Wondering if it is Autoimmune Hepatitis/Lupus

Hello everyone, I always read the boards but it has been a while since I posted anything. Platelets have been holding steady around 115k since June 2008 after rituxan treatments (after almost 2 years on prednisone). So I am starting to wonder if I might have lupus...I haven't been to see a rheumatologist in a year because I have been doing so well!

Anyhow I have been diagnosed with Raynaud's Phenomenon, Arthritis (underdetermined what kind), Sjrogren's Syndrome, Osteopenia, and of course ITP. I am currently having liver problems. I am also overweight (2 years on prednisone and comfort eating!), but have been in relatively good health for the past few years. I have actually lost some weight in the past few months.

So I started feeling rundown this winter, and I was working too much of course. So I went and got my platelets checked in January to make sure they were still there, and they were 117k woot! So my hematologist ran a few more tests for my liver & kidney function. My liver enzymes came back elevated and I felt super fatigued and was having problems getting out of bed in the morning. Just to be on the safe side I stopped my occasional drink and supplements (I am not on any meds right now) for a month and had the test redone in February and still elevated. I tried to get an appointment with my rheuma but about this time I learned he moved to another university clinic to do research (2nd time a rheuma has done this to me!) and wasn't going to be seeing patients anymore, doh! So I felt like crap and I need a new rheumatologist. Just spectacular! *please note the sarcasm*

Unfortunately between the doctors not accepting new patients, my insurance not covering them, and scheduling problems it took me 3 months to get an appointment with my hopefully new rheuma on May 18. My hematologist says that he is super nice and kind so I am hopeful.

In the meantime my liver enzymes were elevated, so my hematologist ran a dozen tests on liver and kidney function plus an ANA in March and I had an ultrasound done. All the tests came back normal, except still have elevated liver enzymes, my ANA is still high (1:640) and speckled (similar to when I first had an ANA 10 years ago). So no viruses or other things to blame the enzymes on right now. The ultrasound shows inflammation and possible "fatty" deposits. So then my hematologist found me a heptologist. Amazingly I got into see the heptologist 2 weeks ago, and they basically said yep elevated enzymes and no real cause. Somehow they insisted on rerunning most of the blood tests my hema had already done the month before, but I finally relented since I want to make sure that nothing was missed. I just got the results of all of those tests and nothing has changed.

So what my hematologist and new heptologist have narrowed it down to is I have one of two things a) fatty liver disease or b) autoimmune hepatitis. Currently I have been eating healthy and trying to exercise so I am feeling better and loosing weight which would help fatty liver disease, but do nothing for the autoimmune hepatitis. The only way to really tell what is wrong with my liver is a liver biopsy. My hema told me I should get it done and have it over with; the heptologist said I should wait and see if loosing more weight helps my liver enzymes go down and maybe do another ultrasound before they do a biopsy. The heptologist doesn't seem overly concerned with my liver enzymes being elevated right now, but is more worried about long term scarring on my liver. I don't get to see my new rhematologist for another month...

So the question is do I try to get the liver biopsy soon? or should I wait to talk to my new rhematologist? If I do have autoimmune hepatitis, should I consider that I might have lupus or do I just say I have a bunch of autoimmune diseases?

Anyone else have autoimmune hepatitis with their ITP or lupus? Oh and I haven't ever had elevated liver enzymes on any of the rounds of tests until January.

Thanks for listening!

Hi Issa. Well, I've always thought that listening to the doctor in the actual specialty was the way to go, so for the liver problems, I'd go with what the hepatologist says (unless you don't feel he is doing the right things). If the hepatologist was concerned that your platelets were 75,000 and wanted to do a bone marrow biopsy, you'd probably go with what the hemo suggested, right?

As for the Rheumatologist, I'd keep that appointment and for now, treat everything as separate problems. Everything could be related and tied together, but you really won't know that until you get more Lupus labs done. Usually if you have Lupus, it is the primary disorder and everything else is considered secondary. If you don't have Lupus, you would then have several seemingly unrelated autoimmune disorders. You can't rule Lupus out, but it can be confirmed.

Good luck and let me know what happens. I hope I answered your questions!

Thanks Sandi! It just seems like everytime I get sick I get another autoimmune problem. I am hoping I don't have autoimmune hepatitis and just the weight is making me store fat in my liver...not that I want to be sick at all, but I really don't want to go back on steriods...exercising and eating healthier are a much better alternative.

I have tons of questions for my new rheumatologist, I wish the appointment was sooner! I need to have the lupus panels done again. The last time I have records of all of the labs was when I got diagnosed with ITP, but that was in the fall of 2006...so almost 5 years ago. I spent so much time at my hematologists office the past few years I kind of tried to ignore my other autoimmune symptoms if they weren't bothering me that much. Probably not the right thing to do.

And although my platelets are fairly high (116k last week), I keep getting petechia because I itch and keep scratching myself. One of my major symptoms of the liver inflammation is my itching.

Funny you mentioned itching. I've been itchy like crazy lately. I'm chalking it up to allergies.

Jut take it one day at a time for now. I hope losing weight helps you too.

Hey, just thought I would post an update since I finally saw my new rhematologist and saw the heptologist again.

I really like my new rheumatologist and he knows my old one that when into research; he also is good friends with my hematologist so he understands the ITP part of my autoimmune history. He actually trusts what I am telling him and doesn't think I am crazy since I have now been dealing with all of this for ten years. I had one rheumatologist blow me off because I was young and he thought I was just doing this for attention. Seriously, like I enjoy taking time off from work, having a million blood tests, and being poked and prodded just for fun? Yeah I never saw him again!

They have run to many blood tests in the past month I hope I will give a shot at listing some of them. The last ANA was 1:2560 and speckled (always speckled). For my heptatic function panel, my AST and ALT are elevated, but everything else is normal. As for the speciality tests aimed at why my AST and ALT are elevated: I am Negative for Hep A, B & C, Anti-Smooth Muscle Antibody, Mitochondrial Antibody, ANCA Leukocyte AB, LKM, Ceruloplasmin and Alpha-1 Antitrypsin. I had a full metabolic panel run and that was normal, normal cholesterol/triglycerides, normal levels of iron. My CBCs are normal except low platelets (110k) of course. My TSH came in on the low end of normal, so I am trying to follow up on that in the near future - could make new questions but answer others. My immunoglobulins came back with normal IgA and IgM, but my IgG are high. My new rheuma also did a full lupus panel but I don't have the results yet. I am really tired of being stuck with needles...my arms look like I have been beat up from all the bruises.

Anyhow the consensus from all 3 of my doctors is a liver biopsy to rule out autoimmune hepatitis is next on my to do list.

I feel okay physically but in the back of my mind I know something isn't quite right. I stopped itching as much and my appetite is returning so I am hoping maybe part of it is in my head. Still fatigued, but at least I know I have a group of people that are hopefully trying to figure out what is going on with me.

Issa:

I'm glad they are all being so thorough with you. Sounds like you have a good team going there! Thanks for the update - I was wondering about you! Let me know what happens next.

Hey Sandi - another update as they called and faxed me the results of the Lupus panels this morning. The first thing the nurse said when she called was the results indicated Lupus/Sjogrens Syndrome and of course my liver enzymes are high(who knew?!). My next scheduled appointment is in one month with my rheumatologist.

So my ANA is still positive, speckled with a titer over 1:2560. My C3 Serum is 147 and C4 Serum(both within normal range). RA Latex Turbid is High at 17. RNP Antibodies High at 7. Smith Antibodies High at 5.2. Sjrogrens Anti SS-A and SS-B are 0.2 which is within normal range. My ANCA Panel is all within a normal range. The Anti-dsDNA Antibody test is listed as high at 12. This time my IgG, IgM and IgA are all within normal ranges.
The Lupus Anticoagulant Reflex test is marked high/positive.

So any feedback you have on which results are more meaningful would be appreciated. I want to be prepared when I discuss with my doctor a possible diagnoisis of Lupus...so trying to do as much research online as possible. I really just want to understand what this will mean for me and possible treatments and understanding if it is lupus just how it affects me versus another autoimmune disease. And now the ITP then would become a symptom of Lupus? I have had the lupus panels run several times over the past 10 years and never had this many positive(high) results.

I have had in the back of my mind for several years that the fact I seem to gain a new autoimmune disease every few years might mean I have Lupus, so I am not in shock, almost relief that I could have one cause of so many different things. Not that I want lupus just it would finally bring answers/closure to problems that started when I was 18. Maybe I don't have lupus but just a cluster of autoimmune disorders, in any case I want to know what exactly does this mean?

Anyhow thanks for your input; just trying to get my thoughts in order.

Issa - I'm not a doctor, but you do have several elevated tests there that usually indicate Lupus. Namely, the Sm and dsDna, plus the Lupus Anticoagulant. I know you are not surprised by this. The nurse said as much. I found out the same way...a phone call from a nurse.

You aren't on Plaquenil yet? That will probably be the first thing they suggest. Many times, treating with that can lower the antibody levels. Usually, treating Lupus can being the other things under control, but you may have to treat those separately, depending on what they are. Sometimes Prednisone will bring other autoimmune issues under control if Plaquenil isn't known to do it, such as autoimmune hepatitis (if that's what you have). Usually, if a person has Lupus, it is considered to be primary and the others are secondary to Lupus. You're right, it can cause a mess of a body.

It's too bad you have to wait a month. It would be great to start treating. What are you taking now?

Thanks for the quick response, I know you aren't a doctor but all advice is helpful since I only know one person with lupus, and my other friends have no clue about ITP, much less lupus. My family also doesn't really understand any of it either, and the more I tell my parents the more worried they are. So I really do appreciate your kind words of advice on the board.

I actually was taking plaquenil pre-ITP, but I stopped it on the advice of my hematologist in case it had anything to do with my platelet problems. After my platelets were under control I asked my rheumatologist at the time if I should resume taking plaquenil, but he didn't seem to think I needed to resume taking it since at the time I wasn't having any symptoms related to autoimmune except the platelets.

In hindsight I probably should have gone back on the plaquenil, but I might never have known that the plaquenil was possibly controlling the antibodies and gotten the positive tests for the lupus indicators. I have at least 6 copies of lupus panels that I can find and none of them show the levels I had on my tests from last week, and for 4 of them I know I was on plaquenil at the time I had the blood tests done. Also I was on predinsone or decadron pulses until I got the ITP under control, so that was controling inflamation related to other autoimmune disorders.

Right now I am not actually on any medications (just vitamins) which is partially why this whole thing started back in January. I was basically trying to avoid my other autoimmune problems for the past year if I could help it since my old rheuma went into research and I had platelets. I know it wasn't the brightest thing in the world, but I was busy with so many other things that it was easy to ignore since I was feeling fine. Have to learn from my mis-steps. And on top me procrastinating with finding a new doctor, it took 3-4 months to get into see a rheuma that seemed to care and listen to me. So totally my fault for not finding a new doc sooner, but now I am impatient and I want answers!

I did leave a message with the nurse to see if I can move up my appointment sooner, so hopefully they will call me back tomorrow. I would really like to talk to him and discuss if it is lupus and treatment. He originally didn't want to see me until after I had my liver biospy which still hasn't been pinned down yet.

Anyhow I feel better just having someone to listen to me even if you really can't give any medical advice, but wisdom is much appreciated.

Issa:

If your tests have been good until now and you were feeling well, you have nothing to blame yourself for. Hindsight is 20/20. It probably would have been ideal to have stayed on Plaquenil, but because of your platelets, I can see why that was eliminated.

You seem to be very on top of things, in spite of what you are saying about yourself. You're doing just fine. Lupus can be pretty confusing, but you seem have a very good understanding of what you're dealing with.

I understand the lack of basic knowledge with family and friends, and how important it is to talk to someone about it. I want you to know that I'm here for you, anytime. I mean that. I'll send you my e-mail address. Feel free to use it if you don't want to post here.

Sandi, thanks I received your message!

Hopefully I can get my appointment moved up or I might see if he would call in a plaquenil rx for me. Even if he says no its not lupus I think I probably need to start on plaquenil again for the other autoimmune diseases.
And I do feel better than a few months ago but I still have fatigue and joint pain so anything that helps with the inflammation would be welcome.

Good luck - let me know!

Well just quick update...no plaquenil till after I have my liver biopsy. So I have that scheduled for June 10 and then the next week I get to see my rheuma.

Trying to convince myself to not be so tired, thats really the only thing getting me down these days. Hsve a great holiday weekend

Hey Issa,

Hope you get some answers soon and hopefully you can be started on Plaq.

sorry to butt in

But was wondering if all these tests results - do they come from a full FBC or do you have to have other tests to achieve them?

Only reason I ask if that every time I have an episode am always asked if done anything different etc. And since December I been told to report bruising too (of which I choose to ignore the ones that are caused by accidents - even if the one was very big in december though would be as had 7 platelets....)

But I am lazily looking to see if there could other reasons why I have ITP, whether something is a trigger or not. Though am slowly coming around to that I may well have the Immune version in that every time I have a platelet drop I experience ear wax - just like I do after a cold etc.... (I do have a weakness in my ear of discharging wax)....
I know It could be purely and simply be an autoimmune disease and that is all... but how would I know if my ANA is up or down, or enzyme levels etc especially at the time of a full blood count and everything else is normal accept the platelet which is low (at times of a drop).

It doesn't hurt to be quietly digging around in various different things but don't know anything about ANA's etc.... ?

These are all separate tests, not included in a FBC.

thanks
am not missing anything then and as I say - mine is pure ITP and wont ask for the tests as have had ITP now for 16 years so if anything was going to show it be prevailent by now I guess.

though would there be abnormalities in the fbc to lead them to do other tests.....?

that is i wont ask unless a real connection is made because whilst i have different things wrong with my body - it just that they are different things and no connection - or at least the previous consultant 100% believed there are no connections.....and I believe him Sorry for butting inB)

Rhiannon - you're not butting in. Actually, Lupus or any other disorder can develop at any time after ITP. All it takes is a trigger. There wouldn't necessarily be anything to the FBC that would prompt more testing unless your reds or whites were abnormally low. Then they would take a look at any symptoms and order further testing based on the whole picture.

Hey Rhiannon welcome to the discussion . As Sandi mentioned they are all separate blood tests. Normally no one would have as many as I have had in the last three months, but they were trying to rule out all kinds of liver problems in addition to autoimmune/lupus related tests.

As far as asking to be tested or not I wouldn't unless you had other symptoms (outside of ITP) or family history that are autoimmune I had autoimmune problems starting five years prior to my initial ITP diagnosis; and my grandmother has several autoimmune disorders as well. My sister has actually been having problems too, mostly related to joint pain and inflammation. She also has had a few illnesses they never really found a cause for. Due to the possible genetic nature of autoimmune diseases my sister has been contemplating at least getting an ANA test done and going to a rheumatologist. I hope my sister (she is 38) doesn't have anything worse than mild arthritis as I wouldn't wish how I feel on anyone. We managed to discuss this over the holiday so I will probably keep you up to date on both of us as she seems interested in seeing my rheumy.

Well I need to get some rest, I keep working too much and not enough sleep and then I wake up feeling exhausted. I don't know if I can ever learn to pace myself.

Well I survived the liver biopsy last week (woohoo!). I still haven't gotten the results yet (boo!).

I did get to see my rheumy again and he confirmed I have Lupus. So my ITP would be a symptom of the lupus now. So if I do have autoimmune hepatitis it would also be lupus related.

Unfortunately until I get my final biopsy results he won't make a decision on what sort of treatment to start me on. I was kind of frustrated to hear that but if it is autoimmune hepatitis one of the few things to treat is steriods...ick! Otherwise he mentioned just putting me on plaquenil.

Otherwise I have been feeling really good compared to even 2 months ago. So I am hopeful to continue without too many symptoms to control for as long as possible.

Hey guys! Thought it was time for an update. I didn't realize how long it had been since I posted. I don't think I ever updated how my liver biopsy went...turns out wasn't autoimmune hepatitis, but I have fat in my liver.

Basically trying to loose weight and no alcohol (which is fine because alcohol and lupus don't seem to mix too well to begin with).

My platelets, knock on wood have been between around 80. I can't believe it has been four and a half years since I had the 4 doses of rituxan. I keep hoping that my body will hold out a little longer and my platelets don't plummet unexpectedly.

Been seeing my current rheumatologist every 3 months or so with no major changes till recently. I have been having what I would call a mild flare. I have been having joint pain and fatigue similar to episodes I had in college. I wish I had known what was going on back then.

My Rheumy wants to treat with plaquenil right now which is fine, but I have a feeling if this keeps up for too long I will need something for the joint pain. My hematologist doesn't want me on most nsaids because they might cause my platelets to drop. Back in college when I was having joint pain problems I took Celebrex as needed with good results, but that was before I had ITP. Any anti-inflammatory drugs that are less likely to affect platelets? My fear is I will take something and my platelets will drop and then I will have to start on prednisone again.

I have also been having tingling when I sit for long periods or when I am asleep. My rheumy said this might be neurological? has anyone else had experience with this?

I guess I should visit more often so my posts aren't so long! :laugh:

Issa:

Hi - good to hear from you! It surprises me that you haven't been on Plaquenil all this time. It can prevent and control flares and most Lupus patients take it for life if they don't have any problems with it. It's not just used during flares.

I have been on both Prednisone and Naproxen (1,000 mg's a day) for inflammation for the past 7 years. It hasn't caused any platelet drops. I tried Celebrex once and it didn't do anything.

I have had some neurological issues. I started with neuropathy a few years ago and also had tingling and numbness in arms and legs. It comes and goes depending on the weather and stress levels. I also have burning skin when I'm cold, and burning feet most of the time. I had cubital tunnel a few years ago (similar to carpal tunnel) but it resolved on it's own and was caused by inflammation. I know a few people with Lupus who have similar neurological problems, so it is fairly common. Hopefully you can control it before it gets too bad. Have you had your B-12 levels checked? Low B-12 can also cause neurological problems.