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Finally got the results back 7 months post treatment and it’s “HCV RNA target not detected” but the explanation in the comments says that it is equivalent to “<15 IU/mL" but that Health Ontario will be using the new nomenclature from 2019 on.
It's a little mind blowing that such a physically and psychologically damaging disease is not regularly screened for. I had to reach out across the ocean to find someone that cares. Thank you Dr James and the great bunch of people on this site for really giving a damn about people with nowhere else to turn to , God bless.
The last time ALT was below 30 was in 1994 so it is encouraging especially 7 months after EOT
Finally got a final blood test done and am waiting for the results. A separate CBC showed a change in ALT from 35 to 13 7 months post treatment (Harvoni) and my platelet counts are slowly rising , 132 on the last test and 143 on the most recent. The Hep C results can take 3-4 weeks but they notify your doctor if you have any viral load so no call after 2 weeks is a good sign
While on the treatment my WBC MONOCYTES were at 9.4 which my FD was concerned about but this test put them at 7.0 so I am chalking that up to the Harvoni.
19 September 2018 at 3:49 am in reply to: after treatment ends how long till i feel normal and have energy #28566Please be careful with what you drink. Additives in energy drinks can lower the effectiveness of tx and really make you feel like crap as you drink more while on treatment. Red Bull and Monster are not the only soft drinks that add harmful to tx additives , MANY soft drinks now add this crap to so check the labels of everything and no Seville oranges or grapefruit (juice or the fruit) while on tx.
18 September 2018 at 5:53 pm in reply to: after treatment ends how long till i feel normal and have energy #28561It may seem strange but on Harvoni only drinking a lot of water every day fixed that for me.
I had the exact same thing appear on my leg with Harvoni into the 3rd week. It stayed for the whole treatment and took about 6 weeks after treatment ended before it started to fade. It is now a medium brown patch that no longer feels irritated or rough to the touch. I had a biopsy done and it is not cancer but after that my doctor just started throwing guesses at it. Topical steroids can permanently thin your skin so I decided to not be a guinea pig and wait it out.
Hmmmm,
3 weeks post treatment and last blood test came back negative but now I have developed a severe lower back ache since about a week before finishing tx. Doctor is doing a PSA test and a prostate exam on the 12th but it doesn’t feel like it’s a constant pain like my father described but just to the left of my tailbone and seems to ebb and flow throughout the day.
Just a summary of TX so far (Harvoni 12 weeks prescribed)
Likely infection date summer 1985 , treatment naive
HSV: no exposure (NOT standard with any tests and must be ordered separately and insurance did not cover)
HIV: no exposure
HBV: exposed to and self cleared
HPV: no anti-bodies detected in throat , urethral and anal swabs (Three swabs needed , was told that infections are localized and no approved blood test exists for it yet) . Separate test from standard STI testing and insurance did not cover it.Baseline in December
6.95 E 5 /ml GT 1a ALT 35 AST 53 Fibroscan F0-F1 at 5..6
Started Feb 17th 2018
At 4 weeks:
VL UND , ALT 36 AST 52 NO FS taken
At 8 weeks:
VL UND ALT 27 AST 43 Fibroscan F0 at 5.4
12 weeks EOT taken today last pill last night :
Observations during treatment :
No side effects
Water intake @ 8X 20 ounces of water per day
No antacids with calcium carbonate, no herbal anything , diet strictly watched for Taurine , Grapefruit and it’s extracts , Seville oranges
Weight loss has stabilized after 8 weeks 238 Lbs to 208 Lbs and it has been 208-210 for the past 4 weeks
Dose at 7pm and was held within 1 hour of this time without fail during entire treatment.Hmmm , AST on the latest was 26 and ALT 42. Fibroscan at 12 weeks was F0 so no change. Are the first two numbers supposed to drop ? 2 pills left then EOT test on Monday and I will delay the SVR test until 24 weeks.
Both results came back today with week 4 and week 8 as UND , AST, ALT is about 35% lower than at baseline at week 8. Platelet count is really low but I am seeing my doctor in an hour and he will go over my options but will likely change my diet back to a normal non-Harvoni diet and retest before doing anything.
Thank you Dr Freeman,
I will pass this along to my FD and hold off on the vitamin K. It was the rate of drop that had him concerned . about 35 per month since the pre treatment reading. He said he wanted another reading next week to see if it is still the same rate which would put me at about 50 at EOT if it is. He did run a culture of a blood sample and said he didn’t see any obvious infection. My diet is really bland since the treatment started and I plan on remedying that as soon as it is over . He said he will consult with the hepatologist that saw me for the fibroscan and your experience with treating Hep C vastly eclipses the experience my FD has so I I will go with your advice and hold off to see if it corrects itself once everything gets back to normal.
Many countries restrict covered treatment to over a certain liver damage level (eg F2) and/or co-infection to say whether it is covered or not. A viral load is a viral load no matter the count and once 2 tests come back positive over the period deemed to be chronic and not acute (6 months in mine) then the load itself is not a determining factor. The damage criterion steadily drops as time passes and more is known about the cost of leaving someone untreated so check with your countries health system as there is a good chance it may be completely covered.
13K is extremely low and viral loads do cycle from high to low by themselves but yours is exceptionally low. If you have access to the test result sheet (or ask your Doctor)and look at the measurement units. Not sure about your country but mine uses IU/mL and then has a multiplier (eg 2.7 X 10E6) which will give you the number of copies per mL. IT may be already in copies/mL and if it is then your system is strong enough to almost beat it and just needs the boost of the treatment to finish the job.
My Doctor and Dynacare went completely above and beyond this time. He decided to try PHO one more time but he had me get the blood sample at Dynacare and they held 3 X 5.0 mL vials prepped (2 required for this test) and frozen. He then contacted PHO and faxed them the three sheet RNA requisition and had them sign off on it as approved and complete. Dynacare then released the samples and the known good forms the next morning. ALT , AST , Ferritin and CBC were included with the RNA PCR and set as 8 weeks into treatment which was listed as Harvoni. Lets see what happens now
Addendum :
Doctor phoned me to say platelet count is 84X10*9 and my doctor wants me to go for another CBC in 7 days and give me a shot of vitamin K if it drops lower and then a platelet transfusion at EOT. The vitamin K won’t affect the treatment ?
Thank you ,
I am aware that there isn’t much of a possibility that my situation is the norm. My private insurance has agree to cover a single RNA test in Quebec that will be collected on Monday morning and results will be in the Doctors office by next Friday before end of business.
Ontario stills says to retake the test so my Doctor got fed up and found a laboratory in Quebec that will collect and run the same assay test but it will cost 312$ CAD that my insurance will cover minus a 12.50$ co-pay. I am good with that and have given up on Ontario.
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