Does anyone have elective Iloprost infusions annually? I had one last December and it worked really well....
Length of Iloprost Side Effects following infusion
I had 5 days of Iloprost 14/10 -18/10. I found it pretty tough going with the awful side effects....
I had 5 days of Iloprost infusion for the first time last week. How long is it before you usually start to feel the benefit?...
Latest Appointment at Rheumatology
Nothing much to report! The research study I took part in last year confirmed I have some/early/ wait and see Sjögren’s which is currently he...
my husband has gone in for his yearly iloprost treatment he missed last year and has been in a lot of unbearable pain....
Raynaud's, Looking for advice.
Went to see another specialist, I had been diagnosed with primary Rays about 3 years ago. The 1st specialist started to doubt his diagnosis a...
I’m 46 got 3 children living with partner woke up one morning thinking I had a splinter in my index finger after several visits to walk in ce...
Torture treatment on the NHS!!
I was admitted for a 10 day course of Iloprost 6 hour daily infusions as an inpatient....
Looking for information and support system
I got diagnosed with diffuse cutaneous scleroderma in October 2017, I'm currently on cyclophosphamide and just finished a course of iloprost....
I am due to start Iloprost Treatment in 2 weeks time. I suffer from severe Primary Raynaud's....
Raynauds Pain control
I have primary Raynauds, with several attacks daily. My rheumatologist said he isnt sure if it is or not due to lack of success with treatmen...
Hello everybody, I hope you are all as well as you can be. I have been busy this week, volunteering at our local community library on Monday ...
iloprost for scleroderma
Have been on losartan with fluoxitine, omeprazole and azathioprine but am going in tomorrow for 5 days of iloprost....
Experience of Iloprost infusion?
I got in contact with rheumatologist via his secretary and was advised the only side effects of Iloprost are headache and low BP, and there a...
Hello everybody, I hope you are all as well as you can be. A slightly less busy week, just as well because following my Iloprost I have been ...
I'm new here
Hello everyone, new on here and good to be in the company of folk with the same conditions, I’ve already read some very interesting stuff. I'...
Iloprost intravenous infusion
I am struggling with secondary Reynaud's ( undifferentiated connective tissue disease ) and my fingers/hands are swelling so badly during fla...
All new to me! Help!
I was referred to a specialist in September 2017 after experiencing some dodgy symptoms along with quite severe Raynaud's which I have had si...
Confusion after Iloprost confusion???
I completed a weeks Iloprost infusion on 16 February. This was my second admission, the first being last October....
The positive thread
With all the gloom of diagnosis and symptoms, I though it would be great to try and find some positive aspects in our new companions if at al...
Partner with us
Start a Community