Tuesday, October 10, 2017

2 Years Post Hepatitis C Treatment - LDN/Harvoni

I started this post last year after my one year post-Harvoni lab reports - which by the way, were very good! My labs were really outstanding - Viral load still Undetectable -  My ALT was 16 - that has never been that low since forever.  The LDN helped keep all of my liver enzymes in the normal range pre-harvoni but 24 was the lowest that ALT got with LDN.  CBC, etc. all normal range!  Ultrasound was pretty much the same pre-treatment.  But I never got around to posting it - anyway, 2 years later!

I really haven't had any bad type sides in some time - however, I did seem to be in a state of inertia - just didn't feel like doing too much.  Like updating this blog!   This was attempt #26 at actually publishing something.


2017 POST HARVONI RESULTS:


HCV RNA - NOT DETECTED

CMP - All in range - ALT 14 (6-29) AST 19 (10-35)  ALBUMIN 4.9 (3.6-5.1) ALK PHOS 61 (33-130)

CBC - All in range - RED BLOOD CELL - 4.12 (3.80-5.10)  PLATELET - 228 (140-400)


The only kind of troubling result was the Abdominal Ultrasound - this time with Elastography included.   Mild hepatomegaly (liver enlargement - actually same as last U/S)  All other visible organs, ducts, etc. all normal.  However...

IMPRESSION

 " Liver demonstrates coarse heterogeneous texture consistent with diffuse hepatocellular disease."

Elastography metrics suggest liver fibro staging/Metavir score of (F2-F3);[ Mild-Moderate]


Geez, why didn't they just say consistent with chronic liver disease? This makes it sound that I am well on my way to HCC!       I hate U/S's - this was my 12th one since 2003 and there is always something in them that is disconcerting.    And this result was disappointing as I had expected that my liver would have improved with the elimination of the HCV.  (As other folks claim have happened or hope to have happened)   A friend of mine with cirrhosis just completed a successful treatment with Epclusa (with Riba)    He insisted that he have a Fibrosure test done soon after - despite his doctor (and me) telling me that taking the test would not be helpful.  And it wasn't of course.  But my friend is an example of some folk's expectation of what these DAA's can do.  That the elimination of the HCV will immediately reverse any damage done to the liver!

My gastro seemed to think that my results were similar to those of 2 years ago (pre-harvoni) on the Fibrosure test.    He wasn't concerned as my liver function tests were perfect.   He said that I am no where near cirrhosis and that I had "plenty of liver left!)

I must admit that I did not take any ALA (alpha-lipoic-acid) and greatly reduced my milk thistle over the last year or so. Guess I was another one who thought that maybe I didn't need to take liver supplements anymore as I no longer had a measurable viral load?     I also indulged a bit more with wine and gluten free beer than I had in a very long time.    So with that info, my U/S was really not that bad.    I immediately began the ALA and upped the milk thistle dosage back to where it had been.

As far as drinking - this seems to be a touchy subject -  Seems to me that most folks just want to go back to the life that they had prior to being diagnosed with HCV.  And if that included wine with dinner or a few beers, then so be it.   Others consider it the height of foolishness to drink at all.  Comes down to common sense to me - if you are near a transplant or have had one, then don't drink.  If not, then do what you want - but again, I live in New Orleans.


Been feeling pretty good -  but still struggling with poverty and 5 cats.  I am still reeling over the deaths of Smoke and Velvet this year - my 11 year old siblings that were rescued in 2006 post-Katrina New Orleans.   The original Katrina Survivor cats still with me are down to three:  16 year old Tortie Miss and Woody Woodlawn.  Sky is 13.   Voodoo, the City Park rescue cat from 2012 is probably around 7 or so - he is FIV positive.   And even though I swore I would never get another cat, Matilda found me over a year ago underneath my car in a Goodwill Parking lot.  She initially tested FLV positive as a kitten but was clear on the follow up tests.    All of the cats get LDN 2-3 times a week.

I have lost a bit of weight since the HARVONI 2 summers ago.  Currently around 100 lbs or so - my weight fluctuates so much -  will be 100 one day and 104 the next.   My teeth are probably part of the reason that I cannot keep weight on.    Back in 2007 or so, (back when I had $$$ to spend on all of this health stuff!)  I had all of my mercury amalgams removed.  Temporary crowns were placed in that have now, of course, all fallen out.  I ran out of money to fix them.  So it's very hard to chew and properly digest what food I do eat.  Also, I have heard that Harvoni (and other DAAs) can be very hard on one's teeth.   Thankfully, I just was able to get a Medicare supplement that includes some dental care - so we shall see.

The other reason for my weight problem is that I usually have no appetite at all.  Marijuana (medical or dirt) helps immensely with my food intake!  The good (expensive stuff) helps with all of the above - appetite, pain, energy levels, etc.     The Fibromyalgia still flares at times - I can feel really stiff, achy and glued to the couch at times.  The medical grade gets me up and moving, stretching and even going on walks.  I still take Soma as a muscle relaxer - tho for me, it acts more as an anti-anxiety tool.

Oh.  As there have been the troubling studies showing possible serious problems with the Direct Acting Antivirals (DAA's)  Reactivation of Hep B....cancer recurrence or new cancers found, etc.  I insisted that my doctor run a complete HBV panel as well.   Same results - have the antibody and am considered immune to it - so the doctors say.

Heb B Virus DNA - <20 -="" detected="" nbsp="" not="" p="">
Hep B Surface Antigen W/REFL CONFIRM - NON-REACTIVE

Hep B Surface Antibody (Quant) -  13miU/ml  Normal Range >10 - Comments: Patient has immunity to hepatitis b virus



I am taking around 2 mls of LDN 3-4 times a week in the morning.  Still getting the 50mg tablets and mixing my own.  But am looking for a primary care doc who would be open to prescribing it, as well as ordering tests like Vitamin D and B levels, etc.    Am also still wheat free - since 2008 or so.

So here I am - HCV free after a 15 year journey since my diagnosis in October 2002.  Just in time for my 65th birthday in January.   Overlong ridiculous strange trip that I hope/thought was over with...?

Anyway, sorry that it has taken so ridiculously long to update this.  I continue to receive comments and emails and post them whenever I can.  Thanks for reading!

1 comment:

Diddly cat said...

thanks for the update, I was treated with anti virals same time as you. clear now of hep but have cirrhosis and looking for best diet to follow, it,s all so contradictory!. I,ve been wondering about supplements ( again contradictory info) AND stumbled on your blog. while looking up ALA best wishes to you. anne.