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debbie-b
03-15-2012, 04:28 AM
As alot of you know, I had to stop MTX shots, a few months ago, because of high liver enzymes. Well, even
without the MTX, the enzymes are high and all over the place.
About three months ago, my rheumy send me to a gastro doctor, for my liver. That doctor pushed a little on my upper abdomen and said, that I have to get a upper GI(or whatever it's called, when they shove this tube down your throat into your stomach). Well I went home and thought about it and decided, since there is nothing wrong with my stomach, I am not going to pay this huge co-pay, so I didn't have it done.
My rheumy asked me about the gastro visit yesterday and when I told him, what he wanted to do, my rheumy said, " that is insane, the gastro just wants to make money". I was shocked to hear that, even though that is what I thought as well, but hearing it from another doctor, wow.
So here is the story. My rheumy is very afraid to give me ANY meds, until the liver thing has been resolved, because ALL meds hurt the liver in some way.
If you have a healthy liver, it's ok, but if your liver is damaged, you can't take these meds.
So the next step is, he will talk to the gastro and tell him, that the ONLY thing I need is a liver biopsy.
That scared the heck out of me.
He thinks that I have autoimmune hepatitis ( not contagous), it means the lupus is attacking my liver.
I know Mari, you will say, " don't borrow stress", but I am very scared.
I am going to have a huge blood test done today. The next step is the liver biopsy.
He also dx me officially with sjoegrens, very dry eyes and dry mouth.

Debbie

magistramarla
03-15-2012, 12:07 PM
Debbie,
That is scary. Hopefully, the docs will determine exactly what it is and figure out what meds you can take to bring it under control.
This is exactly why I stopped taking MTX. My good rheumy in Texas was adamant about checking liver enzymes every 4-6 weeks. My current one only requests blood work once a year, and then it is just the "regular" tests, nothing aimed at the liver. I don't trust her!
I'll be thinking about you.
Hugs,
Marla

tgal
03-15-2012, 12:11 PM
Actually Debbie, I will only say that about the results. The biopsy itself is scary enough! I am so sorry you are going through this! I hate this disease. I hate that it attacks everything and keeps us all worrying. I hate that my friends suffer and worry because of it..

I will be thinking of you. Keep me posted please. I am always here if you need me

steve.b
03-15-2012, 06:42 PM
debbie,
what i do when this sort of problem presents itself.

i look at the alternative.
if you do not have the biopsy .......

to me that makes the treatment become a positive.
it is easier to bear the pain, when it is a positive.

it works for me.......usually.

i hope they can offer medication to fix the liver problem.

debbie-b
03-16-2012, 04:00 AM
Thanks guys,

I don't get worried to often, because whatever happens, you can't change it. But this one has me worried, even if the liver damage is minimal, my rheumy is afraid to put me on any meds.
What am I going to do then? I can't live without meds, I am in so much pain already.
Marla, the rheumy doesn't think, that the MTX has anything to do with my high liver enzymes. It is actually the lupus attacking the liver. It's a catch 22, you want to stop the lupus attacking the liver, but all the lupus meds, damage the liver even more. UGH
I had 12 veils of blood drawn yesterday, felt like donating blood.
My platelets have been low as well and the rheumy said, that is also the lupus doing it. Now my little mind is wondering, liver biopsy and low platelet count? That can't be good.
I better stop now, before I work myself up.
I am so glad, that I have you guys, because I don't go into deep details with my husband, he is worried sick, about me.
No, I do not keep anything from him, but when I talk to him about it, I play it down a little, because I can see, how worried he is. There no sense in both of worrying until we know for sure.

Debbie

magistramarla
03-16-2012, 04:02 PM
Debbie,
We're here for you when you need to vent. I haven't researched this, but there must be something that they can do if the biopsy shows that there is some damage. Are there some meds to slow down or stop the damage?
Keep us informed!
Hugs,
Marla

debbie-b
03-17-2012, 12:15 PM
Debbie,
We're here for you when you need to vent. I haven't researched this, but there must be something that they can do if the biopsy shows that there is some damage. Are there some meds to slow down or stop the damage?
Keep us informed!
Hugs,
Marla

I think so, because the rheumy said that ones we find out what is going on with the liver, we can go ahead and treat it.
Hopefully I hear something early next week, but you know how it is, when you wait for your doctor to call, but I am not shy, I'll call him until I get an answer.
He is supposed to contact the gastro doctor.
We'll see.

Debbie

debbie-b
03-22-2012, 07:31 AM
The nurse from the rheumy office called today, with the lab results.
The only thing I know for sure is, that the sjogrens test was positiv, the rest was blah, blah, I just couldn't understand or comprehent the rest. But there was alot revealed at that last blood test.
My question now is, if they can test for sjogrens in your blood, why do they have to do the lip biopsy? My rheumy will not do the lip biopsy, because the blood tested positive.

Debbie

magistramarla
03-24-2012, 03:46 PM
Debbie,
I think that the lip biopsy is considered more definitive for Sjogren's. I had positive blood work for SJS at my very first rheumy appointment years ago, but that guy just dismissed it and said that it really wasn't a disease that needed to be treated. I know that I was positive for both SSA and SSB when my second rheumy tested and she listened and started treating me. The rheumy that I have now seems to want to dismiss it, too. She seems to think that it's nothing but dry eyes and dry mouth and easily treatable - Hah!
I had the biopsy and the full work-up at UCSF because I volunteered to be part of their study. IMO, it gave me some more good information to take back to Dr. Pineda when I go back to Texas. I'm anxious for the re-test at UCSF, since it will soon be two years. At that time, I was taking both Plaquenil and MTX, and I didn't get the message to NOT use my eyedrops or take my meds for 24 hours prior to the test. This time, I,m no longer taking MTX and I'll know to not take my meds before the appointment. I'm wondering if more inflammation will show up? They send the info to my current rheumy as well as to me, so perhaps it will wake her up!
If you have a more caring and informed rheumy than mine, who is willing to start treating the SJS, you should be fine without the lip biopsy.
Hugs,
Marla

debbie-b
03-24-2012, 05:59 PM
Hi Marla,

Thankfully, I do have a good rheumy and he will treat it, if the OTC meds are not helping.
I have got an appointment for the gastro doctor, where he will give me a date for the liver biopsy.
Like I said the nurse called with the blood test results, but I didn't understand, so I called her back and she said she would send the results in the mail. That rheumy and his staff is awesome, this doctor spends 45 minutes with me, every time I am there.

Debbie

debbie-b
03-26-2012, 04:56 AM
I have received the bloodtest results.

ALKALINE PHOSPHATASE = 131 normal 42-98, it means damage to liver and/or bones.

ANTI- MITOCHONDRIAL AB = >=1:320 normal < 1:20 , it means liver damage

SS-A/RO ANTIBODIES = 551 normal 0-100 I don't know what that means

NEUTROPHILIS = 73.8 normal 40.0-70.0 I don't know what that means

VITAMIN D = 10 normal 30-100


[Overall suggestive of liver disease, suggestive of chronic active hepatitis= autoimmune hepatitis.]

Even though my doctor has told me all this, it is really hard to read, because liver disease is nothing to mess with.
I am scared to find out, how much liver damage there is.

Debbie

tgal
03-26-2012, 05:34 AM
Ok Debbie , when is the. Biopsy scheduled? Once they do that they can see exactly which way to treat this. I know this is a scary time. It don't forget that we are all here for you and that this can be controlled! Love ya and keep us posted

steve.b
03-26-2012, 06:29 AM
debbie,
when i was first diagnosed,
i had 4 major organs involved.
my liver results were not as bad as yours.....
but still above normal.

they came back with steroids.
please do not worry tooooooooooooooo much yet.
wait for the liver biopsy.

if i remember correctly.....
you were flaring before the test.
this will elevate some results.

debbie-b
03-26-2012, 07:09 AM
Ok Debbie , when is the. Biopsy scheduled? Once they do that they can see exactly which way to treat this. I know this is a scary time. It don't forget that we are all here for you and that this can be controlled! Love ya and keep us posted

My appointment with the gastro doctor is on April 19, on that day he is supposed to give me the date for the biopsy.
I am so glad, that I have you guys.

Debbie

magistramarla
03-29-2012, 02:57 PM
Debbie,
I'm familiar with the SSA/Ro antibodies. That means that you definitely have Sjogren's. The low vitamin D is something that we've discussed here a lot and I've seen it discussed on the Sjogren's support site. Usually, our docs put us on a really high dose of D for a while (50,000 IU once a week), and then have us to keep taking 1000 IU or 2000 IU per day. Talk to your rheumy about this.
I'll be anxious to see what the gastro doc tells you.
Hugs,
Marla

debbie-b
03-29-2012, 03:08 PM
Thanks Marla,

It seems like my rheumy is on top of things, I am taking 50000 IU right now. I had a very low vitamin D level before, it was at 6, but after it got back to normal, I slacked off and didnt' take the 2000 a day.
Well now I know, what the SSA/Ro antibodies mean. All the rheumy said, when he looked at the bloodtest results was, " you def have sjogrens, we don't need a lip biopsy or a schirmer test."
I am very anxious, when he tells me the date of the liver biopsy.

Debbie

debbie-b
05-16-2012, 02:06 PM
So, I just got back from the gastro/ liver doctor. The date for the liver biopsy is 5/29 at 8.30am.
He said a biopsy is the only way, to find out how much damage the liver has suffered.

Debbie

steve.b
05-16-2012, 08:42 PM
good to see it is not a long wait.
hope all goes well for you.

debbie-b
05-17-2012, 01:28 PM
good to see it is not a long wait.
hope all goes well for you.

Thank you Steve. It is a little nerv wrecking, my husband is very worried. But like you said, at least it is not a long wait, until the biopsy.

Debbie

magistramarla
05-17-2012, 01:56 PM
Debbie,
I hope that it shows that everything is ok and you can stop being so stressed.
Keep us informed.
Hugs,
Marla

GingerOsborn
05-21-2012, 11:40 PM
Debbie,

First off as your reading this take a deep breath...it really helps! I am 21 my mom is 46 she found out she has aih when she was 21. So I know all about you labs, levels, and fears. But everything will work out! In 2004 my mom had an updated biopsy she was at stage 4 of 4 liver failure. That's not what you want to hear as a single mom of a 13 yo. BUT its 2012 and my mom is still alive with out transplant! The prednisone or imuran will control the aih. But maybe not the small dose your used to ie your liver functions off the charts while your currently taking the prednisone. Look into cushings disease. Also prednisolne is used in cases of aih because it is prednisone already processed.

Much love!
Ginger

debbie-b
05-24-2012, 03:09 PM
I went for the blood test today, the one for before the liver biopsy. After the nurse took the needle out, it wouldn't stop bleeding for 20 minutes. She was pressing down on the hole pretty hard and finally after 20 minutes it stopped bleeding.
I hope that doesn't mean that my platelets are way down again.
I don't feel like bleeding to death after the biopsy.
If it isn't one thing, its another. sigh

Debbie

magistramarla
05-24-2012, 09:12 PM
Debbie,
I'll be thinking about you next week. Let us know how you are doing as soon as you feel up to it.
Hugs,
Marla

debbie-b
05-25-2012, 03:57 AM
Had a call from the hospital last night, was told that the biopsy is going to be on Wednesday, instead of Tuesday. I was told, that I have to be on complete bed rest on the day of the biopsy and then she asked me what kind of work I do, I told her it involves very heavy lifting, all day long, she told me, that I can't work at all for three days after the biopsy. No lifting at all.
My boss had a fit, because the schedule for next week was already made and now he has to change it. Oh well, that is why he is getting paid the big bucks,lol.
On the other hand, my liver doctor could have told me, that I can't lift anything.
On the bright side, I am going to be off work, for four days, two regular days off and two sick days.

Debbie

debbie-b
05-25-2012, 03:59 AM
Debbie,
I'll be thinking about you next week. Let us know how you are doing as soon as you feel up to it.
Hugs,
Marla

I will, but I know, my husband will not let me off the couch on wed, I hope he lets me go to the John. He is over protective.

Debbie

debbie-b
05-29-2012, 02:04 PM
Hi guys,

Tomorrow I will have my liver biopsy, I need your good thoughts.
Hoping that there is no liver failure going on. The bad thing is, I have to wait one week for the results.

Debbie

Derrie
05-29-2012, 03:18 PM
Waiting for biopsy results is the absolute worst. I'll be sending good thoughts your way for a speedy recovery from the biopsy!

magistramarla
05-29-2012, 08:56 PM
Debbie,
It's Wednesday (at least it still is where I live) and I'm thinking of you. I hope that all went well.
Hugs,
Marla

debbie-b
05-30-2012, 03:17 AM
It is 6:15am right now, the biopsy is at 9am.
I want some coffee and I am thirsty.(having a fit).

Debbie

Derrie
05-30-2012, 05:34 AM
Oh my god, you can't have coffee? That would make me a madwoman.

BonusMom
05-30-2012, 06:40 AM
Here on the West coast it is 5;45 a.m. and my thoughts are with you.

My cousin had a liver biopsy recently and said it was a piece of cake. I hope yours is just as easy. Like you, waiting for the results was the most difficult. Keep busy to try and keep your mind off of it. I know-easier said than done.

Good thoughts are being sent your way.

steve.b
05-30-2012, 07:39 AM
[QUOTE=BonusMom;106462]Here on the West coast it is 5;45 a.m...../[QUOTE]

on the other west coast it was 9:40pm at the same time.


i too understand the waiting game.
i need to wait 2 weeks for my biopsy results.

magistramarla
05-30-2012, 09:13 PM
Debbie,
It's Wednesday (at least it still is where I live) and I'm thinking of you. I hope that all went well.
Hugs,
Marla

OK, I plead brain fog! I went through the entire day yesterday thinking that it was Wednesday!
Well, now it is actually Wednesday - 9:10 pm here on the west coast.
I'm still thinking about you, Debbie. I hope that it all went well today.
Hugs,
Marla

debbie-b
05-31-2012, 03:47 AM
Thank you everybody for your good thoughts.
The numbing shot was somewhat uncomfortable, but the biopsy itself hurt like heck. The biopsy needle going in did not hurt at all, but once he pushed the pressure button and the needle hit the liver three times, I thought somebody has kicked me in the upper abdomen. The only good thing is, it only took a few seconds.
I was supposed to be in recovery for two, to three hours. But they send me home after 45 minutes. I had to be on bed rest for 24 hours, that is not for me. Everything started to hurt, all my joints and muscles.
Well today there is just a slight pain and I feel better, because I don't have to lay down anymore.
I got to say everybody in that hospital was awesome, the nurse, the PA, the ultra sound technician and the doctor.
Upon my release the nurse handed me a carnation with a note saying " have a speedy recovery".

Debbie

rob
05-31-2012, 03:55 AM
Other than the pain, I'm glad the biopsy went well, and that you are feeling better today.

magistramarla
06-03-2012, 03:23 PM
Debbie,
Thinking of you today. I hope that you are feeling much better.
Hugs,
Marla

debbie-b
06-06-2012, 04:31 AM
Thank you, Rob and Marla.
I do have a slight pain in my abdomen since the biopsy, it feels "sore", but I think that is normal, after all, they took three slices out of my liver.
It has been one week since the biopsy and still no call from the doctor, but I am off work today, so I will call and call and call, until I get the results. All these doctors should be a patient, at least once, so they know how we feel, how difficult it is, to wait for a very important test result.ugh
I let you know, as soon as I find out.

Debbie

magistramarla
06-06-2012, 09:47 PM
Debbie,
Waiting for results is the hardest part.
Keeping my fingers crossed for you.
Hugs,
Marla

BonusMom
06-06-2012, 11:38 PM
I am hoping you get some real good news and real quick!

debbie-b
06-08-2012, 05:40 AM
Finally, the doc called. The inflammation and liver damage is mild and NOT dangerous.
What a relieve.
Now I am calling my rheumy, I want my meds.
Thank you guys for your support.

Debbie

Derrie
06-08-2012, 05:46 AM
May I be the first to say, YAY!

steve.b
06-08-2012, 05:54 AM
Finally, the doc called. The inflammation and liver damage is mild and NOT dangerous....


i am sooooooooo glad to hear this.

magistramarla
06-09-2012, 09:26 PM
Debbie,
What good news! I hope that you will be able to take those meds that have helped you before.
Didn't MTX help you a lot? I wonder if you can take it again?
Let us know what your doc says.
Hugs,
Marla

debbie-b
06-10-2012, 05:47 AM
Debbie,
What good news! I hope that you will be able to take those meds that have helped you before.
Didn't MTX help you a lot? I wonder if you can take it again?
Let us know what your doc says.
Hugs,
Marla


Marla,

Yes it was MTX that helped me, actually, the only thing that has helped me. I am hoping, that I can take it again.

Debbie

tgal
06-10-2012, 11:00 AM
yay!!! I am so glad to hear that news!

debbie-b
06-14-2012, 04:34 AM
Went to see my rheumy yesterday (btw.I am sick of going to the doctors).
Had the liver biopsy 2 weeks ago and the rheumy still didn't have the results, even though the liver doc had them. Well he ordered them and received them while I was there.
The results are not as good as the liver doc told me.
There is mild to moderate inflammation in the liver, which has to be dealt with NOW. Even though it is not dangerous now, it is serious. The only way to nip this in the butt, is Steriods. So he startet me on Prednisone.
I started with a hand full of them last night. That is one med, I really hate to take. It makes me shiver, to think, that I have to take another dose in a few minutes.
After taking them yesterday, I had to urinate every 30 minutes, even through the night and the urin was clear, no color, like water. Is that something I should worry about?
Anyway, he wants to " heal" the liver, so that I can go back on the MTX, because I have autoimmune hepatitis, the Lupus is attacking my liver.
Another thing, how can I avoid the aweful bitter taste in my mouth, after taking the Pred?

Debbie

magistramarla
06-14-2012, 09:46 PM
Debbie,
I have no advice on the pred, since I can't take it. I just wanted to say that I hope that this works and that your liver is better soon.
Will it be safe to go back on MTX, or can it damage the liver all over again?
What a pain, to have such tough choices!
Keep us informed.
Gentle Hugs,
Marla

debbie-b
06-15-2012, 05:11 AM
Debbie,
I have no advice on the pred, since I can't take it. I just wanted to say that I hope that this works and that your liver is better soon.
Will it be safe to go back on MTX, or can it damage the liver all over again?
What a pain, to have such tough choices!
Keep us informed.
Gentle Hugs,
Marla

Thanks Marla,

Well I guess, it is a catch 22, the Lupus is attacking the liver, so we have to make the liver better, in order to restart the MTX. We will go from there.
I have got to say, the prednosone is helping, almost no pain, so far no hunger, the opposite, I don't have much of an appetite. On wednesday, when I went to the rheumy, three fingers on my right hand were swollen and I could not make a fist, this morning no pain, no swelling and I can make a fist.
If this darn stuff didn't have so many side effects, it would be the perfect med.

Debbie
Writing from my brand new computer, that I had just bought at 7am at Walmart. My other one started to make a real loud noise, the fan inside fell of the casing and hit the board inside and damaged it.

debbie-b
08-15-2012, 01:37 PM
Good news today.
I went to see my gastroenterologist ( I call him liver doctor), anyway, his recommandation is for me to go back on the MTX. But keep a close eye on the liver enzymes, weekly tests at first.
I left a message for my rheumy and hope he going to start me back on MTX, by next week.

Debbie

tgal
08-15-2012, 02:13 PM
Yay! So glad you got the information that you wanted! Keep us posted as to how it goes!

jmail
08-16-2012, 03:55 AM
Wishing you well on the next attempt there with MTX debbie-b! btw, that "frequent urinating" when on the steroids is the blood sugars going way up on you, which your body compensates for by trying to eliminate it (the high sugars) from you through the urine. For me, the elevated blood sugar is the worst part of higher-dose steroid use. You might have them do an A1C test on you next time you're in the doc's office, just in case.