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Iloprost
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I'm am going in for iloprost anyone had it before and did it help
Iloprost
Iloprost
Billyboy240863
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
To start a new treatment Beliumumab
I have had lots of treatments life mycophenlat, cyclophosphomide, azotiaprine, rhetoximab,
iloprost
, flolan, metrothriaxte. I feel uncomfortable with the word chemo . . I tried her to use infusion bcos immunsuppressant is a bit of a touge twister.
I have had lots of treatments life mycophenlat, cyclophosphomide, azotiaprine, rhetoximab,
iloprost
, flolan, metrothriaxte. I feel uncomfortable with the word chemo . . I tried her to use infusion bcos immunsuppressant is a bit of a touge twister.
ijeasike
in
LUPUS UK
8 years ago
Strange feeling in throat?
Have had a digital sympathectomy and a few courses of
Iloprost
over the past 3 years along with medication. Have recently started to notice a strange feeling in my throat - a bit like when you are choked up/upset over something and feels like something is stuck there I.e.
Have had a digital sympathectomy and a few courses of
Iloprost
over the past 3 years along with medication. Have recently started to notice a strange feeling in my throat - a bit like when you are choked up/upset over something and feels like something is stuck there I.e.
1Stella
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
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Does anyone recognise this pattern?
At time of writing I am in the wonderful Royal Free hospital having a course of
Iloprost
infusions which we are hoping will help the ulcers. I am due to start a clinical trial for a new drug next week but don't really know whether to go down that route or not?
At time of writing I am in the wonderful Royal Free hospital having a course of
Iloprost
infusions which we are hoping will help the ulcers. I am due to start a clinical trial for a new drug next week but don't really know whether to go down that route or not?
Jacksons_dad
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Scleroderma and ulcers
I have just had
iloprost
infusions and started taking mycofenolate. Could they be the cause or even scleroderma. I have never had mouth ulcers before and can't understand why now. Lindy
I have just had
iloprost
infusions and started taking mycofenolate. Could they be the cause or even scleroderma. I have never had mouth ulcers before and can't understand why now. Lindy
77lindy
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Struggling with sildenafil
The aim is to reduce my
iloprost
admissions from every six months to once a year, which would be great, but at the moment I'm not sure I'm going to manage this drug. I haven't even built up to the full dose yet - just taking two a day and am supposed to move on to three a day next week.
The aim is to reduce my
iloprost
admissions from every six months to once a year, which would be great, but at the moment I'm not sure I'm going to manage this drug. I haven't even built up to the full dose yet - just taking two a day and am supposed to move on to three a day next week.
Daisy23
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
systemic sclerosis
hi everyone ive had raynauds for about 5years now in december last year I developed ulcers on 2 toes and since then ive gone down hill ive had nifidepine & losartan also an
iloprost
infusion now I have 6 ulcers on my toes rash all over my body thats very itchy my fingers have gone tight and sausage
hi everyone ive had raynauds for about 5years now in december last year I developed ulcers on 2 toes and since then ive gone down hill ive had nifidepine & losartan also an
iloprost
infusion now I have 6 ulcers on my toes rash all over my body thats very itchy my fingers have gone tight and sausage
franky1965
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Confused
Been back to see consultant,
iloprost
didn't make a jot of difference, tried steroids, no help, had ct of heart & lungs, both seem ok, now going for heart echo & lung function test.
Been back to see consultant,
iloprost
didn't make a jot of difference, tried steroids, no help, had ct of heart & lungs, both seem ok, now going for heart echo & lung function test.
Anne1966
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Iloprost
Well, not sure how long it takes to work, but got to say, absolutely no difference after one week, hands still rubbish & toes not much better. Sad times.
Well, not sure how long it takes to work, but got to say, absolutely no difference after one week, hands still rubbish & toes not much better. Sad times.
Anne1966
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Pain in elbows and knees
Hi been diagnosed with scleroderma for last 5 years have
iloprost
every 4 weeks and usually manage reasonably well I work full time too but these last few weeks I've been so tired and have started with pains in my elbows and knees my arms feel like they're locking when I've carried something a short
Hi been diagnosed with scleroderma for last 5 years have
iloprost
every 4 weeks and usually manage reasonably well I work full time too but these last few weeks I've been so tired and have started with pains in my elbows and knees my arms feel like they're locking when I've carried something a short
bloo
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Iloprost
Had my infusion for 6 hours a day for 5 days, finished on Friday, has anyone else suffered from really painful joints afterwards, not sure, as this was my first treatment. Thanks people xx
Had my infusion for 6 hours a day for 5 days, finished on Friday, has anyone else suffered from really painful joints afterwards, not sure, as this was my first treatment. Thanks people xx
Anne1966
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Iloprost
New question: I work in a supermarket, when having the
Iloprost
infusion, will I be ok to work straight after, as not to sure my company will be to pleased with me taking time off, and how often do you have your infusions, over the course of say, a year, thanks peeps x
New question: I work in a supermarket, when having the
Iloprost
infusion, will I be ok to work straight after, as not to sure my company will be to pleased with me taking time off, and how often do you have your infusions, over the course of say, a year, thanks peeps x
Anne1966
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Iloprost
Due to have
iloprost
infusion, daft question, but is the cannula left in place for the duration of treatment (6 days), or is a new one each in each day?
Due to have
iloprost
infusion, daft question, but is the cannula left in place for the duration of treatment (6 days), or is a new one each in each day?
Anne1966
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Iloprost!!!
No drug infusion this week! Cancelled because of a heavy cold! That's twice now so maybe third time lucky, it's rebooked for next week. A week indoors now in front of the Log Burner, that's if there is room for me as well as the Dogs!!!!
No drug infusion this week! Cancelled because of a heavy cold! That's twice now so maybe third time lucky, it's rebooked for next week. A week indoors now in front of the Log Burner, that's if there is room for me as well as the Dogs!!!!
JayneO
in
Scleroderma & Raynaud's UK (SRUK)
9 years ago
Update on digital ulcer
Had
Iloprost
in August and having another course in 3 weeks. Am now on Sildenafil 50 mg 3 times a day and Losartan 25 mg a day but no significant improvement either with ulcer or circulation.
Had
Iloprost
in August and having another course in 3 weeks. Am now on Sildenafil 50 mg 3 times a day and Losartan 25 mg a day but no significant improvement either with ulcer or circulation.
bealepup
in
Scleroderma & Raynaud's UK (SRUK)
9 years ago
This is summer??
Had Raynauds attacks 3 times today one lasting 2 hours, this in spite of having
Iloprost
last week and being on Sildenafil as well, dreading winter again!
Had Raynauds attacks 3 times today one lasting 2 hours, this in spite of having
Iloprost
last week and being on Sildenafil as well, dreading winter again!
bealepup
in
Scleroderma & Raynaud's UK (SRUK)
9 years ago
Digital ulcer update
To have urgent
Iloprost
infusions and has started me on Sildenafil. Is anyone taking this? does it work and are there any side effects. Bit concerned as enclosed leaflet says not to be taken by women! Thanks for all replies to earlier post beaglepup
To have urgent
Iloprost
infusions and has started me on Sildenafil. Is anyone taking this? does it work and are there any side effects. Bit concerned as enclosed leaflet says not to be taken by women! Thanks for all replies to earlier post beaglepup
bealepup
in
Scleroderma & Raynaud's UK (SRUK)
9 years ago
Digital ulcers
I had
Iloprost
last November and am due to see Rheumotologist at end of month.
I had
Iloprost
last November and am due to see Rheumotologist at end of month.
bealepup
in
Scleroderma & Raynaud's UK (SRUK)
9 years ago
First iloprost infusion
My rheumatologist has now arranged for me to have
iloprost
. I am having my first
iloprost
infusion next month (every day for five days at a Medical Day Unit). I have taken the week off work + the weekend to recover. I am nervous about the treatment but trying to stay positive.
My rheumatologist has now arranged for me to have
iloprost
. I am having my first
iloprost
infusion next month (every day for five days at a Medical Day Unit). I have taken the week off work + the weekend to recover. I am nervous about the treatment but trying to stay positive.
ctj_2013
in
Scleroderma & Raynaud's UK (SRUK)
9 years ago
Ginkgo biloba and iloprost infusion
She has put me on the waiting list for the
iloprost
infusion, does anyone have any experience of this. I have heard mixed reviews about and I'm unsure if it is worth going through with it or not. She also advised me to buy ginkgo biloba to try.
She has put me on the waiting list for the
iloprost
infusion, does anyone have any experience of this. I have heard mixed reviews about and I'm unsure if it is worth going through with it or not. She also advised me to buy ginkgo biloba to try.
hayleyt14
in
Scleroderma & Raynaud's UK (SRUK)
9 years ago
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