2 years after unsuccessful treatment my VL is lower

[sanpena710]

Got my results back today. Just a quick refresher on my story. I was diagnosed in 2005 with a VL of 929100 IU/mL. Had treatment for 6 months had to quick due to side effects . Before I quit tho my VL was <50 ( 3/06/06 ) and I ended treatment in June 2006. I went back and re-tested and my VL was back up to 769000. I went for a VL "update" last Wednesday and got my results back today.. 2 years after treatment and taking nothing and my VL is 489600. Anyone else out there have any similiar results? Is this a good sign or do these numbers go up and down all the time. I asked my "insensitive" doc " this is a good sign right?" and he just replied .. " ITS STILL THERE" in a very dry monotone voice. ( gotta change docs)  I KNEW it was still there !!! GEEZE.. not one bit of emotion from him. ANYWHO.. anyone got any comments on this ... greatly appreciate any words of wisdom.

[sanpena710]

that is exactly what happened. Even  the Doc was shocked when he finally seen my rash. I guess he thought I was exaggerating or something. I was over my entire body including my scalp. I wish I could have gone through the tx but I now if I do it again I will start the ant- itch meds right away. It's a shame. I thought I would have scars..it was that bad.. But they are all gone now.. but ITS back. :(   Wish you luck Jerry. I think my rash was a rarity.. plus my skin is very easily irrated by bug bites too so maybe it's my skin that is extra sentitive .. I've not heard of anyone quiting cuz of the rash, other than me. Had one liver biopsy already.. it was good. stage one of something and 0 on the other one..can't remember at the moment the words the doc used. One was fibrosis or something like that.

[orleans]

Hey, What you need is a liver biopsy to find out what shape your liver is in. I just started tx a couple of weeks ago and am having problems with the dreaded rash. Your DR is wrong about it not working. You were likely UND when you had to stop which means it WAS working. Did the rash just become unbearable? That is my nightmare scenario, to have tx be working but have to stop over a rash or something. jerry

[sanpena710]

Thank you Trinity..I know what you mean about your hair. I did wonders with the barrettes tho..  clipped it up with cute little pins. plus it was hot out so that looked okay. I guess I"ll have to get another test then, right ? To find out my liver status .. if it's inflamed or not? Do you know what test that is. I did the VL one but will that have those results on there as well? I did the pegulated interferon with the ribaviran ..is that what you're doing? how far are you in your treatment? You're a sweetheart , I can tell by your words.

[Trinity4]

I wish you the best and for your doctor say "for what, it didn't work" does not mean you won't have success if you decide to treat again.  That statement alone would send me flying to another doctor.  You seem to have had a pretty tough time with the rash and only you know if you could tolerate that again.  Some people just have a terrible time with rashes and itching and others aren't bothered.  So strange, and I guess I've been lucky because only moderate itching with me.  My hair is falling out by the handfuls but no big deal, I wasn't that good looking to begin with!  There are better drugs coming out in the next few years and if I don't beat this thing I'll wait for those drugs. Current SOC doesn't have high enough odds of clearing for me to try again but I will with the newer drugs if I have to. Hope is not being silly, it's the only thing we have to cling to.  Unfortunately, our hopes can be dashed by those in the medical field who lack caring and compassion and say ignorant things like your doctor said who obviously is not educated enough in the treatment of hepc to know what he talking about.  Keep hoping, keep pushing, don't close the book on your options and all this suffering could be nothing more than a bad memory someday because you will have beat this and your life will be your own again.
Trinity  

[sanpena710]

Thanks for the reply. My side effects were itching!! And it was tremendous!! I couldn't sleep. I tired everything.. oatmeal soap to meds from the dermitologist. Pills, cream .. you name it.. nothing worked for me. Plus it was the summer months and the heat really aggravated it. I will definately change Doc's .. I asked him if I should try it again and he said " for what.. I didn't work" He could be right.. oh well. I am still gonna change. I actually had a different Doc but he moved to a different hospital. I am gonna switch over to him again.. thanks again for replying. I was hoping my body was fighting it on it's own. I know that it wont go away without the meds.. I was just being silly and hopeful ..

[Trinity4]

Viral load goes up and down.  There are scientific reasons but I don't know exactly what that is.  One member I recall recently posted they started out with a vl of 500,000 and 3 maybe 6 months later it was 2,000,000.  Don't be alarmed by that, your lower number just means the virus isn't replicating as fast right now.  2 months down the road it may be higher or even lower.  I would be more concerned with ALT and AST.  That indicates the degree of inflammation in the liver and higher numbers mean more inflammaton which can cause scarring and fibrosis.  Your doctor is right -  the virus is still there.  It sounds like he lacks compassion which is not uncommon with doctors.  If you feel more comfortable finding another doctor, by all means do so.  The only way to eradicate the virus is with the drugs you have been on previously.  You stated you had to discontinue because of sx.  If you chose to treat again, and one of the sx was depression, you can start a regiment of antidepressants prior to treating which will help greatly.  If you had problems with anemia or low white count, there are rescue drugs to help stabilze as well.  You may want to rethink your approach to tx if you are ever consider it again, and work proactively to offset the adverse effects.  Good luck.
Trinity