Hep C Discussion Forum

coolheat · Senior Member

RE: Results; now sad and confused

coolheat · Senior Member

Thanks Redbird and everyone, am feeling the waves. Drs office said the dr would call me later today and if I didn't answer he would leave me a message to the effect of the results. The physical therapy wants me there at 4 in the afternoon. They also moved my apt up with the dr from the 6th of oct to sept 30th. I am not panicking. If I failed, you are ALL correct, there are other protocols here and or around the corner. Many of you have failed numerous times or once and tried something else and found SVR, giving us hope. I will keep trying and persevere. Just like Shackleton, his motto is "Thru Endurance we Conquer". They lost the boat 'The Endurance' to the ice but still trudged on. All the men remarkably survived. Only reason for the Dramatic side note is; Its the will to survive that chimes.

Redbird29 · Veteran Member

Marsha,

So sorry to hear that you are having a hard time and about your results. Like everyone said, get the papers from you doctor to make sure what you VL is.

I too would like to know what is being said about Harvoni and bones - my left hip has been hurting for a few weeks also. I just figured that I hurt it doing all my crazy yard work but it isn't letting up.

I am sending you waves of love, light and peace to carry you through!

~Robin

coolheat · Senior Member

Thanks everyone, you all really do feel like a rock. Bubble, where did you read that about bone and harvoni? Will keep you all posted, going over to drs now to see if it was a mistake, or what.

bubble · Senior Member

There is still your day in the sun Marsha. This makes me wonder what Harvoni has that it does not require ribavirin. 1a usually needs more tx time. I would ask for 24 weeks or possibly a Vikera tx. With the new pangenotype tx being approved next year you will be good. Seems more and more Harvoni does cause bone related ailments. I would really give your doctor a talk and find out what your options will be. Hang in there.

Brian1412 · Guru

You hang in there my friend

Penelope PePod · Senior Member

Marsha,

I'm so sorry for what you are going through. I don't even know what to say; just wish I could give you a hug. But you can be sure I'll be praying for you big time.

Penny

Cinnamon Girl · Guru

Hi Marsha,

Sorry you`re in such pain and distress, I really feel for you. Like the others, I would be very surprised if the `detected` result is right, and I hope you get some more clarification from your doctor as soon as possible.

Please let us know when you find out more. Take care and do your best to keep your spirits up, you know we`re here for you. smile

Groupergetter · Guru

Matt, I had this happen to me. The doctor ordered the quantitative labs CPT 87522 but the technician drew and submitted for the antibody CPT 86803. When I informed the lab of their mistake, they voided the billing to the insurance company of the wrong test. I had to go back and have blood drawn again. Of course the doctor may have ordered the wrong test as well. Mistakes do occur. There is also an hcv qualitative CPT 87521 which is subject to false positives.

Hepatitis C Viral RNA, Qualitative TMA

Clinical Use

Monitor antiviral therapy (ie, demonstrate resolution of infection)
Confirm hepatitis C infection

Clinical Background

This qualitative HCV RNA test detects the presence of hepatitis C virus (HCV) circulating in the blood and is among the most sensitive tests available. Qualitative HCV RNA tests are used to evaluate the effect of antiviral therapy. If HCV RNA is undetectable both at the end of a course of treatment and 6 months later, long-term cure is highly probable.

This test can also be used to confirm HCV diagnosis when viral loads are potentially very low, eg, in immunosuppressed or immunoincompetent individuals, and when patients have elevated aminotransferases with indeterminate HCV antibody tests (EIA or RIBA^®). It differentiates between past and current infection and may be useful for detecting acute infection prior to seroconversion and when aminotransferase levels are normal or only slightly increased.

Method

In this transcription-mediated amplification (TMA) method, RNA is extracted from the patient sample and amplified by utilizing two enzymes (reverse transcriptase and T7 RNA polymerase) to cycle between RNA and DNA intermediates, resulting in several billion RNA amplicons. These amplicons are detected via hybridization protection assay (HPA) in which only hybridized probes remain chemiluminescent and are detected in a luminometer. Analytical sensitivity is 10 IU/mL for most genotypes and 5.3 IU/mL for genotype 1.

Interpretive Information

A detected result indicates the presence of HCV RNA and is consistent with active infection. Due to the sensitivity of this method, some false-positive results may occur, particularly in specimens that have been contaminated through aliquoting or some other procedure. A not detected result, on the other hand, is consistent with the absence of HCV RNA or with HCV RNA levels below the detectable limit of the assay. Following antiviral therapy, a repeatedly negative test indicates clearance of the virus and recovery from the infection.

Matt Chris · Guru

Hey Marsha

Sorry to read of your test results and osteoporosis.

With your normal LFT's (ALT & AST) I am wondering if possible that you received not a PCR quantitative test but a test for Hep-C antibody.

Ask your doctor what is the name of the test that had been run, it should have the letters PCR (polymerase chain reaction) or RNA

Quantitative test refers to a HCV RNA test that gives a number of viral particles (down to the limit of quantification)

In case you have relapsed remember your future has not been written yet and you have a lot more living to do.

matt

wmlj1960 · Moderator

Hi Marsha.

I'm sorry your having painful osteoarthritis issues and bad lab results news to boot. OA affects me also so I know it is painful and I try not to take tapentadol because of my bad liver but... Hopefully that detectable result will turn out to be false but if not, there is a solution. 1st thing is to be sure it is accurate. If it is, it's a big slap in your face, but it's not the end. I relapsed early this year but I didn't quit. Hang in there and take this one step at a time. I'll be awaiting your future post and I wish you well.

coolheat · Senior Member

Hi Tig, it was my regular dr. that told me the result from the last Fri. blood work said detectable on the VL test. She had the info. because she had tacked on a couple of other blood test with the ones that my liver dr. had requested. reg dr tested for osteoarthritis, and inflammation. There was lots of inflammation and osteo stuff show up. Plus the xrays showed like really bad osteo damage. More disappointed than anything. Thanks, Marsha

Groupergetter · Guru

Marsha, if there is a relapse with Harvoni my doc says it almost always occurs within 4 weeks eot. Hoping there is some mistake here. I know we had one member relapse w/Harvoni but she only did 8 week tx. I have heard of a couple instances where a person was detected after eot and upon subsequent labs was UND. I use herring and troll what's called a Stretch 30 also a nicely cut piece of fresh kingfish works well :) Haven't done much grouper fishing lately. Caught some nice trout and flounder on Monday. OOOPS, just noticed Tig gave similar info on relapse. This is gonna work out. I know it's difficult, keepa go.

Tig · Admin

Hi Marsha,

I would want that report first. Who gave you these results, doctor, nurse or lab tech? I'm sorry about your orthopedic troubles. I was on something else but also suffered for months after treatment ended, with hip and shoulder pain. Saw an orthopedic specialist and he saw signs of severe inflammation. I also used a cane to ambulate and to catch myself when I had hip spasms. It took months, but it resolved and I don't need the cane anymore. I ended up taking 500 mg of Naproxen twice a day, I had to. Didn't like its possible liver toxicity, but it worked and I'm off of it now.

The majority of relapses on Harvoni are seen in the first 4 weeks following treatment, and generally all by EOT+12. There are reports of detected results at EOT that were undetected at EOT+12, so first things first, get the physical report of this test. This could be a false positive, an error in the interpretation or accurate. Let's wait for the report. I know this doesn't relieve your anxiety, but there's too much uncertainty right now. If treatment isnt successful, there are some excellent options still available and new protocols soon to be released. Do your best to be positive, hard as that seems right now, but this isn't over yet. Not by a long shot!

coolheat · Senior Member

I will go into my gastro hep dr office in the am.. ask for a copy of test. I have been diagnosed with osteoarthritis since 1994. This is it hasn't really bothered me till now. 2.5 mo. ago I was working out at the gym with a trainer 3 times @ wk.. Bike, treadmill, weights, steps, etc.. then about 1.5 mo. into harvoni tx I wasn't getting rid of the lactic acid right, so I stopped work outs and was going to cruise into completion of tx before going back to gym. In my last mo of tx, my hip started hurting and my low back. Had lots of massage, nothing helped. Somewhere in there the osteoarthritis took me down and now it is a serious condition. I am walking with a CANE. Nothing wrong with walking with a cane, but I have never had anything like this happen to me before. I have like ziltch stabilization in my back and hips. Reg. doc thinks a small bone in my R foot has broken as well in the compensation process for the L hip.

I thought if you were going to come up detected, it would happen down the line some like the 12 wk or 6 mo or 1 year spot. Not 1 mo. after EOT. Rattled And thanks for responding Groupergetter !!! Do you use anchovies, herring, or hoochies? or what?

Groupergetter · Guru

Marsha, I can understand your concern, confusion and frustration. First thing I would do is get a copy of the lab report. Do you have a way to access it online? I would want to see the actual report. Did the doc say what was causing the bone loss? Have they scheduled any additional testing? When the doc says they want to do "rehab" did they say what this would consist of?

Truly sorry you're having to deal with this. Please keep us informed of what's going on. People here care. Keeping you in prayer.

coolheat · Senior Member

Had post tx 4 wk blood test done last fri.. and a couple of other tests my reg. doc wanted done also. Have been using a cane to help me walk for 2 wks now. 1/2 way thru harvoni tx I started getting a lot of pain in L hip, that went to L knee and to R foot. Some nights could barely, seriously walk. So last Fri. had 7 xrays done of low back and hips. My bones are crumbling she said today and you need rehab on this as soon as possible. Low on potassium and my platelets are up from 60 to 90. liver enzeyms are 31 and 21 don't remember which is which. I ask if my viral load test had come in as well. She said yes and that it said detectable. I ask how many copies, she said it didn't have any other #'s associated with the test, just detectable. I like went blank and couldn't think, glazed over. Can anyone tell me any thing, everone her comes up mostly undetectable. So my 4 week post harvoni test says I am detectable. Trying to hold it together now - could someone who knows more get back to me with some input. Thank You, Feeling sad

update: Rehab just called they don't waste anytime, want me to start to strengthening my muscles tomorrow.

Hope I'm not snake bit, was hoping someone could give me some feedback. Thanks

Impatient, yeah probably, more anxiety than anything.

-- Edited by coolheat on Thursday 24th of September 2015 02:01:45 AM

-- Edited by coolheat on Thursday 24th of September 2015 03:10:35 AM

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