Swelling of lover limbs

Retroperitoneal Fibrosis
#1

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!!!

#2

In almost every article regarding RF, swelling of a leg or legs is mentioned. Here are some links that mention the symptom.


http://www.mydr.com.au/default.asp?Article=4339
http://www.umm.edu/ency/article/000463all.htm

Here are links that document tamoxifen as a treatment modality for RF.



http://www.umm.edu/ency/article/000463all.htm

According to my nephrologist, Dr. Ram V. Patak, who has done considerable research on RF, tamoxifen is approved for use for RF in Europe. In the United States, to get the drug approved for treatment is to expensive for drug companies to bother. Doctors simply prescribe as off lable use here.

These articles are available to lay people. Dr. Patak tells me there is much more available to medical professionals just on the internet. Many publications document that swelling of one leg is often a symptom found with RF.

It is widely documented that if surgery can’t be done to remove some or all of the mass of fibrous tissue, physicians may also treat the disease with steroids such as prednisone. Others have found immunosuppressive drugs such as azathioprine (Imuran), cyclophosphamide (Cytoxan), or tamoxifen to be helpful for treatment.

Hope this info is helpful for you,
Susan