Iloprost infusions

[skylark15]

Hello, community.

I live in the UK and I have lupus, Raynaud's and Erythromelalgia. The EM causes me great pain and distress, particularly at night, when the burning pain, heat, swelling and redness are at their worst. My feet are often painful during the day, too, with the same set of symptoms, which makes choosing shoes an absolute nightmare. Chilblains at this time of the year add to the pain.

I have tried Sildenafil (but couldn't tolerate the side effects) and for a while now have been on Amitriptyline (or Nortiptyline), and Pregabalin. So far, nothing has relieved the pain in my feet.

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'm not going to stay in; the hospital is very close, so I'll attend as a day patient Monday-Friday. Thank you all in advance

[Lupiknits]

Hello! I have regular Iloprost infusions (a day every month) for Secondary Raynaud’s. I also have Systemic Sclerosis. I couldn’t tolerate meds for Raynaud’s and the Iloprost was recommended.

Since then I’ve only had a couple of digital ulcers so it’s well worth it. As to side effects of the infusions themselves, everyone reacts differently of course. I’m given a med (can’t think of the name at the mo) through the device before they start running the infusion itself. This is to prevent nausea. It’s a very good idea to take a paracetamol before they start because you get a headache. After that they slowly up the infusion: in my case until my blood pressure drops to the “no more “ point, but most can increase it far more.

Afterwards I feel tired, but nothing too remarkable.

As I said, it’s well worth it. As to the Erythromelalgia I have in my feet and lower legs 24/7 the Iloprost does not change it at all. It’s always there! A small dose of pregabalin takes the edge off , and is the largest dose I can take because of interactions with other meds.

Those are my experiences. Others, of course, have different ones.

[skylark15 in reply to Lupiknits]

Hi, Lupiknits. Thank you for your kind response and helpful advice re headache. The rheumy just said, would I be prepared to give iloprost a try, to see if it helped with the EM. I said yes, because I'd tried various meds, to little or no effect. My EM has crept up to affect my lower legs, too. And it's 24/7, now, as well ☹️☹️.

I will keep you posted.

xx

[skylark15 in reply to Lupiknits]

Dear, Lupi,

Thank you for your brilliant reply re iloprost infusions.

However, I've decided to postpone the infusions: they were rather "sprung" upon me, by a temporary Rheumatologist who is actually leaving next week, and offered as a "try it and see, it might help" treatment, even though EM is my major problem and the Raynaud's is not so bad. Plus, I have more tests and investigations booked for the next couple of weeks for my GI problems, which I really don't want to rearrange.

This way, I'll have more time to think about the iloprost and weigh up the pros and cons from all the help I've received via this forum from lovely people like yourself. If/when I decide to give iloprost a try, I'll refer back to all these replies and refresh my memory on what I might expect. Thanks again.

x

[Lupiknits in reply to skylark15]

Good idea! It’ll be there as an option x

[DMM01]

Hi Lupiknits, I used to have fairly regular Iloprost infusions, my first one was a result of a papercut that wouldn't heal, then I had a further 4 over the course of 4 years, which seemed to improve my Raynauds. You will be very closely monitored while the infusion is running, I remember my blood pressure being taken every 30 minutes, if you have any sign of a headache or a big drop in blood pressure the pause the infusion and give you a break before re-starting. It did make me real a bit woozy I managed to get a bed in the day unit. Everyone was very attentive as I believe is isn't an everyday drug used. Goodluck hope it makes a positive difference for you, it did for me Donna