Recently diagnosed with Autoimmune Hepatitis - have developed blood spots on legs - need your help.

Thank you Rick.  I really appreciate hearing from you.  Looking back, I think I started with symptoms of AIH in 2008.  I had been on 2 types of cholestrol medication for some time.  Started with the itching, psoriasis on elbows and knees.  In 2009, my doctor took me off one of meds.  I stayed on lipitor.  Through 2010 everything seemed to get slowly worse.   I did have a cat scan of my liver where the doctor did see some minor scarring - my gall bladder, however, did have to come out and during the procedure, a biopsy was taken of the liver.  From that biopsy and blood tests came the diagnosis.   The blood spots on my legs had been very minor from December 2010 until last week.  Within a couple of days, my hands swelled up, wrists, elbows, shoulders, knees, feet, ankles all were so sore I could hardly move.  I saw my GP who read the results of the biopsy, ordered blood tests and called to tell me the diagnosis.  I was immediately put on 60 prednosone until I see the liver doctor next Monday.  I'm pretty scared about what's going on with my legs now.  They do ache.  I have a job where I do sit most of the day and type, however, I've gotten ergonomic things to help me.  I guess I'm just scared right now with wondering what's to come next.  I have some of the side effects of the prednosone, but they are tolerable.  I'm just so tired and depressed.  Guess that goes with the territory?!  Thanks for being there for me.  Donna 

Hi Donna,

Welcome to Healing Well!  I know this sounds cliche especially when first diagnosed but try not to stress out.  Stress makes all autoimmune diseases worse.

Did they take you off the Lipitor?  It is not a friend to a liver.  They should find a different cholesterol lowering medication for you.  Also, you mentioned having psoriatic skin problems before.  Do you have psoriasis?  If you do, you may be having a flare of that which is coinciding with your AIH flare.

Being on pred you should try to get up and walk during the day.  That may also help your legs.  When you see the hepatologist, he'll likely put you on an immunosuppressant as well as the pred.  This will be needed to help you start weaning off the pred.  If you have psoriasis, it may help with that too.  Did the biopsy say anything about cirrhosis?  You said the CT scan showed minor scarring...the biopsy would have confirmed any suspicions. 

Also, they may prescribe a diuretic to help with water retention that the pred will cause.  Pred also causes thinning of the skin.  Obviously, you'll be bringing up what's happening with your legs to the hepatologist.  It would be best to write down some questions in a notebook and bring it with you to your appointment.  You can write the answers he/she gives you right there so you don't forget.  It may also be helpful to bring someone with you for an extra set of ears.  Definitely start documenting any weird symptoms or feelings so you can let the hep doc know.

Fatigue goes along with liver disease. However, your pred will soon kick in full force and you may notice some extra "energy".  It is an excitability that the pred causes.  That in turn causes insomnia and mood swings extraordinaire!  You'll be able to speak to your hep doc if/when this happens.  They can prescribe some sleep aids to help with that for while you are on the higher doses.  There's weight gain and moon face and acne...and a bunch of others.  You may or may not get them.  You can search my old posts for my experiences with them.  The side effects usually go away by the time you get to 10mg pred.

I'll write more later and please ask ANY questions, no matter how odd you think they are

Donna,

Double check with the hepatologist as to what the biopsy said.  Cirrhosis is scarring.  You may have fibrosis which is a stage before cirrhosis but fully reversible.

Yup!  I ate a lot too.  A warning ahead of time probably would have been good to keep fruits and veggies (more so than normal) around so when the  munchy attacks hit, you grab for those more than the chocolate!  You should still have some of that too because sometimes you just need that to make you happy    I ended up gaining 45 lbs.  It's a lot of work to try to get it off while still on the pred so I have only recently really pushed to get it off and I'm 6 lbs away to my pre-sickness weight   You also need to be aware of fatty liver disease so eventually losing any pre sickness weight or pred weight will be very beneficial to taking care of your liver.

I, too, only have bloods drawn every 3 months and I see my hep every 6 months.  Initially, I saw him every month.  Then it switched to every 3 and the first time it went to every 6, I kinda missed him    I don't miss him much now but I am always eager to hear what my results are!

Please don't ever feel like you're alone in this journey.  Ask any questions you have, there are no stupid questions when you're dealing with the unknown.