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View Full Version : Call from Rheumy, " this is serious".



debbie-b
09-09-2011, 03:53 AM
That is something you don't want to hear from your doctor.
Alot of you know, that I had to stop MTX, due to high liver enzymes.
It has been over 4 weeks, since I had my last shot, had a bloodtest every week and the enzymes went up every week, WITHOUT MTX. WHY????????????????????
This time he ordered a more sensitive test and the result is not good. He said, that this is serious and I need to see a gastro...something doctor ASAP, because there is something very wrong with my liver.
I am scared.
Will I have to get this huge "hose" shoved down my nose or throught?
Did anybody ever have to go to a gastro doctor, to get the liver checked?
Of course my head is telling me, it's liver failure. I am really scared.

Debbie

leaann
09-09-2011, 05:56 AM
hang in there Debbie, I know it's hard. For years I had to have my liver levels checked, and there was no explanation for having a high liver level. I was scared thinking the worse, My aunt had a liver transplant a few years back so I was really thinking all kinds of crazy things, but as in my case my lupus was giving us a wrong test result.

I hope that it is something like this with you. Keep us posted. I will keep you in my prayers. Please try not to think about it so much but I know that is easier said then done.

debbie-b
09-09-2011, 12:27 PM
Thanks Lea,

Just got an appointment for the 23 rd, thats two weeks away, I am not going to make myself crazy.
Besides being worried about my liver, my rheumy took me off all my meds, until we know something from the GI doctor.
He told me, I could take Flexiril and or Mobic, for pain. I am already feeling the pain getting stronger, it's been 4 weeks, since my last MTX shot. I was feeling so much better with the shots.ughhhhh

Debbie

Gizmo
09-10-2011, 07:35 PM
Debbie, my best guess is that you won't have to have a tube in your nose unless you have liver surgery. If you have an endoscopy (where they put a small camera into your esophagus and stomach) you will be asleep and at the worst wake up with a little sore throat. I don't think that test is standard for liver problems, though. An ultrasound and/or CT scan and/or MRI seems like a good possibility. Those don't involve any tubes unless they want to inject dye, and then that's just a little IV. Probably more blood work. I can imagine how frightened you are, but you are wise to try not to over think things before the appointment. Please let us know how it goes.

MyNest
09-11-2011, 11:40 AM
Hi there Debbie, I am so sorry that you are going through this wait and worry stage! It doesnt seem fair. I can hope along with you that you get answers from all of this.

I can tell you that I went through 2 years of high liver enzymes and also had a tube up my nose and into my stomach. The enzymes were called Autoimmune Liver dissorder. My gastro/hepatologist said that they could do a biopsy of the liver, but it would just show a bad liver....that made sense to me. It did get better over time. I DID have to slow down on my anti-inflammatory meds! Taking those every day was killing my liver. Unfortunately for us, that is very hard to do. But in the end, it helped overall with healing my liver and other issues a bit.

I was also on methotrexate and told to stop becuase of a diagnosis change. Over time my liver enzymes got better but I have not, so if MTX helps you, I really hope that the doc compermises with you on that one.

I hope that you can trust this doctor and know that with some time and patients, this too can heal. Hang in there and keep us in the loop.

Hugs to you!

debbie-b
09-12-2011, 12:28 PM
Debbie, my best guess is that you won't have to have a tube in your nose unless you have liver surgery. If you have an endoscopy (where they put a small camera into your esophagus and stomach) you will be asleep and at the worst wake up with a little sore throat. I don't think that test is standard for liver problems, though. An ultrasound and/or CT scan and/or MRI seems like a good possibility. Those don't involve any tubes unless they want to inject dye, and then that's just a little IV. Probably more blood work. I can imagine how frightened you are, but you are wise to try not to over think things before the appointment. Please let us know how it goes.

Thank you, Gizmo.
I have already had an ultra sound done, which was normal.
It is good to know, that a endoscopy, will involve sedation. " JUST KNOCK ME OUT". LOL

Debbie

debbie-b
09-12-2011, 12:43 PM
Hi there Debbie, I am so sorry that you are going through this wait and worry stage! It doesnt seem fair. I can hope along with you that you get answers from all of this.

I can tell you that I went through 2 years of high liver enzymes and also had a tube up my nose and into my stomach. The enzymes were called Autoimmune Liver dissorder. My gastro/hepatologist said that they could do a biopsy of the liver, but it would just show a bad liver....that made sense to me. It did get better over time. I DID have to slow down on my anti-inflammatory meds! Taking those every day was killing my liver. Unfortunately for us, that is very hard to do. But in the end, it helped overall with healing my liver and other issues a bit.

I was also on methotrexate and told to stop becuase of a diagnosis change. Over time my liver enzymes got better but I have not, so if MTX helps you, I really hope that the doc compermises with you on that one.

I hope that you can trust this doctor and know that with some time and patients, this too can heal. Hang in there and keep us in the loop.

Hugs to you!

Thank you for your reply, ( I feel funny calling you "MY NEST").
I have been battling this for a few months now and even without any meds, the enzymes are still going higher all the time.
My rheumy thinks that I had Autoimmune Hepatitis when I was about 5 years old, in 1961. All I remember is that I was in the hospital for weeks, in isolation, with hepatitis. My mom has passed, so I can't ask her.
My rheumy also thinks, that Lupus is attacking my liver, just like it can attack the heart, the kindneys, the joints ect.
I don't know, what I will do, if I can't take any meds anymore. I am i alot of pain already. But I would live with the pain, before I risk having liver failure.

Debbie

magistramarla
09-17-2011, 09:31 PM
Hi Debbie,
I'm so sorry to hear that you are going through this. The 23rd will come soon, and I hope that the doc has some answers for you soon.
This is why I've stayed off the MTX since my flaky new rheumy doesn't check my liver the way my last one did. She kept stressing how important it was to keep a close watch on my liver enzymes. You are very lucky that you have a doc who was on the ball about it.
Let us know what you find out.
Hugs,
Marla

debbie-b
09-18-2011, 02:47 PM
Hi Debbie,
I'm so sorry to hear that you are going through this. The 23rd will come soon, and I hope that the doc has some answers for you soon.
This is why I've stayed off the MTX since my flaky new rheumy doesn't check my liver the way my last one did. She kept stressing how important it was to keep a close watch on my liver enzymes. You are very lucky that you have a doc who was on the ball about it.
Let us know what you find out.
Hugs,
Marla

Hi Marla,

You are right, I am glad that my rheumy is on top of things.
But since I haven't taken the MTX for 5 weeks now and the enzymes are still going up, he thinks that the Lupus might be attacking the liver. I am having a slight pain under my ribs and a feeling like my upper abdomen is getting to crowded inside. I am very frustrated, plus I am without any meds. It is just a matter of time, until all heck breakes loose. So far the pain is up, but it is not to bad.
Only five more days, until I see the GI doctor.

Debbie

debbie-b
09-29-2011, 05:22 AM
I did go to the GI doctor.
He was going to send me to have a endoscopy done, but told me to take the from him ordered bloodtest first.
It is a liver function test and will show what is going on with my liver.
He agrees with my rheumy, that it could be Autoimmune Hepatitis, which is not good.
Of course I have searched the internet and it lookes to me, that is what it is. Just waiting for the bloodtest results now.
It is nerve wrecking, if it is caught early, it can be treated, if not, it could lead to needing a liver transplant.
I am on pins and needles. Plus my bloodpressure was 150/90 again yesterday. SIGH
I will let you know, when I find out anything.

Debbie

steve.b
09-29-2011, 06:18 AM
please remember - do not borrow trouble.

i hope it is treatable!!!!!!!!!!!!!!!!!

please do not cause undue stress over this, the results will be back soon enough.
you do not need a stress induced flare.

debbie-b
09-29-2011, 06:56 AM
please remember - do not borrow trouble.

i hope it is treatable!!!!!!!!!!!!!!!!!

please do not cause undue stress over this, the results will be back soon enough.
you do not need a stress induced flare.

I know and I tell myself just that, but you can't help but worry.
On top of everyting else, I have been without ANY meds for six weeks now. I am in pain.

Debbie

tgal
09-29-2011, 09:48 AM
please remember - do not borrow trouble.

i hope it is treatable!!!!!!!!!!!!!!!!!

please do not cause undue stress over this, the results will be back soon enough.
you do not need a stress induced flare.

*grins* Just love that quote! "Don't borrow trouble". Pass it on!

tgal
09-29-2011, 09:49 AM
I know and I tell myself just that, but you can't help but worry.
On top of everyting else, I have been without ANY meds for six weeks now. I am in pain.

Debbie

I am keeping you in my thoughts. Remember that you are cared for here. Finding out what is going on is always better than being in limbo.

debbie-b
09-29-2011, 02:30 PM
I am keeping you in my thoughts. Remember that you are cared for here. Finding out what is going on is always better than being in limbo.

Thank you Mary,I do want to find out, what's going on, but it is still very scary.
My husband is a bundle of nerves, but tells me not to worry. I have known him long enough to see when he is worried.
But no matter what, we are flying to Texas on 10/15/11, to see the kids and grandkids.
Thanks for caring.

Debbie

Toradoradi
10-02-2011, 12:36 AM
Hope all gets figured out soon. I was just taking a minute to catch up some of the posts here and thought I would send good thoughts your way. I don't post very often on here recently but I do pop in to check how everyone is doing. I hope this is taken care of quickly and without too much pain and worry. I recently had to go in for an ultra sound on my abdomen because my rheumy wanted to check my liver since I was having some pain. Turns out it is gallstones. I know yours is more serious then that but I was worried when he said he wanted to check my liver. Anyways good thoughts and prayers your wAy.

Gizmo
10-02-2011, 07:38 PM
I hope you will get your results this week. We are thinking of you and hope you will share the findings with us.