It's Judy, I've changed my handle or whatever you call it. LOL.. to judyinky. I live in Louisvillle, KY. I want to thank you who have written to me. You have a source of support and encouragement.
I have been having a some difficult days. I think it is the extra drop in the prednisone to 25. Today I took 30. MY doctor gave me the liberty to go back and forth a few days right after the drop if I was feeling too fatigued or emotionally unable to handle the moods.
It's not an easy thing from all I read getting the body and the adrenal system back in check after prednisone, if that ever really happens. I have also read that so many relapse while trying to titrate off of prednisone. One of my friends in my support group on yahoo wrote me that she was in remission for 3 years, and now has had a relapse. She is on 40 of prednisone and is heartbroken. She said some interesting things about what her doctor discussed with her about the relapse. I will copy and post that. I may be valuable to someone.
I know that dangers of prednisone, and I already have diabetes because it. Hopefully, that will go away as I decrease the prednisone, if my pancreas is healthy enough to handle things. I'm praying it is. I have a feeling because of some symtoms I had before I even started prednisone, that I was borderline diabetic, or was already an undiagnosed type 2 diabetic. One, my eye sight was blurry for some time, two, I was very thirsty and hungry all the time, 3, I had to pee all the time, and who knows if the fatigue was from the AIH, the Psoriatic Arthritis, or a combo including possible diabetes. Aslo, I have read that if you get it and were predisposed because of heredity ( brother, aunt) , that it might now go away once the prednisone has stopped. I guess I will deal with that when the time comes.
Until then I continue to take it one day at a time. I am so glad I have found this place to vent and to learn. Hugs to all of you all. I would like very much to get as much info as possible and even emailed to me. It could be something very valuable that could save me a transplant, and or my life. I was reading s letter my GA wrote to my MD. yesterday. I have bridging neucrosis. And, he said, "she is well on her way to cirrhosis." So, I want to keep a close eye on things myself, possibly have my MD, who is so very supportive, run blood work once weekly if necessary.
I do trust the doctors that I have now to a degree. But it is not their body, it is mine. MY GA has Crohns disease. So I feel he has expertise in AI diseases. BUT, I need to go to a hepatologist, I have been told this over and over by my yahoo support group for AIH. So, I'm trying to find one in this city at the University of Louisvillle teaching hospital. Anyone have any ideas of how to find a good one. MY MD told me one not to go to
Of course that is between us and I do not know why, but I will take her word for it. She is pretty cool. She is checking out the University of Louisville school of Medicine for a Hepatologist for me if I decide to change. She works with me very closely with all my health issues and I am so grateful that I changed doctors when I did.
I won't put my life into a doctor's hands again. My other doctor knew my enzymes were slightly elavated 3-4 years ago. He told me it was probably the medication I was on for depression, and that he would watch it. Well, why did he not pursue this, I wonder??? I wasn't seeing him on a regular basis for anythng except colds, blood pressure. I also had joint pain and psoriaisis, and of course, horrible fatigue. Everytime he did blood, he saw them. He did do hep tests, all negative.
Well, why did he not pursue that???? Everytime I had blood work, he would say, they are a little higher. We'll keep an eye on them. I may have to make you an appointment with a GA to check that out. I'm so glad a friend of mine advised me to go to her MD.
He was treating me with PAIN PILLs,(with elavated liver enzymes) for the arthritis, CRAZY HUH!!! in combination with NSAI drugs, And the fatigue he passed off as depression. GEEZZZ!!! I was too fatigued to much care I guess until I changed doctors.
When my new MD heard listened to me, and really heard me, she went into action.
. I remerbering saying to her, "Please help me. I am so very sick and I do not know why."
And, she did!!
She got me in to see a GA quicky as soon as she saw my tests. Of course there was the ultrasound, tests and more tests, the biopsy, the worry. ect.
I had been having horrible joint pain for 2 years also, being treated for arthritis and psoriisis seperately. She told me of a condition known as Psoriatic Arthritis. It is possible that you may have it. She called my Dermatologist, and made me an appoinatment I had not really complained to about joint pain. She made also made an appointment with a Rheumatologist too. I had recently read on the internet about PA, her, after talking to her, we both pretty sure that we were right. The dermatologist and Rheumatologist confirmed it. And, of course, it's also autoimmune.
So, that is how I found out why I had been so fatigued and ill for 3-4 years, and I had began to look I had lepresy in places. Also, the joints in my wrists, fingers, toes, feet were almost constantly in pain. My dermatolotist just started me on a new medicine called Humira a month ago which is used to treat this condition. He and my GA wanted to wait until I was weaning off the prednisone.
I have gone on and on and on. I can't thank you enough for being here to hear me. I guess I just needed this time for me to be heard and I amfeeling very selfish today. I promise not to do this again.
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."