My iloprost honeymoon is over

Since having iloprost treatment on 25th February I had 3 weeks of total remission of symptoms and then the flares started to gradually return during the next 3 to 4 weeks. The pain was not bad during this time but now as I write all symptoms have gradually made their way back and I am in the same full on EM mode as I was before the iloprost. So far it is usually in one foot/ankle at a time but on the odd occassion will be both The EM is gradually moving its way up from my foot and ankle to a little further up my leg. I did have some swelling from the iloprost which settled down but my legs are no longer the shape they used to be.

Because EM is so rare it is not known how long the effects of iloprost will last and as we are all different it may be some time before any criteria for efficacy can be applied. So it is a suck it and see situation for we EMers just now.

IIloprost is used for other problems, notably Raynauds and Scleroderma which are more commonly known about so more accurate records can be kept on its efficacy.

Would I have it done again. Most definitely. Any relief from the symptoms for even a short time is worth it. I am scheduled for another treatment in September (no date as yet) and I hope it works its magic again. I am not looking forward to the summer one little bit. Funny that, as I used to hate winter and the cold before all this started.