-Borderline -...on the NET!

http://borderline.gotdns.org/

hepdude@socal.rr.com	bdrline@socal.rr.com	patm@srar.com

I'll try and be short, consise, and to the point, without emotion, but it is still a rather lengthy story.

On 26 Jul 2002 I was diagnosed with hepatitis C over the phone, with followup blood labs already  ordered.

I went for the blood labs, and yes, it was confirmed I had hep C. I was then referred to Gastroenterology, where it was confirmed once again I had hep C, based on blood labs consisting of Liver Function Test and PCR Viral load test.

Next step was to perform a liver biopsy. Reseulting in Hepatitis C genotype 1, and stage 4 cirrhosis. The cirrhosis may have been from a dozen + years of slamming down lots of beer and wine, followed by the hepatitis C, agravating and worsening it's condition.

Where did my hep C come from? A minor surgical procedure at Holy Cross Hospital, gone very bad, putting me in nearly a 3 month coma, requiring two exploratory surgeries, 75+ pints of blood, and 1+ month dialysis – in late 1991/early 1992. All before the 1992 date when the ELISA II blood exam was put in place to detect bloods infected with hepatitis C. It was a doctor under the influence that generated this, but it is too late to do anything now (I have investigated this as well).

So, a couple months post my 2002 liver biopsy above, it was deemed I was a good candidate for the peginterferon/ribavirin combination medication program. On Feb. 7, 2004 I started this chemo therapy program. It consisted of a weekly standard dose under-skin injection of peginterferon, 180µg (micrograms), and a standard dose of ribavirin, which as I recall was 1200 mL. The meds were PegIntron/Rebetol by Schering-Plough.

From day one with this round of medications I had side effects that we're rather devastating. My peginterferon injections were done on a Friday eve, to give me a weekend to recover, @ Kaiser Permanente request.

These medications would sap my weekend, leaving me fatigued where all weekend long I barely moved from couch or bed. They also drew blood emotionally – where I was quite moody and cranky with family I love, and others.

It was also not an easy thing to maintain employment. I work a high stress, high volume, computer support technical helpline. And if you read enough about diseased liver you'll quickly find stress is not a good element for liver health when diseased.

By week 12 of this medication program, I was declared a nonresponder, but they'd let me continue for another 12 weeks. Meaning, my HCV viral load didn't drop far enough to meet the standard requirements, of:

Genotype 1: At week 12, retest for HCV RNA level. If HCV RNA is negative or has decreased by at least two log10 units (such as from 2 million IU to 20,000 IU or from 500,000 IU to 5,000 IU or less), continue therapy for a full 48 weeks, monitoring symptoms, blood counts, and ALT at 4- to 8-week intervals. If HCV RNA has not fallen by two log10 units, stop therapy. (based on: National Institute of Diabetes & Digestive & Kidney Diseases - Chronic Hepatitis C: Current Disease Management )

I had dropped from 2.9 million HCV viral load, to 55,027 by the 12 week mark, but that did not meet their requirements above.

More blood labs at week 24, and I was in the same situation, a nonresponder again, with HCV viral load only dropping to a 21,000 number – in theory, by this 24 week mark, my HCV viral load should have been undetectable.

And all the while I was impacted with side effects and reactions. Worst was probably a several day session of flu-like symptoms, though when I finally discovered I was not drinking enough water, and set out to solve this, all flu-like symptoms quickly disapeared. So since then, probably around April 2003, I drink anywhere from 1 to 1.5 gallons of water daily.

By 1 Aug. 2003 I learned I was still a nonresponder, and informed to discontinue all hepatitis C medications. I was actually very pleased, I saw an opportunity to end all medication reactions and side effects.

To some degree, I had expected the termination of this medication program, and had already been researching alternative herbal/natural remedy programs. By 1 Sept. 2003 my research and sought out advice was completed, and I had worked out a pretty good herbal/natural remedy program. Though it would not reduce HCV viral load, which continued to climb, it did promote good liver health and functions. And almost reduces my liver enzymes (ALT/AST) to normal numbers.

Unfortunately for me, As Kaiser Permanente had no alternative medication programs, I pressed research towards clinical trials. Bad move for me, but didn't seem so at the time. I found one being hosted by USC Hepatitis Research & Treatment Center, called the Roache REPEAT Trial, MV17150.

I seemed to meet USC trial requirements, and after a few special exams and labs, started this trial medication program in early 2004. Here is the group info that was applicable for me:

Group A: Will get a high dose, 360 micrograms (µg), of PEGASYS® once weekly for 12 weeks, followed by a standard dose for 60 weeks plus a standard daily dose of COPEGUS® for a total of 72 weeks. The chance of assignment to this group are 1 in 3.

Reactions and side effects started with first shot! Not sleeping well, and responding to fever with chills for 3 or 4 hours. All this was reported to USC, in fact, everything in my weblog this trial has been reported to USC (source: http://borderline.gotdns.org/trialdiary.html).

Side effects and reactions continued, and I logged all seeming pertinent to me and this trial (same source as above).

But... By 25 July, 2004, I went dramatically down hill (web log entry from that range):

25 Jul 2004 thru 6 Aug 2004 - A variety of negative issues. On the 25th of July I developed flu-like symptoms. I did what I could to nurse this in a better direction ensuring I was consuming proper amounts of water, and consuming Typenol PM or Advil, but not very successfully. By 2 Aug 2004 I reported this to USC, and reported that I had a followup visit with Kaiser Gastrointerology Dr. Lee on on 3 Aug 2004. She asked me to request a CBC-DIFF blood lab. Dr. Lee went along with this request just fine. By 1:30p or so on on 5 Aug 2004 preliminary results were in, showing an extremely high white blood count. Based on that, my consumption of Pegasys/Capogus have been suspended until further notice. Until we can root cause, and define correct measures to correct this infection causing this very high WBC... Already looking like cause is the Pegasys/Copegus, that has been suspended until further notice, as I'm starting to feel better already. But we'll still do a proper exvalution process. But if my guess is correct, I may quickly return to an herbal/natural program I had previously. I also have a call ino Kaiser's Dr. Elperin to see if he can work me in to an ASAP appt. today, as a followup measure for my extremely high WBC count. 10 Aug 2004 - I was admitted to Kaiser Permanente as inpatient of Fri. 6 Aug 2004, based on a high WBC count, that was at 32, with acceptable range of 4.0 to 11.0. Consensus: Dehydrated, Pneumonia (some), Kidney/Renal failure, Sepsis - all starting with flu-like symptoms. Corrective Measures: IV with saline solution, antibiotic combo that I don't remember name of, along with other antibiotic pills, and other combinations, a blood culture and many other CBC-DIFFs and a variety of other blood labs. I am officially off Pegasys/Copegus, at a minimum, at least long enough to let my immune system recover.

On 11 Aug 2004 I was back down to USC Hepatitis Research & Treatment Center, primarily to inform them I was removing myself from this trial study. They were quite pleasant to discuss this with, and understood and worked with my concerns quite well. A very professional and caring bunch of folks!

Then late last week, my wife received a call from my Kaiser Permanente general practicioner, saying he'd schedule an appointment to see me next week (scheduled for tomorrow, 24 Aug 2004), and claiming verbally that after large team review of my blood labs, variety of cultures, and some rather specific tests during my Kaiser Permanente stay (6 Aug, 2004 through 16 Aug 2004), the reason for my illness was the hep C meds attacking my immune system extensively, and acting as a TOXIC POISON on my body.

Fortunately for me, I had already formally quit all hep C medications, and just needed time to purge this mess from my system. On my release date of 16 Aug 2004, energy levels were pretty low still but no fever for a couple days.

At home, on temporary disability, and improving on a daily basis.

During my first full day at Kaiser, I had a comment from a doctor stating "...it was a good thing you were admitted yesterday. Had it been put off til today (7 Aug 2004) you might have not been able to even make it to the hospital."

As well, I am officially back to my herbal/natural plan, of old, though slightly modified.

A situation that annoyed me considerably when I was in Kaiser this last go-around, though with fever and not thinking clearly, I rather doubt I was expressing myself any too well... But I did try explaining to several doctors how my inflamed liver had been the cause of dark orange urine also since 25 July 2004, when my illness first began. I was actually trying for a non formal OK to bring a couple pieces of my herbal/natural products into the hospital to remedy this. Unfortunately, all I got was ignored, and the pleasure of listening to a gastroenterologist doctor totally defame anything herbal/natural. So I quickly decided just to smuggle my goodies into the hospital, and had my problem with dark orange urine corrected within half a day.

I actually did inform one of the regular Kaiser doctors I had during this experience of what I was going to do with my herbal/natural products, and that I'd kick ass if I saw my night stand getting searched for anything like this. He comments: "that's fine, I didn't hear a thing, and we aren't in the habit of searching anything. We're doctors and nurses, not LAPD." He also understood my concerns quite well.

So I'm back to my herbal/natural program, feeling well, doing well, energy seems headed back up to appropriate levels, and on my way to recovery.

Please do not let my words influence your decision of meds/no meds, but this has all been a very pertinent to me set of bad reactions to this chemo therapy type medications for my disease. Perhaps it was unique to me, though I sincerely doubt it. I am off all pharmacutical meds this disease FOREVER, unless we perhaps arrive at something with far better results, and with zero side effects!

And then there is the other issue of pharmacutical manufacturer's claimed of a 53% and 56% success rate with these hep C meds (both Hoffmann-LaRoche and Schering-Plough), that in actuality more like a ~20% success rate when you look at SVR (Sustained Virological Response!  Done 6 months post medication treatment).

As well, I have verbally notified USC Hepatitis Research & Treatment Center of this latest TOXIC POISONING statement from Kaiser Permanente medical professionals concerning the Pegasys/Copegus routine I was taking - I will also do my best to see this information gets back to the Hoffmann-LaRoche trial entity (I believe this is information they need to be aware of!).  Unfortunately, "gut feel" tells me all involved in pharmacutical trials  of this nature can be very sensitive/resistant to information/claims of this nature!  I as well am very aware USC Hepatitis Research & Treatment Center has requested all my records from Kaiser Permanente for this almost deadly duration of 6 Aug 2004 through 16 Aug 2004 - as I was unable to obtain a copy at discharge time.


-Pat