Hepatitis C can cause other problems, not just liver problems

[pooh55811]

I am still fairly new to the forum and perhaps this issue has been discussed previously. I read some posts that indicate some people are mainly concerned with liver damage and seem to feel if the liver enzymes are normal and they are not symptomatic, then they are doing well and the Hep C virus is not causing them problems. That may be the case. However, that was not the case for me.

I have been infected with Hep C for 30 to 35 years depending on exactly when I got infected, either through blood exposure at the hospital where I worked  or through the Gamma Globulin injection I received in 1975. I was diagnosed this year after a routine liver enzyme test  was found to be elevated this spring. Prior to that I had no physical symptoms, or so I thought. I had periodically had elevated enzymes during the 1990s but that was always attributed to some medication I had been taking (amoxicillin, for one) and the enzymes always went back to normal.

In 1993 I was diagnosed with systemic vasculitis, cause unknown. I was tested for everything in  the book (except Hep C, which was not on anyone's radar at that time and which was not suspected or being tested for at that time). The specialist (who was an excellenmt doctor at a medical center in SF) could never pinpoint a cause. After almost a year on high doses of steroids, 7 months off work, a hemoglobin that dropped to 9, pleuritis and pleural effusions, pericarditis and pericardial effusions,  unbelievable fatigue (sometimes I could not even get up to heat up a can of soup), a case of shingles (due to immune suppression), I was finally more or less back to normal. I say more or less, because I have never been the same as I was before the vasculitis. My energy level and stamina never rebounded.

Fast forward to July 2011 and my Hep C diagnosis. It turns out that the systemic vasculitis I had in 1993-1994 was almost certainly caused by the Hep C virus that was in my body at the time.

I am relating my story because I see posts where people are considering delaying treatment or not doing it at all either because they are afraid of the treatment or because they feel their their liver disease is not active and/or not progressing. I am living proof that Hep C can cause a whole lot of medical problems other than liver and liver related problems.

I am very thankful there is now a pretty good chance I can be rid of this diease. I jumped at the chance to treat this disease and (hopefully) get rid of it. Sure, I was and still am scared of the side effectas and, being Genotype 1, being overweight, and having a high viral load,  I am scared I may not clear. I am only a little over 3 weeks into treatment and I know my side effects, while present, have not been too bad (except the rectal pain). I know they could get worse. However, I know that not treating this disease can debilitate and kill me, in more ways than one.

Everyone has different circumstances and everyone has different medical problems to consider, but I just wanted to share that a person can have  normal liver enzymes and a normal liver and still develop other major health problems from the Hep C virus. It is definitely a very nasty, very invasive, and very busy little virus.

[pooh55811]

Thanks. I will look into those threads.

[pooh55811]

When I was diagnosed with systemic vasculitis, I was literally tested for just about everything you can imagine, except HepC, LOL, but no one was testing for Hep C then. It just was not on the radar for causing diseases like systemic vasculitis. (In fact it was just barely on the radar for causing Hepatitis.) I was even tested for HIV, which was negative. I had an excellent, competent immunologist/rheumatologist who was affiliated with a major medical center in SF. He had a great deal of knowledge and experience. I had numerous blood tests, numerous cultures, a thoracentesis (needle into the pleural sac) for pathology testing and other testing, and numerous other tests. Many of my lab tests were abnormal, but there was no definitive cause that could be determined at the time. The lab abnormalities all pointed to systemic vasculitis as did my symptoms. I did not have any of the diseases that were known causes of vasculitis, such as Wegener's disease, lymphoma, rheumatoid diseases, systemic lupus, multiple myeloma, cancer, etc. The specialist ruled out all of those diseases. At the time, the specialist told me it was most likely caused by a virus but they did not know for sure and, if it was caused by a virus, they could not identify it.

It has since been established that Hepatitis C is a definite cause of systemic vasculitis. Since I did not have any of the other diseases or causes, my current specialist and my previous MDs/specialist all state that the Hep C was almost certainly the cause. So, I actually do not know 100% which is why I said almost certainly (but not certainly).

I posted about it because I think people should be aware that Hep C can affect more than just the liver (which is bad enough) and delaying treatment or opting not to treat at all, does not mean a person only has to worry about how the Hep C will affect his/her liver. In my case, if the steroids had not worked, the next plan was to treat it with Cytoxan. Left untreated, I would have died from the vasculitis (or I should say, the effects of the vasculitis which were noted in my first post).  Also, as noted in my first post, my side effects from the triple drug treatment so far are not too bad, and they definitely are not anywhere near as bad as the hell I went through with the vasculitis. I will admit, even after reading about the side effects and how sick some people become, I was afraid of the side effects, but I was still sure I wanted to treat and I was sure I could get through the treatment because I had already been through hell with the vasculitis. I figured if I could tolerate the vasculitis I could tolerate the triple drug treatment. I hope I am correct about that.

I agree with all of the above posters that the diseases you have mentioned are probably from the Hep C.

Here is a link to Mayo Clinic about causes of systemic vasculitis:

http://www.mayoclinic.com/health/vasculitis/DS00513/DSECTION=causes

"Vasculitis with no known cause (primary vasculitis):
For many of its forms, the cause of vasculitis is unknown. These forms of vasculitis are called primary vasculitis.

Vasculitis that occurs due to another disease (secondary vasculitis):
Forms of vasculitis for which an underlying disease is the cause are called secondary vasculitis. Examples of causes of secondary vasculitis include:
1) Infections. Some vasculitis occurs in response to an infection. For instance, most cases of cryoglobulinemia are the result of the hepatitis C virus infection, and the hepatitis B virus infection causes some cases of polyarteritis nodosa.
2) Immune system diseases. Vasculitis can also occur as the result of some diseases of the immune system, such as rheumatoid arthritis, lupus and scleroderma.
3) Allergic reactions. Sometimes an allergic reaction to a medication may cause vasculitis.
4) Blood cell cancers. Cancer that affects the blood cells, including leukemia and lymphoma, can cause vasculitis."

[desrt]

You can type 'extrahepatic' into the search box at the top of this page for threads devoted to this topic, or go to
http://www.uptodate.com/contents/extrahepatic-manifestations-of-hepatitis-c-virus-infection
and many other sites for this topic.
It's true that those of us who haven't had to deal with this give it very little thought. I wasn't even aware of it till I joined this site.

[suezeeque]

I have a couple of autoimmune diseases, both of them started after I was exposed to HCV.  I absolutely believe that HCV caused these diseases, however, I shall never know for sure.

How do you know the HCV caused your vasculitis, for sure?

[curiouslady1]

I have lichen planus and oral lichen planus both of which stem from HepC infection.  I know what you are talking about.  

[hondapatches]

Yeah it is, this is my third treatment I have the sores on my tongue and I am anemic I have very little red blood cells. I also have the rectal burning. I started the procrit and I'm just waiting for it to get in my system.. Good Luck