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Iloprost
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Iloprost infusions
I saw the Rheumatologist last week and he has referred me for
Iloprost
infusions, starting next week. I'd really like advice about what to expect, about side effects that people have experienced and if they've found the infusions to be helpful.
I saw the Rheumatologist last week and he has referred me for
Iloprost
infusions, starting next week. I'd really like advice about what to expect, about side effects that people have experienced and if they've found the infusions to be helpful.
skylark15
in
LUPUS UK
8 months ago
Iloprost infusions
I saw the Rheumatologist last week and he has referred me for
Iloprost
infusions, starting next week. I'd really like advice about what to expect, about side effects that people have experienced and if they've found the infusions to be helpful.
I saw the Rheumatologist last week and he has referred me for
Iloprost
infusions, starting next week. I'd really like advice about what to expect, about side effects that people have experienced and if they've found the infusions to be helpful.
skylark15
in
Scleroderma & Raynaud's UK (SRUK)
8 months ago
Pins and needles, sensitivity to water 6 months after severe Raynaud's attack with ischaemia
We had no idea what we were dealing with and though her fingertips were ischaemic with some necrosis they were saved with 5 days emergency
iloprost
. Fast forward 6 months, she looks healed though still wears gloves and woollen stockings 24 hours in UK now which is c.20degrees C .
We had no idea what we were dealing with and though her fingertips were ischaemic with some necrosis they were saved with 5 days emergency
iloprost
. Fast forward 6 months, she looks healed though still wears gloves and woollen stockings 24 hours in UK now which is c.20degrees C .
CarerEdi
in
Scleroderma & Raynaud's UK (SRUK)
4 months ago
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Raynaud's in dark skinned patients
The black dots scared the doctors into realising what it was - her fingers were saved by immediate GTN patches, and swift
iloprost
5-day infusion. Apart from looking at colour at the end of the fingers, how can she know she needs urgent care? I think she just gets used to the pain 😩
The black dots scared the doctors into realising what it was - her fingers were saved by immediate GTN patches, and swift
iloprost
5-day infusion. Apart from looking at colour at the end of the fingers, how can she know she needs urgent care? I think she just gets used to the pain 😩
CarerEdi
in
Scleroderma & Raynaud's UK (SRUK)
5 months ago
iloprost infusions and work
hi all, those on regular
iloprost
infusions how is this managed by your employer ? ie is it taken as sick, work from home or some sort of special leave arrangement?
hi all, those on regular
iloprost
infusions how is this managed by your employer ? ie is it taken as sick, work from home or some sort of special leave arrangement?
Rp321
in
Scleroderma & Raynaud's UK (SRUK)
11 months ago
Elimination of symptoms through change of diet (such as AIP) - has anyone tried it?
I have limited scleroderma for 8 years myself, and being on a recent dose of 9 tablets per day (sildenafil, bosentan & hydroxychloroquine) and looking forward to 4 days of
Iloprost
infusions to manage my symptoms, I am feeling sick thinking of the prospect of giving in and being a pillbox for the rest
I have limited scleroderma for 8 years myself, and being on a recent dose of 9 tablets per day (sildenafil, bosentan & hydroxychloroquine) and looking forward to 4 days of
Iloprost
infusions to manage my symptoms, I am feeling sick thinking of the prospect of giving in and being a pillbox for the rest
hunkyd0ry
in
Scleroderma & Raynaud's UK (SRUK)
5 months ago
new normal blood tests
Now I’m definitively diagnosed with antibody positive systemic sclerosis and get Mycophenolate,
Iloprost
and Losartan amongst others. Most of my problems are in stomach and lower GI.
Now I’m definitively diagnosed with antibody positive systemic sclerosis and get Mycophenolate,
Iloprost
and Losartan amongst others. Most of my problems are in stomach and lower GI.
OldTed60
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
sertraline and iloprost
I wondered what others experiences are and if they have been able to take SSRI’s while on
iloprost
? I know my gp will have on record somewhere from clinic letters that I am on
iloprost
infusions, however I don’t know if she remembered / knew about it at the time of prescribing it.
I wondered what others experiences are and if they have been able to take SSRI’s while on
iloprost
? I know my gp will have on record somewhere from clinic letters that I am on
iloprost
infusions, however I don’t know if she remembered / knew about it at the time of prescribing it.
Rp321
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Severe Raynaud's
Hi I have severe primary Raynaud's and have
iloprost
infusions every month at the minute the problem I have is like cold running water from my knees down to the ends of my toes, can anyone shed any light on this? I also get aches and pains in the same place. Any advise is appreciated.
Hi I have severe primary Raynaud's and have
iloprost
infusions every month at the minute the problem I have is like cold running water from my knees down to the ends of my toes, can anyone shed any light on this? I also get aches and pains in the same place. Any advise is appreciated.
Verily
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Worried about iloprost
Hi I go into hospital for 5 days of treatment on the 27 Feb for the first time and I am very anxious about the process. I've had little info from the hospital. Any tips or information would be greatly received.
Hi I go into hospital for 5 days of treatment on the 27 Feb for the first time and I am very anxious about the process. I've had little info from the hospital. Any tips or information would be greatly received.
Choc73
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Systemic sclerosis
I would like to know about health system in the UK and the rituximab and
iloprost
.
I would like to know about health system in the UK and the rituximab and
iloprost
.
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
An injection of iloprost and rituximab for systemic sclerosis Raynaud's phenomenon
Has anyone received an injection of
iloprost
and rituximab? After it is received, is there any improvement noticed? Also does insurance cover these 2 medicine?
Has anyone received an injection of
iloprost
and rituximab? After it is received, is there any improvement noticed? Also does insurance cover these 2 medicine?
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Iloprost
Hi, has anyone had
Iloprost
in the summer and did it help with the burning?
Hi, has anyone had
Iloprost
in the summer and did it help with the burning?
Jacko37
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Steroid for Raynaud's
Can anyone help was with my reumatology yest have exhausted all forms of treatment for Raynaud's and done
iloprost
infusion with no help, hands are now really sore , want to try blast session of 4 weeks on steroids but I'm scared of side effects hate pumping more meds into my body, exhausted trying creams
Can anyone help was with my reumatology yest have exhausted all forms of treatment for Raynaud's and done
iloprost
infusion with no help, hands are now really sore , want to try blast session of 4 weeks on steroids but I'm scared of side effects hate pumping more meds into my body, exhausted trying creams
Deby177
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Has anyone had iloprost at the Royal Free in London recently?
I've been recommended a week of
iloprost
in the next few months, and wondered what to expect, particularly in terms of practicalities like what accommodation you stay in (they said this was provided), meals, what to wear, how warm the infusion wards are, etc. Thanks very much!
I've been recommended a week of
iloprost
in the next few months, and wondered what to expect, particularly in terms of practicalities like what accommodation you stay in (they said this was provided), meals, what to wear, how warm the infusion wards are, etc. Thanks very much!
LilyInTheSun
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Are you currently experiencing issues around treatment and/or appointments in Northern Ireland?
Some of the issues include appointments such as
Iloprost
transfusions being cancelled and, when they do happen, the regular half-hourly checks not being done, that the rheumatology ward is being used for dementia patients and that rheumatology specialist nurses are still being redeployed elsewhere.
Some of the issues include appointments such as
Iloprost
transfusions being cancelled and, when they do happen, the regular half-hourly checks not being done, that the rheumatology ward is being used for dementia patients and that rheumatology specialist nurses are still being redeployed elsewhere.
Alida_Bennett
LUPUS UK
in
LUPUS UK
3 years ago
Digital Ulcers and Surgical Debridement
Iloprost
infusions not available in US. Had digital sympathectomy on both hands 6 years ago which was very successful for the ulcers at the time. My rheumatologist does not support surgical debridement because he worries about healing.
Iloprost
infusions not available in US. Had digital sympathectomy on both hands 6 years ago which was very successful for the ulcers at the time. My rheumatologist does not support surgical debridement because he worries about healing.
K9rsqr
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Digital ulcers
Just 2 weeks after
Iloprost
and they are already on their way, take care, Xx
Just 2 weeks after
Iloprost
and they are already on their way, take care, Xx
Jacko37
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Dented finger pads? Hi all I was hoping that someone could put light on the reason why my finger pads get so dented when I have pressure on,
I have severe primary raynaurds and have
iloprost
Infusions every month but as with most people this has got worse over the years my fingers wrinkle as though I've had my hands in water for a long time which I know is a common factor of raynaurds but not sure why my finger pads squash in when I put pressure
I have severe primary raynaurds and have
iloprost
Infusions every month but as with most people this has got worse over the years my fingers wrinkle as though I've had my hands in water for a long time which I know is a common factor of raynaurds but not sure why my finger pads squash in when I put pressure
Verily
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Iloprost
Hi, does anyone have side effects from
Iloprost
that goes on for weeks and weeks? Also, has anyone else had
Iloprost
since Covid and how do you manage with Waring a mask all day? I'm meant to be having it at the end of November and not looking forward to it at all, take care, Xx
Hi, does anyone have side effects from
Iloprost
that goes on for weeks and weeks? Also, has anyone else had
Iloprost
since Covid and how do you manage with Waring a mask all day? I'm meant to be having it at the end of November and not looking forward to it at all, take care, Xx
Jacko37
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
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