I am now four weeks in from treatment with iloprost and the flares are beginning to reappear. I am, whilst typing this update, flaring in my right foot and the last two nights have also had flaring with just one foot affected. Not full on with all the symptoms and they are bearable in that they aren't really painful. Just the heat/swelling/tingling /buzzing but not the really full on burning and stinging. I was told that the iloprost helped with the pain side of things so I will be content with that and consider the last few weeks as a wonderful bonus in that none of the usual symptoms reared their heads for a good while. It was worth it for that alone.
I was seen at the Royal Free last Thursday 21st March, but due to a mix up of appointments they had no record of it despite the letter I had from them stating the date and time. I was treated very courteously and seen quickly by a Dr Fonseca who used the appointment as a follow up to my recent treatment. She then arranged for me to have a second treatment with iloprost in September with a follow up in December. I asked what the timescale was for the treatments effectiveness but she said that EM was a bit of an unknow quantitiy compared to Reynauds about which more is known. It wasn't until the next day that the flares started again. At least I know that I will have a bit of respite again later in the year which is cheering news.
Who knows, perhaps the flares will settle down and not be too regular, I can only hope.
I shall update this blog every so often to keep a record of how things are going.
Hi Tilly I also had the iloprost treatment at the royal free. It’s the second time I’ve had it. But this time it seems to of made mine worse not sure what Dr Fonseca is trying this year as she wanted me to go back for a second lot of iloprost in October but professor Denton said no. It’s very unfortunate that there isn’t a set cure for this but fingers crossed they find something.
It was the first time I had seen Dr. Fonseca. I wonder, how did the first treatment go? How long since you had the second treatment and why did Prof. Denton say no to any more? You said Dr.Fonseca wanted you to have a second lot of iloprost but you have already had a second round it seems. Or was it a 2nd time in one year? Sorry to be pedantic but being new to iloprost I am interested in any experiences from others who have had it before.
I do know of one patient who became allergic to it. Are you Primary or Secondary EM? What medications are you on at present as your profile doesn't mention any.
I would be grateful for any input on the iloprost subject. Like you, I hope a cure or at the very least a medication that really helps relieve symptoms greatly is found soon. Such a life altering, misery making complaint.
Thanks for posting this. Could I ask whether you have EM alone (bad enough!) or EM with Rheumatoid Arthritis or Raynauds? I ask as there was some talk of giving me Iloprost but it said it was vasodilatory so that seemed it would make the EM worse? Also have you been offered other treatments for EM at the Royal free. I am feeling really disappointed as they don't seem willing to offer me anything although they acknowledge my EM is severe.