Hep C side effects while not taking treatment

[DSG]

Hi,
This is my first post.I was diagnosed with Hep C 10 years ago.I have never had treatment as my liver enzymes were only slightly elevated and my liver bio was close to normal.My VL vacillated from 40 mill to 10 mill. Until recently I have not felt any possible side effects from hep c and my gastro guy says to just keep doing what I have been doing which is a very heavy anti oxidant diet.I'am a male of 64.I also suffer from gout attacks but since taking allupurinol my attacks have been less frequent and my uric acid is now normal, I workout 4x a week and I;am in excellent shape.Hardly even thought about HCV.

My last 3 blood tests showed my alt/ast in the normal range and my liver bio in December 10 was close to normal.However, about 6 weeks ago I started experiencing afternoon body aches and fatigue...everyday..I started taking rocicet for pain relief, just 1-2 daily.My daily aches became almost continual and I have really felt lousy for 6 weeks. Unexpectedly. about 3 weeks ago I had another gout attack.Since the body pains and fatigue started well in advance of my gout I did not tie the 2 together.I stopped taking rocicet and to my surprise it has taken me a week to rid myself of those side effects..I'am clean from the rocicet now..I believe and no intentions to ever use the pill again.

I had extensive blood work done and everything came back normal except the VL which was 30 million.My doc say sI should see a infectious disease doc.

My question is this....how likely  are my body aches and fatigue tied to HCV with normal alt/ast levels and a near normal liver bio ......my body feels on fire sometimes but no fever.

The last couple days I have started to feel a little better and also wondering if at even a low dose of 1-2 roxicet pills daily for 7 months could my body be reacting to this drug and crying out for larger doses?

Any advice or input would be greatly appreciated.I'am genotype 1 and have been told current drugs to eradicate the virus won't be effective.

Thanks, Dave

[DSG]

My doc is a gastrointeroligist..Because my alt and art have been normal and my liver bio unchanged from stage 1 10 years ago plus I had being feeling terrific we never seriously discussed treatment.Frankly, if I feel no side effects and my liver bio stays level 1 I would prefer to put off 6 months of hell even if the chances were 80% the treatment would eradicate the disease...I just read about how awful the side effects are and my wife has advanced RA and I have to be there for her.

I do have my blood tested every 6 months and everything is normal except the high VL.

Thats all for your input..Dave

[Willy50]

"10 years ago, then another 5 years ago and then my most recent one just in December of 2010..all were stage 1 and show no progression. "
==================================

Your last biopsy was like 7 months ago?  I don't think you need another.  : )

Your doctor is sadly out of date on current treatments, which concerns me.  The doctor *may* be first rate in other areas, but they are really in the dark on current hep C treatments.  You cannot make good medical choices with info that is flat out wrong.  My concern is that they are not first rate in other areas as well.......

It could be that your genetics, lifestyle and diet are helping you hold the line against liver damage progression, but you DO need to monitor your liver staging more closely.  I can't help but think that a doctor more current w/ HCV is in order.  If they don't know about HCV new TX then they may also be in the dark about other extra-hepatic issues that HCV may also manifest.

best,
willy

[CaughtOffGuard]

Please find a good doctor and have a liver biopsy done soon.

-----christina

[curiouslady1]

If your wife is ok with it and you have a full understanding and consciousness of the risks; it is your choice.  

[DSG]

Thanks all for your advice..I guess I was nebulous in my previous writings about my liver bio.I had my first one about 10 years ago, then another 5 years ago and then my most recent one just in December of 2010..all were stage 1 and show no progression.

As I have written,if my liver bio showed progression, even to stage 2, I would seek treatment. but so long as I continue to feel good and with a stage 1 I think I will defer to the future.Hopefully, treatments will continue to improve.

I also am a huge believer in anti oxidant therapy and over the past 3 weeks have really inundated my body with anti oxidants....Anti oxidants are molecules that carry an extra electron,Free radicals are missing an electron..so, instead of attacking a healthy cell to take its electron it attacks molecules that have an extra electron and thus precludes damaging cells..thats a simple layman explanation...having a diet in high anti oxidants is very healthy even for those without disease as it protects cells and slows down the entire aging process from the free radicals in our bodies and in the air.

[curiouslady1]

I would probably do the same thing if I were in your shoes and believing what you believe.  Please don't tell us however, that you are not affected by HepC.  It has been in the back of your mind since you were diagnosed.  For me, it affects all my relationships because I know I am a carrier (though I don't share the knowledge) and HepC is the first thing I think about when any little ache or symptom out of the ordinary affects me.  Probably you will die of natural causes.  But you will always wonder if those "natural causes" were HepC related.  I tried to get into a research study 15 years ago and was excluded because they detected a thyroid disorder.  The study doc who is pretty well known in some circles (Stuart Gordon) shared with me they had detected a connection.  I just googled him the other day and saw his research has found a connection between kidney cancer and Hep C.  I am the same age as you and I have lichen planus and oral lichen planus and both are linked to HepC.  I have insulin resistance, also linked to HepC.  We didn't know much of this 20 years ago but now we are finding more and more links between HepC and other, seemingly unrelated disorders and diseases.  I am trying to get into a research study which gives you a chance to clear the virus without enormous side effects.  There are opportunities like this coming up a lot esp if you have never treated.  When I was dxed 20 years ago there was nothing for us and I didn't treat.  Later I was glad I didn't with 1a.  But now, things are different.  Boomers are converting quickly to disease though the rate of progression was slow in previous years.  And there is a lot more info and opportunity out there now.  

[willbb]

I forgot to add ..many doctors treating HCV  are somewhat reluctant to tx. HCV once someone reaches the mid to late sixties( some ..certainly not all) ..this is due to the meds  adversely affecting other health problems..especially  in reference to the heart..
so  possibly a biopsy now and then given that fact ...    it may influence your desicion to treat.

Best to you
Will.

[EyesofBlue55]

I would definatly seek out the advise of another dr ,preferably a hepatologist as the others have said.Maybe the meds wenent that effective then but now you have a 75-80% chance of clearing this.Your Dr is not keeping your best interest at hand.Find another one.Also this virus could be sneaking up on you.I would also have another biopsy,just because you were stage 1 a few years ago doesnt mean you are now.Nothing you take will reduce your VL only Treatment will erradicate the virus.If you are in that good of physical shape-imagine what you might feel like with the virus gone!!!! cindy

[indy531]

I'm stage 0 and getting treated next week, just newly diagnosed. Fatigue has been hard the past year and the PI's are proved to double chances of SVR in GT1 tx naive( up to 75%). I'm goin' for it. I'd consult another GI Dr.

[willbb]

Glad you are feeling better..however I wouldn:t put much stock in how you are feeling week to week  to what  HCV is doing.

Your are very fortunate that your damagre is st1 at 64 years old...however I see you say that was a biopsy done 2 or 3 years ago. It is a known fact that the older we get progression of fibroisis tends to spped up and even in the  time since you have had the biopsy there may have been significantly more damage done.

You may never need to treat ,however  don"t make the mistake of thinking that just because you feel well..the virus is not doing it:s work and very often  chirrosis can sneak up on you.. then things get very complicated.

I would want another biopsy now   if it has been 3 years or so...and if indeed still very mild damage ..would follow up with a biopsy or at the very least a fibroscan and/or fibrosure tests  regulaly..so it does not get ahead of you.

Good luck
Will

[DSG]

I'am so happy to report that after 2 weeks on my high anti oxidant diet my daily body aches have stopped.Its so wonderful to be able to get a good nights sleep and feel good during the day after 3 months of daily body aches.I realize this might just be a cycle but if so, I will enjoy it while it lasts.

[DSG]

Thanks to all for your advice....I take it all very seriously.  I will weigh my options carefully.Being I'am only stage 1 liver bio if my muscle pains/fatigue abate soon I will consult with doc and perhaps wait for a better cure....If I continue to feel like I have been for the past 6 weeks I may have to consider treatment soon.

I have some serious worries about my decreased quality of life under treatment.My wife has advanced RA and will soon go on Orencia and it will likely have a very negative effect on her.So. my inclination is probably to wait as long as I can to see how she reacts to the orencia.

Also, while its likely my aches and fatigue are C related I also have advanced gout and when I have an attack I have the same body aches..being I had an attack 4 weeks ago I'am not ruling out my current problem is not gout related.

I took melatonin last night to try and help me sleep. I have been on ambient for several weeks and decided it was time to stop and was hoping the melatonin would allow me a good nights sleep.....Boy was I wrong...I tossed and turned most of the night and when I did doze I had really bad dreams....now, this might be the result of stopping the ambient cold turkey or the melatonin.At any event, I;m not taking the melatonin again....

Good news today for me is this is the 3rd day of reduced body ache and pain.I have not required a nap in the afternoon.I bought some high potency vitamins and increased my anti oxidant diet.About 7 years ago I had a very high viral load and I knocked it way down by following the high anti oxidant diet....so, my goal is hoping I can reduce the vl enough to greatly reduce the aches and fatigue...it worked before and hoping it will work again.

Having said all that..I suppose I'am at least very grateful my liver bio is still just stage 1 after being diagnosed 10 years ago...If I was 2-3 I think I would not hesitate to go on the meds..and yes, I know,they say the meds are more effective at the lower stage levels.

Again,I thank you all for your input and I will keep you apprised of my condition either way it goes..God bless you all..Dave

[belle19]

hi there, just to let you know that my study nurse told me that insomnia can be caused by hcv.  i think you should look into the new treatments.  i'm in my 6th week.  i'm 61, do cardio classes 3-4 times weekly and work.  i'm usually tired on saturday afternoon, the day after my injection.  i drink lots of water.  my sx are fairly mild.  go for it.  you'd be better off getting treatment now as you're not getting any younger.  i hear it gets harder when you're older.  good luck.  belle

[summer7799]

Yes, my ALT is 56 and my AST ius 43. My viral load is 6.2 million...

[wooie]

The FDA approved two new drugs that are 75 to 85% cure rate including genotype 1 I am haveing same. diagnosed in 97 have had two treatments that failed. It is time to get treatment !! Go see another doctor!

[DSG]

Thanks,
With a VL averaging 30.000,000 over the past 2 years I feel fortunate that my liver bio's are just stage 1.Hence the reason my gastro doc  said the liver bio was the gold standard and did not advise the interferon treatment at this time especially having Genotype 1.

Never felt any side effects til 6 weeks ago when I started gearing primarily afternoon body aches and fatigue.

I will probably load up on anti oxidants and hope to reduce the VL and consequently the side effects.

In a couple weeks if i still have the pains and body aches I will schedule a visit with the doc and see what he says now that I am apparently experiencing the Hep C side effects.

Thanks for your input. Dave

[hrsepwrguy]

I went to the doc because I was having the same symtoms you describe in your first post, all of my blood work inc alt, ast all fell under normal ranges (no obvious signs) which is not uncommon in people with chronic hep c. My doctor was smart enough to test for hep c any way, which was positive for geno 1a VL 11,520,000, then I had a biopsy which showed late stage 3 fibrosis and like I said all blood work (cbc w/diff) fell under normal ranges

[DSG]

Thanks for your advice......are your alt,ast and viral load now normal?Did you ever have a liver bio?

[flcyclist]

I'm a genotype 1a and started with Inf/Riba prior to the arrival of the new PI's.  At 4 weeks and 12 weeks - UND.  Hope this continues on this positive note to SVR.  If I was aware the new PI's were so close to approval, I probably would have waited, but I think its a moot point now.  Your current GI's numbers are not correct and that would cause me great concern.  I'd be looking for someone that treats many HCV patients.  Your chances have improved with the new PIs.  

Good luck

[Boobert]

Listen to nygirl get a new doc, yours is an idiot.

[DSG]

May I ask what your alt, ast and viral load are?

[DSG]

May I ask what your alt, ast and viral load are?

[summer7799]

Hello,
I have not started treatment yet and was just recently diagnosed with hep c. For the past year or so I knew there was something wrong with my body. Never knew it was hep c til now. I started getting tired very easily and having no energy. I get headaches and sore muscles. Sometimes have trouble focusing and concentrating. Some days just an overall sick, sluggish feeling. I am not over weight and am only 34. I just thought I was too young to be feeling this exhausted all the time. So in answer to your question, yes...I do have symptoms for hep c. I know a lot of people don't.

[DSG]

Thanks......I think I'am going to see how I feel in a week as I have been feeling better the past 2 days....appreciate your input..Dave