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Posted 3/2/2011 12:37 AM (GMT 0)
Hi--

After almost 20 years of worsening steatohepatitis following intron-a therapy, along with a host of autoimmune problems, now my AMA is positive and I guess the liver enzymes support it. They were SURE I had PBC when they found Hep C antibodies, but the AMA was negative repeatedly, though my ANA was positive. So they give me hep c tx and I got so so so sick. Now, after all this time the AMA shows up. Gee wiz. Only goes to show, something new happens every day when you're sick.  Is there anyone here with this condition? 

Now I got to go through the merry-go-round of docs, or money-go-round, and I had just sworn off them for as long as humanly possible, since they just give refills and send me home.  How serious is this?  I'm already pretty sick. Is it worth exploring since my liver is as full of fat as it possibly can be and has been that way for a long while now and nothing is getting better?  The GI they sent me to already told me 7 years ago that I'm "decompensating".  Is there anything they can do, really, unless I'm really sick, besides immunosuppressants, which I'm on already for sjogrens?  I'm hooked in with a transplant place but my meld is likely way low because my bilirubin is often zero, which I don't understand because I'm often yellow.

Thanks in advance for any help you can give in this.  on the good side I've been PCR neg for almost 20 years now, even taking immunosuppressants and at times massive doses of steroids. So there is hope when you take care of yourself and be careful to the point of paranoia.

 

Posted 3/2/2011 1:06 AM (GMT 0)

Cured4, I'm so sorry to hear of this latest development.  We have a couple of people with PBC...one is a caregiver.  Dany, a co-moderator here, has AIH and is quite knowledgeable about autoimmune diseases.  Hopefully, she will be along later to answer your questions.

Hugs,

Connie

Posted 3/2/2011 2:50 AM (GMT 0)
Hi Cured4real?,

The common treatment of PBC is Ursodiol.  It's a bile acid and helps keep the bile thin so it doesn't back up and cause damage to the liver.  Best to get on that one even with the fatty liver.  Will probably help you feel better.  I take it because my hepatologist thought my azathioprine was causing cholestasis and I didn't want to decrease my dose and risk a flare...so I asked about the usro and it worked at decreasing my bilirubin! 

Have you been doing anything to decrease the fat in your liver?

Charlie might write in.  His wife has PBC/AIH overlap.  She had oral sores but I can't remember if they were from Sjogren's.

Please don't give up hope.  I know this sounds cliche but things could really be worse.  It sounds like you may not be so confident in your doctors either.  Can you see a different one?  Do you see a hepatologist or just a GI?  If you can get in to a hepatologist, then you should.

Posted 3/2/2011 3:45 AM (GMT 0)
Thanks Dany and Connie--
I don't know why my bilirubin is coming out zero, you can see my eyes are yellow and I look yellow/tan. I have some degree of porphyria so I don't go out during the day alot, so its not a tan!

I'm usually on plaquenil and I don't know if that would even work on me. They told me there is no way I can take methotrexate, and I don't want to try it I have so much problems with meds. I have diabetes too, and am so sick of steroids.

I will have to ask about the ursodiol. I have a selection of docs, just costs alot and I'm getting to where I can't afford it since copays went up on medicare. I make 50 too much for medicaid, so I'm basically messed up. they switched my hepatologist at Mayo, and I haven't seen the new one ever but I'm sure he's good. I probably should go there. I need to see the local gi too though, since if some emergency happens, he's who I get. I'm worried about the pain level I'm having under my ribs. Feels like passing stones, only on the left side up under the ribs. I take half an aspirin (I'm allowed that much, the pain from the stones makes my heart hurt sometimes, the aspirin helps, cardiologist knows, ai heart, atrophy on one side) and put a heating pad on. After an hour, it goes away and Im okay. I guess you can get stones lots of places.

This whole thing was started because my mom came up with IPMN pancreatic cancer and this was part of my screening. Do you know if this relates?

Ive had a sore on my jawline for about three weeks now. The sores have started in the last few years just one occasionally, but I get sick with them. I thought they were spider bites. Is this part of liver disease, sores? I also get them in my mouth sometimes.

Thanks for the help. This is what happens off my immunosuppressants. I think I can get better once Im' back on them and the other drugs. I used to tell them prednisone made my liver feel better and my stomach swelling go down. I get bad side effects though.
Posted 3/2/2011 5:54 AM (GMT 0)
Wow Marji!

You are definitely going through a lot!  I searched up all your meds and Plaquenil and Restasis can both cause sores.  So maybe it's medication induced.  It's great that you do see someone at Mayo.  If you can swing it now,  seeing the new hepatologist might get you on a better path with this new diagnosis.  Maybe he can review your med list too to make sure they are all where they should be.  Maybe there's something that can be changed to lessen the load on your liver and still maintain your health with your other on-going illnesses.

I've got to tuck my daughter in but I'll give it some more thought.

 

Posted 3/2/2011 5:07 PM (GMT 0)

My wife has ESLD due to AIH/PBC, and also suffers from  steroid induced type 1 diabetes, along with Sjogrens syndrome. She uses restasis for dry eyes and takes plaquenil for dry mouth, and has multiple episodes each year of mouth sores. We've have never been told that the mouth sores may be drug induced, however I will ask her primary care physician about this on her next visit. There is a yahoo group named" PBC Digest" that I would encourage anyone who is a care-giver or patient of PBC to join. Like this forum, they offer a tremendous amout of information regarding PBC, and even host seminars each year.

Charlie

Posted 3/2/2011 10:12 PM (GMT 0)
Thank you so much Charlie and Dany.
I wonder if my connective tissue disease is part of the PBC. I have to take restasis off there, I'm allergic to it I found out, I got styes all in my eye sockets. I think I have or had some kind of infection in my sinuses, conjuctiva and mouth, like shingles or something, and that the restasis caused it to act up. I can't use Flonase for the same reason anymore. Both my mom and I get sores in and around our mouth and on the belly and flanks, it could be discoid lesions maybe. They take months to heal completely and tend to scar for a long while.

My eyes cleared up after stopping the restasis. I've been off plaquenil temporarily for about six months now and the sores are the same. My condition has worsened more rapidly off it, so I think the plaquenil was helping about 20-30 percent slowing in progression, sometimes more.

Is Plaquenil used to treat PBC? I'm allergic to a bunch of meds and for some reason tolerate plaquenil. I will edit my signature.

Also, my asthma/COPD is really acting up, does it relate to the liver? I have a nebulizer now. I don't have allergic asthma they say, just scarring from past cases of pneumonia that they don't know why I got.
Posted 3/3/2011 4:07 PM (GMT 0)
In the past couple of years my wife has seen a multitude of specialists seeking some relief for her dry mouth and dry eyes (both symptoms of Sjogrens). An ear/nose/throat specialist prescribed "Evoxac" 30 mg, to be taken three times daily which helped a little. She was eventually referred to a Rheumatologist who prescribed plaquenil. This drug is primarily used to treat malaria, however it has been found to help patients suffering from auto-immune diseases, including Sjogrens. She takes 200mg twice daily and has seen a remarkable improvement in the moisture in her mouth by taking both of these drugs. In addition to Restasis, she also takes a prescription named "Tears Again Hydrate soft", two capsules twice daily for her dry eyes. Since she began taking these prescriptions, the moisture in her eyes has returned.

It seems that once we get one symptom under control, another pops up. She has been spared "itching," in the last couple of years, however now about two nights a week it's about to drive her nuts. The itching only occurs around bedtime, and sometimes will last until the wee hours of the morning. Her Hepatologist prescribed a powder that you disolve in water to treat it (can't remember the name), however the taste is so horrible, she just refuses to take it, and instead takes benadryl.

She has been diagnosed with AIH/PBC since 1997, and had been treated by a Gastroenterologist until stage 4, and was then referred to a Hepatologist. She has been ESLD for three years now, and is on the transplant list in the Baylor system here in the Dallas/Fort Worth, Tx area.

I am her primary care-giver, and like the rest of the care-givers on this list have been at my wits end many many times. Somehow we manage to climb and eventualy go over each hurdle and go on with life. This list has been a life-saver for me, as I really have no on else who fully understands what we both go through each week.

May God bless each and every one of you.

Charlie

 

Posted 3/4/2011 4:32 AM (GMT 0)
Thanks Charlie! I'm so sorry you and your wife are going through this. I understand what your wife is going through, at least in part. The autoimmune part is just crazy, one thing after another going wrong. On top of the liver, its too much. I take Evoxac, although can't take it three times a day and it helps alot. Another problem with sjogrens is a dry gi tract and the evoxac helps. I use drops now since I can no longer use restasis, they work pretty well but are really expensive and over the counter. I think the powder is Questran, I take that and sometimes benedryl. I itch primarily at night or after a shower sometimes. A little orange juice helps with the questran if she can have it. I think its supposed to be orange flavored or something, but its not right, not at all. I choke it down with as little liquid as possible and then follow it with lots of water or something to get the flavor out.

I have lots of skin issues, vitiligo, mild scleroderma on the arms at times, rheumatoid changes starting in the fingers, psoriatic arthritis in knees and elbows--I joked they could make an autoimmune skin chart just from photographing me! I use voltaren gel on my arms to try to soften the muscles of my arms. I have a number of creams to use but they are not worth the side effects.

I don't have a stage for my illness. They don't want to poke any more holes in my liver. Last bx showed severe steatohepatitis, but they didn't know I had this then and it was years ago. My doc told me they can't predict what could cause me to go into liver failure or when it could happen. I feel blessed that it hasn't gotten alot worse. My meld was low last time I got results, now they are bugging me to run tests because my enzymes are up. I get the low down in a few weeks. I've had some ultrasounds, showed fat as usual, then last one showed coarsened texture. I was put on INH for nine months and that triggered the liver getting worse, it was kind of in remission. I got through it though. I've been sick since 92.

I will pray for you and your wife and hope that she gets what she needs and things go smoothly, and you get what you need as well.

Marji
Posted 3/4/2011 5:27 PM (GMT 0)

Hi Marji,

When you see them please speak to them about the ursodiol.  I know it's yet another treatment but it'll help your bile flow.  The bile backing up will cause more liver damage.  Also speak to them (since you go to Mayo) about an MRE (Magnetic Resonance Elastography).  If you Google it, it's a cool diagnostic, non-invasive tool only available at Mayo.

Posted 3/4/2011 6:26 PM (GMT 0)

I believe I've had the MRE at least once.  I remember them placing a small pad on my upper tummy/liver area.  I believe this was AFTER surgery to remove the right lobe.

Hugs,

Connie

Posted 3/4/2011 7:44 PM (GMT 0)
yup, it says it's a small pad that sends vibrations through and it measures the stiffness of the tissue.  They use it to measure degree of fibrosis.  So after your surgery they were probably looking to make sure the entire mass was gone as it would have vibrated through the mass at a different rate than the normal liver tissue.  Pretty cool!
Posted 3/4/2011 9:48 PM (GMT 0)

Perhaps also checking the left lobe that remained, though they did a biopsy of that lobe while I was still under anesthesia from the surgery.  I didn't even know it until I read the surgical report.  The biopsy showed cirrhosis.

Hugs,

Connie

Posted 3/7/2011 3:19 AM (GMT 0)
Wow, that thing sounds cool! Thanks Dany and Connie!

I have a lot of fat around my abdomen and ribcage and it is sore to the touch (probably the lymph nodes working overtime), anyway, they have to push down hard with the ultrasound hard thingy and it hurts bad. I'm crying when I get it done. They had me set up for an ultrasound and labs and I had to cancel, no money to get there. And they wanted me to pay some, which couldn't happen. My local doc did the labs, though they still can't seem to remember the PT and INR. Hopefully this time they did. I think she said so.

I will call and talk to the hepatologist's nurse and maybe tell her the new developments so I only have to go down once, or write a letter if need be.

The bad thing is that I had to break down and go back on my immunosuppressants last night. I had a slightly rich meal of dark meat chicken and risotto and it was too rich and I felt sick all night, legs aching. My skins a mess too, and asthma bad so probably not a bad thing. The plaquenil is already helping some, I feel, probably psychological mostly. I got quick relief from it before when I first started it. I say bad because when I take it, my labs don't show what is wrong. If they repeat tests, it may not come out the same.

I hope they got what they needed from that AMA since every time they check it while I'm on plaquenil, it is not high enough to be positive, which is a good thing I guess? My liver still seems to get damaged anyway.

Well, this new test sounds like just the right thing. I will mention it.
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