Liver sarcoid

Hi, I'm new here. IN 1985 I was diagnosed with Lung Sarcoidosis. It fully covered both lung, and I couln'd walk and talk at the same time. Dr gave me 80 mg or predisone for 4 months. When I tapered off I discovered I had Cryptoccocyl menningitis (rare kind). I was in the hospital for 4 months threated with amphoterisin B. It was horrible and I hardly remember those months, other than the inside of a toilet bowl. (sorrry) Anyway now I have it in my liver and I am scared to death to take prednisone. I don't know what do do I cry all the time. I can't believe I have it again ( I did have it in my eyes too) This isn't life. Worrying about ballooning up like a blimp, feeling miserable. It's not fair to my husband and kids (who are very supportive). Sorry to complain, I know some of you have had it wose than I have. I have a question, What is the smallest amount of prednisone you can take and not gain that awful weight. Everything I read says sometimes you don't have to treat it. All my Docs say I do My liver is swollen down past my belly button and I have pain whenever I bend over or lean on the right side. Now every pain I get I have some serious right hip pain . I 'm afraid. Help!!! I want to run from this thing I can't even see. Thanks!!!!!!!!!

Report post

12 replies. Join the discussion

Hello Sparrow ~

My husband came down with Granulomas on his liver last year - after much testing of ruling everything else out (including TB) he was put on 80 MG of prednisone for about a month or so, then we began to decrease the prednisone at first the amount rapidly (my husband becomes violent on prednisone and also began taking effexor with it which did help with that) until we were down to 10mg daily - (his liver enzymes didn't increase anymore with that dose) He stayed on 10 mg for about 6 months and then 5 mg for 4 months (his liver enzymes finally were within normal limits) and then we decreased 1 mg per week until he quit........so far it has been a month and his liver enzymes are staying stable........we will retest again in 3 more weeks.....He did gain quite a bit while on the higher doses but at 5 mg he no longer wanted to eat the legs off of the table anymore.... during the weight gain he started snacking on lots of raw veggies that seemed to have helped some with his craving to eat all the time..... I think the 5 mg was the least he took where he didn't want to eat everything in sight anymore....However I think the higher doses were needed at first to stop his liver enzyme count from climbing further.....

Good luck with your treatment, this is a scary disease as you don't know what it will affect next......right now we are trying to cope with the results of comming off of the prednisone as he is always so tired now (more than when he was on it) and keeping our fingers crossed that he can stay off of it and his liver enzymes will not climb again......(maybe long enough we can get his lungs tested?? ) Doc's haven't actually given him the Sarcoid diagnosis yet (they are leaning that way) as they haven't found it in his lungs but the pulmonologist says he has been on prednisone so long now it would be worthless to do a bronchioscopy until he has been off it as it would be like trying to pull a needle out of a haystack, however my husbands cough has been increasing since we started decreasing the prednisone.

Report post

Dear Sparrow
From what I have read, Sarcoid is not very destructive to the liver. It can be present for years and go un noticed. Unfortunately it sounds like you are one of those who have noticable Liver Sarc.
What do your liver enzymes show? are they way too high? I recently discovered some kind of strange connection between my liver and antibiotics. They nearly ended up removing my gallbladder because of this foolishness. Luckily my Boston Gastro surgeon was smart enough to figure the connection to antibiotics and I get to keep my gallbladder. Have you been on a lot lately? My liver enzymes skyrocket with antibiotics. The docs are now trying to find out why. I am betting that you were given lots with the menengitis too? right?
Luckily, The liver is the one part of our body that is pretty good with regenerating itself. I mean you can donate part of your liver to a relative and still work with what you have. Perhaps if they treat it this once, it will go away and it may never bother you again. If prednisone does not appeal to you, explore other med options like methotrexate, etc. Perhaps they can give you something besides pred. However if you get yourself all stressed out, you will just make yourself feel worse, so please try to relax for now. (I know, not easy!!!) but better for you.
Also, make sure you are satisfied with the answers you are getting. Do not be afraid to get second or even third opinions. It's your body! I would recommend you see the chief of Gastro at the biggest city teaching hospital nearest to you.
Good luck and Be well
Dawn

Report post

Hi Sparrow

I saw your coments on liver sarcroid, I am constantly observing this site for my wife who has had this condition for neraly 20 years, ok Di my wife has had upto 60mgs of pred, yes she did balloon for some time but she has never been afraid of pred simply because its helped her condition HOWEVER IMPORTANT is that the liver does get a bashing from the toxciticy level in her liver and therefore the toxic level from the pred is a problem BUT my wife has found a way round that although medics where not in agreement Diane takes MILKTHISTLE HERB, this herb works for my wife let me explain.
Milkthistle reduces the toxic level in the liver and secretes into bile and out through the stools with constant bood tests her blood is much better and she has been feeling much better, she did however run out of milkthistle and stopped taking for a month and felt sick of which there was a dip on her blood she very quickly got back onto milkthistle and is feeling ok again,
The liver is a strong organ to self repair and with reduced toxic levels from the pred by taking milkthistle she is feeling better, PLEASE dont misunderstand me here she still has strong activity of Sarcroid and follows doctors orders and has many other problems that has come along as a result of long term ilness Daine lives for herself and makes the best of a permanent condition, but thanks to milkthistle she does have a better quality of life, please take that as a honest genuin tip.
You must fight hard to look after the liver as difficult as it is, I truly wish you all the best and head up, dam this condition

Regards

John & Di
UK

Report post

I have been living with various forms of Sarcoid since 1992 and my most rececent adventure is with my liver. My enzymes read high for some years but I was having so many other serious problems that we only got to the liver last year. I was diagonosed with portal hypertension. Which is essentially a really swollen liver with veins 2 or 3 times the size that they should be and potential for bleeding is always present. I've had many episodes of blood in my stool and feel the presence of my liver almost always. I think the long term use of prednisone has contributed to some of these problems. I am currently working with the docs to figure out how to get off of them as my lungs are working pretty good. I gained weight from the prednisone, but now because of the swollen liver, I have a pretty large gut and I'm sick of this ailment. Anyway, I try to make the best of it and keep my head up about these problems and just be thankful that I'm alive. Take care.

Report post

Hi Dawn:

I was diagnosed in February 2007 with sarcoid through a biopsy. My doctor feels I've had it atleast 11 years undiagnosed due to my blood work records. Both my lungs and spleen were extensively affected. I did Prednisone treatment, started on 30mg and tapered off. I now have this enlargement feeling in what I think is my liver. I went today to the doctor, he said he can feel the edge of the liver and thinks it's enlarged. I go Wed for a CAT scan. He said I might have to go back on Prednisone and hope it shrinks my liver/spleen. Said in some patients it works, some it doesn't. Who is the doctor you go to in Boston? I've from the Boston area.

Laurie

Report post

Hi Laurie
I see Ashley Haralson Vernon at the Brigham. She is a gastric surgeon.
I did answer you yesterday but somehow I don't see it here. Weird.
She is the best. She also sees patients at the Faulkner in Jamaica Plain, but her surgeries are done at the brigham.
You can call the office at (617)732-6337
Ask for Maria, One of her secretaries. She is the sweetest and most helpful and gets things done quickly.
Good luck and keep me posted!
Be well
Dawn

Report post

HI, thank you all for your comments, it's so helpful and comforting to know there are people who truely understand. My enzymes are high, the doc took me off lovastatin (for high cholesterol) but they didn't go down much. Had a liver ultrasound and it came back as "fatty liver" . Then my doctor sent me in for a liver biopsy, that came back stage 1 diffuse sarcoid. stage 2 fatty liver and stage 1 cirrosis (I don't drink, or take drugs). My PCP is VERY understanding about my not wanting to take Prednisone because of the cryptoccoyl meningitis I got (never knew it until I was tapering from the Prednisone. So, right now I have to lose some weight ( I quit smoking 2 yrs ago and gained about 12 lbs. It is such a miserable disease because you never know when it will hit. Anyway my Dr said he will do some reading and talking to some other docs, because I have heard that if the liver is functioning ok then you don't need to be treated. However, he did say he is concerned about the cirrrosis because he doesnt know if that was caused by the fatty liver (which it can be) or the sarcoid. I'm trying to keep it together, but it's hard. And maybe your right and they can treat it with some other drug. Thanks for the comment. It does help.

Report post

HI Dawn, Thanks for your comment. Its so helpful to hear from people who really understand. Yes, my enzymes are quite high. I've been on Lovastatin for high cholesterol so the Dr took me off that because it can inflame the liver, but my enzymes didn't go down that much. So, then he did an utrasound which said I had "fatty liver". Then because my liver was so swollen he had a liver biopsy done which showed Stage 1 diffuse Sarcoid, Stage 2 Fatty Liver, and Stage 1 Cirrossis. I haven't been on any antibiotics but I have a severe depression problem so I have taken probably over 40 anti depressants (not all at once) but either was allergic to them or had bad side effects. So I wouldn't doubt if my liver has been affected by all those meds. Also, had a grand mal seizure last year so I am on Keppra and Kolonopin for that. I have talked to my Dr and he is very understanding about my feelings about NOT wanting Prednisone. He said he will do some research and talk to some other Docs to see what the consensus is. I do feel better about that. He did say he was concerned about the cirrhosis because it could have been cause by the fatty liver or the sarcoid. (I don't drink so it can't be that). Anyway thank you for your encouragement. It does help!! Sparrow.

Report post

HI Betty, I understand what you mean about this stinking disease. I've had it in my eyes, in my lungs (really bad) and now my liver. My liver is swollen about 2 x it's size. I felt a "fullness" high on my right side and if I bend over the arm of a chair or push on that side its painful. Hopefully your results will come back good. I just so don't want to go on Prednisone. I was miserable while I was on it. Thanks again for the comments. Hope to talk to you again!! Sparrow

Report post

Sparrow, I will pray for you. Prednisone is a curse and a cure to me and it has out lived it's usefulness for my lungs. It cannot open my airways and it is only really causing other problems at this point. My liver cannot be helped by prednisone. I am going to consult with a doctor at the university of Chicago to discuss weaning me off of prednisone. I think it's now in my mind when I don't take it I think I can't breathe. Oh well. I'm still happy to be alive. All the best to you, Betty

Report post

Hi Sparrow
As for the antidepressants, There are many different "groups" I guess you could say. Do you know which ones you have taken? For example Prozac, paxil, etc are SSRI's (selective seratonin reuptake inhibitors), and elavil, Nortrypteline, etc are Tri-cyclic antidepressants, and then you have the Wellbutrin and others that fall into the "other" catagory. Personally the only thing I can tolerate is the SSRI's and in very low doses, but it works for me. I take 20 mg of Prozac daily, but they had to start me off with 10mg every 3rd day and work my way up, as I too have bad reactions to most anti-depressants. They either make me really angry, give me the shakes, make me dizzy, give me insomnia, etc. I am good with the prozac now but they had to build up my tolerance slowly.
As for alternatives to prednisone, My RA said that the understands that I do not want prednisone, right now she has me on Relafen 1000mg 2x daily for pain. it is an NSAID.(non narcotic). She said if this does not work, she would suggest Plaquenil before suggesting Methotrexate. She said the side effects are less severe. It is an anti-malarial/other drug that apparently can sometimes help patients with Sarc. We will be discussing it further when I see her on the 19th of this month. I will keep you posted on what she says about it.
As for the liver, well, I am still trying to get to the bottom of why antibiotics seem to make my liver toxic and then spread through my body. When I come up with the answer I will let you know that too.
Please feel free to email me at dmbraz1973@yahoo.com.
Also, you do not need to be a drinker to get cirrhosis of the liver. It can happen apparently from Sarc.
Be well
Dawn

Report post

Hi Betty, Thank you for the prayers, I also will be praying for you too. I'm sorry your having such a difficult time and meds aren't helping you. Your exactly right - prednisone is a curse and a blessing. I have heard that before that sometimes Prednisone doesn't help liver or spleen sarcoidosis. Do you know why? My biopsy showed stage 1 sarcoid (diffuse) Stage 2 fatty liver, and stage 1 cirrhossis (sp). Anyway, thanks for the reply and I wish you well at the DR's.

Sparrow.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders