Recently diagnosed with HEPATITIS C, Now what ??????
Arge1966 posted:
2 years ago I was told I had Crohns, 9 months later my GI specialist said it wasn't Crohns and he believed it was Angio Edema from my lisinopril for hypertension. In Feb this year I was admitted in respiratory distress and with congestive heart failure. I was on a vent for 5 days due to o2 sats 54-72. Now all of my physicians feel they have came to an accurate diagnosis being Hepatitis C. In Feb I also had very bad pneumonia in both lungs. I just received yesterday in the mail notice from my counties health department of the need to get Hep A and B vaccines asap due to me having Hep C. Apparently the upper left quadrant pain (severe) was indeed my liver being inflammed. I go back to my family doctor the 7th of this month and to a liver/GI specialist the 20th of this month. Starting interferron has already been discussed. I'm scared to death. I have never used IV drugs or any street drugs. In 1981 and 1985 I received several blood transfusions. I'm weak and basically have no energy, nauseated often and have all over general aches and pains. No yellowing of the skin/eyes. Please readers I would appreciate any info regardless of how lame you may think it is. I'm confused also as to what internet sources are reliable information. Thanks so much !!!
billm57 responded:
sorry to hear about your circumstances - yes get tested for prior hep a and hep b exposure - if you dont have the antibodies you will need the vaccines as coinfection with hep c can be extremely hard on the liver - upper left quadrant pain is not usually indicative of liver inflammation - that would most likely be upper right quadrant pain - the upper left could be the spleen or tail of the pancreas or the left edge of the liver - hep c can cause spleen and pancreas damage --- the gastro dr will test to find which genotype of hep c you have and determine your viral load - also a biopsy to determine liver damage may be recommended--- if you are found to have genotype 1 i would suggest asking him/her to have your IL28B genotype determined also - if you are a CC you wouldnt have to do the new triple therapy - but you could if you choose - triple therapy is harder to endure but treatment time could be reduced - if you are a CT or TT it would be best to do triple therapy --- hep c genotypes 2 3 and 4 require only combo therapy - genotype 1 combo therapy lasts a year while triple therapy could be only half a year - genotype 2 3 and 4 only require 6 months combo therapy
Bonnysue responded:
HepC stinks. I also have RA and I tried the triple therapy. I could only endure it for 7 weeks. I became so anemic I needed 3 blood transfusions. It is BRUTAL. I have know idea how anyone gets thru it for as long as its prescribed. Gastro Dr. said it was too much for me. I now am loosing my hair 2 months later. I am going to see a Dr. at UCLA and get his opinion on a drug called Cyclosporine. It won't cure either Hepc or RA but there is a chance it can slow both down. Has anyone heard of it? I hope you can find the answers you need. You are your own advocate.
billm57 replied to billm57's response:
sorry - genotype 4 could require a year combo tx along with genotype 1
billm57 replied to Bonnysue's response:
sorry to hear that bonny - cyclosporine and tacrolimus are immunosuppressant ( anti calcinurin ) drugs best administered by a rheumatologist - as with all immunosuppressants - they can be potentially dangerous - they offer basically a short term relief of symptoms with some possible major side effects - the pros and cons need be carefully considered
hepsister responded:
Arge 1966,

sounds like you have been through so much already. I understand your fear I wanted to trust my doctors but having been missed diagnosed since 1994 that was really hard to do. Hep C symptoms look like so many different things and all. I found out through a pre-employment screening. In my search for answers I found the Book "Living with Hepatitis C for Dummies. It has been extremly helpful. As for internet resources : - you will find under federal programs a link for department of veterans affairs a national hepatitus C program. lots of information there. Med scape is another good page. I have found there are many natural ways to cope with the symptoms but not cure.
gretasmydog responded:
I am so sorry that you are very sick, A good dr is a god send ,make sure you have one. I do but its a lonely sickness.