Hi.
I cannot find information on the web that is making sense to me. I hope someone here can help me with their experiences.
My mother is 74 and being treated for Giant Cell Arteritis (diagnosed by biopsy) for almost two years. Her pred. maxes at 60mg/day. In all this time they have not been able to bring this to it's normal range (there is also a "C" something test that reflects inflammation and that is abnormally high too), The SED goes as high as 120+ and her stable rate, when they could achieve it is in the 40s. All the info I find indicates that this should be "cured" with the steroid.
She has the pred. bloat but has also put on over 50 lbs and her abdomen is EXTREMELY distended. Hard as a rock and looks like she is about to deliver twins. It has been this was and growing for many months) Now she is nauseous all the time and fatigued and the headaches are almost constant and "a pain" shoots down her neck. Two Vicodan DS used to make them go away but now they don't. She has Ultracet too and that doesn't help either.
Her currrent bloodwork showed the Sed and "C" test as quite elevated again, she is on 30mg pred. now. Her ALT (Alkaline Phosatate?) is 300 and he has ordered tests that i couldn't read and one was GGT. Her gallbadder is gone and the only bone disorder she has had is artheritis.
She has not had energy forever and now cannot even go down the driveway to the mail box without stopping to rest/breathe.
I am scared to death for her and she quit letting me go to her appts with her, her sister takes her. She told me I talk too much (I ask questions and tell the symptioms she forgets). My Aunt to me that I can't go because mom says that I "tell on her" to the doctor.
I am afraid that she is ill to the point that she will not ever get better. I am so scared that she is heading for a painful death and I don't know how to talk to the dr. I am on her sheet as people that he can discuss her condition with so that is not a problem.
Any thing, advice, experiences, would be greatly appreciated.
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