ONE MONTH TO GO

[emop]

Hep C B1,liver biopsy-good, 50 yr old female - I'm on week 44/48 of Pegasys and Copegus.  Last week my Dr. lowered my dose again due to low wbc/platelets. I'm now taking 3 instead of 6 pills daily and half the dose of interferon once a week.  My WBC has been between 1.3 & 1.5 for the last several months, my platelets are 72 and my last viral count shows it coming down (82,000) but my Dr. said it should be showing "undetected".  So I'm in the 40% bracket that this tx doesn't work for. Anyway I wanted to know if anyone out there has stayed on the treatment longer than 48, my Dr. refuses to let me stay on it, says it's too toxic and is doing more damage the good. The tx IS obviously working because my viral count has come down, but just not quick enough, so I wanted to see about staying on the tx longer - has anyone done this before. Thanks!

[cuteus]

I did not clear at wk 12, but did show negative at wk 26, in spite of a low viral load. My hepatologist did not want to extend beyond 48, but finally gave in the last month of tx. I am now on 57, and scott is 84 or so. others are also beyond the 48 mark or were. The lowering of the dose is not the best protocol to achieve svr, drs should intervene with blood boosters before resorting to reducing meds. If they do reduce them, and it interferes with svr, they should consider tx extension. I was already searching for my 4th GI in my quest for svr.TG I did not have to change. I am on procrit to help with the completion of tx. The meds ARE toxic, but I told him I would sign a damn waiver if needed be. I guess they documented I knew the risks and that  there were no guarantees...
you might need to search for a more receptive dr. and more aggressive one.
GL

[Fubarcat]

I've been on Procrit for 6 weeks.  I've got 17 more shots to go to my 48.  How long have you been on Procrit?  I just find that injection so painful that I'd like to go off.  My theory (which, of course, I'll discuss w/Doc when I see him) is that it took 6 months before my RBCs got low enough to go on Procrit.  So, I've been on it for 6 weeks now and my RBCs are pretty close to normal again.  So, can I go off of it and hope that it takes another 6 months before it drops too low in which case I'll be done with my 48 weeks by then anyway.  I just HATE taking that Procrit shot and have gotten to the point now where I stretch it out to every 10 days rather than once every week.  Of course, Doc doesn't know that and I'm sure he'd have a hissy fit if he knew it.

[cuteus]

LOLOL, boy do I know how you feel! I started at the end of Sept about 3 months into tx. I did take it weekly until the sting got to me, and on my own, I spaced it to every 10 days or so, sometimes two weeks, but the count drops too low so I should stick to 10 days. You could ask your dr about your theory, but the Riba is destroying red cells faster than the marrow can produce it and it might not work in the manner you are hoping...ask your doc if every two wks would be ok. I told mine I spaced it on my own, he gently scolded me, but at least I found out what is best for me. Some here are on this med and their rbc is still dropping! So we have to be careful. If your bloodwork is monthly, like mine, you could time it to spaced it longer and see the outcome in the next test. Check with the dr., I can't suggest you experiment with your health the way I did. Last time it did not sting as bad. I left the vial out for about a 1/2 hr until room temp and found a very fatty spot.
GL

[jonihs]

I agree w/ everything said already, but wanted to add that some Dr.s are prescribing Vioxx for low platelets. I took it and while my platelets did not come up, they did not go down any further and the added advantage is, vioxx is an anyi-inflamatory and help w/ bone and joint pain. Get a new doc and do this tx. right. Make sure new doc is willing to:
1. Extend tx. time if you can tolerate
2. Use procrit, nuepogen, and viopxx aggresively
3. Not lower dosage unless everything else has been tried unsucessfuly.
4. Listen to you and realize that it is you dealing w/ this virus and you ought to be able to have alot of say so in treating it.
                        Best of luck to you, Joni

[emop]

I actually have 2 appts. to see two different Dr's next week, to get there opinions and I will keep in mind what you have told me.

After about 3 months on tx my wbc dropped (to 1.3) and my Dr. lowered my interferon injection to half 1.35, and then last week they called and said I was dangerously low and lowered my Copegus pills to half too.  I saw him yesterday and he is sending me to a hemotologist to get a shot of neupogen, I'm affraid it's too late.  As you said, being on half is probably why the viral count is not dropping qucik enough and I questioned him several times about it, he's response was some mumbo-jumbo that it works the same.

THANKS!
emop

[layla]

I  think part of the issue for you is when exactly did your dose get lowered originally?
If you were on full dose for over 24 weeks and did not clear your chances then are less than 3% for clearing and most docs stop tx then or insurance companies do. Some docs try other approaches like doubledose who's post you can see here. On second round of tx the doc gave doubledose and gave exteended tx to 72 weeks. Allot? Yes, but it's worked. You can search back post on this. Sorry to hear your having troubles. LL

[emop]

My original dose of interferon started 180 mcg/ml, then he cut in half to 135 mcg around the third or forth month of tx. Then last week he cut the Copegus in half from 6 pills a day to 3.

[mythoughts]

I've heard several people in this post talk about different meds for blood help. One said that the shot hurt too much & the other said that they were being sentto another doctor for a shot. Can you do these shots at home? Are they just in the shoulder or what?

[mythoughts]

Do these blood helper shots go into the shoulder? Can they be done at home?

[mythoughts]

Do these blood helper shots go into the shoulder? Can they be done at home?

[mythoughts]

I used to muscle or skin pop heroin in my butt cheeks. Maybe you should try there, as it hurts alot less & there is a decet amount of fat tissue.