My viral load went up!

[susan400]

I was very disappointed to find out on my last viral load test that it had increased.  I couldn't believe it because I had dropped so low and I was sure I was going to be in remission this time. I mean after all, I'm up high doses of this stuff.  Anyhow, it's still low,but when am I ever going to be undetected??  I've been trying to fight this stupid dragon for 7 years now with short breaks when I completed one 48 week cycle, before I'd try something else.  This last viral load went from 410 to 805 copies.  I started this current round of high dose treatment over a year ago on 1/5/03.  I told my doctor that if my next PCR shows that my viral load has either gone up again, or if it does drop considerably, then that's it, I'm done.  I quit.  I've had enough.  If it's God's will for me to be healed then he'll just have to do it w/o the meds.  As most of you know I've been on the original regular dose of Intron-A and Riba.  Then, I was on Infergen high daily dose induction followed by 3 x a week.  Then, I was on maintenance dosing (my LFT's went up even on that).  Then, I was on Peg-Intron (48 weeks) + Riba.  Then, I was on Pegasys+Riba+Zadaxin.  Then, we dropped the Zadaxin.  Following that it was back to Peg-Intron + in addition to that daily high doses of regular Intron-A and Ribavirin (which I'm on right now).  With all the interferon I'm currently on, my viral load SHOULD be undetected, but it is not.

Susan400

[susan400]

My disappointment lies in the fact that I've not ever gotten an undetected status, more so than the 800 copies.  You reach a point that you get disgusted and you want to just say enough already.   Also, I have fibrosis that progressed between bio #1 to bio #2.  

Susan400

[cindee]

I too am so sorry to hear of your situation. I finished 48/48 in Nov. I am not feeling to good at this time. I am worried the dragon is not dead...I have bright red palms, clay colored stools..again..and I feel like **** most of the time. My liver doc will not do another blood test until 6 months have pasted. I just don't "feel" right...if ya know what I mean. I am still terribly tired and slept about 24 hours yesterday. I admire your constant fight. YOU will be in my prayers and pls keep us posted. I know I've questioned God many times about this disease. I continue to PRAY PRAY PRAY. I wish you the "best". You deserve the highest medal for your plight, and I pray God will speed good health for you. Much Love and Many Prayers, Cindee

[layla]

I am sorry to read your troubles here. You have so impressed me with you edurance of tx. I've thought of you at times just trying to make it through my own first time. I do hope this has helped your liver. Lets hope something comes out soon that's better than anything out there now. Take care. LL

[audreywald]

I am so sorry. This is what we are all afraid of. I will send you good thoughts.

[honey1616]

Wow...I'm sorry!!  7 years is such a long time and yes a break for you would probably do a world of good!  This is my first go round 4/48 so I don't know how I would feel if it was a constant year after year battle.  I think for my own sanity...I would have to take a break for now.  Someone had said something about something new I think about 2 years from now so hoping if there is any information, someone will post it!  My prayers are with you!!

[ellissg]

Why don't you wait for the clinical trials to be over, and the new FDA approvals would be forthcoming. If you have no liver damage, just hang in there, take Milk Thistle, don't drink alcohol, and follow the National diet suggestions. If I were you, I wouldn't treat at this time.

[Foreign girl]

I am very sorry about the test results. What level of liver damage do you have? May be it's better to wait for something different from Interferon. Have you had your biopsy done recently?

Foreign girl.

[mikesimon]

I'm so sorry about the results. I don't know what to say that would make any sense right now. The one possible upside is the good the treatment may have done your liver. I sure hope that it has. Good luck Susan. Mike

[Revenire]

I'm sorry you've had such a struggle over the years. You must of set a record for tx. I can't imagine going through that. You're strong.

Maybe all the treatments have reduced the liver damage enough to buy you some time?

You're in my prayers,

Scott

[britpeter]

I am so sorry to hear and echo Peebee's sentiments, and I am only on 6/48 of first ever course of treatment. Here's me worryin' bout getting my pre-treatment viral load and you bin goin 7 years. My problems pale into insignificance and I truly wish you all the best in your battle, whichever way you choose to go. I will try to remember you in my thoughts and from my heart, I guess that's very close to saying in my prayers tho' they are far from conventional or formally observant!!Be strong in your resolve and don't give up hope, research goes on and something else may turn up for everyone that needs it!!

[susan400]

Thanks so much everyone for all of your encouraging thoughts and prayers.  I might be getting another biopsy sometime withing the next 6 mon.  Take care.  Susan400

[Indiana]

I am sad to hear that you are having such a hard time clearing The Dragon. You sure got a tough one.
Your numbers are not enough to say that your tx is not working at all. There is "statistically" NO difference between 410 and 805 copies. None at all! The PCR load tests are NOT FDA approved. Do ya know why??....Because they just are NOT accurate. Not to the extent that we can use the "exact" numbers to say something is happening. Those load tests are only good to use as a VERY general guide to say that something is moving one way or the other.    And eveen then they would have to change a WHOLE LOT before we would say that. That change you state is just "essentially" that same. You could take a vial of the same blood....test it twice....and come up with a difference of Hundreds of thousands...or even Millions in some cases. The SAME blood!
So, in my eyes, you are holding your own and staying the same right now. Keep fighting the good fight girl! Take some more vitamins, up the Riba, change "something". You are right there. That load is SOooooo low as to be almost gone now. You are close. Get a POSITIVE attitude goin on there!! Go out and KILL something. Fry up some Road Kill and feed it to that neighbors dog that roams the neighborhood(we ALL have one of THOSE). ANYTHING to make ya feel better.
You are STILL doin OK sweetie.
CHIN UP!!!!!!!!!!!!!!!!!!!!!!!!

[tigerpants]

Oh so sorry to hear of your count going in the wrong direction. I am facing a treat/not treat choice again. I had to stop back in August 27wk/48wk  because my immune system crashed and the doctor wouldn't help. My load went from <5 to 1.4 million  90 days after I stopped the meds. I've just learned  yesterday that it is at 3.68 million now. I may try one more time..the new doc said he would do everything he can to keep me on tx, give me what ever I need for sides and see me every week if needed. Still I  am not sure I want to try again. I have no liver damage but am afraid to wait for something better..and afraid to treat again. I feel so great right now , well physically that is. Mentally the stress of dealing with the dragon again is getting very old.
I admire your strength and courage to fight for so long. I wish I could snap my fingers and make you undetecable right this very minute.

April
49  1a

[katch20]

I am sorry to hear that it hasn't worked better for you.  I admire your strength and resolve.  What did your last bx show?  Keep your chin up.  Good luck.