Prednisone the wonder drug?? Now that I have been on Prednisone for four + weeks I learned a little about it. The first week was all energy, feeling like new, just no real sleep, this was 60mg.
The second week was 40mg and suddenly I had a very distended abdomen, and I mean tight, painful. I saw Dr T. in Green bay and asked to go off the chelation drug until I got through the steroid treatment, he said no, "we have to get your iron down." He did send me for an ultrasound to see if it was fluid and how much. The report said it was fluid around my organs and not worth the risk to "tap" or drain it.
Third week same but 30 mg, hoping the swelling would get better as the dose dropped. No such luck.
Fourth week I saw Dr. Galvin in Chicago and my blood counts were improving, he looked at my abdomen and thought I should be tapped. He also want me to see a hepatologist and said in my home area is fine. I was now at 20mg, just going down to 15 mg. He said I continue the taper to ten mg for a week, then 5 mg and then off and we will see what happens.
I saw a Dr. in Manitowoc who has experience in liver transplants, Dr. Alvarez. I liked him and he said we would try water pills over the weekend and if there was no improvement He would tap me. My platelets were around 30,000 or very low, at the time and that was a consideration. He also ran labs and all my blood counts had improved even from Wed. when I saw Dr. Galvin. He said that my liver profile is not what he would normally see with iron overload, he said it would more match graft vs host. He wants to do a biopsy when my counts settle down.
Well the water pills worked, I'm slowly loosing my water belly and the fluid in my legs. I'm feeling much better, even with the belly issues. My thin lip that kept opening up to an open sore has thickened and healed. I see the best graft vs host eye doctor the second week in February and I will post after that. Oh, one more thing since going on prednisone. I could eat all day if I had the room in my stomach. I haven't had that much of an appetite for a long time:) I'm pretty sure our insurance has taken a hit out on me by this point lol. God bless Betty. This roller coaster is very trying for both of us.
God Bless,
Scott
Hi Scott,
ReplyDeleteThank you for sharing. Has gvhd of your liver been confirmed? Are you still on any anti rejection medications?...I am about 19 months post bone marrow transplant and developed gvhd of my liver 5 months after transplant. I was immediately put on prednisone and have been tapering ever since. I am currently taking 10 mg of prednisone daily. My liver numbers are mow looking great. My other liver medications include Ursodiol, Cellcept, and an antirejection drug called Rapamune (also shown to have anti cancer benefits!) I was previously on an anti rejection drug called Prograf (Tacrolimus), but have now switched over to the Rapamune. I am still on other meds like Acyclovir, Hydrocortisone, Bactrim, just to name a few, and oral maintenance chemo to keep this nasty cancer away forever!!
I am working with Dr. Hari at Froedtert in Milwaukee and cannot speak highly enough of him and the staff there! Truly a blessing to me.
I hope some of this info may be helpful to you. I, too, know how cumbersome post transplant related issues can be. I will continue to pray for you that improved health will soon come your way. I also hope that some of my information I shared may help you with some of your issues. Please feel free to contact me with any questions whatsoever.
God Bless,
D'Ann Buck
Glad to hear things are looking up for you. Stay strong the doctors will get this figured out. Oh before I forget I did check around no that compact vhs and no one I know has one, sorry. I guess getting an apatite back has to feel good. Stay in touch.
ReplyDeleteRick