Liver damaged due to Methotrexate use for rheumatoid arthritis

Hello everyone,

 

This is my first post - I have read through some of the other postings and thought that I would share why I am here.

 

My mother who is 67 now was diagnosed with hepatic encephalopathy in October 2007.  The doctors think this was caused by damage to her liver from Methotrexate use for her rheumatoid arthritis treatment (it worked great for the arthritis but not so good for her liver).  When she had her gallbladder removed years ago the surgeon found some cirrhosis of her liver-at the time we didn't know just what that would mean.  The gastroenterologist really gave us nothing to work with or any suggestions.  So my mom is mostly being followed by her family doctor who quite honestly I think is mostly baffled by the whole thing.  Most doctors seem to know what lactulose does but they don't seem to know much else about it and how it should or shouldn't work.  Right now my moms ammonia level is in the 80's which leaves her kind of groggy and she goes from foggy to goofy to cranky and then she becomes so sleepy that she can hardly keep her eyes open.  She has been taking the lactulose/constulose for this past year and we cannot seem to get it regulated so that she isn't either dehydrated from the diarrhea or her electrolytes are all off because when she doesn't feel well she doesn't eat or drink like she should.  She can hardly force herself to take the lactulose itself as it is so sweet, she has tried everything to get it down.  She said the more she adds to it the more she has to drink so mostly she too just takes it like a shot and tries to get it down.  Right now she is taking two doses per day (she just can't make herself take it more than that) she takes 3 tablespoons in the morning and 2 tablespoons at night.  It is a vicious cycle in trying to keep her hydrated and her electrolytes where they should be.  The gastroenterologist said he didn't think it would make a difference if she changed her diet and I have not been able to tell if her varying ammonia levels are food related or not.  She is currently taking magnesium, vitamin A, calcium, a multi-vitamin and also flaxseed oil and cod liver oil on top of the other presecribed drugs.  She takes 35 pills every day and is now having a hard time swallowing them.  I just don't know where to turn anymore - I can't seem to figure out how to regulate her ammonia level and when she gets foggy she is no help at all.  I am going to ask her doctor about the Rifaximin/Xifaxin and see if that is anything that might help her but at this point I don't want them to just keep adding more pills.  She was taking Enbril and then Humira for her rheumatoid arthritis but that was causing her blood levels to go haywire so now they are trying her with only Prednisone and Morphine and so far the blood levels (hemoglobin and white and red blood cells) are more stable - she has not had to have a blood transfusion in almost two years.  We see the family doctor again Tuesday - we see him once a month now and with all of her health problems it seems that we still don't have time to address all of the problems.  Sorry this is such a long post I just thought some background would help.  I am trying to figure out what to do next - I cannot continue to watch her like this - I have to figure out how to regulate the lactulose so that her ammonia level can become more stabilized.  Does anyone know if taking bigger doses at a time works better or if taking smaller doses more times per day works better?  It would be nice if there was a better way to test the ammonia level, besides a blood draw because she only has one arm that she can have blood drawn from due to a mastectomy for breast cancer, so it is hard for the lab tech to always find a good vein to draw from and we really need to see every couple days what the levels are at to help determine at which dose or doses will keep her levels down.  So if anyone has any advice or words of wisdom I would be glad to hear it.  It seems like I am the one having to figure it all out because the doctors just don't have time in the short time we see him.  Of course her depression is also high and that doesn't help either - she takes a pill for that too and she still seems to be depressed.  But with everything she is going through it is no wonder she is depressed.  Life just sucks sometimes and yet we cling to it with everything we have!!!   

Hi, 4catzlover.  I am glad you found us and decided to post.  I think Mrsquickgt has given you a good alternative suggestion for the Lactulose.  Trying to keep everything in balance is extremely difficult.  Is there a reason your mom is seeing a GI doc rather than a hepatologist (liver specialist?)  Also, family care/primary physicians really don't know much about treating liver disease.  It sounds like your mom's liver was already damaged and then she took it over the edge with the methotrexate use.  Liver disease like this is definitely better handled by a hepatologist, as a GI doc and especially a PCP may not have ever seen this type of patient previously.

You will find a lot of info here and especially a lot of support.

Hang in there!

Thank you all for your responses - I will look into the Kristalose and see if that is any better.  My moms PCP is always open for suggestions and tries his best but I do think this is more than he can handle or is outside of his experience, but he is the one that diagnosed it originally.  The Methotrexate is what caused the liver damage - the liver was fine prior to her using it.  Unfortunately the PCP she had at that time was not on top of the blood testing that is supposed to be done while using Methotrexate and now my mom is paying the price.  I have also researched the Xifaxan and it looks like it is covered by my moms prescription plan so she will only have a small copay if that is an option.  What I worry about is that I don't want her using up her last options if that is something that they reserve for when this is more progressed.  I don't really know what the final stages are or how this progresses.  I will definitely look into a Hepatologist as well.  Everyone has given me some other things to investigate and I appreciate all the insight and suggestions I can get.  I know with my mom is just tired of having no life outside of the bathroom.  She takes the Constulose and then for the next several hours she can hardly leave the bathroom.  That doesn't allow her to go anywhere or do anything that gives her some reprieve from this miserable disease.  She also deals with severe rheumatoid arthritis which has taken its toll on her body along with all the treatments she has taken for it - of course most of the treatments were never prescribed with a warning of what they actually can do.  As patients we just assume our doctors are doing what is best for us but they really are not looking at our future and what all these prescriptions are really doing to our bodies.  She is prone to UTI's and takes a pill to help prevent it every day but she still gets them a few times each year.  How does the Xifaxan work - any personal info on it would be appreciated.  Thanks again for all your input and advice.  I think I have found the right place, it really helps when there are real people to talk to that have actually either taken the stuff or has been with someone who has or is going through the same thing.  Thanks so much.