Itching and billirubin in normal

[jodao]

I still itch and the GI doc said since my billirubin is normal now it can not be because of my liver which the last biopsy showed cirrhosis.  I itch and I am not on interferon or any hep c tx.  The itching is not as agonizing as before when the brilliant doctors dx me with dermatitis and/or scabies which it was neither.  I had to turn jaundice,itch as if i were being eaten alive by bugs,develope puss filled lesions, take much predisone and a few cortiosne shots (giving me cushingoid syndrome) take minocyline that totally activated my hep c (type 1a), and a day from dead before they took it serious.  The cholestyramine stopped the itching as my billirubin was high, alphafetoprotein was1600 among more abnormal labs. Now my billirubin is normal and i still itch.  Just had a biopsy done last month and it showed cirrhosis. Today I had an EGD (no verices) but the GI doc said my liver was not the cause of the itching since my liver isn't too bad. No just cirrhosis.  It only makes sense the itching has to do with the liver problem as it was before. I can't believe otherwise.  It does not make sense since the meds for my liver or billirubin worked before. Oh his GI partner in the clinic said the opposite that I did not have to have high billirubin to itch. One says one thing and the other another. atarax helps some but too tired the next day. I learn to live with it since it is not as nearly as bad as it was before. Last year I never slept d/t the itching. Oh this GI doc which I have always trusted also said interferon makes only a few people sick. I hear and read differently.  He will not start me on that now as he stated it was too soon after my son dying and it could really cause depression and I am prone to depression. On a antidepressant Wellbutrin (zoloft gives me headaches) Has anyone experience the itching without having high billirubin levels? Also not cause by their meds.  Because I was itching before I was on the antidepressant and the antianxiety.  Also the GI doc also said the hep c should not be causing my fatigue.  I have had it over 25 yrs now. I can not believe it is not causing fatigue.  I know depression can as well but I believe I get depressed because I am often so tired. Maybe a Hep C support group could help with these questions since they would be experiencing it first hand and the doc does not have neither hep c nor cirrhosis.  Just trying to understand all this.  and so many contradictions

[jodao]

thanks this is the first i have been back to this med help. as you can see I am learning.  I will look where you said re: itching

[fretboard]

Someone else will chime in later, maybe even someone who knows about cirrhosis.  I really don't know anything about itching other than my own.  the topic has been discussed in the past tho'.  If you look directly across from the post a question link you will see the archives, check it out.

http://www.medhelp.org/posts/Hepatitis-C/ITCHING/show/311082

[jodao]

did you get my response?  I believe I left blank who I was posting a comment to and I wrote one to you and to the other person whom responded as well.  This forum is new to me so I am not sure if I am sending my comments for you all to see.  I see them under my messages. Now I'll have to wait to re write but I did mention a doctor once mentioned that vascularitis can cause itch when he seen I had vericose vein. A few anyhow.  Surely Not on my abdomen or arms or back where I itch. and incase the other person that sent me a response directing me to a website thanks. I looked that one up a while ago and printed out a few for myself and my concerned friends.  Can't remember if it said one could itch without having a elevated billirubin.  I did but not now. and the itch is the same with less intensity and no lesions (bad predisone/cortizone) reaction..It use to be so bad I tried everything from anti itch creams, placing scalding hot out of microwave wet towels on me thinking I would kill what I thought were bugs eating me alive to painting fingernail polish all over me.  That is how desparate i was.  I had no idea at the time the cause.  and it was finally determined to be my liver as you know from my first long comment. So I don't get how know it is something else.  I'll have to re read the article about hep c puritis. again can't remember if it mention one has to have elevated billirubin and if not why does the doctor not know that? It is horrible not knowing so i empathize with fretboard. For me...what else could it be.....something different?  I think not

[jodao]

p.s I am just learning how to participate in this forum and post correctly.  I see that I sent twice the same post.  please bear with me until I get how this works.

[jodao]

thanks for that website.  I have in the past looked at that one and printed a few for myself and caring friends but I'll have to re=read it.  I can't remember if it said anything about the billirubin having to be elevated.  If not than why doesn't my GI doctor know one can itch with hepc and/or cirrhosis?  Geez he has helped many hep c pt.'s that I have met.

[jodao]

thanks for the quick response.  I know I have cirrhosis.  I think that is stage 4 so can't figure out why the doc said "it isn't bad enough to cause fatigue" the hep c that is.  And as I said my billirubin in now normal but I itch. I really only had stopped for a short time and that was in sept 2010 when they figured out my hep c was active. of course it does not itch as bad as before but other than the intensity it is the same itch without the lesions from the reaction to predisone and cortizone. So how could it be something else for me because as i said "it never went away for a long period of time just the intensity".  I still get what I call bites but they are small bumps and sometimes they don't itch just my skin. just like before...my skin was an agonizing itch where there were no bumps and other times the bumps itch.  In sept 2010 I was pretty much covered except for my face and neck. I have heard it all back then but one thing before they really figured it out dispite me telling them from the get go that i had hep c is that one doc mentioned vascularitis can cause itching.   again since the er doc did not do much until near death they did not know how high my billirubin was. and now it is not but I still itch.  I thank you fretboard and hoping someone out there has experience with this itching with finally normal billirubin and believes as i do that i has to be from the original problem. ..the liver. Hope your leg finds a fix as it is terrrible not knowing the problem therefore how can one figure out the solution.  I do need to know if anyone can relate or experience with this itching I have that again has to be from the liver as nothing else has been wrong with me.

[jodao]

thanks for the quick response.  I know I have cirrhosis.  I think that is stage 4 so can't figure out why the doc said "it isn't bad enough to cause fatigue" the hep c that is.  And as I said my billirubin in now normal but I itch. I really only had stopped for a short time and that was in sept 2010 when they figured out my hep c was active. of course it does not itch as bad as before but other than the intensity it is the same itch without the lesions from the reaction to predisone and cortizone. So how could it be something else for me because as i said "it never went away for a long period of time just the intensity".  I still get what I call bites but they are small bumps and sometimes they don't itch just my skin. just like before...my skin was an agonizing itch where there were no bumps and other times the bumps itch.  In sept 2010 I was pretty much covered except for my face and neck. I have heard it all back then but one thing before they really figured it out dispite me telling them from the get go that i had hep c is that one doc mentioned vascularitis can cause itching.   again since the er doc did not do much until near death they did not know how high my billirubin was. and now it is not but I still itch.  I thank you fretboard and hoping someone out there has experience with this itching with finally normal billirubin and believes as i do that i has to be from the original problem. ..the liver. Hope your leg finds a fix as it is terrrible not knowing the problem therefore how can one figure out the solution.  I do need to know if anyone can relate or experience with this itching I have that again has to be from the liver as nothing else has been wrong with me.

[hrsepwrguy]

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/pruritus.pdf

[fretboard]

sorry to hear of your difficulties.  I swell in my legs, feet and hands and I itch like crazy but it's only in my left leg (the itching).  It's most likely not my liver though.  I had a liver biopsy on 11/23/11 and I am a stage 1 grade 1., my ALT, AST billirubin and alphafeto protein are all within normal ranges.  My only point is my itching is from something other than my liver.  I don't know about your situation tho'.  good luck