Please help

[klb6]

Hello.  I was Dx with Hep C in July.  My VL is 250,000 and I am geno1a.  I am currently trying to get in a study, so have not started any treatment.  I am really confused on why I am feeling so horribly all the time if my level is so low.  Have not had a biopsy, but ultrasound showed normal liver size and my Dr says my bloodwork only shows slight liver damage.  I started having pain in my hands & feet and that is how I ended up being diagnosed.  I haven't had any pain in my hands in several months now, but still have pain in my feet and now back.  It's like the pain keeps moving every couple of months as the pain in my feet isn't near as bad as it was last month.  The pain in my back is really starting to get to me as by the end of the day, all I want to do is hit the couch and my heating pad.  I am now having issues with being weak and out of breath just walking across the length of my home...I have zero energy.  I am starting to get depressed as all I do is come home and lay around.  It is a huge task for me to do any light chores even.  My last hgb was 15.8, so I know I'm not anemic, but that is how I feel.  Has anyone else experienced these things before treatment?  Any advice?  I have left a message for my Hepatologists on all of this also.

[ceanothus]

I agree with everything Pooh said, and want to add that I too had lots of extrahepatic symptoms from very early on. HCV can trigger an autoimmune reaction in some people, and I abruptly (literally overnight) developed an autoimmune arthritis that mimicked rheumatoid arthritis in many ways. It affected my hands first, but later on started moving to other parts too, and my efforts to figure out what was happening to me led to my initial diagnosis of hepatitis back in 1986. On the other hand, you actually could have multiple illnesses, so it's a good idea to see a rheumatologist for their tests too. My tests revealed a positive ANA but nothing else, leading my rheumatologist to tell me (back in the early 1990's) that I could have early lupus or early RA, but she was guessing it was all being caused by the HCV. We did try some of her arsenal of drugs and I have found a tiny it of relief from taking two of them: plaquenil and Limbrel. I finished my third round of HCV treatment last Setember and am still UND. I haven't yet started feeling great like Pooh, but I still hope to get there!

Try to keep your liver care coming from a hepatologist as much as possible, rather than your PCP, and let us know the results when you get a biopsy. It truly is the most reliable way of assessing the health of your liver.

[pooh55811]

If it was me I would want the doctors to check out other possible disorders as well. There are many disorders that Hep C can cause, including autoimmune disorders. Many of these cause symptoms similar to what you have. In addition, some of your symptoms may be unrelated to Hep C so you would want to know as much information as possible so that they do not miss some other diseases as well.

I did have systemic vasculitis in 1993-94 but at the time Hep C was very new and no one realized it was due to the Hep C (until later, after I was diagnosed). Here is a link to extrahepatic manifestations of Hep C. However, they should be checking for diseases that may be unrelated to Hep C as well. That is what I would want, a thorough investigation of what is causing the symptoms.

http://www.ccjm.org/content/72/11/1005.full.pdf

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

http://www.hindawi.com/journals/cdi/2012/740138/


You are not a hypochondriac.

[klb6]

Thank you for replying.  I'm sure they will send me for a biopsy at some point,  I guess I will wait to hear from my hapatologist to see if I need to see my PCP or if he will run more tests.  Someone else suggested being tested for other autoimmune diseases, as well.  Right now, I just feel like a hypochondriac...LOL.  Thank you for the info on the studies, I am clueless right now with all of this.  Just want to feel better!  
Congrats on being UND!  

[pooh55811]

"My VL is 250,000 and I am geno1a.  I am currently trying to get in a study, so have not started any treatment.  I am really confused on why I am feeling so horribly all the time if my level is so low.  Have not had a biopsy, but ultrasound showed normal liver size and my Dr says my bloodwork only shows slight liver damage."
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If you are trying to get into a study, be sure to research it very well. It would be better to get into a Phase 3 trial than a Phase 2 trial. Re sure you have the option of rolling over if your treatment drugs fail. There are many members on the forum who have done trials and they could give you more specific information.

The viral load does not tell you how much liver damage you have. The viral load also is not going to be an indicator of how many other symptoms you have.

The ultrasound is not going to tell you much about the condition of your liver (fibrosis stage) unless you have advanced fibrosis. So you cannot rely on an ultrasound to tell you which fibrosis stage you have (unless you have advanced fibrosis).

Your blood work, unless it is a very specific set of blood tests and calculations are made, also will not tell you how much liver damage you have. Many people have normal blood work even when they have higher fibrosis stages.

http://www.mayomedicallaboratories.com/test-catalog/print/91402



"I started having pain in my hands & feet .....and now back.  ..... The pain in my back is really starting to get to me as by the end of the day, all I want to do is hit the couch ..... I am now having issues with being weak and out of breath .......I have zero energy.  I am starting to get depressed .....  It is a huge task for me to do any light chores. Has anyone else experienced these things before treatment?  Any advice? "
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I do not know for sure what your symptoms are from, however, Hepatitis C does have many extrahepatic manifestations and your symptoms COULD be related to Hepatitis C.

Your symptoms very much resemble my symptoms before treatment......aches and pains in legs, joints, back; peripheral neuropathy in feet (pins and needles and some numbness); zero energy; noticeable fatigue; depression; a task to do chores;

I retired early because of my back pain. It would start hurting (a lot) within 30 min. of getting to work and would not stop until I hit the couch and went prone after getting home. I had migrating joint pain but it was always some place, LOL, usually several places. I had no energy. Everything was tiring and a chore to do. If I cooked a meal for friends, it took me 4-5 days to prepare it, one dish a day. If I baked fancy time-consuming desserts, it took me 2-3 days to cook one dessert (the tea room turtle bars come to mind ... grind the nuts and sliver the chocolate on one day ... make the crust one day ... make the caramel filling and chocolate topping the third day). (If I was really feeling great, I could cut out one of those days.)  I had to rest in between everything I did. I was too tired to do my garden work, let alone start more time consuming land scape changes. I was tired way to early in the eve, much earlier than everyone else. My fatigue and the back pain and loss of energy kept me from doing many things I would otherwise have done. I also got depressed.

Now, this was a huge contrast to the way I used to be ..... worked 70-80 hours a week at a high energy and physically taxing job 12 hours a day; volunteered; hiked in the canyons in the Southwest for 4-6 weeks every year; walked everywhere in SF ... up and down hills, everywhere; was never tired; had a ton of energy and pep; no aches and no pains.

So you can see the huge change, monumental change, in the healthy me before Hep C started taking its toll.

Okay, so then I treated for 48 weeks with Triple Med Treatment (Interferon, Ribavirin, Incivek). I finished treatment Aug. 25, 2012. All of those symptoms are not gone. I have zip, pep, energy. I do not get tired. I do not have all of those aches and pains. The peripheral neuropathy is gone. I can stand in the kitchen all day long and not get tired. I baked for 6 days straight, every day all day long, for a benefit bake sale. I made those tea room turtle bars, 2 batches, in one day and i also made several other items the very same day. Huge difference from before treatment until now.

As far as weakness and being out of breath, I did not have as many problems with those items. Tired yes, weak no. But weakness could be a result of decreasing activity due to the fatigue and pain. I have asthma, so I get a bit short of breath on hills, but the asthma is also much better than before treatment. I am just saying, the weakness and shortness of breath should probably be checked out in case either is from some other disease process. However, Hep C can affect the lungs so it is possible it is from the Hep C.

Again, I have no idea if and how many of your symptoms are due to Hep C, but mine were and now they are gone.

Just for the record, I was diagnosed in July 2011 and started treatment Sept. 26th, 2011. I had Stage 2 fibrosis. Am I glad I treated? Absolutely! And I would do it again if necessary. My 12 week post end of treatment viral load was Undetectable so I have 99.7% chance of cure. I am 67 now, and I feel like I could walk 30 miles in the canyons again. I feel great and am happy as a clam that I have my life back.