Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 I bet you all tremble when you see an e-mail or a posting from me. Even I am tired of the strangeness that has taken over my body. Yesterday and even worse today my feet are swollen huge all the way up to my knees. They don't really hurt but feel tight and boy do they look odd. My right hand is pretty swollen too but that happens every time I have a SLE flare so I take that in stride. Has anyone else who has PF and an autoimmune disease had this happen. I called my primary first thing this morning and haven't heard back yet. If ya'll have any ideas or comments they would be most appreciated. Blood sugar is fine by the way. Sunny, PF '09, SLE/Sjogrens/Arthritis '04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 Sunny, I had severe swelling in my legs and face in Sept 07 after I had a 500 mg steroid treatment as an outpatient for 3 days to fight lung rejection. Also, when I was on Lyrica for pain in my leg I had swelling in my legs every day. My doctor prescribed Lassix (diuretic) but it is strong, can make your potasium fall and the lung doctor does not want me on it on a regular basis because it is not good for your kidneys. Temporary is fine if your doctor will agree. On regular basis I take 25 mg HCTZ, but now I am only on 5 mg of Prednisone and have been on just 3 mg of Prograff twice a day for a while. Doc took me off of Cell Cept and Valcyte when my WBC fell to a critical 0.6, and I am not back on CellCept yet even though my WBC came back up to normal; but I have been feeling good since I have been doing my physical therapy exercises in the water every day here in HI since April 13th (going home May 18th). I am even able to swim now, but the current pulled me out a bit this afternoon so I was worn out getting back to shore even though I had a boogie board. My left lung is the transplanted one, but my right one still has the IPF which I think is why I get out of breath when I am physically active. Sure wish they would hurry up and find a cure for PF - don't we all! :-) Aloha, Judy IPF 11/06 TX 8/07 > > I bet you all tremble when you see an e-mail or a posting from me. Even I am tired of the strangeness that has taken over my body. Yesterday and even worse today my feet are swollen huge all the way up to my knees. They don't really hurt but feel tight and boy do they look odd. My right hand is pretty swollen too but that happens every time I have a SLE flare so I take that in stride. Has anyone else who has PF and an autoimmune disease had this happen. I called my primary first thing this morning and haven't heard back yet. If ya'll have any ideas or comments they would be most appreciated. Blood sugar is fine by the way. > > Sunny, PF '09, SLE/Sjogrens/Arthritis '04 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 Sunny, I had severe swelling in my legs and face in Sept 07 after I had a 500 mg steroid treatment as an outpatient for 3 days to fight lung rejection. Also, when I was on Lyrica for pain in my leg I had swelling in my legs every day. My doctor prescribed Lassix (diuretic) but it is strong, can make your potasium fall and the lung doctor does not want me on it on a regular basis because it is not good for your kidneys. Temporary is fine if your doctor will agree. On regular basis I take 25 mg HCTZ, but now I am only on 5 mg of Prednisone and have been on just 3 mg of Prograff twice a day for a while. Doc took me off of Cell Cept and Valcyte when my WBC fell to a critical 0.6, and I am not back on CellCept yet even though my WBC came back up to normal; but I have been feeling good since I have been doing my physical therapy exercises in the water every day here in HI since April 13th (going home May 18th). I am even able to swim now, but the current pulled me out a bit this afternoon so I was worn out getting back to shore even though I had a boogie board. My left lung is the transplanted one, but my right one still has the IPF which I think is why I get out of breath when I am physically active. Sure wish they would hurry up and find a cure for PF - don't we all! :-) Aloha, Judy IPF 11/06 TX 8/07 > > I bet you all tremble when you see an e-mail or a posting from me. Even I am tired of the strangeness that has taken over my body. Yesterday and even worse today my feet are swollen huge all the way up to my knees. They don't really hurt but feel tight and boy do they look odd. My right hand is pretty swollen too but that happens every time I have a SLE flare so I take that in stride. Has anyone else who has PF and an autoimmune disease had this happen. I called my primary first thing this morning and haven't heard back yet. If ya'll have any ideas or comments they would be most appreciated. Blood sugar is fine by the way. > > Sunny, PF '09, SLE/Sjogrens/Arthritis '04 > Quote Link to comment Share on other sites More sharing options...
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