I also have pain in my liver and joints, and also what feels like dry eyes. It is not dry eyes, it is an acquired autoimmune inflammation of the eyelids called Blepheritis (sp?). I also have acquired autoimmune disease of the thyroid. Two "doctors" have told me that there is nothing to worry about, that I do not AIH, one of whom even expressed doubts that I am experiencing pain from the liver, another who has has refused to discuss the situation, still another who said she only goes by what the specialists say, one who has not commented except to say that I'm not going to get a biopsy, while no one will do a biopsy to rule out AIH. Anyway, now maybe you know why your eyelids feel dry. The inflammation causes the oil secreting glands to become plugged, thus your eyes are deprived of one of the components of normal tears (saline, mucus, and oil), the oil that coats and prevents the water component from drying out. Incidentally, although you probably already know, painful joints, pre-existing autoimmune disease(s), and fatigue are some of the classic indicators for AIH.
Thanks for your reply, they tested already for that. I went to specialists which told me that I was able to produce tears my glands are working properly. Negative for Sjogrens Syndrome.. I just wish I know what I have so I can deal with it, instead of wondering and what I'm afraid that later in the future 5 years from now it will be too late because whatever I have will have progressed to the point that the Drs. will say "Oh, there is nothing we can do for you is too late" that's why I keep calling all drs. and nurses to keep evaluating why I don't feel normal.. I think they don't wanto to hear from me anymore..
Today I had two hard boiled eggs with some Olive Oil and it gave me extreme pain in my right side, I have a headache, low fever in my body and extremely tiredness to the point I just want to get in bed and sleep.. THAT IS NOT NORMAL.. I took to Advils to see if it helps somewhat.. and just called the nurse again if I can see a Gastro-Int soon...
I need them to get a Biopsy of my liver to see if I don't have any damage going on there..
as a result of the medication I took for Hep C.
Thanks again!!!
Please ask your doctor to check you for Sjogrens Syndrome. You have the symptoms. Also, I noticed that my liver area hurts (I guess it's the area around the liver, as the liver has no nerve endings, therefore, cannot feel pain), but it only hurts when I have very little fat in my diet. Which makes me think it's hurting cause it's not as full of fat as it was before, so it's shrinking instead of swelling. I don't know. I'm guessing. Sugar, fats and carbs will make my liver swell. Nash is just as bad as AIH, in my opinion. No matter what you eat or drink, it's wrong! My Liver transplant specialist said my problems are all from fatty foods, but I don't eat the snacks like others do. I eat pasta, vegies and breads, and very little fruits, no meat, and no chips, etc. I do know that meats have L-Carnitine in it, and L-Carnitine takes fats out of your liver. So, my not eating meat wasn't the best thing for me. But, I bought L-Carnitine supplements, and take high doses of that with high doses of Milk Thistle, and it helps a lot. the transplant specialist (Dr. Gish in San Francisco) said neither of these will hurt me in any way.
Your joint pain may be just from having so many changes in your body from the illness. But....it is also something I have with dry eyes and mouth, which are from the Sjogrens! So, get tested for that! Good luck!
Thanks for your reply.. I really apreciate your words.. How long will take for AIH to develop and feel the sympthoms .. I'm hungry all the time and actually I gain weight I was 130 with TX and since I stopped TX I'm now 143 lbs.. I noticed too I'm 42 years old but I have lost collagen in my skin like I aged in a matter of 3 to 5 months. I'm taken supplements and trying to go back to exercise but just the normal stuff nothing that will hurt my side... Also, got protein in powder to see if I can built muscle again..
I know I will never be the same and I'm grateful to be free of Hep C but coping with all the changes of your body has been difficult never will imagine what these meds. can do to you physically and mentally...
I noticed that you been a great support for everybody in this sight .. I wish from my heart that you feel better and I will keep you in my prayers for God to protect and guide you in your journey..!!
Pearl
Pearl,
The test for me for aih was my biopsy. I also had hcv but the aih was much worse & doing the damage to me so I had to go on aih treatment for 3 and half yrs prior to the hcv treatment.
My biggest symptoms were weight loss & upper body joint pain.
My enzymes also come bk normal but I have noticed since over the summer I am again experiencing upper body pain as I did prior to diagnosis. My brother passed away this past yr from NASH & I don't think he ever had elevated enzymes & that frightens me somewhat.
As far as moving beyond the after effects of the hcv treatment which ended over 2 1/2 yrs ago, I still experience some. I am not the person I was prior to treatment but never experienced pain around liver & I am stage 3. Of course all of us are different in many different respects so on that I just don't know.
Hope this helps you alittle, if I can say more please ask & best wishes to you.
Jody