Tuesday, May 12, 2015

Harvoni - 4 Week Lab Results - Thoughts on Treatment


Saw doctor yesterday and got back HCV PCR test results after 28 days of Harvoni.  Undetectable for HCV!   Normal lab work - CBC - urinalysis.

After spending an interminable weekend worrying about my lab tests, it was kind of a shock to see.  More so, the CBC due to the weird sides I'd been having.  Bloating, having to urinate seemingly constantly, and the recent water retention.  I almost had myself convince that I had ascites!

My blood pressure was 175/87 which freaked me out - last time it was 120/75.   I had seen on the forums that some people's BP does spike with Harvoni.  However, according to my doctor, all of my problems were due to stress.  Ok.  He ruled out ascites, discounted the many side effects that I mentioned "We haven't seen that here."    He did not want to prescribe anything for my blood pressure, and was not worried about anything.  He was very happy for my undetected status.  As am I - now, we just have to get to the finish line.

More later....

May 26, 2015

Sorry for not updating sooner - but I've pretty much been over this stuff - the Harvoni.  Every day is different - don't really feel bad but don't feel good.  But after today, only one week left of the 8 week treatment.  I saw another doctor last week and my blood pressure was still kind of high - 165/85. Also had a low grade temperature.  Having bouts of tinnitus.  I went swimming a couple of weeks ago in the Gulf and got my ear clogged up.  Did not have enough money to pay for deductible so am partially deaf - don't believe that is Harvoni related.  Do have some itching but am getting little bite like marks here and there - they last a few days and go away.

I had mentioned my labs - my ALT and AST in January (pre-Harvoni) had been at 32 and 23.  After 28 days on Harvoni, ALT was 28 and AST at 34.  Albumin was 4.8 - after 4.3.  I had seen on the forums that a lot of folks seem to have lower albumin levels following treatment.

White blood cell count was 5.1 - after - 6.8
Red blood cell count was 3.77 - after - 3.79
Platelet count was 168 - after - 176
Absolute Neutrophils - 2611 - 3828
Absolute Lymphocytes - 1739 - 2040
Absolute Monocytes - 546 - 660
Absolute Eosinophils - 179 - 231
Absolute Basophils - 51.2 - 41

I had seen a few conversations on one of the forums about Harvoni and the immune system - some thought that the Harvoni had an effect on it.   Don't know.  My labs seemed to have improved though I think that the LDN is helping keep it strong.

After I got the undetected test back, I went back to 3-4 times a week dosing of 2-2/12 mls of LDN (compounded made from 50mg Revia)   Based on what I have read, the LDN might enhance the Harvoni, much as it does when used in concurrence with other therapies.

I also went back on milk thistle - just one capsule taken in the morning 12-14 hours away from the Harvoni.

Reading the forums has been informative - and depressing as more folks seem to be relapsing than what Gilead reported from their trials.  Many of them have only done 8 weeks.  They were undetectable at 4 and 8 weeks but end of treatment revealed the relapse.  I don't know how accurate the forum stats are.   I do know that I will not do more than 8 weeks of this stuff!  There are tests now that show if folks have a genetic resistance to the drugs in Harvoni.  Maybe they will start testing folks pre-treatment?

Also, after treatment, many people say that they feel bad - tired and with joint aches, headaches, upset stomach, autoimmune problems, etc.  For months. 

Thoughts - many of these folks also treated using interferon in the past - some multiple times.  Research has shown that interferon will trigger "Celiac Disease" in those who undergo interferon treatment - I have posted this in the past.

Silent celiac disease in chronic hepatitis C: impact of interferon treatment on the disease onset and clinical outcome


Hepatitis C is associated with autoimmunity, which can be exacerbated by interferon treatment. Cases of celiac disease activation during interferon treatment have been reported.


In hepatitis C patients, the activation of silent celiac disease during interferon treatment is almost universal and should be suspected, but it uncommonly requires interferon treatment discontinuation.

I would definitely avoid any wheat pre-during-post Harvoni treatment.   A few of celiac/gluten intolerance symptoms:

  • Abdominal Pain
  • Aphthous Ulcers (Canker sores in mouth)
  • Autoimmune Cholangitis - AND ALL AUTOIMMUNE PROBLEMS!
  • Beta Casein Enteropathy (Cow's dairy intolerance similar to celiac disease)
  • Bleeding, Unexplained
  •       Candida Infections
  • Carbohydrate Malabsorption
  • Cheilosis (Red lips, cracking/ oozing at corners of mouth)
  • Colitis, Collagenous
  • Colitis, Lymphocytic
  • Colitis, Ulcerative
  • Colonic Volvulus (Loop of intestine twists causing strangulation of intestine)
  • Constipation
  • Constipation Alternating with Diarrhea
  • Crohn's Disease
  • Defective Tooth Enamel (Yellow, white spots, missing enamel)
  • Delayed Gastric Emptying (Early fullness after eating)
  • Diarrhea, acute (Also called celiac crisis)
  • Diarrhea, chronic
  • Duodenal Erosions in the Second Part of Duodenum (Small ulcers)
  • Dysphagia (Difficulty swallowing)
  • Edema of Small Intestinal Lining
  • Esophageal Small Cell Cancer
  • Esophageal Motor Abnormalities (Poor muscle activity/coordination)
  • Gas
  • Gastric Ulcer (Stomach ulcers)
  • Gastric Ulcerations
  • Gastritis, Collagenous
  • Gastritis, Lymphocytic
  • Gastro-Esophageal Reflux Disease (GERD)
  • Gastro-Intestinal Occult Bleeding (Blood in stool that is not visible to naked eye)
  • Gluten Sensitive Enteritis
  • Gums bleeding/ swollen (Purplish in adults/ red in children)
  • Heartburn
  • H. Pylori Bacter (Infection of the stomach)
  • Impaired Gall Bladder Motility
  • Irritable Bowel Syndrome
  • Jejunitis, chronic
  • Lactose Intolerance (Gas, bloating, loose stools from milk)
  • Laryngospasm
  • Leaky Gut Syndrome
  • Lymphoma
  • Malabsorption of Nutrients
  • Maltose Intolerance (Gas, bloating, loose stools from maltose, a simple carbohydrate)
  • Nausea
  • Oral Mucosal Lesions (Mouth lesions)
  • Plummer-Vinson Syndrome
  • Post-cricoid Cancer
  • Primary Biliary Cirrhosis (Bile backs up in liver)
  • Primary Sclerosing Cholangitis (Scarring of bile ducts in liver)
  • Small Bowel Intussusception (One loop of intestine slips into another)
  • Small Intestinal Bacterial Overgrowth
  • Steatorrhea (Pale, smelly, floating stool hard to flush or sticks to toilet)
  • Sucrose Intolerance (Gas, bloating, mucous in stool from sugar)
  • Tongue (Beefy, red, smooth, burning)
  • Tongue (Fiery red, smooth, swollen, sore)
  • Tongue (Magenta, swollen)
  • Tongue (Pale, smooth, burning)
  • Vomiting

  • Anemia, Folic acid
  • Anemia, Iron
  • Anemia, Vitamin B12
  • Anti-Endomysium Antibodies (EMA)
  • Anti-Gliadin Antibodies (AGA)
  • Anti-Tissue Transglutaminase Antibodies (tTG)
  • Associated Autoimmune Antibodies
  • Bone Alkaline Phosphatase Enzyme, Elevated
  • Calcium, Low
  • Cholesterol, Low (below 156)
  • Coagulation Factors, Low
  • Copper, Low
  • Hemochromatosis
  • Glucose, Low or elevated
  • Homocysteine, Elevated
  • Hyperprolactinemia (elevated prolactin hormone)
  • Hypoprothrombinemia
  • Idiopathic Thrombocytopenic Purpura
  • Liver Enzymes, Elevated
  • Macroamylasemia
  • Macrocytosis
  • Macrolipasemia
  • Magnesium, Low
  • Neutropenia
  • Phosphorus, Low
  • Plasma Proteins, Low
  • Potassium, Low
  • Prolonged Prothrombin Time
  • Transient Erythroblastopenia
  • Zinc, Low

  • The list mentions anemia due to malabsorption of nutrients -  or iron deficiency.  Of course, in Hep C, iron overload or elevated serum ferritin is much more common.   A few forum folks mention elevated serum ferritin - which alone can cause elevated liver enzymes.  Again, I posted about this years ago.   IP6 worked great for me - the capsules not the hard tablets.  My ferritin was not severely elevated though.   Having phlebotomies done regularly will help lower ferritin and reduce the resulting oxidative stress to the liver - the iron in the liver is what does most of the damage!!!!

    I wish that I had more money - I would love to go see Dr. Berkson again.  Or at least be able to see my own integrative doc as she also offers IV ALA.   But of course, insurance won't pay for most of the stuff that actually works - only Big Pharma stuff, which I really don't use.  Except for the Harvoni which thankfully seems to be working for now - hopefully I will remain undetectable after end of treatment and further down the line.  But I will always use Low Dose Naltrexone!

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