Von Willebrands &Autoimmune Hepatitis

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New Member

Date Joined Aug 2009
Total Posts : 1
   Posted 8/27/2009 12:46 AM (GMT -7)   
Hi i am very new at this and very angry as i have to go to hospital on the 30th august to have a liver biopsy to work out whether i have Autoimmune Hepatitis,i would really like to write to someone that has been through this as i am very very scared,i have heard a lot of negative and not to much positive,i am already a little overweght and the treatment information i have read stipulates that it makes you have a moon face and put on weight,if anyone has any information on a medicine that doesn't do this please let me no.

Veteran Member

Date Joined Jan 2009
Total Posts : 832
   Posted 8/27/2009 1:48 PM (GMT -7)   
Dont worry about the moonface it is the least of your promblems ;)

You can take imuran or cellcept for AIH but you need the steroids first to get the liver enzymes to normal.

The biopsy is not big deal dos not hurt at all.
Do you have Von Willebrands ?
Is the doc okey with you having the biopsy because the liver has a lot of blood in it and it can bleed quit much.
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
Crohn's disease in December 2008 Then they changed it to UC in June 2009.
and Autoimmune Hepeatitis in July 2009

Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~

Julie A Roberts
New Member

Date Joined Sep 2009
Total Posts : 5
   Posted 9/15/2009 10:41 PM (GMT -7)   
AIH hs just been added to my diagnosis. Diagnosed based on elevated liver enzymes and very high AMSA, AMA, and ANA and by liver biopsy. I cannot take any prednisone due to severe steroid psychosis. Suggested interventions have not worked and I very highly reactive. I have to start treatment says my doctor. He has no studies to back up imuran only. He was waiting for a repeat of enzymes and AMSA...and it just came back today even higher. He wants to discuss treatment options.
Please see my signature re all of my known clotting disorder problems esp Factor V Leiden elevtion and Factor VIII Leiden Elevtion and others. I am reading about Willdebrand and it sounds like if i test for this; it will come back positive as well.
I have very heavy periods leading to anemia. My tubes are tied. I have gyn appt to discuss options beyond depoprovera suggested by my pcp.

Other diseases: progressive relapsing multiple sclerosis, fibromyalgia, behcets disease (inflammtory disease of blood vessels and veins), Alpha 1 antitrypsin (genetic disease affecting lungs and liver), hypothyroid, hashimotos, severe anxiety; PTSD;antiphospholipid disease, factor V Leiden elevtion factor Viii  elevtion, (i.e. on anticoagulants); migrines. partial focal seizure; tenazapam; osteopenia, degenerative disc disease, herniated L3,4,5; chronic pain,reflux, anxiety, auto immune hepatitis;anemia,  gallbladder disease (gallbladder being removed next 3 weeks); persistent elevated liver enzymes....I could go on but I'll stop here....
Meds: Aralast infusion weekly, copaxone, Dessicated thyroid, oxycodone, ativan, oxygen 12 hrs per day, dicylomine, rantidine, colchichine, lovenox
Vitamins and natural treatments; Dairy, gluten, sugar, egg, free; Chemical free cleaning products in home; all organic, Mega-Multi-Vitamin powder, vitamin D3, omega 3, milk thistle, chromium, slow FE Iron, potassium, magnesium, magnesium gel and flakes for bath, meditation, stretching, having faith, spirituality; uva ursi at times

Forum Moderator

Date Joined Apr 2007
Total Posts : 846
   Posted 9/17/2009 8:11 AM (GMT -7)   
Julie A Roberts,

I would suggest discussing hormone issues with your hepatologist and not your pcp. Ask your gyn about the Mirena IUD. I have it. My hep doc approved it even though it has hormone in it but it isn't systemic hormone so it's safe for the liver. It's stays in for 5 yrs and lessens bleeding...some stop entirely within 6 months. I only have some scant spotting with it. The hormones in the IUD keep the wall of the uterus thin so there really isn't a major shed which is what causes the bleeding. I had the regular copper IUD prior to that one and ended up with mild anemia from the excess bleeding...now, even with my AIH, anemia is gone.


As isergodur said, the side effects from the pred are your least important concern...death from untreated liver disease...the most important. Yes there are weight gain, moonface, acne, irritability issues with pred but they go away as you wean down. I went back to almost normal (except for extra weight) when I got down to the 10mg dose. Then you have to work on the weight. I'm almost back to pre-pred weight and have been very lucky as far as an aches that accompany being off it go. One thing to remember and if I ever flare and need to go back on the high doses...try as hard as you can to fight the munchies!! I didn't resist that much when I was on the high doses and I should have! Try to keep healthier snacks around for when the munchies hit so you don't go straight to the candy!

Don't fear the biopsy. I've heard from many who have had it the usual route (percutaneous) that it isn't that bad...search on this forum as I think we may have talked about it before so you could find old threads. There's also an aiHep Yahoo group you all could join. It's specifically for AIH people...lots if discussions there only focused on AIH. I had a transjugular biopsy as my liver was done trying to clot my blood so the risk of "bleeding out" was great. I had no problems with my biopsy.

Good luck with all your treatments!
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg

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