Sunday, February 15, 2015

Changes 2015 - Harvoni?

Hi all, sorry for not updating in so long!  As mentioned previously,  my great Integrative doctor who ran all of those comprehensive lab tests ( including the many HCV viral load tests) quit taking Medicare in 2013. So I could not find the cash to go back to her.

And I lost two of my long time companions recently; 13 year old Rosemary left me right before Thanksgiving. ..the vet found a tumor in her bladder..I had to let her go soon afterwards. And my 17 year old heart, Cayenne passed over on January 16, the day after my 62nd birthday. I miss them so.

Now, moving forward, I recently saw a new Gastrointestinal do over at LSU. He was very excited about Harvoni and pretty determined to get as many of his clients on it as possible. So I had a lot of blood drawn and many, many tests done, including a Fibrosure test.

Now I had not had any new labs done since about a year ago and those were pretty good. Liver panel ok (tho ALT/AST slightly elevated due to a Project Runway girl's night party the night before where wine was served) Viral load was @35,000 and all other regular stuff was fine.  Basically the same results as I've had since early 2009 when I started using 3 mg.  LDN (Low Dose Naltrexone)   My 2003 liver biopsy had shown "minimal inflammation. )

But despite knowing I have had HCV since 2002 (and probably been infected since the early 1970's) I was nervous.  Having a low viral load and pretty much normal liver function tests was good, but having another liver biopsy or a Fibrosure test would reveal the true shape that my liver was in.

Also, as I was unable to get a prescription for the compounded LDN that I had been using for most of the last 5-6 years (from Skips Pharmacy) I switched to the 50 mg Naltrexone tablets (from India) and began mixing my own LDN.  I also switched from taking it at night and started taking it in the morning. I have had terrible sleep issues these last couple of years due to the seemingly unending financial stress.

At any rate , the partial labs that were mailed to me (part of Fibrosure equation)

HCV RNA: 37,934
ALT: 35 (0-40)
Bilirubin Total: 0.4. (0.0-1.2)
GGT: 26. (0-60)
Haptoglobin:  64 (34-200)
Apolipoprotein A 1:  187 (110-205)
Alpha 2 Macroglobulins QN: 299 (110-276) H

Fibrosis Score: 0.32  (0.00-0.21) H
Fibrosis Stage: F1-F2  (0.00-0.31)

Necroinflammat ACT. Score: 0.19 (0.00-0.17) H
Necroinflammat ACT. Grade: A0-A1

So really not bad. Note that my fibrosis stage is only one point over F1.

But in the Harvoni scheme of things, these results will disqualify me from initially being approved to get it. My doctor told me about appealing and all this other stuff. My next appointment with him is in a couple of weeks and I will find out more. Along with getting the rest of my test results. ..CBC, LFT's, etc.

I did get the iron/ferritin tests back. All in range with Ferritin at 73, which is cool. (20-288)

My doc is at LSU Health and he is an Attending there so he's pretty familiar with the red tape involved. But it's like pulling teeth to get your labs from them. The nurse did call the other day to tell me that the doc wanted me to retake the HCV RNA test. I guess despite me telling him that it had been low since starting LDN back in February 2009 (Valentines Day) he wasn't really listening. Maybe he will at the next visit. I would also imagine that the low VL might raise some eyebrows among others along the way.

Overall,  I'm pretty pleased.  The stress of being in constant poverty, the illnesses of my companion cats, being out of many supplements,  not eating as well as I should (except for gluten free!) and probably indulging in a bit too much Chardonnay,  has not been very conducive for overall health.  But having the Low Dose Naltrexone on board, whether compounded or mixed from 50 mg Naltrexone tablets,  has been a blessing for me. And one that I plan on using for the rest of my life, virus or no virus!

At this point, I still am not in that big of a rush to treat. There are even more HCV drugs in the pipeline with even more promise. ..shorter treatments and supposedly 100% cure rate.  Hopefully in the next few years there will be 100% cure rates for all genotypes. ..and that Hepatitis C will be eradicated!

1 comment:

Gaius Gracchus said...

Good news with the results... we are researching LDN for ourselves and found your post here.