Thanks Put,
I have been on Pred for 18 months but we were hoping (Docs & I) we could get the Pred dose down lower with the help of the Tamoxifen. Maybe they will use something like azathioprine now - as you say, time will tell.
FYI,
Pam is on the Az… (Imuran) and it seems to be working (150mg/day). It took forever to get her preds down to 0 cause of withdrawal symptoms, but she’s been off for two months now. Imuran seems to have no side effects (knock on wood).
Put
Jan,
From what you’ve written so far, getting off of the Tamax… is a good thing!
There are other immunosuppressants that can/may/will do the same thing to the RF mass (retard/stop/reverse its growth).
Your RF Dr/Consultant will probably try another one as soon as immediate crises is resolved.
Hang in there.
Put (pmorgan7@sbcglobal.net)
Connecticut (USA)
husband of Pam (who has RF and other problems -her husband very often being one of them)
I have many dvts and also rf.
They say it is a genetic blood clotting condition giving me my clots but I always have wondered if there is a connection since I got them within a year and a half of rf. I also am on blood thinners for life. Coumadin doesnt work for me so I have to take shots. And yes, prednisone this your blood so they must adjust your blood thinners around that
Theresa
I was diagnosed with RPF almost 6 years ago. In addittion to the typical ureter involvement, my right ileac vein was essentially crushed, causing very poor circulation and swelling of the leg. About a year later, the circulation got worse. It may have been a DVT or just the vein completely closing and not allowing any blood flow. I was treated in the hospital as if there was a blood clot. When the treatment didn’t seem to be helping, a stent was put into the vein (a procedure referred to as “intervention radiology”). This improved the bood flow immediately. I continue to to take Coumadin (forever), Tamoxifen, and a small dose of Prednisone. I also wear a thigh-high compression stocking. Since the stent can’t do what a vein normally does (push blood to the heart), the compression stocking helps with this.
Hope this helps.