[heavenly]

Hey there. Just thought it was time to drop in & give an update here. I was having some of the greatest months in years - even able to do some things I hadn't in years. My family & I did a major across country move and what a great blessing it's been for us all. A dream come true! I was able to do so many more things that I was so happy w/that. I was having so much fun and felt so much younger!

Then, I hit this wall of exhaustion, and started going thru some flareups. Was hoping it would just go away, so was trying to think positive and all. But, then liver & thyroid type symptoms came back and muscles have started to get weaker, and that flu-like type aching, etc.

Anyway, of course with our move, I had to find us all new docs, so I was definitely praying on that one. I know how important it is to get the RIGHT docs 1st off. And check this out! I found this very COMPASSIONATE, and very SMART family doc that I found. She also has a sense of humour which I like, too. My kids really liked her a lot, so that helped!

Well, it had been about a yr. since my last big testing, cuz I was so busy with the move and getting my kids in new activities and all. And that break was nice, btw! 8)

Results:
Thyroid - H (upped meds again)
Bilirubin, ALT, & AST - H

That was my highest liver enzymes yet. ALT about 6x out the HIGH range. So, doc sent me to a Gastroenterologist w/Liver Specialty. Man was he good. Haven't had a gastro for close to 15yrs. He said just looking at my blood test history, it looked like Autoimmune Hepatitis(AIH), but he wanted to be sure. He said the on & off abnormal liver tests showed I was getting liver inflammation. He wanted to rule out many other types of liver diseases, so he did lots of testing. Those extra tests were normal.

After all these yrs. of not knowing, he did my 1st liver needle biopsy. So, now it's official - Autoimmune Hepatitis (AIH) aka Chronic Active Hepatitis. Tho' at least in the area biopsied it showed NO fibrosis(scarring). Amen for that! Tho' they say it only takes one bad flareup. The great part that I read is that the liver is a miraculous organ and can repair/regenerate for quite some time. When it can't keep up or a severe flareup hits, that's when scarring can start. He said it's the attack on the liver that causes all my liver symptoms.

My new specialist said he wants to keep a very close watch on me now. So, he gave me a standing order for blood tests every 3 mths. And said to come in earlier if I get sick in a flareup. Well, the one thing I was relieved about was that several times over the yrs. docs tested me w/the viral hepatitis panel it's always negative. PTL! And while it's not good to have any Hepatitis, I am relieved to finally have a NAME for all those liver flareups on & off over many yrs. I was already going thru it, just didn't know what IT was. Another mystery disease now named. AIH. At least it's only showing in the earlier grades of inflammation right now.

Now, I have my colonoscopy coming up. Had a small colon polyp removed so long ago, & haven't been checked since. But this is the full colon this time. The test I'm ok with, it's the icky PRE-PREP that I am sooo not looking forward to. Gross!! ick! Hopefully this test comes out normal. But if they see any polyps, at least they remove them right then. I'll let ya know how it goes.

Anyone else have AIH on here? Seems there are many of us on here that had the Endometriosis & Hypothyroidism link. My Gastro specialist said I have the overall Autoimmune Disease Process and my liver is being attacked also. Over many yrs., the doc-given diagnosis below sure shows a pattern...

----------------------------------------------------------------------
Hypothyroid
Autoimmune Hepatitis
SF Peripheral Neuropathy
Autonomic Dysfunction
Pre/Early Diabetes
Interstitial Cystitis
Neurocardiogenic Syncope
Endometriosis, Adenomyosis, Cysts, Fibroids
Endometrial Polyp & Colon Polyp
Mild Mitral Valve Leakage & EKG abnormalities
Full-body Tremor
Early Macular Degeneration
Rosacea

etc...

 

[Maia]

It has to feel good to have a name for your problem, I hope there are treatments that can help? I don't have AIH, and know very little about it so thanks for the education.

Also - so glad to hear about your long remission from your symptoms. How wonderful - having experienced that once will give you much hope when it hits again that you can get back there to that state of wellness.

Are you living somewhere warm now? That is sounding pretty good to me right now after this first harsh month of winter where I live! *lol*

Take care!

 

[Stacymo]

Are they giving you any meds for your AIH? Stacy

 

[pedro]

HI!
I have SLE also and the elevated liver enzymes. It has also come and gone with flares. They have not put a name to it yet but right now they are tieng it all in as part of auto-immune (lupus). Since lupus coming out of remission it is worse.

I had my gallbladder out years ago and I often wonder if that has anything to do with it ??? Did you have your gallbladder out??? I wonder if this pre-disposes people to liver trouble.
It is interesting you bring this up as I was just trying to explain it to someone the other night.

I am not sure what your symptons are but mine makes me very sensitive to alot of meds and I almost get an allergic reaction to them because of the way the liver is. My body rejects them (or a guess liver). This can be a concern with lupus because of the meds needed. I get very itchy and nauseous from alot of meds and my system rejects them in various ways such as diarrhea, itching, throwing up, very tender right hand side, etc.

Sorry about the description but I can't explain it any other way.

I also don't digest alot of food properly (when flaring) and it makes my stools very watery and yellowy and have alot of tummy troubles>>>feels like a constant burning in my stomach. My upper right hand side going down the side into my back also gets very sore and tender, to explain that in more detail. It can feel like a stabbing in the back and side.
They can give you bile salts and medicine to cut down on the burning, etc. but they say just getting rid of the stuff your body (liver) is rejecting is best. I am not sure what your treatment is or symptons. Is yours tied in with SLE also??? Do you reject alot of meds?? Itching??? Tummy???
The itching is very annoying.
...anyways...i wonder how common it is in lupus. It is a disease that manifests itself in sooo many ways. Like you stated, at least the liver can repair itself and it comes and goes. Mine is not there all the time, it acts up when it is sensitive to things it doesn't like.
To date, I don't have permament liver scarring either and I hope it stays that way. They do ultra sounds and blood tests also but have not done a liver biopsy yet. I had a flare up here not tooo long ago but seems to be settling down. My liver enzymes also fluctuate in the levels of how high they are but are always on the high side but not always dangerously high.
I feel I can almost tell, now, when they are too high.
Anyways, take care...not sure if this helps..but that has been my experience. You are one of the few I have seen post about it so it will be interesting to see how many have this and if it is common in lupus.
take good care.....HAPPY NEW YEAR!!!
Pedro (Nancy)

 

[heavenly]

No haven't been diagnosed w/Lupus. Just been told for a long time it's in that family of autoimmune diseases like Lupus. So, I call the overall process Lupus-like.

Yeah, long ago if someone had Lupus, they called it Lupus-liver, but now they separate it out as a separate process that many don't get. So, now many of us have separate autoimmune disease names for each organ, instead of one overall name that would be much easier to say. :hehe:

My specialist is holding off on meds for right now as he said the meds are very powerful and can cause so many other health problems and bad side effects(some now, some later). (Was told that by nurses long ago, too who worked w/liver patients.) Some docs take all that into account and tailor what they're going to do med-wise for each individual. And that can change at anytime.

The liver is a major powerhouse for all it does for our bodies to function. It processes vitamins, hormones, any meds, etc etc. So, we have to be extra careful w/anything we take, whether a vitamin or med, etc. I've been that way for many years anyway, so that helps.

At least in the area biopsied, they found grade 1-2 inflammation of 0-4 (0 being normal). And thankfully that area showed no fibrosis, so no staging yet. I read that in early grades of inflammation docs all do different - whether to prescribe meds or not. I was relieved when my doc said we'll hold off for at least now, and monitor things very closely. But if or when it comes to it, my doc will prescribe the meds and I'll try them til we get the combo & dosage right.

Pedro, you wanted to know about my liver symptoms... Some things are hard to separate out from the overall autoimmune process that affects my whole body vs. liver or thyroid etc. But this tends to be the main things I notice when it's acting up:

Liver flareup symptoms:

changing periods since early 30's (liver & thyroid cause that)
flu-like muscle pain
itching
exhaustion
nausea
light yellow in eyes
dark urine
abdominal pain
bloating
etc.

As liver sites explain, the true inner condition of the liver is especially seen by liver biopsy. Tho' they are trying to get a better test one day. My ultrasounds come out normal. The tech said those test for more easy to see structural problems, etc. Blood tests don't even always show the true picture as it's common that after people have had liver blood tests out of range, they can go in normal range when liver stuff is still going on.

Pedro, sure hope they get your liver stuff figured out soon. Has your Gastroenterologist done thorough testing to rule out many other causes? Mine just did that, and that made me feel very good that he was that thorough. Smart doc! It was nice to have a doc that took it serious from the 1st appt. He scheduled my liver biopsy right off. So, at least I finally know.

**Note: Every body, and every situation is different so each patient needs to work w/their own docs for what is best for them individually at any given time. What happens w/disease process in one person may not happen for another. And what works for one, may not work at all for another.

 

[heavenly]

Maia - weather

No, it's not much warmer for winter, but IS way better overall with weather. That has been awesome!! Winter where I used to live was hard w/the windy, cold winter, while summer was hard w/the thick humidity.

Well, now our winters here don't have much wind which helps a lot. We have A LOT more sun here which I love to see. And the Spring & Summer have that desert low humidity. Boy was that ever great!! I was already getting some improvement each yr. of last 2-3yrs w/flareups in between. But at least recently it was the best few mths. yet!! Amen for that. Hopefully these flareups the last several months are not too long, but I've noticed they're getting stronger & close together.

But I know there will be Diamond Days again. I just have to tough it out until then.

 

[Lily]

Hi Heavenly,

Nice to see you again but I'm sorry about your new diagnosis

For Pedro here is some information written by Daniel Wallace on Lupus and the Liver:

http://www.lupusuk.org.uk/lupusandtheliver.asp

Take care,

love
Lily

 

[neongirl]

Lily thanks for the link. This is a very interesting thread. When I was first DXd with SLE Mar. 06, my liver was one of the organs affected, I had high blood levels of bilirubin and bilirubin in my urine, my ast and alt were also raised, and just recently returned to normal. A few years prior to the Lupus Dx I had a horrible problem with vomitting and diareah that was found to be caused by my liver, one Dr. said I had a virus that had attacked my liver, another said it was due to an antibiotic I was taking at the time for a throat infection, in retrospect I wonder if it was auto immune. I still have my gallbladder and so far, no trouble with it. One thing I did notice both times with the liver trouble is that I would have pain a few inches below my ribs....not a sharp stabbing pain, just a steady constant dull pain, have any of you experienced that when your liver is acting up? Heavenly, I wish you a bazillion diamond days in the future

 

[heavenly]

neongirl

Yeah, last time my family doc was pressing on my abdomen in different areas, I was flinching when she touched an area and she said that was my liver. And I get abdominal pain in different areas, so hard to say which pain is from which thing. My rib areas all hurt to the touch for so many years, too.

On symptoms, docs have told me that we as the patients know better about our symptoms, cuz we're NOT textbooks.

Lily thanks for the link. This is a very interesting thread. When I was first DXd with SLE Mar. 06, my liver was one of the organs affected, I had high blood levels of bilirubin and bilirubin in my urine, my ast and alt were also raised, and just recently returned to normal. ...
One thing I did notice both times with the liver trouble is that I would have pain a few inches below my ribs....not a sharp stabbing pain, just a steady constant dull pain, have any of you experienced that when your liver is acting up? Heavenly, I wish you a bazillion diamond days in the future

 

[heavenly]

Autoimmune hepatitis link from Mayo Clinic

Many helpful pages here:

Autoimmune hepatitis
http://www.mayoclinic.com/health/autoimmune-hepatitis/DS00676/DSECTION=3

 

[helloos]

I am glad you finally can put a name to it and now can get proper treatment.

Your doctor sounds wonderful and glad you have found him ! It sure does help matters !

I learned a lot from your post - thanks!

Hope you continue to do well with "no" flareups.

 

[pedro]

Thanks for the info. Lily and Heavenly.
30 to 60 percent of lupus patients have liver troubles. That is quite high so it is quite common in lupus.
Take good care, Heavenly...let us know how things are going.
Pedro(nancy)

 

[halfpintfl]

Hi Heavenly, glad to meet you, you sure have had an exciting last year. I do hope that yoou don't flare up again. I don't know anything about your
AIH, but I am like you, in the sence that I also have a lot of other overlaping AI diseases, and I lump them all up and just say"Lupus" I really enjoyed reading your post, and hope to see a lot of you around here. Welcome back, smile and be well.

 

[neongirl]

Thanks for the link heavenly very interesting reading.

 

[heavenly]

new long flareup! (update)

Hope you all are doing ok! I see some very familiar names around.

Update: Few mths. ago, a tough virus sent me into very long flareup that no matter what I do, I can't shake. :sigh:Muscle spasms, nerve pain, nausea, & sudden extreme exhaustion w/that flu-like pain again. Then abdominal & pelvic pain, forgetfulness, losing hair, etc. One day last week (same day my face broke out in a big rash), had a lot of hair covered all over my front and back. ahh. Hopefully that stops now.

Anyway, I kept thinking I'd just get thru this and get better. Was really looking forward to that, too. Things were going SO GREAT & HAVING SO MUCH FUN RIGHT before all this happened. But thank God I had all those great Diamond Day memories made again. :bigsmile: And I sure needed that break! Was getting some short flareups in between as usual, but this progressing health all came out of nowhere and so fast!

Blood tests out of range (not far out):

ALT = H
AST = H
glucose = H
platelets = L
LDL Cholesterol = H

Never had PLATELETS out before. Liver doc said that was wierd. While it's been tough going thru this all this, at least I know why I didn't feel good.
He said w/my symptoms & blood tests, it's the OVERALL autoimmune disease acting up w/liver (AIH)included. He seemed concerned about my hair loss & said I definitely need to get to a Rheumy. That's been a long time. So will be hoping & praying the Rheumy is a GEM like the docs here have been w/me so far. I'm not looking forward to that appt. tho', cuz that means I need to get out my records & update the overview paper, and write up symptom lists. ugh. I don't like going to new docs and having to go thru everything - stuff from long ago, too. But I'm going to be hopeful that this one is a good one who can actually figure this out. And I know it's important & must be done, just not looking forward to it is all.

My liver doc. said that w/so many symptoms and this lasting so long, that I finally need to go on steroids. :ermm: But he said he wants to hold off til the Rheumy sees me and see if he can figure out & treat the OVERALL AD or not. He said if not, then he'll start treatment for the AIH, which would help both things. He said he hates the idea of me having to go on that med., but that w/ADs (when more than mild) when they're not caught soon, they can cause irreversible damage. So, he'd rather play it safe than sorry. Makes sense & I do understand, just was so not looking forward to this part. Take other meds, but not had to take the steroid meds for AD yet. W/the Lord's help if the Rheumy agrees about steroid meds, I'll have myself thinking really positive about it and as prepared as I can possibly be by the time I would need to start that stuff. But just for now, some apprehensive. I'm the silver lining type, so just need to face things head-on 1st that this really is official that it was the AD stuff going on all this time. Then will get my mindset ready for the med. Maybe it will be a big help and I won't have the side effects many have. I can HOPE!!

Liver doc also did an EGD (scope test of throat, stomach, etc). That was a super EZ test! Amen for that! Just saw a hernia and some stomach ulcers, so scrip. for ulcer med. And he ordered thorough ultrasound of abdomen & pelvic. Get that in November. Like I said, at least he's thorough and doesn't like to miss a thing. So for that I give him :thumbs: for caring. He's been a GREAT doc!

Ok, that's all I know for now. So, will update you if I find anything more out.

 

[sushi]

Lily, i went to that link you posted on the liver but the letters were so tiny i couldnt read it. thanks anyway