Experiences with

Iloprost

After my latest rheumatologist telephone appointment, he suggested that I had an iloprost infusion for my Raynauds as for some reason, I seem to be feeling the cold much more just lately.

(Also read a few posts on iloprost which I’ll speak to Denton about.) but in the meantime, looking for stylish gloves with a warm lining that will save me this time of the year.

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 .

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 😩

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.

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

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?

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.

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.

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 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.

I would like to know about health system in the UK and the rituximab and iloprost.

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?

Hi, has anyone had Iloprost in the summer and did it help with the burning?

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

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!

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.

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.

Just 2 weeks after Iloprost and they are already on their way, take care, Xx