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Iloprost
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Don't think my thermostat is working!!!
In January I was in hospital for
iloprost
infusion for raynauds and the nurse would do obs every hour and I noticed my body temperature was always around 36 so quite lower that normal I think??? Especially in a warm hospital.
In January I was in hospital for
iloprost
infusion for raynauds and the nurse would do obs every hour and I noticed my body temperature was always around 36 so quite lower that normal I think??? Especially in a warm hospital.
Daisy78
in
LUPUS UK
7 years ago
Hi People taking fluoxetine for Raynauds, I have scleroderma too, what time of day do you take it?
Ive tried
iloprost
and sindifal
Ive tried
iloprost
and sindifal
trunchalobesity
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Leg pain after Iloprost?
I did search on the web and did indeed find a few people complaining of similar things following
Iloprost
treatment.
I did search on the web and did indeed find a few people complaining of similar things following
Iloprost
treatment.
hunkyd0ry
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
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iloprost for scleroderma
Have been on losartan with fluoxitine, omeprazole and azathioprine but am going in tomorrow for 5 days of
iloprost
. Bit nervous and somewhat dubious after reading some posts but have definately noticed since the cold weather my hands and feet are worsening :o( Any hints or tips?
Have been on losartan with fluoxitine, omeprazole and azathioprine but am going in tomorrow for 5 days of
iloprost
. Bit nervous and somewhat dubious after reading some posts but have definately noticed since the cold weather my hands and feet are worsening :o( Any hints or tips?
babycatcherem
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Sore nose
Diagnosed with Scleroderma for 7 years have
iloprost
on a monthly basis take amlodypine sildenafil pregablin ranatadine omeprazole and asprin ......and the occasional gin!
Diagnosed with Scleroderma for 7 years have
iloprost
on a monthly basis take amlodypine sildenafil pregablin ranatadine omeprazole and asprin ......and the occasional gin!
bloo
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Iloprost intravenous infusion
The consultant has suggested a 5 day
Iloprost
infusion via IV. Has anybody else had this and if so was it effective? Were there many side effects? Many thanks.
The consultant has suggested a 5 day
Iloprost
infusion via IV. Has anybody else had this and if so was it effective? Were there many side effects? Many thanks.
paula-moo
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
How do you manage your Digital Ulcers with Scleroderma or Raynaud's?
Treatments have improved and include drugs to open up blood supply including
Iloprost
given as a “drip” over several hours at a time, usually for 3 to 5 consecutive days.
Treatments have improved and include drugs to open up blood supply including
Iloprost
given as a “drip” over several hours at a time, usually for 3 to 5 consecutive days.
sclerodermauk
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Lots of needles!!
Then at the end of October blood tests in advance of having 5 days of
Iloprost
the first week in November, so yes lots of needles! But hey, no one can say the NHS isn"t looking after me.
Then at the end of October blood tests in advance of having 5 days of
Iloprost
the first week in November, so yes lots of needles! But hey, no one can say the NHS isn"t looking after me.
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Iloprost infusion as an inpatient
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 years, but my situation has now become critical and my Raynaud's is bad all year round. I am very nervous as I refuse all drugs if I possibly can.
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 years, but my situation has now become critical and my Raynaud's is bad all year round. I am very nervous as I refuse all drugs if I possibly can.
linda-l
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Anyone else have Raynauds in their 30's
I have got
Iloprost
drip for 5 days which worked for 6 weeks, then Adalat 5, then Adalat 20 and now my Rheumatologist says he is running out of things to try. But now my blood pressure is very high and nobody knows what to do.
I have got
Iloprost
drip for 5 days which worked for 6 weeks, then Adalat 5, then Adalat 20 and now my Rheumatologist says he is running out of things to try. But now my blood pressure is very high and nobody knows what to do.
mc_clean_david
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Gangrene tip of index finger and thumb, any help PLEASE
Had
Iloprost
five weeks ago and gangrene looked clear but has returned , Rheumatologist who diagnosed has asked for more but GO can't get reply from vascular team at local hospital , not that I even want to go there as I have been yelled at, misdiagnosed and treated as if it is all my fault, but GP says
Had
Iloprost
five weeks ago and gangrene looked clear but has returned , Rheumatologist who diagnosed has asked for more but GO can't get reply from vascular team at local hospital , not that I even want to go there as I have been yelled at, misdiagnosed and treated as if it is all my fault, but GP says
Skip13
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Iloprost
Hi reading your story about
Iloprost
Im from N.I. & couldn't tolerate
Iloprost
so I get Flolan infusion instead I get it for 6 hours for 5 days & it is much easier to tolerate. I now get it every 3 months for my Raynauds & Scleroderma.
Hi reading your story about
Iloprost
Im from N.I. & couldn't tolerate
Iloprost
so I get Flolan infusion instead I get it for 6 hours for 5 days & it is much easier to tolerate. I now get it every 3 months for my Raynauds & Scleroderma.
Gdonnelly
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Infusion for Raynaud's and Erythromelalgia?
I often see posts for
iloprost
, but haven't seen these drugs so much. However, I am in the US, so that maybe is the difference. She also mentioned that some have found relief with topically using an ointment for hemorrhoids. Any comments on that? Thank you.
I often see posts for
iloprost
, but haven't seen these drugs so much. However, I am in the US, so that maybe is the difference. She also mentioned that some have found relief with topically using an ointment for hemorrhoids. Any comments on that? Thank you.
Goldyukr
in
The Erythromelalgia Association
8 years ago
Infusion for Raynaud's and Erythromelalgia?
I often see posts for
iloprost
, but haven't seen these drugs so much. However, I am in the US, so that maybe is the difference. She also mentioned that some have found relief with topically using an ointment for hemorrhoids. Any comments on that? Thank you.
I often see posts for
iloprost
, but haven't seen these drugs so much. However, I am in the US, so that maybe is the difference. She also mentioned that some have found relief with topically using an ointment for hemorrhoids. Any comments on that? Thank you.
Goldyukr
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
DAY 3 ILOPROST
Hello everybody, day 3 finished. Managed to get to hour 4 before I got headache and upto 40ml an hour, took my paracetamol and continued on to my 6th hour! I had my cannula removed last night cos I wanted shower and wash my hair, but tonight I decided to leave the cannula in, safes the nurses trying
Hello everybody, day 3 finished. Managed to get to hour 4 before I got headache and upto 40ml an hour, took my paracetamol and continued on to my 6th hour! I had my cannula removed last night cos I wanted shower and wash my hair, but tonight I decided to leave the cannula in, safes the nurses trying
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
iloprost appointment
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 to read, taking my tablet to play games on!! Heres hoping it works.
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 to read, taking my tablet to play games on!! Heres hoping it works.
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
First day of iloprost
Well the first day of
iloprost
is over it went well, got the headache and pain in jaw, they slowed the infusion and although the pain didn't get better it didn't get worse., I chose to keep the cannula in because I didn't fancy having another needle tomorrow, so sat here with hand all wrapped up!
Well the first day of
iloprost
is over it went well, got the headache and pain in jaw, they slowed the infusion and although the pain didn't get better it didn't get worse., I chose to keep the cannula in because I didn't fancy having another needle tomorrow, so sat here with hand all wrapped up!
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
RECENT HOSPITAL APPOINTMENT
I come away, having been informed I need to have an
iloprost
infusion (my first) , another lung function test, another heart scan and my Alkaline Phosphatase level is high so shall need to be monitored!! Wow that was some "chat".
I come away, having been informed I need to have an
iloprost
infusion (my first) , another lung function test, another heart scan and my Alkaline Phosphatase level is high so shall need to be monitored!! Wow that was some "chat".
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Iloprost
I have raynuards scleroderma copd and vascular disease rematolgy want me to go in for
iloprost
and my vascular surgeon said no anyone got answers
I have raynuards scleroderma copd and vascular disease rematolgy want me to go in for
iloprost
and my vascular surgeon said no anyone got answers
Billyboy240863
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
I am due to have Iloprost for the first time
Hi all I am due to have illoprost shortly. I have very bad raynauld which has lead to terrible ulcerated fingers. They are extremely painful and I have not been sleeping. They pain then burn then itch it's terrible. I have had the option to either be hospitalized or go in daily and I am not too sure
Hi all I am due to have illoprost shortly. I have very bad raynauld which has lead to terrible ulcerated fingers. They are extremely painful and I have not been sleeping. They pain then burn then itch it's terrible. I have had the option to either be hospitalized or go in daily and I am not too sure
ceceliac10
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
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