not clear at week 24 and erroneous half dose of interferon prescribed

[2ndtry]

i am at my second go around with pegasys 180mg injection and ribavirin 1000mg tx - started at 75,000,000, 10,600 at 12 wk and 4,700 at 24 wk.  using a doc at John's Hopkins and like him a lot.  have appt in the morning but got count from NP in email today.  i should be zero - period.  correct?

my first try i had a doc prescribe pegasys then use another brand's package insert to guage my platelet count.  pegasys allowed a drop to 50 and the other brand only 80 - so the doc put me on half doses of interferon for 12 weeks out of the 24 (my platelet count never went below 70) and vl made an upward turn at week 24.  he also did not tell me about the depression side effect and the first 10 weeks without "daddy's little helper" fully working were pure hell!  does anyone know a good attorney in VA that realizes what it means to have 29 weeks of tx (the doc took awhile to get me my results and make a decision too) and another  6 months of being an emotional and physical wreck taken from you because a doctor did not know what the HECK he was doing... i am 1a and know that i only had a 50% chance going into it but the 12 half doses for no reason took away any chance that i had - could a failed first attempt be having an effect on the second tx???

2ndtry

[2ndtry]

Thanks for sharing your knowledge and experiences - I do have a Doctor and NP (and their associates) at John's Hopkins Medical Institute in Baltimore, MD.  My Doctor is an older guy, with great credentials, and very in tune with what the patient is going through.  He has seen hundreds of Hep C cases and I feel confident that he is giving me good solid advice - I still look up everything on the Web though - and now I've started using this Forum.  Since my initial VL was so high, 75 million, he wants to give it a little more time to clear, I have a 3+ log drop at present - we retest/evaluate in 8 weeks...

about an attorney - I've spoken to lawyers that think I have a malpractice case but not enough in damages - that is why I would like to find someone who understands the emotioal and physical he double L that we go through when fighting the dragon.  They don't get it when I tell them how sick I was and how not being put on an anti-depressant before starting treatment (thanks to the first doctors inadequate care) almost put me in a mental unit and I was no fun to be around - of course being male and keeping it bottled until it amost exploded didn't help ;-)

thanks all

[sfbaygirl]

You were aware you were taking 1/2 doses. With full doses the 2nd time around the chances aren't as good.  My platelets were low and still are. If I were to re treat, I would double dose as long as I could at first. I would not go along with this first doc and get a 2nd opinion. Most studies show that if you clear at week 24, you would still need to go 72 weeks.  I would get a knew game plan and a cutting edge doc to at least give you another opinion. If it were me, I wouldn't continue if I hadn't cleared by week 24.  I didn't clear at week 12, planned on going longer than the 48,  but had problems and had to stop at week 47.  I relapsed.  I would get my strength back and try again, with a cutting edge hepatologist.

Good luck and sorry to hear of your plight.
Linda

[orphanedhawk]

This is so frustrating. I'm lucky to have a great heptologist. One thing that makes me like him is how willing he is to simply say,” we don't know," in answer to my barrage of questions.

  My first doc wanted me to stop tx because of low platelets. He was following the protocol recommended by the pharmaceutical company. Instead, I changed docs.

Treatment is a gamble. People  have difficulties because doctors are ill informed about HCV or too egotistical  to admit they could ever be mistaken. Unfortunately, as brain fogged and sick as we may be, we are ultimately responsible for our health. Educate yourself and be stubborn. If something feels wrong to you, it probably is.      

BTW: There is a woman here who didn't clear until week 33. She is double dosing pegasys. I think there is a report somewhere about this tx.          Good luck.

[zazza]

You might want to read this recent thread, which covered the question whether or not to stop at week 24 if still detectable.

http://www.medhelp.org/posts/show/302609

[2ndtry]

but how can using a package insert (that gives vital information on the care of the patient using lab results) from a completely different product from what HE prescribed not be negligent, especially when I was questioning his orders to lower the Interferon dose and could not find any clinical data to support it at the Roche site - he prescribed Roche and used Schering Plough's package insert...  I think his SOC was wrong!

BTW - I saw my current doctor yesterday and he wants me to continue my tx eventhough I was not clear at week 24 - he said that I've had a more than two log drop, 75,000,000 to 4,700, and that is a good response.  I may need to go longer than the 48 weeks but I started with a very high VL - luckily I still have a healthy liver and am under 50 (barely...)

thanks for the help!

[jmjm530]

I'm not a doctor or a lawyer, but I doubt if you have any sort of case. You need to prove negligence and all your doc was doing was making judgment calls. While arguably you did not receive the most cutting edge treatment, very few here do. Remember, SOC stands for "standard of care", not the best standard of care.

-- Jim

[2ndtry]

Thanks for the advice and I am going on with my life - I just don't want these bozos to hurt anyone else - they admit nothing wrong!  

I have a complete copy of my file from his office - a copy of the prescription for Roche Pagasys, lab reports showing platelet counts (never below 70 and as high as 120+) and VL, doctors notes documenting each time he told me to take a half dose and a copy of the package insert he used to guage my platelet count (from Schering Plough PEGINTRON™ REDIPEN®)

[CockSparrow]

2ndtry - "could a failed first attempt be having an effect on the second tx"
---------------------------------------------------------------------------------------------
My guess is no. Your response this time would appear to have more to do with your viral load.
There have been studies retreating patients who had previous suboptimal Tx with results close to the Tx naive SVR rates.

CS

[sfbaygirl]

It is really hard to sue a dr without proof that he did something wrong. From what you say it doesn't seem like you have a prima faca case.  Unless you have absolute proof you won't find and attny to take this case.

[Terrylee8]

The doctors will all circle the wagons and they cover each other, I would let it go and get on with my life.