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Iloprost
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OWCH !
, I'll do anything it takes to avoid another 5 days as an in patient having
iloprost
...its far too costly being hospitalized !
, I'll do anything it takes to avoid another 5 days as an in patient having
iloprost
...its far too costly being hospitalized !
TJme
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
No Medical Help!
I have a rheumatologist who tells me as I have had repeated courses of
Iloprost
with little success there is nothing else he can offer me so no point even seeing him anymore. i have in the past been treated at the Royal Free who are excellent but I seem to have lost touch.
I have a rheumatologist who tells me as I have had repeated courses of
Iloprost
with little success there is nothing else he can offer me so no point even seeing him anymore. i have in the past been treated at the Royal Free who are excellent but I seem to have lost touch.
suzy66641
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Just Diagnosed with Systemic Vasculitis
I was Diagnosed earlier this month with Systemic Vasculitis, ive been having problems since sept 2012, I suddenly got severe Raynauds, with 4 finger ulcers, freezing hands etc Eventually i got to see a Rheumatologist in Dec who admitted me straight away, for 6 hours a day for 5 days an
iloprost
infusion
I was Diagnosed earlier this month with Systemic Vasculitis, ive been having problems since sept 2012, I suddenly got severe Raynauds, with 4 finger ulcers, freezing hands etc Eventually i got to see a Rheumatologist in Dec who admitted me straight away, for 6 hours a day for 5 days an
iloprost
infusion
kate48
in
Vasculitis UK
12 years ago
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What is shelf life of Iloprost ?
Goreon
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Feeling the Cold Snap
see at an American baseball game ,, its twice the size of the left and despite taking my medication doesn't look to be thinking of getting better any time soon , the chilblains have turned to ulcers and all of my joints are a pretty black colour ....( Before anyone answers this saying go in for an
iloprost
see at an American baseball game ,, its twice the size of the left and despite taking my medication doesn't look to be thinking of getting better any time soon , the chilblains have turned to ulcers and all of my joints are a pretty black colour ....( Before anyone answers this saying go in for an
iloprost
TJme
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Does anyone have atrophie blanche - a foot ulcer condition linked to limited scleroderma? Have you had Iloprost treatment and has it worked?
JemimaDoll
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
long term effects of iloprost
was just recently at my local hospital to see the rhemy, who worried me slightly. he kept saying about the long term effects of
iloprost
. Didnt actually mention what they were though. anyone know of any adverse effects of using iloporst long term.
was just recently at my local hospital to see the rhemy, who worried me slightly. he kept saying about the long term effects of
iloprost
. Didnt actually mention what they were though. anyone know of any adverse effects of using iloporst long term.
Rp321
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Early signs of scleroderma??
I am 22 and have had Raynauds for about 18months and have the
iloprost
infusion every few months. My fingers often ache and get puffy, bit red and tight skin and also I find that after eating I quite often get reflux...it is not painful, food just comes back up.
I am 22 and have had Raynauds for about 18months and have the
iloprost
infusion every few months. My fingers often ache and get puffy, bit red and tight skin and also I find that after eating I quite often get reflux...it is not painful, food just comes back up.
Dancingc21
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
ILOPROST
Admission for
Iloprost
today - not so likely, no beds yet have to wait till after midday to see if anyone is going home - here we go again !!!
Admission for
Iloprost
today - not so likely, no beds yet have to wait till after midday to see if anyone is going home - here we go again !!!
Anteater
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Do you have Iloprost treatment?
If so, we'd love to hear about your experience. 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
If so, we'd love to hear about your experience. 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
RSA_Hannah
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
I was diagnosed with scleroderma about a year ago not sure which on I have.
I also have raynauds and had
iloprost
infusion in March but still having lots of difficulties with the cold.however my question is I am experiencing a strange sensation at night which my GP has labelled a panic attack.
I also have raynauds and had
iloprost
infusion in March but still having lots of difficulties with the cold.however my question is I am experiencing a strange sensation at night which my GP has labelled a panic attack.
queen
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
hi
Iloprost
just back from having my first session of
iloprost
at the Royal Free Hospital where the nurses doctors and all staff in ward a Pitu where amazing.
Iloprost
just back from having my first session of
iloprost
at the Royal Free Hospital where the nurses doctors and all staff in ward a Pitu where amazing.
britty
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
General rant about air conditioning !!!
Ok so the weather has been fantastic, I recently had
iloprost
so am doing really well with the old raynauds, its barely affecting me at all (if i get moments it doesnt last long and is simply an annoyance rather then fully getting in the way) thats until i try to do that almost impossible task that lots
Ok so the weather has been fantastic, I recently had
iloprost
so am doing really well with the old raynauds, its barely affecting me at all (if i get moments it doesnt last long and is simply an annoyance rather then fully getting in the way) thats until i try to do that almost impossible task that lots
Rp321
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
New to HealthUnlocked
I've had
iloprost
lots of times but after a few weeks all the problems come back again. Does anybody have any helpful hints?
I've had
iloprost
lots of times but after a few weeks all the problems come back again. Does anybody have any helpful hints?
MInerva
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Iloprost - side effects
Hi there, can anyone who has
iloprost
tell me if the side effects last just while the drug is being administered, or do you keep getting headaches/facial flushing after the 5 days period ? I have been given the oppotunity to have
iloprost
to help with my painful raynauds.
Hi there, can anyone who has
iloprost
tell me if the side effects last just while the drug is being administered, or do you keep getting headaches/facial flushing after the 5 days period ? I have been given the oppotunity to have
iloprost
to help with my painful raynauds.
rosie_girl
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
What a couple of months
I was admitted immediately and they started giving my first
Iloprost
infusions, which I was a bit scared of having read on here some of peoples horrible side effects. I was ok with it until the 4th dose, I had been moved to a different ward and I do not think the nurse knew how to mix it properly.
I was admitted immediately and they started giving my first
Iloprost
infusions, which I was a bit scared of having read on here some of peoples horrible side effects. I was ok with it until the 4th dose, I had been moved to a different ward and I do not think the nurse knew how to mix it properly.
uknlv
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Iloprost - does it help?
Hi, I have yearly
Iloprost
infusions at the begining of winter, spread over 5 days for 6 hours each day. I am never really sure it helps and have heard that some people have it just one day a month over the winter months. Just wondered what other peoples experiences were?
Hi, I have yearly
Iloprost
infusions at the begining of winter, spread over 5 days for 6 hours each day. I am never really sure it helps and have heard that some people have it just one day a month over the winter months. Just wondered what other peoples experiences were?
Steph
in
Scleroderma & Raynaud's UK (SRUK)
13 years ago
I want a moan !!!!!
No I cannot, I do not see him until September when I have
Iloprost
... He gave me the injection and off I went. Elbow, did not get any better so on Tuesday I went to see him again.
No I cannot, I do not see him until September when I have
Iloprost
... He gave me the injection and off I went. Elbow, did not get any better so on Tuesday I went to see him again.
Anteater
in
Scleroderma & Raynaud's UK (SRUK)
13 years ago
The main thing that impinges on my day-to-day living is finger ulcers. Any suggestions how to help the ulcers to heal?
I have regular
iloprost
infusions and have just started to try viagra (no sniggering) to help with circulation. Any suggestions how to help the ulcers to heal?
I have regular
iloprost
infusions and have just started to try viagra (no sniggering) to help with circulation. Any suggestions how to help the ulcers to heal?
nannysue1950
in
Scleroderma & Raynaud's UK (SRUK)
13 years ago
Hello to you all and what a great idea this is !!!
Problems with swallowing and bowel problems and I am on various medication,
Iloprost
every 6 months and because of a non healing ulcer on my fingers 7 months so far and unbelievable pain, I am taking Viagra for 6 weeks and having botox.
Problems with swallowing and bowel problems and I am on various medication,
Iloprost
every 6 months and because of a non healing ulcer on my fingers 7 months so far and unbelievable pain, I am taking Viagra for 6 weeks and having botox.
Anteater
in
Scleroderma & Raynaud's UK (SRUK)
13 years ago
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