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Iloprost
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Pamidronate infusion
I read that it is given slowly but i hope not as slow and painful as
iloprost
which i reacted badly to. I was almost killed with pain from head to toe. So please any information will help. Thanks and God bless. ijeasiks
I read that it is given slowly but i hope not as slow and painful as
iloprost
which i reacted badly to. I was almost killed with pain from head to toe. So please any information will help. Thanks and God bless. ijeasiks
ijeasike
in
LUPUS UK
9 years ago
Seen rheumatologist at last
Going into hospital in 2 weeks time for 5 consecutive days for
Iloprost
infusions. Does this help the raynauds? I am increasingly frustrated that few people understand what is wrong with me and say things like "you look ok and my hands and feet get cold!"
Going into hospital in 2 weeks time for 5 consecutive days for
Iloprost
infusions. Does this help the raynauds? I am increasingly frustrated that few people understand what is wrong with me and say things like "you look ok and my hands and feet get cold!"
bealepup
in
Scleroderma & Raynaud's UK (SRUK)
10 years ago
Hi everyone I am New to this but have reynauds and schleroderma
I have had:
iloprost
, Viagra, nifedipine, asprin, lorsatan, gtn patches... I only get put onto medication if I randomly get a toe or finger that turns blue and within a few months causes extreme pain and turns into a nasty infection where
iloprost
and antibiotics are required.
I have had:
iloprost
, Viagra, nifedipine, asprin, lorsatan, gtn patches... I only get put onto medication if I randomly get a toe or finger that turns blue and within a few months causes extreme pain and turns into a nasty infection where
iloprost
and antibiotics are required.
XT_bubbles
in
Scleroderma & Raynaud's UK (SRUK)
10 years ago
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Bosentan decision delayed by NICE as they deem it to be non urgent and not in demand.
I do understand about costs, but the
Iloprost
and hospitisation has cost more in the long run.
I do understand about costs, but the
Iloprost
and hospitisation has cost more in the long run.
adow
in
Scleroderma & Raynaud's UK (SRUK)
10 years ago
How often will I need iloprost infusions
I have received a letter to go for my first
iloprost
infusion. Once I have had this one how often can I expect to have them? I have read the posts on
iloprost
but I can't find how often it is generally given and I didn't ask at my appointment
I have received a letter to go for my first
iloprost
infusion. Once I have had this one how often can I expect to have them? I have read the posts on
iloprost
but I can't find how often it is generally given and I didn't ask at my appointment
Jezmin
in
Scleroderma & Raynaud's UK (SRUK)
10 years ago
Having a 'Why me?' day :-(
I have a lot to be thankful for and have had every test and treatment going to investigate and alleviate my symptoms including an
Iloprost
infusion, prescribed Mycophenolate, Prednisolone, Hydroxychloroquine, Fluoxetine, Lorsatan, Lanzaprozole, Vit D3, had CT scans, MRI of brain and cervical spine, bone
I have a lot to be thankful for and have had every test and treatment going to investigate and alleviate my symptoms including an
Iloprost
infusion, prescribed Mycophenolate, Prednisolone, Hydroxychloroquine, Fluoxetine, Lorsatan, Lanzaprozole, Vit D3, had CT scans, MRI of brain and cervical spine, bone
tcogb
in
LUPUS UK
10 years ago
has anyone else got varicose veins due to scleroderma
I take losartan 75mg for Reynaud's . would
iloprost
or Viagra help ??
I take losartan 75mg for Reynaud's . would
iloprost
or Viagra help ??
lollipop
in
Scleroderma & Raynaud's UK (SRUK)
10 years ago
Hi I have been diagnosed with Raynauds and recently Scleroderma.
Its terribly painful and give me sleepless nights, I'm constantly in pain, I get my treatments from The Royal Free Hospital, I have had two
Iloprost
infusion which didn't help much and about to have another one. I also take gabapentin, methotrexate, adalat, sildenifil, losartan on daily basis.
Its terribly painful and give me sleepless nights, I'm constantly in pain, I get my treatments from The Royal Free Hospital, I have had two
Iloprost
infusion which didn't help much and about to have another one. I also take gabapentin, methotrexate, adalat, sildenifil, losartan on daily basis.
146nanab
in
Scleroderma & Raynaud's UK (SRUK)
10 years ago
hi everyone, got up today with the start of a rash on my face, Just a few very small weeping spots. what can i use?
also in hospital on the 10/2 at sunderland for a
ILOPROST
INFUSION and quite worried about it. Anyone with any tips? thankyou x x x x
also in hospital on the 10/2 at sunderland for a
ILOPROST
INFUSION and quite worried about it. Anyone with any tips? thankyou x x x x
louloubabalou
in
LUPUS UK
10 years ago
Side effects
The worse thing at the moment is my Raynauds which is kicking up several gears with a vengeance - Royal Free have asked me to consider
Iloprost
infusions but still thinking about it and also waiting to see if my local hospital can do that rather than have to travel to London.
The worse thing at the moment is my Raynauds which is kicking up several gears with a vengeance - Royal Free have asked me to consider
Iloprost
infusions but still thinking about it and also waiting to see if my local hospital can do that rather than have to travel to London.
tcogb
in
LUPUS UK
11 years ago
ON HOUSE ARREST
I cant even go to the cinema, I cant be outside for more than 3hrs. what a life. my dr suggestion i have an
iloprost
infusion to help me through winter, but i refused it cos it is more of a killer, it is an argonizing treatment.
I cant even go to the cinema, I cant be outside for more than 3hrs. what a life. my dr suggestion i have an
iloprost
infusion to help me through winter, but i refused it cos it is more of a killer, it is an argonizing treatment.
ijeasike
in
LUPUS UK
11 years ago
This one is about keeping the home warm enough.
All that medication; hospital visits for
Iloprost
infusion ; and the extra warm clothing etc; etc; I am wondering if it is not time that the issue of our heating bills is raised with the government to put pressure on energy companies to reduce the cost of warmth for us.
All that medication; hospital visits for
Iloprost
infusion ; and the extra warm clothing etc; etc; I am wondering if it is not time that the issue of our heating bills is raised with the government to put pressure on energy companies to reduce the cost of warmth for us.
Hidden
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
How often do i have to take iloprost ?
I had
iloprost
infusion in 2011 and 2012 once a year . How often do ihave to do this treatment to see results ? Because i still suffer from ulcers .
I had
iloprost
infusion in 2011 and 2012 once a year . How often do ihave to do this treatment to see results ? Because i still suffer from ulcers .
papardeles
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
iloprost at the royal free
Just wondered if anyone else was going for ilorpost at the royal free in nivember and staying at the premier inn
Just wondered if anyone else was going for ilorpost at the royal free in nivember and staying at the premier inn
lollipop
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
Is anybody else having a problem getting their rheumatology appointment through from The Royal Free?
My GP was then forced to write to them asking for my yearly
Iloprost
admission. When I saw the rheumy she asked why I had not attended for my lung function test and heart echo. I handed her the test results which proved I had attended. "Oh yes" she said sheepishly. "So you did".
My GP was then forced to write to them asking for my yearly
Iloprost
admission. When I saw the rheumy she asked why I had not attended for my lung function test and heart echo. I handed her the test results which proved I had attended. "Oh yes" she said sheepishly. "So you did".
Hidden
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
Iloprost protocols
Couple of days ago there was a question re
Iloprost
. After reading the replies I am wondering if maybe the decimal point is being put in the wrong place eg. people stating they receive 10ml per hour when, in fact, it is 1.0ml per hour.
Couple of days ago there was a question re
Iloprost
. After reading the replies I am wondering if maybe the decimal point is being put in the wrong place eg. people stating they receive 10ml per hour when, in fact, it is 1.0ml per hour.
nannysue1950
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
Rheumatologist had just recommended another session of Iloprost. Does anyone know the minimum time you need to come off nifedipine as it is
so very cold I dread not taking the nifedipine prior to going to hospital. I forgot to ask the Rheumatologist this question. In Oct I had gone blue and it certainly wasn't this cold. I have normal blood pressure.
so very cold I dread not taking the nifedipine prior to going to hospital. I forgot to ask the Rheumatologist this question. In Oct I had gone blue and it certainly wasn't this cold. I have normal blood pressure.
creditcrunchie
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
Continuous iloprost.....how long does it take to work?
I had continuous
iloprost
this week in hospital, went in on Monday and got out today. Does anyone know how long it can take to work?
I had continuous
iloprost
this week in hospital, went in on Monday and got out today. Does anyone know how long it can take to work?
scotgirl
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
will methotrexate help reynauds and diseminated sclerosis. No meds. helping now. Very swollen legs and feet and breathlessness too
What about
iloprost
infusion for Reynauds?
What about
iloprost
infusion for Reynauds?
Kevla
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
Blobs tiny blood vessels near the cuticles
I have really bad raynauds I been to my rheumatology and they said my tiny blood vessels near the cuticles have got blobs I had to have bloods done getting worried now got to have
iloprost
but what are these blobs they said not to worry
I have really bad raynauds I been to my rheumatology and they said my tiny blood vessels near the cuticles have got blobs I had to have bloods done getting worried now got to have
iloprost
but what are these blobs they said not to worry
panthersgirl74
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
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