment at a time. When I way up the pros and cons of the treatment iloprost always seems to win.

 

I have not been able to get on with Prozac even though I have tried it more than once. Prozac goes had and hand with insomnia even when I have tried taking it a different times of the day.

 

I am sure there will be others who have had treatment for the side effects of iloprost.

 

Only you can decide like a Shakespeare quote to be or not to be or in this case to have or to have not.

 

Night Owl

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Thanks, I guess sometimes you just need everyone else's point of view. I was going to have it due to some sore calcinosis on my thumb, but am feeling a bit unconfident having moved from Bristol to West Yorkshire. I dont have Scleroderma terribly badly and know that other people have it a lot worse than me, although sometimes I wonder if when you have something for so long, you just don't notice as you're so used to it!

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Ah, what a wonderful theory, to have it so long you don't notice! Like you say, you get used to it and ain't it amazing what we can normalise?

 

Take care.


Amanda Thorpe

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Hi

 

That is a move Bristol to West Yorkshire.

 

From previous posts yes, I have had Iloprost many times and the years do blur into one. I think you are right; I have had this for more years than I have not and I was asked recently how it affects me. I found it difficult to answer as I know my limitations and how to cope but I cannot remember a time when I did not have them. I have no comparison from the norm to make anymore.

 

I have been treated at many different centres over the years and it is difficult to change where you are treated but you always have the option to be referred elsewhere. It's like taking a first step .................

 

Night Owl

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Hi Inkedup, I live in West Yorkshire and get my treatment from the Connective Tissues specialists at Chapel Allerton Hospital. For me they have been wonderful, and I recently was an inpatient and had my first Iloprost treatments. Whilst I was in Chapel A they went really well; due to complications caused by a blood clot I had to be moved to St James Hospital and continue my Iloprost treatment there. Like Amanda I think I had an incompetent Nurse do it and I got very ill from it, headache and nausea. They were unsure how to mix it and I said they should call the Ward at Chapel A as they do it every day probably millions of times. But they said they looked it up on the internet and she was sure it was fine. It wasn't. I got my treatment due to some necrotic toes (they turned black) it helped with that quite a bit. I also have fairly bad Raynaud's and at the bottom of my finger nails it swells up and gets quite painful. It helped with this but it hasn't really lasted very long, I am getting the swelling back and it has only been a couple of weeks since my infusion. So I think I would have to really think hard about whether I want to go through it again. Best of luck with whatever you decide!

 

Jean

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Thanks Jean, I've heard good things about Rheumatology at Leeds. Am very unconfident about my care in Halifax, not helped that my rheumatologist has missed me having quite bad hypothyroidism and that the PBC I have is showing signs of stirring. She just didn't have my previous blood tests and I've had to go quite a long time feeling poorly. I'm glad I didn't have the iloprost there now.

Sorry to hear you've had such an awful time, it does put my stuff into perspective - hope you are on the mend (as much as you can be with Scleroderma!)

 

Best Wishes

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Hello Jean

 

Sorry about the poorly administered Iloprost, it makes such a difference to the entire treatment experience.

 

Hello Inkedup

 

Sorry about having problems with your rheumatologist, I have just found out I have ferropenic anemia (anemia caused by not eating) that has just been picked up in a recent hospital blood test and I think that my general practitioner should have picked this up months ago when I first told her I wasn't eating. I actually said to my husband I could have felt better months ago if it had been found earlier...that's assuming the iron supplement will make me feel better of course.

 

Take care ladies.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hi

 

My rheumatologist gives Flolan (epoprostenol sodium) instead of Iloprost; I received some of this in February. The dose is over three days, six hours per day. The side effects are supposed to be less with Flolan. I must say it was my first time, headache not too bad but didn't manage the full dosage - just one down. The nurses gave it in increments and as they increase the dose I started to feel a little funny but only enough to stop reading and lay back with a blanket over me. The funniest thing was a sort of 'lock jaw' I couldn't eat until about an hour after the treatment, but fluids, rice pudding and soup were OK.

 

I think it has helped as a digital ulcer I had had for two or three years has finally decided to heal, I'm thinking of having it again before the winter.

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Hello Tina

 

Good to know about the Flolan, I have only come across one other person having it but she had pulmonary hypertension and that's why they gave it to her. I thought that was what Flolan was for rather than Raynaud's/ulcers but as you say it works. Flolan is a vasodilator so you would expect it to help with ulcers.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I also have Pulmonary Hypertension, perhaps that's why they gave it to me instead of Iloprost.

 

Tina

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Hello Tina

 

That would make sense, kill two birds with one stone. I hope it helps with the pulmonary hypertension as well.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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