Aloha everyone! Long story short it took my PCP's nurse practitioner to recommend a blood test after 4 months of my persistent headache not going away after taking every over the counter and Rx headache/migraine medicine under the sun with little to no lasting relief and the nurse prac recognizing (thankfully!) that the headache/migraine may be a symptom of something greater.
Fast forward 4 months and a few weeks after taking the blood test, an MRI and a scan and eventually a liver biopsy I'm told I had AIH (which I didn't know existed prior to having it!) and needed to see a specialist. I was admitted for a week after seeing him and told I had 20% liver cirrhosis. Put on 60 mg of Pred in the hospital along with 20 mg Protonix and 20 mg Imuran and initially saw positive changes.
My appetite returned, sleepless nights seemed to be behind me and I had a 'happy' outlook on life. That was in April, now 4 months later I'm back to joint and bodyaches, headache returned almost 2 weeks after being out of the hospital and I barely eat or sleep yet have gained 30 lbs. (which fluctuates week to week it seems) and have a bad attitude with mild depression.
I'm now off the imuran but remain on the Pred and Protonix and now told will need to supplement it with 500 mg of Cellcept (though I'm not on a transplant list nor due to receive one that i know of). I'm told because i've had unstable reactions to the Pred and they can't seem to taper me off (numbers jump up when they try to taper even 5.0 mg) they're hoping this will help. I'm confused on their methods since in all that i've read it seems Cellcept is for those who have had transplants and at what seems like a high dosage to me is now going to be ADDED to the pred until they can taper it down from its current dose.
I've started seeing a new PCP who recommended I see a Psychologist since I've been struggling to cope with AIH and every day my 'symptoms' are new and my family doesn't know how to be caregivers to me when I can't communicate what i need or how I'm feeling when it seems to change daily.
Living here in Hawaii there isn't a 'support group' which was another reason I started see a psychologist. Despite only a few sessions, I fear that unless they're in the 'know' of what AIH is and how to assist me in dealing with that, they'll just be another resource that can't really understand what I'm going through and I'm finding this forum more valuable since though our experiences differ, you're able to at least relate to where I'm at or what I'm going through.
Lastly, if anyone is in a similar predicament regarding the need to take Cellcept (generic version, Mycophenolate Mofetil) can you let me know your experiences, thoughts about
taking it along with Prednisone?
Prior to all this i barely got sick so I think my body is rejecting the meds. I'd prefer a 2nd opinion and a natural route but here in HI there are limited experienced doctors I'm aware of outside of the office of the top Hep Dr. I already see on island and seems the natural route is discouraged.
Hopefully Cellcept will counter my current 'sicky, achy, nausea, constant-headache' feeling which is what the doctors are hoping for. Any/all help is greatly appreciated. Thank Goodness God sustains me through this all!
Living in HI with saving grace, appreciate the feedback, thank you in advance
ALOHA..I changed your title so we would known it was an AIH post. Ill write more when I get home. We had post TP clinic today. Mama Lama-Moderator.
Post Edited By Moderator (MamaLama) : 8/28/2014 2:46:25 PM (GMT-6)