14 weeks after taking my last Harvoni in early June, 2015, I tested Undetectable on my HCV RNA test yesterday. I was previously U/D on the 4 and 10 week labs as well.
So according to my doctor, I am cured. I am hearing about other protocols that recommend further testing at 24 weeks. Guess it depends on who your doctor is. The nurse said to see him again in 6 months. Ended up arguing with her as there was no CBC or CMP tests done. Could she ask the doctor to please run them? She said that as my viral load was now normal, all of my liver enzymes were probably normal so not to worry about it. Sure, guess it's wrong of me to want to know the state of my liver, kidney, thyroid, platelets, etc after undergoing a powerful new medication where no long term side effects studies have been done. But that's just me. Believe me, it was a relief to see that last Not-Detected and I am thrilled to be rid of this crap! See update below:
UPDATE: Weeks later, I did finally get labs done and all of my numbers look great! Granted they were never bad to begin with....at any rate, most are the same or some either better?
In January 2015, my ALT/AST was at 32/23 (range - 6-29/10-35)
In May, after one month of Harvoni, my ALT/AST was 28/34
Sept. 2015 ALT/AST - 14/17
Wasn't much change in red blood cells or platelets - both ok. The Absolute Neutrophils went from 2611 back in January up to 4345 presently. Nothing much else.
I'd love to be able to afford to go back to my integrative doc, who would run a lot more tests! Vitamin D3, Magnesium, all of the B vitamins, and all of the thyroid tests besides the TSH, Iron and Ferritin, etc. Although my labs were pretty much perfect, I'd like to know if and what I am or have become deficient in. I do feel much better - don't know if it's because of no longer having HCV or just that I felt so crappy during and after treatment.
I guess that I am cured - or just have such a low percentage of virus left that it can't be measured. On the other hand, I "feel" cured. I have felt much better these last few weeks.
I had labs done on Monday (were supposed to have been done 2 weeks previously) and was expecting results - I got an email to check my "Patient Portal" - and the big U/D report was there.
I am very happy for sure....however, it will always be in the back of my mind...
So, we shall see - hopefully, 5 years down the line, if I am even still here, I will still remain negative for HCV - and forever. Much more will be learned in the future.
I have not started feeling good after finishing Harvoni June 22. Still so tired, Gi Issues, low rbc and platelets. Virus nondetectible but terrible l ethargy, muscle cramps pain sleep problems. .Harvoni not well tolerated ..caused violent vomiting, diarrhea nausea which were helped by Odansitrin (sp?) Antinausea drug used in chemo patients. Anyway am most interested in your treatment with low dose Naltrexone--LDN. how did you get your doc to prescribe?
ReplyDeleteDo you need scrip for LDN?
ReplyDeleteCongratulations on your cure and hope other people will also benefit from the drug although there is a lot of uncertainty in the process.
ReplyDeleteCongratulations Chris!
ReplyDeleteArtgirl did you take Riba with Harvoni or are these just Harvoni effects?
Some people get inflammatory reaction to viral clearance, as the virus has been both stimulating and suppressing the immune system for years and once removed things are out of balance; probiotics, LDN, and immune herbs like astragalus or echinacea would seem to be indicated but I've never had to deal with this myself as my VL was very low pre-treatment, I went through all that before Tx I think.
I had, for geno 3, Sofosbuvir plus 25 mg/day GS-5816 which is now called Velpatasvir, for 8 weeks - here's the trial, I'm in the first arm (that's me with the upper respiratory tract infection).
I would recommend this drug combination, I had a very easy time.
But first get your viral load down with a low carb diet and avoiding polyunsaturated vege oils. Dairy fat and coconut, fish, and intermittent fasting are good things to add to that.
The lower the VL before you start the better.
I'm two weeks in to treatment with harvoni. I have been experiencing insomnia, and horrible soreness in all muscles throughout my body. I don't know how long I can handle this. Does the muscle soreness go away after taking harvoni for a while or does it tend to stick around?
ReplyDeleteI'm two weeks in to treatment with harvoni. I have been experiencing insomnia, and horrible soreness in all muscles throughout my body. I don't know how long I can handle this. Does the muscle soreness go away after taking harvoni for a while or does it tend to stick around?
ReplyDelete