Extreme Fatigue Before Treatment

[Evannescence]

I am starting treatment this Thursday.  Main reasons for the treatment starting is that I have such EXtrreeeeeme fatigue and some dizziness, that I went to my GP, and off sent me to the Hepatology department 2 weeks ago, and suddenly (after 4 years of deliberating) I'm booked to start treatment.  I realise that my fatigue might get much more intense with treatment (obviously quite panicky about that).  My viral load on Feb 3rd was 39,323 IU/ml which is low as a starting VL.  Will they test my VL minutes before the actual injection (on March 1st), and wait for results before giving injection, or will I have to wait for the results of the bloods to come back first?  Has anyone with fatigue before treatment got even worse fatigue with treatment?  We dont even know that my fatigue is due to the Hep C.  Maybe it's MS. Or glandular fever.  

[niceguy2007]

hi guys..

i'm on week 22 now... had liver/URQ pain on and off since week 13... which worries me.  has anybody else had URQ pain for about 12 weeks like I have?

otherwise treatment is going quite well.

my Hgb rebounded from 11.5 to 12.2, again!

everything else is okay too. im walking more than a mile a day. feel fatigued sometimes but i guess thats normal.

currently on pegasys 180mcg and ribavirin 800mg/day. weight 60kg.

genotype 3a, pretx VL 50,000 IU/ML. age 25, infected about 4 years ago.


P.S. who said a low viral load was an indicator of end stage liver disease? what a dumb thing to day...makes me feel queasy...!

[Kalio1]

Sorry you got the impression your low viral load somehow upset me, that sure isn't the case. I just wanted you to know that it can fluctuate quite a bit from test to test and is an ever changing thing and not an indicator of damage level. It can fluctuate a whole log or more in a day. The virus replicates in the trillions per day.

I agree with you in that a VL test should be done close to the time you start treating because as was mentioned that is the marker for progress during treatment and is a useful tool for that purpose.

[Evannescence]

All that said, I read a disturbing article about low viral load and its relationship to end stage liver disease.  

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10551380&dopt=Abstract


How can I know without a bx that I dont have end stage liver disease.  I guess to wait and see if I develop signs and symptoms.  God is in charge of that one.  I start treatment tomorrow.  

[jmjm530]

It's a heated subject for sure, and always have mixed feelings about posting such threads, but in the end, the facts (at least as reported by members), are best put forth even if it makes some momentary uncomfortable -- because in the end we need as much information as possible to make the right treatment decisions.

-- Jim

[Evannescence]

Jmm.  Thanks for the html doc links.  Some incredibly rivetting and interesting reading there!  You guys can get into a debate or 2.  Brilliant.  

[Kalio1]

Viral  loads fluctuate constantly. The fact that it tested low that day does not mean it would test that low a week later. You really should have a biopsy and determine if you have liver damage and if so to what extent before you make a decision on treating. A low viral load is not an indicator of liver damage level at all. You can have a low viral load and have substantial damage or a high viralload and no damage, the two things do not correlate so don't be lulled into a sense of security with a low viral load. I had a low viral load yet I had substantial damage, so get the biopsy so you know accurately what your situation is.

You should talk to your doctor about this idea that often people who do this treatment end up with other issues from the treatment because that is not the case for the vast majority of people who treat. The majority of people who are able to eliminate the virus with treatment say they feel much better after the virus is gone and they do not complain of these things. There are risks to taking the treatment but the risks of having Hep C far outweigh the risks of the treatment. If I was you I'd not decide on treating based on what people say on the internet, base your decision on your liver condition and what your doctors tell you. Some people are determined to make an issue of the remote possible problems with treatment that have not been verified when avoiding treatment could end up being a very dangerous health decision. Look at all the KNOWN possible health risks to just being Hep C positive. You might want to look into those risks, the risks associated with having Hep C, try researching "extra hepatic manifestations of Hep C" and you should find many of the diseases and disorders you are at risk for being positive for Hep C. You are at a much higher risk of developing Diabetes for one thing.
Especially since you are feeling so much fatigue I'd look into getting a biopsy because substantial liver damage can cause this type of fatigue as can being positive for this virus.

[Evannescence]

Thanks.  

Evane

[jmjm530]

Here are some of the archived posts I was referring to. Again, definitely treat if warranted, but treating solely to relieve fatigue or other symptons that may not be related to Hep C, could set you up for a very big disappointment.

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html

[Evannescence]

I'm not sure you've understood me Kali, and I'm not sure I understood you either!! Your post was a bit cryptic.  Let me explain. I have had a bx 4 years ago. The results are in one of my posts above. My doctor now wants me to have treatment without delay.  He is not ordering another biopsy though.  He says I have a normal sized spleen, and cannot feel the edge of my liver.  And YET.  I have been fatigued for 6 months or so, and I would like to feel entitled to express this fact even though treatment is happening no matter what.  I expressed on the post what my VL numbers were, without any intention to cause a stir.  Yes the numbers are low, but in mentioning the number, I seem to have upset you. It's not my fault I have a low Viral load.  I feel guilty for mentioning it now!  This could be a good thing.  I do know that they fluctuate, and dont just keep going down down down, or up up up.  What interest me now, is will they do another VL test the day before the 1st injection, so they know what the baseline is, because as you implied, it could go up by 2,000,000 in 2 weeks.

[jmjm530]

If you plan on treating, having a low viral load IS a positive predictor of SVR. Study after study has mentioned this fact. Yes, low viral load has nothing to do with liver damage at any point in time, but low viral load does give you a better chance of getting rid of the virus once you treat. Could be wrong, but I doubt very much your viral load will be over 600,000 IU/ml (which is still considered low) if you start treating on the date stated. As to getting another viral load test prior to treatment, I would think that would be up to you, although maybe your health care system limits the amount of viral load tests you're allowed. You should also plan on getting a week 4 viral load test, again if your health system allows. All the best luck with treatment.

-- Jim

[Kalio1]

Your fatigue could very easily be related to your Hep C, fatigue is the number ONE symptom patients complain of with Hep C. I'd deal with the Hep C and then if you clear the virus and still have fatigue issues you can look for another cause. The cause seems highly likely to be related to your virus. Try not to worry too much about it getting much worse on treatment, I had such debilitating fatigue before starting treatment but it did not get worse on the drugs. In fact, many issues immediately began to improve.

[Evannescence]

Thanks for your comments.  I am quite annoyed actually that my doctor just referred me to the Hep doctor without suggesting I also return to her to continue the diagnosis to fruition.   I need to go back to her and see what this is about.  I am genotype 1 was infected 24 years ago, have moderate fibrosis (bx 4 years ago), my VL was 643,000 IU/L in 2002, and is much lower now, but I do appreciate this has little impact on the extent of liver disease itself.  My bloods show the following:  Hb  13.4, platelets 151 (140- 400)  ALT 95 AST 54.  IgA 0.6 (0.7 - 4), IgG 12.2 (7 - 16) IgM 5.5 (0.4 - 2.3).  AFP 2.1 normal Albumin 43 (35-50) Free Thyroxine 14.4 (12-22) TSH 3.05 (0.27-4.2).  ANA , LKM1, PC, SMCA, all negative.  My vision is worse since the fatigue started 6 months ago.  My consultant is a professor at a leading London teaching hospital, so I have to completely trust him.  This IgM is worrying me.  Any thoughts!?

[bobbyullc]

your vl is so low it is off the charts. you need to get a biopsy to see if you have any liver damage. if not it would be strange if the fatigue is from hcv. anyway knowing what stage your liver is in is the main indicator of whether to tx or not. if it is not from hcv you want to know what it is from.

[jmjm530]

Regarding viral load testing pre-treatment -- your test is pretty recent but I see no reason not to request a viral load test the day before you take your first injection. Just make sure the test is BEFORE that injection or the results will not be usable. What genotype are you and how much liver damage? How long have you had the virus? Back to the blood tests, also ask for a week 4 viral load test using a very sensitive one like "Heptimax" from Quest Diagnostics which goes down to 5 IU/ml. BTW your very low pre-treatment viral load is a good sign and hopefully means you will clear the virus more easily.

But going back to your fatigue and dizziness again. Even if you decide to treat, maybe get a complete workup anyway in case the fatigue and dizziness are related to something serious. Any cardiac issues for example? Did they do an EKG? Check your thyroid out? Etc,

-- Jim

[jmjm530]

I don't know your background at all, but I would not assume your pre-treatment fatigue is related to having Hepatitis C. Fatigue is probably the number one complaint doctors hear in America and there are many, many reasons. The fact you have Hepatitis C and fatigue could be purely coincidental. You should not therefore expect treatment to decrease that fatigue. In fact, if you check the archives here, you'll find that many people feel MORE fatigued after treatment than before. This has to do with what the interferon does to your immune system. As to the treatment itself, most will feel more fatigued while on the treatment drugs. Not at all saying you shouldn't treat, but what I am saying is that fatigue alone is not a reason to treat. Fatigue is a reason to try and find out why you're fatigued and then do something about it. Hope this helps.

-- Jim