reduce peg

A thought occurred to me (rare these days) that I should try todecrese to 1/2 the peg while maintaining the riba and alinia at their current levels.  When I predosed with alinia/riba, my hemoglobin  trended downwards --though not severely-- and the alinia had no adverse effects except some nausea.  

On the other hand, the viral load dropped steadily, as did the AST, ALT, GGT  .  All in all, I was feeling much better than I had for a while.  Coincidence? perhaps, but it appears to me that Iam "allergic to the dose of interferon and it my be making my condition worse.  The quality of life definitely *****!

when Pegasys entered the show (stage right, I think) and she brought me severe erosive lichen planis, painful and burning lesions on most of my body,and constant headaches.  And if that is not enough,  my WBC and platelets are now described as "ALERT."   and I am up tonight with a horrible burning sensation and a swollen ankles, hands and belly (first time for what looks like ascites.)  Am I truly going ovr the edge decompensating - wise?  I will be seeing the hepatologist on Monday and see what he thinks.

Anyway, it is obvious to me that I could not do 48-72 weeks of this nightmare and live to tell about it.  However, I do have some meds left over, and was thinking of lowering the peg to 1/2--and adjust accordingly as I see the resuts/effects.  I'll do weekly blood work, with PCR and hope for the best.  If I can get this plan approved by my hepatologist,  perhaps I'll be able to ward off the TP before a study with non interferon regimen will be available.

Thanks for listening to my ramble.  I hope that it makes some sort of sense

[HectorSF]

Sorry to hear about your continuing problems with treatment. Here are a few point you may want to keep in mind about the treatment.

"Reducing the total cumulative dose of peginterferon received during the first 20 weeks of treatment from full dose (≥98%) to ≤60% reduces week 20 virologic response from 35% to 12% and SVR from 17% to 5%". -   Mitchell L. Shiffman
With decompensated cirrhosis the chances of SVR are even less then 5%. And you risk the meds, peginterferon and ribavirin, causing further damaging your liver and possibly causing liver failure.Remember the more damaged your liver is the harder it is for the liver to handle these very potent meds.

Peginterferon it the drug that reduces the viral load. Ribavirin prevents the viral load from coming back once you are undetectable. Yes it can reduce your quality of life because it is putting your immune system in overdrive to kill the HCV virus. It is similar to when you have the flu and your system fights it with the body's natural interferon. That is why you feel the flu like systems when taking peginterferon.

I hope the treatment has not caused your liver to decompensate. See what the hepatologist says. It is very easy to diagnose ascites can be disnosed by the presence of shifting dullness or bulging flanks.. A ultrasound scan can confirm the diagnoses. Also the degree of edema is easy to spot. If you push down on the area the skin that is bloated the skin won't come back to the normal shape, the skin will remain down for a few seconds or longer. This is called "pitting". Edema is usually located on the lower part of the body from the thighs on down to feet. Because gravity pulls the fluid downward.

Best of luck when you see your doc.
Let us know what he says and what your future plan is.

Best-
Hectorsf

[Diane12855]

I am glad you were able to get in with the hematologist so soon. The sx you describe sound totally miserable.

I'm just wondering if you shouldn't taper the dose until you see the better results instead of cutting it in half right off the bat. Maybe try 3/4 of the dose first, etc.

Hang in there!
Diane

[Bali05]

Obviously only your Dr. can assess your state of health and involved risks with tx.
if at all possible I would  try to become UND before any dose reductions
looks like UND<43 around week8/9 and UND<2 week12.

[willing]

wow - sounds like you're in heavy waters - sorry the going is so rough. It's good you're seeing the hepa Monday - you two need to talk. The two looming icebergs seem to be the platelets and possible decompensation. You might ping cando - his platelets and anc got pretty darned low. The wbcs should respond to neup but reducing the ifn is likely the only alternative for the platelets

The goal here is to come out of it in one piece. Though your prospects at this point look good even without the PI continuing at full dose may not be a real option. Since at least tela approval by early summer looks likely the next goal would seem to be to preserve the investment in viral suppression by the time you take those 1st tela pills. Scaling back to ifn half dose while keeping the alinia and rbv seems a good compromise. However at that point doing at least 24w after 1st tela seems much more important.

Re comments in earlier thread, it's a particular frequency of UV light that is most effective. However my derma mentioned that even a standard tanning salon light would have some benefit if getting to the clinical one is too involved. Also, not sure I agree with desrt about the IL28B - what's the point? Regardless of how ifn responsive you are, at this point it's the only game in town.

And thanks for the good wishes. I'm doing OK but already miss my red blood cells. We used to do everything together and had grown very close...

[willing]

wanted to add a bit of totally unsubstantiated hearsay. A European hepa mentioned the other evening that at a recent conference a Merck exec had assured him boce would be available in the US in the first 6 months of '11 and in Europe by '12. Not sure I believe any of it, given that as far as I know Merck  has yet to file anything with  the FDA, but it makes for a nice fantasy. All the more so if you're dreading the prospect of adding the tela rash to other skin aggravation.

[viaduk]

I took the shot on Friday, after getting blood drawn -- and sneaking in a week 5 PCR-- so I'm in for at least another week.

Hector:  That is very discouraging! I wonder what the odds are when reducing after reaching UND.

Diane:  That is a good idea! The decision may be moot if my bloodwork comes back with lower platelets.

Bali: Thanks.  I am trying to get there.

[viaduk]

You must be a mind reader.  I hope that the rumor is true, cause if anyone is going to  get that dreaded tela rash, it'd be me.  I would gladly give up some more RBC for the opportunity to avoid that lovely sx.

I think that I will take desrt's suggestion and ask for the IL test if it's covered by insurance. I missed his/her post, but see that I commented on the referenced thread and noted that I would ask for it if reaching a crossroad in tx.  It may be a moot point, but then again...

[eureka254]

Just wanted to say I hope you're feeling more comfortable today, and I'm glad you're seeing your hep doc tomorrow.  Any chance he might prescribe something to alleviate your skin discomfort?  I don't know if it would work for you, but my husband's doc prescribed him atarax (50mg x 2) a couple of weeks into treatment to help with the skin boils and itching.  My hope is that you're already at undetected -- that way if dose reduction becomes necessary it won't be so risky.  Keeping fingers and toes crossed for you. ~eureka