Long Road But Learning To Manage

I'm a 27yr old female who was recently diagnosed with AH. The story all begins over a year ago, when I was forced to see a physician. My boyfriend and best friend were concerned about signs of hypoglycemia. Doctor immediately put me on a no carb diet, despite not having blood work results(and I'm only a 119lbs, no carbs for a two week span resulted in a 5lb drop). Two weeks later I'm back in her office, results were in : blood sugar was a little low, but the main cause for concern liver enzymes were in the mid 300's. With all her infinite Doctor wisdom she said "hmmmm stay on your diet, come back for more blood work next week". Two and a half months later, 6 sets of blood work, now a 110 lbs, and liver enzymes well over 700, I still didn't know what was wrong and constantly felt like a truck had ran over me. My condition was now constantly interfering with my life, especially work. Finally I was sent to GI, 5 months later, blood work every week($30 co pay each time), 1 colonoscopy, 1 endoscopy, 1 endocrinologist visit, and countless times answering the same questions(no I don't do drugs, no I don't drink, no I never had mono, no no no), countless days of work missed, and enzyme numbers now at 1600's, I still had no idea what was wrong. The GI now realized he needed a second opinion, and I was well on my way to his colleagues office. Lets tact on, another 6 months of blood work and watching and heavy Co pay fees, Dr. GI FINALLY sends me to do a liver biopsy. Surprise Surprise, it turns out you weren't making up your symptoms, you have AH. Now what, I ask, and why did it take over a year to get to this point, I requested a liver biopsy to be done 8 months prior and was told it wasn't needed.
So now here I am, 27years old, on Entocort for the next two-three years($250 for a months’ supply), told not to have children for the time being and if I do get pregnant I have to consider terminating. My numbers are getting lower and I'm able to get out of bed more often than before, but the side effects of the medicine seem to be just as bad as the disease itself. Glucose levels are still low, now have higher cholesterol, severe acne, joint pain, swelling of my feet and hands, constant urination and haven't had a good night’s sleep in over a year. I'm learning to manage, but this is a long road and I feel like no one understand. Never think you'll ever have to go through this.
JSpain JSpain
26-30, F
1 Response Jul 19, 2010

I was diagnosed in 2002 when I was 16. I experienced the sever acne, joint pain, weight gain, constant urination and sleepless nights. Things got better after I was taken of the prednisolone. It took a couple of years for that to happen but things got better. Eventually when the steroids were out of my system my weight went down again, I lost my moon face and don't have acne on the face anymore. I still get back acne but it isn't as bad. When I moved to Tas from Vic, and changed gastroenterologists, I was told I was on 3 times the dosage I was suppose to be on, also I changed from azathiaprine to mecaptopurine and am coping a lot better, less pains than I use to have - although perhaps I am just more use to it now.<br />
I would get a second opinion on your treatment just to be sure you're not going through all the pains for nothing.<br />
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Hope this helps.