iloprost for scleroderma
babycatcherema month agoPOPULAR
Hi! I was diagnosed with systemic scleraderma just over a year ago following a stomach ulcer and a positive ana blood test....
Iloprost intravenous infusion
paula-moo2 months ago
I am struggling with secondary Reynaud's ( undifferentiated connective tissue disease ) and my fingers/hands are swelling so badly during fla...
Iloprost infusion as an inpatient
linda-l4 months ago
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 yea...
Infusion for Raynaud's and Erythromelalgia?
Goldyukra year ago
Saw a vascular specialist for the first time yesterday. She confirmed that I have both of these conditions and calls is vessel wall instabili...
Anyone else have Raynauds in their 30's
mc_clean_david7 months ago
I keep being told that Raynauds is very common but in older people. ( Sorry not calling u all old!!...
RECENT HOSPITAL APPOINTMENT
fairy56a year agoPOPULAR
Well what can I say, off I go for my regular \"chat\" with my rheumatologist. I come away, having been informed I need to have an iloprost in...
First day of iloprost
fairy56a year ago
First of all can I thank everybody for replying to my post, sorry I have not replied to you separately. Well the first day of iloprost is ove...
How do you manage your Digital Ulcers with Scleroderma or Raynaud's?
sclerodermauk2 months ago
How do you manage your Digital Ulcers ( sores on your fingers and toes)? Our SRUK specialist, Prof....
Hi everybody, I have my first iloprost infusion tomorrow and for the rest of the week. I don\"t know what to expect so am going with plenty t...
Lots of needles!!
fairy562 months ago
Hi everyone, I have not been on this site for ages. Well I had my flu jab 2 weeks ago, the site remained very hot and hard for a week, a ster...
Gangrene tip of index finger and thumb, any help PLEASE
Skip1310 months ago
Hi, just recently diagnosed with Limited Cutaneous Systemic Sclerosis, have been referred to the Royal Free. Have had a very negative few mon...
blooa month ago
Does anyone else suffer with a sore nose it feels like it's raw inside and constant for weeks then clears up for a while then starts again. C...
Struggling with sildenafil
Daisy232 years ago
Hi - I've been prescribed sildenafil to take alongside nifedipine for secondary Raynaud's ( I have scleroderma - LSSc - and Sjogren's syndrom...
Strange feeling in throat?
1Stellaa year ago
Hi everyone - this is my first post even though I've been in this group for about 3 years or so! Was diagnosed with LcSSc in 2012 after repea...
Anne19662 years ago
Been back to see consultant, iloprost didn't make a jot of difference, tried steroids, no help, had ct of heart & lungs, both seem ok, now go...
franky19652 years ago
hi everyone ive had raynauds for about 5years now in december last year I developed ulcers on 2 toes and since then ive gone down hill ive ha...
To start a new treatment Beliumumab
ijeasikea year ago
Hello everyone How are u all doing? As the title of my post say am about to start a new treatment on monday called beliumumab or belysta whic...
Does anyone recognise this pattern?
Jacksons_dada year ago
I am a fit 56 year old man who was diagnosed with SSc about 15 months ago but didn't really know what that meant having never been ill! Since...
Pain in elbows and knees
bloo2 years ago
Hi been diagnosed with scleroderma for last 5 years have iloprost every 4 weeks and usually manage reasonably well I work full time too but t...
Start a Community