CFS and HVC

[LiliChen]

I have had chronic fatigue syndrome for exactly six years and one month. Had a lot of blood tests but no hepatitis had been uncovered at that point. I don't understand that because I must have contracted the virus decades ago (or I should say I am quite sure but of course one never really knows). I am just wondering if any of you have both of these woes and would you have something to say about it? As of this time, my only complaint is fatigue and I do not know if it is from HVC or CFS.
I am thinking about that interferon regimen. I am wondering if I have the mental stamina to withstand that stuff.

[BoceprevirGal]

  Hah, dont get ahead of yourself!   Your biopsy may have you at a stage 1. If that is the case, you can Treat with Sofosbuvir , and that one study I posted, has a 63% cure rate, for geno 3's, by adding an extra 4 weeks, so it would be a 16 week course of meds with NO Interferon.
   Now, if you are in the 37% that doesn't clear, then you can try the Interferon route-
Most of the "horror stories" that you read on here (about the painful side effects) are from those of us that are genotyp 1's, and we had to do the "Triple Treatment" with the first generation Protease Inhibitors; Victrelis(aka Boceprevir) or Incivek(aka Teleprivir)-  these meds cause the blood values, especially the HGB, to get very run down.
  The 2nd generation Protease Inhibitors, (Sofosbuvir is being approved first, but there are more coming down the pipe-line...all the companies competing, this is huge) yield much less side effects.
   I also have friends who are genotype 3's, that have had to Treat for 24, 36 or 48 weeks with the Interferon and Riba, and they managed it well.  I did 28 weeks of Interferon, and it was hard on my teeth, so it is great that you had the teeth work done already!

[LiliChen]

I am having a hard time getting a handle on this. In June I went overseas and had cosmetic surgery; I had 5 procedures done and also dental (crowns redone and some veneers and whitening). Prior to going overseas I was training toward the Insanity workout. My intention was to conquer Insanity, get a trainer's license, and go for showing other older adults that if they couldn't do that too, at least they could try. In April I defended my thesis and earned an MS degree. I did these things at the age of 64.

Now I have to get my mind around the fact that I have HVC and I am turning into a wimp. I have visions of liver biopsies and peginterferon that will not leave me alone. I wonder why I am posting this protracted whine.

[ceanothus]

I believe my history is probably similar to yours, at least regarding fatigue. My first clue arrived in the form of a really abrupt (literally overnight) onset of severe arthritis in all the joints of all my fingers. Lots of tests were run and the first thing to show up was highly elevated liver enzymes (around 800). My PCP sent me to both a gastroenterologist and a rheumatologist, and for a long time it was assumed I had two separate problems. The serious fatigue started about six months later and many diagnoses were considered, including cfs, fibromyalgia, early RA, and early lupus. None if them really stuck though I always felt like if I had readily accepted any one of them, then that label would have stuck. Eventually a second rheumatologist suggested that all symptoms could be explained by an autoimmune response to the HCV, and that felt right and did end up sticking pretty well. All this started back in 1986. Over the years the arthritis has shifted to include other joints and the fatigue has steadily increased. In 2004 I was diagnosed with cirrhosis and around that time I started being really troubled by brain-fog as well. I treated the HCV unsuccessfully in 1991 and again in 2005-2006, but finally beat it recently with triple tx, and was declared SVR last March. It took 9-10 months to start feeling much better and now at almost 12 months post-eot, I still find some fluctuations happening. About a month ago I was feeling immensely better, with fatigue and brain-fog down to only about 20% what it was at worst. Right now it is back up to 50-60% of its worst again, possibly because I had joint replacement surgery in my right thumb 2.5 weeks ago and it required a light dose of general anesthetic, which can sometimes pose problems for cirrhotic livers. That's my guess anyway. I just wanted to confirm that yes, it is reasonable to think that perhaps your fatigue has always just been due to the HCV, and also to encourage you in your hopes of beating the virus and regaining health. The road may be full of twists and turns, but for most of us it is now navigable (slowly). Good luck!

[pooh55811]

I have to agree that the severe fatigue could all be from the Hepatitis C. I had severe fatigue for several years prior to treatment. I did 48 weeks of treatment and the fatigue is completely gone. I feel better than I have for 20 years. I never get tired anymore.

I am not saying for sure that your fatigue is from Hep CV, but it very well may be. Maybe you do not have CHF at all. Maybe your symptoms are from the Hep C and after you get rid of the Hep C maybe your symptoms will disappear.

Treatment is no picnic, but it is doable, and it is truly well worth it to get rid of the Hep C. I would do it again if I had to.

You can do it. Just come here for support and information. Get a good Hepatologist. You can do it.

[LiliChen]

As always Hector cuts to the chase and is spot on. I am now of the opinion that I do not have CFS but have had undiagnosed HVC these years. Since I presented at that primary care clinic with like symptoms, it is not IMHO unrealistic to expect the doctor to have considered HVC and ordered tests for that or at least asked me about my 'history'. Otherwise, what is the function of these sorts of clinics. The doctor was Vietnamese; I would have thought this might have occurred to him. I myself lived most of my life in East Asia, he should have picked up on it.
Well, he did not and no use crying over spilt milk.
Boceprevir, I appreciate your "after you clear your virus" - that is the attitude to take, I need that attitude as I am becoming hopeless.
Nuhepper,  It's true, working from the house will do me in good stead, I can keep working hopefully during tx.
Thanks all, LC

[nuhepper]

Hi Lili,

I have experienced fatigue on this tx and other side effects.  But, it is probably from a combination of tx, working full time and various stresses and strains at work.  The Doctor gave me nuepogen which helped a lot. My age is 59.  

If you are in a situation where you don't have to work real hard and you can take leisurely walks and do your juicing etc, you should do ok.

If you have been living a healthy lifestyle you may find it offensive to pump  these toxic drugs into you body.  It is just a trade off and there is no other viable alternative at this time.  I was anxious to get started with this tx because of daily fevers and chills and a just horrible feeling from the HCV.

You are a good researcher.  Keep searching until you have all your answers.

[HectorSF]

"Because there is no blood test, brain scan, or other lab test to diagnose CFS, the doctor should first rule out other possible causes.'
You should have been tested for hepatitis B and C to have them ruled out.

"Had a lot of blood tests but no hepatitis had been uncovered at that point."
Persons are not normally tested for any type of hepatitis. So it is not uncommon for people to learn they have hepatitis C decades after when they were infected. That is why most Americans infected with hepatitis C are not aware that they are infected with hepatitis C. Fatigue is the most common symptoms of hepatitis C infection. Unfortunately most primary care doctor no little to nothing about hepatitis C. Only gastroenterologist and hepatologist understand hepatitis and its resulting liver disease.

Good luck.
Hector

[BoceprevirGal]

  I know fatigue is listed as one of the side effects of Hep C, and I have heard of other members who have experienced it, but I never did.
   I kept thinking, that when I began to feel fatigue, then it would be my "sign", to Treat.   Instead, my platelets dropped below normal range, and my cuts began to take too long to heal, and would bleed alot, as well as my gums, when I flossed, so that was my sign,instead. It really varies.
   My husband does have fatigue, and joint pain, and he just finished a Clinical Trial, that was Interferon Free, and lasted 12 weeks, with not too many side effects.  The meds were froma company called Abbott, or AbbVie, and you can read about the meds, if you put "Aviator Study" in the search bar.  His fatigue did get worse, during his 12 week Trial.
   My experience with the Interferon was that, four hours after the shot, I would get sleepy, and take a nap, and sometimes the next day also, but the other days of the week, I felt okay.   I never ran a fever from the Interferon, although some run a slight fever, from what I've read on here.  I never felt sick, like how a person feels, when they are down with a bad cold, or a Flu.
   I hope that after you clear your virus, that you will gain some energy back~