need help but feel guilty about my low numbers

[portann]

Hi and thanks to the many generous people in this forum who share their knowledge, experience and wisdom - it would have been so hard and lonely without this site. You probably saved my marriage by openly discussing 'riba rage'!

I am almost sixty and opted for tx before I'm too old to tough it out. (My doctor doesn't like to treat people over sixty.)  

I'm a 1A, diagnosed ten years ago and didn't clear at week four.

I am re-thinking my decision and need your advice before I see the nurse this Monday.

I had a biopsy seven years ago which showed zero grade for everything, except lobular activity at zero to one grade.  My viral load as measured once, also seven years ago, was 1.96 E+5 IU/ml by P.C.R testing (600), which seems low when compared to numbers I read about in the HCV forum.

If this is 196, 000 IU/ml, should I have left well enough alone? Would you have even considered treatment with these numbers?

I didn't see the doctor again until April 2008. My AST's and ALT's hadn't changed much over the seven years and I didn't have a new biopsy but somehow fast-tracked right into treatment (gasp!) a month later. It all happened so fast.

I am approaching my twelfth week of tx on Peg/Rib (180/1000).

I found out today the doctor didn't even do a baseline viral load test before starting tx, so I only have one quantitative assay test from seven years ago.

My twelve week assay this Monday will be quantitative only if the qualitative one doesn't first show clearance.  

My AST did drop from 53 before treatment to 27 this week and my ALT from 52 to 32 but shouldn't they be below 20, twelve weeks after treatment?

I'm very ambivalent about Monday's bloodwork - half of me wants to clear and the other half doesn't, just so I can quit tx and climb the stairs again. My HGB is not even that bad, between 10 and 11 but I feel like a ghost, a shadow, a dead man. I can't think.

I should add my doctor is the only HCV specialist in town with a caseload of five thousand, works tirelessly but inevitably cuts corners.

Thank you for so much. I can't help feeling guilty about my low numbers.

[GrandmaBRZ]

I am 68 and started tx 7/07 and am going full 72 weeks so will be done around 11/08. My first time.  I was diagnosed year 2000 and blew off idea of tx.  Wish now I started earlier however, I am grateful that I am now in tx.  My side affects, especially the riba-rage,  have gotten far less severe as time has marched on.

As enigma states, Definitely DEMAND Procrit.  I was exhausted until I got on the Procrit, about 6 months ago and now I have levelled out and don't need it at this point, although that can change. And Yes, as she says, think UND!!!! Always,  Best of luck and wishes to you.  Jennifer

[Xenigma]

Wait for your 12 weeks results (you are going for your 12 week not 13 week right?)
and also see what your hgb is.  Procrit will help you feel so much better if your hgb is very low.  It's your decision, but I would wait for your 12 week vl to come in.  You may be UND which would be wonderful!!  It'll give you insentive to continue.  I wasn't UND at week 4 but I was at week 12.  (I didn't get tested in between to see when I actually cleared)

""I am approaching my twelfth week of tx on Peg/Rib (180/1000).""

You said you are approaching your 12th week which means you wouldn't get your 12 week bloodwork (viral load)  until a day or two before your 13th week/13th shot.
(Don't add in another week due to that missed shot)

""I found out today the doctor didn't even do a baseline viral load test before starting tx, so I only have one quantitative assay test from seven years ago.""

They like to see at least a  2 log drop at week 12.  If you haven't tested your vl in 7 years how is the doc really going to know far down the vl went if you are not UND?  This is a question to ask the doc, yes he is busy but you are paying him when you go there and you should be seeing him for you lab results and any questions you have.

Think positive, think UND!!!
(and DEMAND some Procrit so you will feel better)
enigma

[links1999]

viral load does not determine damage, scarring can occur with a low viral load just the same as with a high viral load. low vl will give you a much better chance of treatment working.

[nygirl7]

Just because you were not clear at week 4 doesn't mean any dire consequences are on the way.  Believe me, I did not clear until between 12 and 24 (I did extend to 72) but I am SVR today, two years later.

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My HGB is not even that bad, between 10 and 11 but I feel like a ghost, a shadow, a dead man. I can't think.
---------
Unfortunately this is a common problem. However you can approach your doctor and ask him to start you on a regimen of Procrit - that will help raise your hgb enough so that you aren't suffering from the anemia.  That seems to be your only big problem right now.  Then, if you aren't experiencing any very difficult side effects and it appears you do want to do this before any severe liver damage is done I say go for it!  You do have time and options available however if your current doctor feels treatment for over 60 makes it too tough you might just want to wait - see if you clear by the appropriate time and then kill this off once and for all.

As always, its a very personal decision. This disease probably will not kill you - it's a very slowly progressing thing. Personally i just wanted it out of me and would have treated regardless (although I was stage 3 upon discovery).  '

Good luck - I hope that you make the right decision for YOU!

[proud48]

Best of luck to you. I was 58 when I started treatment and it was hard. I praise your choice for treatment. Hang in there since you have started. You were very brave to make the decision. You will find tremendous support here so stay in touch with this forum.
Blessings,
proud48  

[Marc1955]

I can relate to your reservations. Although my situation was somewhat more serious, yet still far from dire, I definitely had second thoughts once I started the treatment and discovered how difficult the side effects were. I remember hoping I'd be taken off the treatment at various points early on.

I'd say that regardless of whether it was the right call to start the treatment, now that you're in it, if you are responding I would definitely continue. You never know what the future holds and it is a blessing to be rid of the virus entirely.

And for what it's worth, for many people the side effects get milder as the treatment goes on. I simply could not have handled a prolonged period of my side effects at their worst, but fortunately things have gotten much more manageable.

Good luck!