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Iloprost
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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)
11 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
11 years ago
What is shelf life of Iloprost ?
Goreon
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
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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)
11 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)
11 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 infusion
Hi all, just got back from five days treatment of
iloprost
infusion, 5.1 mg 6 hours p/day and my raynauds is as bad as ever. my consultant told me to see if i notice any improvement over the next couple of weeks, i thought it would have been instant remedy.
Hi all, just got back from five days treatment of
iloprost
infusion, 5.1 mg 6 hours p/day and my raynauds is as bad as ever. my consultant told me to see if i notice any improvement over the next couple of weeks, i thought it would have been instant remedy.
GavinMurphy
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Anyone live in or around Buckinghamshire?
I have been having
iloprost
treatment for 6 years was annually but now every 4 months. I have a Port A Cath inplanted in my chest for access (thankful for) it keeps my finger ulcers at bay but my feet are annoying these days.
I have been having
iloprost
treatment for 6 years was annually but now every 4 months. I have a Port A Cath inplanted in my chest for access (thankful for) it keeps my finger ulcers at bay but my feet are annoying these days.
Jaime707
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Anyone in or around Buckinghamshire? I want to start or join a support group and am also on a fundraising mission.........
I have been having
iloprost
treatment for 6 years was annually but now every 4 months. I have a Port A Cath inplanted in my chest for access (thankful for) it keeps my finger ulcers at bay but my feet are annoying these days.
I have been having
iloprost
treatment for 6 years was annually but now every 4 months. I have a Port A Cath inplanted in my chest for access (thankful for) it keeps my finger ulcers at bay but my feet are annoying these days.
Jaime707
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
iloprost infusion
Going for
iloprost
infusion next week for five days i was wondering how much time, if any i would need to take off work. I do plumbing and heating and work with my hands. also do they treat you on the ward or do you get the luxury of a private room?
Going for
iloprost
infusion next week for five days i was wondering how much time, if any i would need to take off work. I do plumbing and heating and work with my hands. also do they treat you on the ward or do you get the luxury of a private room?
GavinMurphy
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Alot of people on this site seem to be infusing with iloprost. My rheumatologist has never mentioned iloprost. What symptoms does it treat?
cherylann
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
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