I have had Hep C for 17 years and I would like to know if there is anyone with Hep C genotype 1a with severe debilitating symptoms such as I have. I can't work. I have severe nausea, brain fog, fatigue, vomiting at least 3 time a week, Painful neuropathy every day. I'm feeling very alone with this disease and need to relate to someone who is as symptomatic such as I. I'm working towards going on triple therapy treatment with concerns of the severity and complications of my symptoms. All the doctors that I have talked to tell me that I shouldn't be having these symptoms with Hep C and now am confused if I can even go on treatment safely.
Uhm, have you had a biopsy? All of us have very different symptoms, but Doctors are starting to realize, just within the past few years, that there are many "extra-hepatic" symptoms, that go along with Hep C. That means symptoms tha affect other areas, besides the liver.
I had many symptoms, but different from yours.
Many of the symptoms you listed, are indeed symptoms of Hep C.
The neuropathy is a characteristic of something called cryrogobulinemia ( I prob misspelled it). If you get Treatment, about 50 to 75% of the time, this goes away, when we cure our Hep C, but sometimes the Interferon can actually make joint pain worse.
This is why a biopsy is important, to see if you have time to wait for the new, Interferon Free Treatment, which should be here in as soon as 1 yr, or if it gets held up, it may take as long as 5 yrs (but most likely it will be here sooner)
If you have to do the Triple Treatment, there is anti-nausea medicaine, which you can take, called Zofran~
I am sorry you are suffering so much. Obviously something is wrong and you need a more detailed diagnosis that encompasses all of your symptoms. Being diagnosed with hepatitis C is not the full answer in my opinion.
"I have severe nausea, brain fog, fatigue, vomiting at least 3 time a week, Painful neuropathy every day."
"All the doctors that I have talked to tell me that I shouldn't be having these symptoms with Hep C "
Brain fog, fatigue and neuropathy CAN be extrahepatic symptoms of hepatitis C and also symptoms of advanced liver disease.
Nausea and vomiting are NOT commonly caused by either hepatitis C or advanced liver disease.
What type of doctor is treating you?
It should be a gastroenterologist or hepatologist.
What stage liver disease do you have?
Have you had a biopsy?
Do you have abnormal blood tests results?
What are they?
What other tests have been performed to assess your condition?
Scans (Abdominal Ultrasound, CT scan or MRI), endoscopy (looking down your throat), etc.
Thanks for replying as I'm really desperate for some answers as I found my gastroenterologist didn't believe that all the symptoms I told him were from my Hep C. That made me even more confused caused I have been pretty ill since I contracted this diease. I need some validation as I feel overwhelmed with about 8 - 10 symptoms and I can't function expecially within the last two years. I had a fibroscan done last week and my test was that I was 0-1 fibrosis and I have had this diease since 1996. If it is that low in stage 1, why am I getting sicker by the day? I''m a single mom and I have a 13 year old girl to raise and I want to be somewhat well and get rid of these disease so I have some hope in my life. Thanks.
Thank for answering. I do believe these are extra-hepatic symptoms and mine are so severe that I can hardly function day to day. I had a fibroscan done last week. It's just as accurate as a liver biopsy and my score is 0-1 fibrosis and .2 cirhossis which shocked me cause my symptoms don't leave anymore. I used to get a reprieve here and there but not anymore. I have a 13 girl to raise and I pray to get well everyday. I'm not sure if I can wait for the next new treatment as I feel pain when I didn't used to and I have been getting depressed. If I felt a little better, I definitely would wait for the non-interferon treatment but I'm losing my patience.
I also get fed up with these doctors and won't even consider these other symptoms that I been dealing with. I'm going in for a GI endoscopy on Monday to rule out where these symptoms are coming from but I somewhat believe that they are all to do with the Hep C.
I've been suffering so badly and I wonder if the triple treatment is going to be any worse cause the way I see it, I am already experiencing being very ill all the time now.
Thanks for your reply. I really need to get to the bottom of this. I am seeing a gastroenterologist and what bothered me was him telling me that he was skeptical that these symptoms are from Hep C. That confused me and then he ordered my fibroscan and I just got tested last week and my liver is a stage 0-1 fibrosis. That made me more hopefully but I'm to do a G.I. Endoscopy on Monday and I guess they might find something else. Now I have chest wall pain and ended up in Emerg. cause I thought I was having a possible heart attack. Everynight, my symptoms get so severe I have to take ativan and painkillers. I wonder if going on triple therapy treatment is going to clash with these symptoms. I have a lot of questions and I would really like to get in touch with anyone else that is in the same boat.
A hepatologist is a liver specialist. Most of the problems associated with hep C come from liver damage. This is why a hepatologist is the ideal doctor to see when treating the virus.
We are all different but I almost died of hep C, had to have a liver transplant, and had few of the symptoms you mention.
If you are at stage one fibrosis, then I think there is something else going on with you.
It's easy when having hep c to think all our physical problems are because of the virus. Some may be. The most common symptom is fatigue.
However, much of what you speak of does not sound hep C related.
If I were you, I'd get a general physical and approach these symptoms with the idea of finding out exactly what is causing them, rather than assume they are from hep C.
I think it would be advisable to see a Hepatologist. You know you have Hep C and you are symptomatic, so, in my opinion, seeing a Hepatologist would be advantageous.
If it was me I would want a liver biopsy to get a better determination of liver fibrosis stage.
You do not have to have major liver damage to have extrahepatic manifestations of Hep C. The virus itself can attack other areas of the body and/or it can cause liver problems which then cause other symptoms. Doctors often do not realize how many symptoms can be cause by Hep C.
As an example, I am only at Stage 2 now, but 19 years ago, when I was probably at Stage 0 or Stage 1, I had systemic vasculitis and was extremely ill with pericarditis, pleuritis, and hemolytic anemia. So I had none or very low damage and still I was deathly ill, off work for 7 months, and on steroids for 1 year. Plus I never got back to normal after that. Then, for years, I have had increasing fatigue, joint, muscle, and back pains and aches. My blood sugar was creeping up and I was gaining weight, something I never had before the vascultitis. I also had some peripheral neuropathy and dry eyes, plus sudden onset of asthma in 1980 and sudden onset of multiple environmental allergies in 1979. I retired early due to the back pain. Then, 2011, I was diagnosed with Hep C. I finished 48 weeks of triple med treatment 14 weeks ago and I am Undetected at 12 weeks post end of treatment. I feel absolutely great, better than I have felt for 19 years. All of those above listed symptoms are now completely gone. I am 66 so feeling this great after feeling crummy for 19 years, is fabulous.
I am not saying all of your symptoms are from Hep C. They may not be. However, if it was me, I would see a Hepatologist to get the ball rolling on treating your Hep C.
was reading your post and have to say go for tx...i felt same as you did, and for whatever reason, I feel SO MUCH better on the meds, they are not even causing sx, i do get an occasional pain, or headache, but to compare to the disease itself, strangely NOT NEARLY as bad. Sometimes i wonder if the people who are not sick GET SICK while tx, and those who are sick from the HEPC, get better with tx, I know i did, im 4 weeks in , and i havent felt this great in YEARS! Ive been cleaning, taking kids to movies, out to eat, doing odd jobs around the house, and so on, so dont go by what you read or hear for tx, try it, and then see what happens! good luck to you, i was terrified, and waited 8 yrs, but now i wish i would have done it right away.
I'm sorry that your going down this dark well of unknowns. I have just been diagnoised with HepC and biopsy scheduled in next few days.
Your descriptions follow a number of those that my brother experienced before completing his recent treatment and potential cure after 6 months of Hell.
I want to make some suggestions from a differnt point of view. Many of the symptoms for HEPC also follow what I have struggled with for ten years. Post Polio Syndrome.
No matter how well you feel one day still leaves the thought of what will tomorrow be like as your eyes close for the night. I finally began to take the advice of my daughter. Wait for the **** to be at your door before going into overdrive anxiety. Being under that much stress can stimulate your nervous system and sense of self that you can't really make distinctions between each sympton.
I started a more personal journal. At the top of each page I rated between 1-5 how the day went. I was surprised in looking back after several weeks how many more days I was feeling better then I had remembered.
I would also highly suggest if you have Insurance to look for a second opinion for some of your other issues.
I've had hep c since 1974, just discovered a few months ago due to continuing undiagnosed pain to go along with my muscloskeletal issues. So yeah, you lose a lot of weight 80 pounds and counting since July. It's better to be thin, you will respond better as I understand it. Going to transplant center this Friday, we'll see what they have to say. I take 8-10 Norco 7.5/325 a day plus he put me on a Butrans week long sticky pad (don't notice any difference, still wake in the middle of the night with pain) hate counting my pain pills as I get breakthrough every 3 hours, try to stay within my 8-10/day, but it's difficult. I walk at work 5-10 miles a day, am exhausted and sleep a lot, eat a lot of crackers and bread, with hard goat cheese. My favorite now and it doesn't vomit back up, ha ha. So that's a bonus if you ask me. Good luck, I've got a long journey, so do you. Hope we all survive, but quality of life comes into it also, not just living for your kids/husband/significant others, it's YOUR life.
Wow, your post helped me so much and I feel more hopeful now and not as freaked out about treatment. I just thought, I'm suffering so much everyday with his diease, how WORSE could the treatment be? I'm just waiting to see my Gastroenterologist soon and go over the results of my fibroscan and I had my endoscopy done and have a stomach ulcer as well. So now, I really need my GP to help me relieve these painful and troublesome symptoms and help keep me relatively comfortable until I start triple combination therapy. I'm so ready to do this as my quality of life is the ***** and I'm barely hanging on at times. I pray for a better life. I look after myself now as I have my 13 year old daughter that needs me.
Yes, I was terrified, too...I work 2 jobs, run a small factory , and also my own online sales biz...(which is really taking off right now for the holidays, double the sales),_OH, did i mention i have both a 6 yr old , and a 12 yr old- two daughters who fight constantly, and im keeping up, - i work about 18 hrs per day, and have been since the first day or tx, cuz i feel better than i did before starting, although the 3rd week was kinda crappy, at the 4-5 week into tx...Amazing.. The docs scared the hell out of me so bad that the first time i went, i stayed away for a yr,. kept cancelling appts, and so on...But I do realize they should be honest, however they seem to only telll you the negative of the sx and tx. I was SO expecting the absolute worst, and after the 2nd day, i was like wow, what the !%&(&^, i feel amazing, what was i doing this whole time running away, if i had known all this, i would have done this pronto! I really think they should mention the sx, but also mention that not everyone experiences them, and im wondering if most dont, or the psychological aspect of things, if someone keeps telling you youre going to feel like crap every day, eventually, youre going to feel like crap everyday...its just one of those things, mind over matter, give that a shot, and dont just think the worst, let it happen, and see how it goes, now im not saying youll have my experience either, but you just never know, and btw, what ya got to lose, you already feel like crap, and ya just never know , it might make things better, not worse, go for it, again, youve got nothing but pain and misery to lose, right, good luck, wishing you all the success with tx, im sure youll do fine, and youve been strengthened by this disease, and your mind is a powerful thing, use it to your advantage! Dont let it continue to drag you down, been there, done that, time for a change!
Oh, and one more thing, i had nausea every single day, so even though they say it doesnt cause that, i beg to differ, maybe the hep doesnt cause it , but whatever the hep is doing to the rest of your body itself causes it, i know that was my main symptom every day, and now for the most part, gone...i think that was the number 1 reason i felt so sick all the time, constantly feeling nausea can really put a damper on everything....oh, and keep in mind, the medical practice, is just that, a practice, they dont know everything, how many times have you heard this is good for you, only to find out 10 yrs later they were wrong, same applies here, i think the med community has a VERY long way to go to actually know this disease and its capability to destroy the human body , mind, and spirit, it does every day , or this forum wouldnt be here, right?
Thank you for the support and answers!! I had a G.I endoscopy done on Monday and found out I have an ulcer as well. I wouldn't have known because all these symptoms that I have from Hep C could cause some problems like acid reflux also. So, now I'm healing thiis ulcer now so that I can go on triple treatment, hopefully soon. I'm not blind to the fact that the triple therapy treatment has lots of side effects as well. I''m so sick everday now and who knows how I will feel after treatment . I had to do a Leave of Absent for my work as well. I'm ready to get this show on the road and I thank all of you for your support and time you took to answer my post. All the best to all of you and our journey through this insidious disease
I am so glad you had an upper GI...I too had extreme nausea and lower abdominal discomfort....complained about it every time I saw my regular physician who would just say that it was probably a side effect from my hep C/liver disease..or that I was working 80 hour weeks and needed to slow down. Just accepted that and thankfully have a very high tolerance for pain since I couldn't slow down the work schedule. I finally started complaining last year to my transplant doctor when he was getting ready to do a upper GI looking for liver related issues which I did not have but he was shocked, more like stunned he said when he saw the ulcers I had...not just one, but several active and some healed. They were huge. He wanted to know how I could stand the pain? He told me to immediately stop taking any NSAID pain relievers...he put me Prevacid x 2 a day and within a week my abdominable discomfort lessened and we do an upper GI every 6 months to check on them. I could say it was work related but it was really from the fact that I wasn't eating right...sometimes would forget to eat because I was so busy....had to slow down and sometimes fate steps in and intervenes...my department was eliminated...I no longer had to worry about 60 workers every day because they took our call center to the national one out West and we were all let go. So now a different kind of stress came about but to have the constant worry for 60 families on your shoulders every day in my health condition was too much. Ulcers...who would think that they can be that painful.
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