My husband has RPF and four years ago his one leg started swelling. It has been that way ever since. The doctors here in Denmark where we live don’t think it has anything to do with the RPF but they can’t tell us what else it could be. Except there are a growth pressing agains a blood vessel to the leg.
Two years ago his testicle started swelling too. He had surgery twice and it hasen’t helped much. In stead it seems like it is now filled with scar tissue.
We brought the RPF up again and got the same answer. It’s not RPF!
Havs anybody here had the same problems with swellings? We are getting pretty frustrated as we are standing in a dead end here. He hasen’t been in any treatment since he got the diagnosis back in 2001 when the tubes to his kidneys were covered with fibrosis. He recieved prednisolone back then.
I’m worried he is not on any medication because I’m convinced the swellings are related to RPF. Since the swellings occured in a period of time where the doctors have told us his disease isnt active I’m afraid he is getting more and more sick without anything beeing done.
Another problem we have is we can’t get the doctors to give him or even try anything else than prednisolone. I brought them an article about tamoxifen wich got dismissed as the drug was experimental and there were no evidence it worked.
I hope there are somebody out there who can help us…
And thanks to the people behind this forum. What a great idea this is!!!