Iloprost infusion

[Natbec4541]

I’ve been in hospital for 5 days having iloprost infusion for my digital ulcers and I’m hoping it might benefit my pulmonary hypertension . I’m new to all of this as only just had diagnosis but no one could tell me how long it would take to work and I wondered if others who’ve had the infusion had more info. Thanks

[Lupiknits]

I’ve had Iloprost infusions several times now. Each session is 3 days for me. They were quarterly, but will now be every other month. If it helps, I hate them, but it’s worth it!

One frustrating difficulty is my familial low BP makes me unable to get much in, but as the nurses are now used to the Iloprost making my blood pressure drop lower without me hitting the deck, they up the dose more. They now recognise that I know all the compensation hacks for LBP after over 40yrs.

Frustrating for me, but it improves things for a few weeks. All the meds previously tried definitely and dangerously made me hit the deck.

As far as I know my lungs are OK, so I can’t help there.

I do hope your infusions help. I know they have been great for many others.

[Natbec4541 in reply to Lupiknits]

Thanks so much sorry you have to have it so often as takes over your life when in hospital and I have to watch blood pressure too. Need to drink more water but find when I’m breathing fast it’s hard to drink anything. Hope it’s all helping you as I’m just coming to terms with being on oxygen as pulmonary hypertension and scarring in lungs. Life has taken on a completely different slant but waiting for referral to Sheffield hospital.

[Lupiknits in reply to Natbec4541]

I do hope you get help soon. I agree the water is important and I’m so sorry it’s hard for you. During the infusions I can glug it down, which helps