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Iloprost
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Raynauds Pain control
My rheumatologist said he isnt sure if it is or not due to lack of success with treatments; amlodipine, nifedipine, losartan, felodipine, fluoxetine (trial), sildenafil,
iloprost
and I'm trying naftidrofuryl at the minute with no success so far.
My rheumatologist said he isnt sure if it is or not due to lack of success with treatments; amlodipine, nifedipine, losartan, felodipine, fluoxetine (trial), sildenafil,
iloprost
and I'm trying naftidrofuryl at the minute with no success so far.
BertieB_280616
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Hydroxychloroquine
So... my husband has gone in for his yearly
iloprost
treatment he missed last year and has been in a lot of unbearable pain. Dr Denton has recommended hydroxychloroquine for the pain? I believe, Can you let me know your experience with this drug side effects etc.
So... my husband has gone in for his yearly
iloprost
treatment he missed last year and has been in a lot of unbearable pain. Dr Denton has recommended hydroxychloroquine for the pain? I believe, Can you let me know your experience with this drug side effects etc.
Kc_1411
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Torture treatment on the NHS!!
I was admitted for a 10 day course of
Iloprost
6 hour daily infusions as an inpatient. My infusions were so poorly managed and understood by the nursing staff it was torture. The first was given at 10 pm through to 4am ( thanks guys!) 10ml/ 30mins, 20ml /30 mins, 30ml /hour, 40ml/for 4 hours!!.
I was admitted for a 10 day course of
Iloprost
6 hour daily infusions as an inpatient. My infusions were so poorly managed and understood by the nursing staff it was torture. The first was given at 10 pm through to 4am ( thanks guys!) 10ml/ 30mins, 20ml /30 mins, 30ml /hour, 40ml/for 4 hours!!.
Motherm
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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I take Mycophenolate, Amlodipine, and yearly
Iloprost
Infusion. Also I recently finished taking Prednisolone.
I take Mycophenolate, Amlodipine, and yearly
Iloprost
Infusion. Also I recently finished taking Prednisolone.
Scooterboy63
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Iloprost
I had 5 days of
Iloprost
infusion for the first time last week. How long is it before you usually start to feel the benefit?
I had 5 days of
Iloprost
infusion for the first time last week. How long is it before you usually start to feel the benefit?
blueberry20
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
ILOPROST
Because Wednesday was day 1 of 3 of
Iloprost
infusion. As you know if you have had this treatment it is tiring, 6 hours of sitting in a chair, and that doesn"t count the preparation etc.
Because Wednesday was day 1 of 3 of
Iloprost
infusion. As you know if you have had this treatment it is tiring, 6 hours of sitting in a chair, and that doesn"t count the preparation etc.
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
ME AGAIN!
A slightly less busy week, just as well because following my
Iloprost
I have been feeling tired. Monday and Tuesday was my usual volunteer things. Thankfully my granddaughter came to see me on Monday after school, she has this effect of lifting my mood as well as passing on her energy!
A slightly less busy week, just as well because following my
Iloprost
I have been feeling tired. Monday and Tuesday was my usual volunteer things. Thankfully my granddaughter came to see me on Monday after school, she has this effect of lifting my mood as well as passing on her energy!
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Experience of Iloprost infusion?
I got in contact with rheumatologist via his secretary and was advised the only side effects of
Iloprost
are headache and low BP, and there are no lasting side effects. The first part of this is obviously incorrect, and in my experience the second part is too.
I got in contact with rheumatologist via his secretary and was advised the only side effects of
Iloprost
are headache and low BP, and there are no lasting side effects. The first part of this is obviously incorrect, and in my experience the second part is too.
celvo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
The positive thread :)
Especially the 5 days during the
Iloprost
infusions put things a little bit more in perspective for me personally. Yes, they are shitty cards... but there are always shittier cards than our own - and sooner or later each and every body will receive a bad deck of cards.
Especially the 5 days during the
Iloprost
infusions put things a little bit more in perspective for me personally. Yes, they are shitty cards... but there are always shittier cards than our own - and sooner or later each and every body will receive a bad deck of cards.
hunkyd0ry
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
I’m going to see Professor Denton! 😊
Apparently professor Denton runs a clinic in Bristol (close to me) every quarter and my Rheumatologist is going to ask if he can see me, this I’m very excited about 😃 I did ask my Rheumatologist today about
iloprost
infusions, she was a little reluctant to offer it at the moment, but concerned I’m running
Apparently professor Denton runs a clinic in Bristol (close to me) every quarter and my Rheumatologist is going to ask if he can see me, this I’m very excited about 😃 I did ask my Rheumatologist today about
iloprost
infusions, she was a little reluctant to offer it at the moment, but concerned I’m running
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Systemic infections!!
Could it be the
iloprost
caused irritation to my kidney ( toxic overload) that then caused inflammation then infection and the antibiotics didn't work but the raw garlic did (as it's a potent natural antibiotic) So finally to my point sorry guys for waffling on.
Could it be the
iloprost
caused irritation to my kidney ( toxic overload) that then caused inflammation then infection and the antibiotics didn't work but the raw garlic did (as it's a potent natural antibiotic) So finally to my point sorry guys for waffling on.
Daisy78
in
LUPUS UK
6 years ago
Iloprost treatment - twitching side effect?
I underwent my
Iloprost
treatment and suffered from a severe headache and nausea. I did experience a lot of twitching. I asked a nurse and she said this wasnt listed under side effects. Has anyone else experienced twitching?
I underwent my
Iloprost
treatment and suffered from a severe headache and nausea. I did experience a lot of twitching. I asked a nurse and she said this wasnt listed under side effects. Has anyone else experienced twitching?
BertieB_280616
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
ILOPROST
Arrived and rearing to go, cannula in, after a little encouragement, then a bit of a wait for
iloprost
to come up from pharmacy. All the usual BP ,temp and pulse, so far so good, lovely nurse brings coffee. Settle down to read the newspapers and then its lunch time.
Arrived and rearing to go, cannula in, after a little encouragement, then a bit of a wait for
iloprost
to come up from pharmacy. All the usual BP ,temp and pulse, so far so good, lovely nurse brings coffee. Settle down to read the newspapers and then its lunch time.
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
ILOPROST
I am due to start
Iloprost
Treatment in 2 weeks time. I suffer from severe Primary Raynaud's. I have tried several medications, from calcium channel blockers to experimental drugs like Valium. I am really nervous about
Iloprost
treatmemt and I do not know much about it.
I am due to start
Iloprost
Treatment in 2 weeks time. I suffer from severe Primary Raynaud's. I have tried several medications, from calcium channel blockers to experimental drugs like Valium. I am really nervous about
Iloprost
treatmemt and I do not know much about it.
BertieB_280616
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
LAST DAY ILOPROST
Hi everybody, well finished the
Iloprost
! although they have been long days,it will be worth it. I am tired but at least it was only 3 days this time not 5!! Fingers crossed, well as crossed as I can get them haha, that it has helped.
Hi everybody, well finished the
Iloprost
! although they have been long days,it will be worth it. I am tired but at least it was only 3 days this time not 5!! Fingers crossed, well as crossed as I can get them haha, that it has helped.
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Catch up news
Anyway will find out whether it"s
iloprost
or yet another tablet tomorrow when I go to another appointment at my other hospital that looks after me and has a specialist dept, I wait with baited breathe.
Anyway will find out whether it"s
iloprost
or yet another tablet tomorrow when I go to another appointment at my other hospital that looks after me and has a specialist dept, I wait with baited breathe.
fairy56
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
All new to me! Help!
I had three days of
Iloprost
treatment in November which was horrible but it did help! The Nifedipine tablets didn’t really help the Raynauds and I’m now on Aspirin which hasn’t helped much either.
I had three days of
Iloprost
treatment in November which was horrible but it did help! The Nifedipine tablets didn’t really help the Raynauds and I’m now on Aspirin which hasn’t helped much either.
Dani_7
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Confusion after Iloprost confusion???
I completed a weeks
Iloprost
infusion on 16 February. This was my second admission, the first being last October. I noticed after each treatment I was affected cognitively. My short term memory was really affected and I cannot remember even simple names and get very tired mentally.
I completed a weeks
Iloprost
infusion on 16 February. This was my second admission, the first being last October. I noticed after each treatment I was affected cognitively. My short term memory was really affected and I cannot remember even simple names and get very tired mentally.
linda-l
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Confusion after Iloprost confusion???
I completed a weeks
Iloprost
infusion on 16 February. This was my second admission, the first being last October. I noticed after each treatment I was affected cognitively. My short term memory was really affected and I cannot remember even simple names and get very tired mentally.
I completed a weeks
Iloprost
infusion on 16 February. This was my second admission, the first being last October. I noticed after each treatment I was affected cognitively. My short term memory was really affected and I cannot remember even simple names and get very tired mentally.
linda-l
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Looking for information and support system
I got diagnosed with diffuse cutaneous scleroderma in October 2017, I'm currently on cyclophosphamide and just finished a course of
iloprost
. I'm just looking for a support network as finding it hard at the moment.
I got diagnosed with diffuse cutaneous scleroderma in October 2017, I'm currently on cyclophosphamide and just finished a course of
iloprost
. I'm just looking for a support network as finding it hard at the moment.
Donnalw72
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
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