Liver?????

[delorisdoe]

Does anyone know if wegners can affect the liver? when I was at my last specialist appointment the resident told me my nails look like the nails of someon who has liver disease. After i saw him i had an appointment with my pulmonologist and we briefly disscussed my alpha1 anti trypsin defficiency and he mentioned that one day it could lead to liver disease. then he said, and I quote "but you dont have any symptoms of liver disease so we wont worry about that for now." well If im honest THAT IS ALL I HAVE BEEN worrying about. I did not show him my nails as it seemed silly. when I look up the symptom on the internet-bad idea i know-my nails do look exactly like those of someone diagnosed with liver disease. could 2.5 years of cytoxan have damaged my liver? guess i should have sucked it up and shown him. :confused1:

[Chris G]

Wegs itself does not affect the liver. The drugs we take (ctx mtx), do affect the liver. Your docs should be monitoring you for elevated liver enzymes on a regular basis. To ease your mind, you could check with your rheumys to make sure that your liver enzymes are being monitored, and that they remain normal.

Not sure what your nails look like, but when I look up "Cytoxin side effects", it lists: Nail or skin discoloration or darkening - it does not say that this would be an indicator of liver damage.

[NicShaf]

My docs monitor my liver function weekly, I'm on Cytoxan now. The medications you may be taking are what I would be worried about, I haven't read anything about Wegs effecting the liver. They are simple blood tests to check your liver function, you should contact your doc and see if they can order them for you.

[delorisdoe]

my nail bed is very white with a slight break in the white and then white again. when i look up white nails and liver disease i see my nails. I guess this question is more for an alpha 1 forum but i dont want to join any other grups. lol

[Daggar]

We've been going through that "liver concern" of late. The enzyme levels in your lab work will be above normal if there are liver problems. ALT, AST, ALP, GGT and LDH can all be high as a result.

If the doctors are concerned they'll order bilirubin tests to narrow down likely causes. Holly was also tested for all viral possibilities which came back negative. She was also tested for the alpha 1-antitrypsin deficiency but that was okay as well.

I have my suspicions about the bactrim/sulfatrim doing it but according to the doctors it is inconclusive right now - they did however spread out the med rather than giving it for three days in a row.

Do you feel any other symptoms -- ie jaundice... pain in lower right rib cage area....fever?

[Chris G]

I see anemia listed as being associated with white nail beds as well. Call your doc & ask about your liver values. You'll feel better after you do!!:smile1:

[delorisdoe]

I think that the reason i dont ask the doctors much is because of my fear of my primary illness being diagnosed-hypochondria. I have only been taking my bactrim for a few months now. over the last ten years i fill the prescription and then never refill it. I dont think that my liver values are ever tested. I have been med free though for several years. Maybe I will mention my nails at my next appointment in april but the doctor I will be seeing has nothing to do with the alpha1.

[Chris G]

I fear the hypochondriac label too. LOL. Don't your rheumys draw blood each month? If not, they should be! Especially if you're on ctx, right?. I take mtx, and my docs check my liver values monthly.

[delorisdoe]

It has been several years since i was on cytoxan. I am only on bactrim and I do not get my blood tested each month. I see the specialist a few times a year unless I or the doctors think I am getting sick again. I have seen them alot since january mostly because of a bout of pneumonia. I have an appointment in april and a blood test with a 24 hour urine collection soon but i dont think my liver is tested at all.

[delorisdoe]

Daggar...do you know the Durands? lol

[Daggar]

I don't believe so but I'll ask my parents -- they were there longer than myself.

I believe liver enzymes are part of normal blood work but if not, ask your doctor to include them when you do your next lab work. I'd be surprised if they aren't doing that already due to your alpha 1-antitrypsin deficiency.

[drz]

I fear the hypochondriac label too. LOL. Don't your rheumys draw blood each month? If not, they should be! Especially if you're on ctx, right?. I take mtx, and my docs check my liver values monthly.

I think some times my doctor don't think I take things seriously enough and might even think I am into denial. I share my symptoms with them but rely on them to tell me what is serious and what I need to be concerned about. Unless you pursue something several times that they tell you is not important or not serious, I doubt they will view you as a hypochondriac. They know we have a serious illness that acts weird and that is why they ask so many questions about things that seem strange cause they can all relate to Wegener's or the side effects of our treatment.

[RCOSSIO]

2 1/2 years of Cytoxan...that's a lot. But again I don't know how active was your Wegs.

[delorisdoe]

It was quite active and difficult to put into remission but once there I remained in pretty much complete remission until lately. From what I read I reached what is now considered the maximum recomended amount in the first half of a year. I guess that means I was on it for two years longer than what they would now allow. that was several years ago as I was diagnosed in 2001. kinda scary I guess.
leigh

[Sangye]

Leigh, your docs should be ordering basic bloodwork that includes liver enzymes. Wegs can affect any organ in the body. Liver involvement is rare but not unheard of. Please get it checked out.

[Psyborg]

I had Existing liver issues before wg started. On investigation I found it is possible, but extremely unlikely to get wg liver involvement. So most likely its the medication not the disease. If you look for Marta's post regarding liver issues I posted some research I found on the subject.

[delorisdoe]

I had Existing liver issues before wg started. On investigation I found it is possible, but extremely unlikely to get wg liver involvement. So most likely its the medication not the disease. If you look for Marta's post regarding liver issues I posted some research I found on the subject.

thank you. I did.

sangye...i have been in unmedicated remission for several years so im thinking that there has been no need to do bloodwork for liver enzymes. I am going to just stop looking up pictures of white nails. that should help a little...I am also trying to remember when I became such a hypochondriac. My doctor thinks I have no questions ha ha ha if he only knew.

leigh

[Sangye]

With or without Wegs, if you have white fingernails you really should check liver enzymes. Most things are easier to correct if you find them earlier on. Just my two cents!

[onatreetop]

I have been taking milk thisilte since the on set of the fatty liver notation on the last several ab pics. It is from the meds I was told. Took cytx.for 14 monthes in the beginning. That was the cooker. Cooked the ovarys etc. also. Something we just have 2 watch. I remember when I first found this sight, Jack said, I believe, if the weggies didnt get us the meds would. Dont mean to sound the negetive but .........everyday is a gift for all of us. It is better to laugh all day than cry also.

[jola57]

When I started mtx after 1 1/2 year of cyclo, my liver enzymes were up enough to lower my dose from 15 to 10mg. i have been on mtx for over a year and half and my enzymes are almost back to normal. I am seeing my specialist rhumy in 1 week. I wonder what he will reccomend. I am still on 4mg pred since when I go lower the pain comes back.