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Post Info TOPIC: I Was Recently Diagnosed and A New Member


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RE: I Was Recently Diagnosed and A New Member
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Hey Blue,

Welcome back.  I'm glad you decided to get this treated. As lilbrownie points out, having the virus messes up our integrated systems.

I think getting treated before you feel horrible is a good plan.  I found that lots of little aches and pains that were not diagnosed as a part of HCV went away after being cured.  Everybody is different.  The same is true in how you will be feeling on treatment.  You may need to cut back on vigorous activities and spend your energy on adjusting and healing.  You've got a great reason to take it easy.

One thing you'll hear over and over is that you should be drinking LOTS of water; a gallon a day.  It flushes your system and really cuts down on the side effects.

You'll be glad you did this and we'll be happy to help when we can.

Cheddy



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Hi Bluejam!

I just recently started Harvoni as well, 1A here, and am on the 8 week course.  I am on week two, and so far any sides I am having are mild  so far,

I have a thread in the " On Treatment" area if you want more info on my experience , which I'll update weekly unless  something noteworthy comes up.  So far, it has been so uneventful that it would make for a boring read

I'm glad you decided to treat.  It took me awhile to do it, I finally realized that as healthy as my lifestyle was, it could not make up for the constant state of inflammation caused by the virus.

My Gastro is the one who explained the inflammation situation, explaining that just having the virus in the body can keep it in a constant state of inflammation, and THAT can contribute to a myriad of dis-ease such as heart disease, auto immune disorders and many more. That convinced me to do it now.

 BTW, I actually asked my doctor point blank if I could have an occasional craft beer or glass of wine after treatment.  I haven't touched it in years and miss it.  He said,  with my fibrosis numbers, after the 6 month mark, it would be fine in moderation.  That's me, and everyone is different.  I would ask your doctor.

Wishing you the best on this journey

PS: Biopsy and blood test is still the norm in my state, as there are NO Fibroscan machines here , which was fine since my insurance plan required a biopsy.  Odd thing is, my biopsy was done 3.5 years ago, but they accepted it , along with blood work.  I thought they would insist on a new one, but nope. 

 

 



-- Edited by lilbrownie on Friday 18th of January 2019 01:16:37 AM



-- Edited by lilbrownie on Friday 18th of January 2019 01:36:26 AM



-- Edited by lilbrownie on Friday 18th of January 2019 01:37:06 AM

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



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Hey bluejam,

Glad to see you back again! And, with such good news too. From your last post (back in early 2017) to this post today, is quite a positive update!

I am so glad you finally got your Harvoni treatment underway! Happy "day four"!

Are you on 12 weeks or 8 weeks of Harvoni?

You will need a signature line ... try something like this, and include some labs if you have them/know them ... "Male, 67 years old. Dx GT1a in 2017, HCV probably since 1970's. 2017 U/S shows some fatty liver. Fibroscan done on ________, showing Fscore of 1-2? Pre-treatment labs on ________ ALT ___, AST ___, VL ___. Rx 12 weeks Harvoni SOT Jan 14, 2019 to EOT Apr 8, 2019" ...


That's nice that no one ended up asking you to have a liver biopsy done after all, it was only the fibroscan that you have had done recently? Did you also have another recent abd. U/S done?

Our pal "5" who first greeted you here today is quite right about treating yourself well, eating well, and getting good rest, and please DO drink LOTS of water! I am betting you are going to do just fine and breeze through this treatment easily. Some people can feel fatigue, that may just be occurring with the new drugs to your body, it may be transient and short-lived, some people think they feel things especially at first, but then what they have felt can subside. I would always increase my water intake if i thought i was feeling fatigued on these drugs - you may be surprised how much an effect taking in a really good amount of water each day can help.

Please do let us know how much water you have been drinking.

Many people decide on an evening or night time dosing - whatever works, as long as it is taken at the same time every day.

Although your Harvoni MAY be taken WITH or WITHOUT food, i would always opt to take it with food (if possible). Or at least with a snack.

Your questions:"Do the sides get worse?" ... generally i would guess they will not, if people feel things it seems they are often noticed more in the first while you are on therapy. For headaches or fatigue i would always ensure i am drinking a lot of water. "Libido?" ... might be affected while on therapy but that can just be due to stress, or whatever!. I think I recall one or two people here who reported pleasing Harvoni dreams! Who knew. C.

 

 

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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congratulations on getting on the new DAA's  bluejam, it will go by faster than you think and the cure lasts forever

take it easy, drink a gallon of water a day , eat well and rest. 

5



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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It has been so long since I have updated my noobie thread. A lot has happened since.

I was actually going to just do nothing and live with it. I have always been very healthy and active that I felt this is not the thing going to kill me. Well, a year went by and I had my annual checkup. My GP asked, "What about the HVC?" I said that I would rather take my chances. Long story short, he referred me to a gastro guy and he set up a fibroscan. My liver came out pretty good and I decided to get the poison out of me. It took about 6 mo but I was prescribed Harvoni recently with no out of pocket $$. Lucky me! I am 67 and retired. Raining for the next 3 months here in the northwest so I feel it's good timing.

Just started my 4th day taking it...I am feeling pretty good. Today is the first day of feeling a bit lethargic and I slept like a rock for the first time in forever. It seems to make me a little absent minded and I am eating a lot. I am thin so I can get away with that. I decided to take it at 9PM and so far I think that will work for me.

I confess that I still drank craft beer up until treatment. I never touch hard booze. It has been part of my lifestyle since I am involved in brewing and growing hops. I AM NOT touching a drop during the Tx but plan to have a beer after I am finished and clear of the virus. But who knows? Im kind of liking this sobriety thing so far.

Will side effects get worse? Do any of you have issues with having sex, particularly males?

Guess that's it for now. I will try to keep you all posted. This site is very helpful and soothing so thank you all for your devotion to this site!

 

Jody 



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Thank you Canuck. Great info and ammo for me! I am going on a 1 week road trip vacation tomorrow and will hit this research strong when I get back.

He did say that he used to be into the HVC field. Perhaps that is why he was the first to test me for it. It was my first time seeing him since I had moved from Portland. He also said the person performing the biopsy would be a gastroentologist. Is that "specialist" enough?

I appreciate it! So glad I found this forum.



-- Edited by bluejam on Wednesday 15th of March 2017 05:15:09 PM

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Hi again bluejam,

So many HCV patients needing treatment, and so few hep docs (hepatologists, internists or gastroenterologist, who generally have historically been pretty well carrying the load), but I think we see  more and more GP's are being brought into the fold of treating pts for HCV. Like any doc some will be better at it than others. Some of these GP's are very hep knowledgable.

Specialists "may" well offer advantages, just their rote familiarity/experience/routines, but there can be downfalls too, such a long waits to be refered to them. Up here you have to be "refered" to a specialist, the request for you to see one has to be done by your GP. Some specialist have their own fibroscans, routinely do them (or routinely send you to another facility for one, same way you are farmed out to a facility to get U/S's or CAT scans). Find out who has the fibroscan machines, where they are, the cost.

Your GP may not have quick, easy, ready access to a fibroscan, or he may be of the thinking that a standard biopsy is very helpful, diagnostically, and you cannot really argue with that, as the biopsy holds the potential to tell them more than a fibroscan. Your GP may be wanting a biopsy just based on your U/S results, who knows. But as far as giving you an easy non-invasive rough and ready Fscore to qualify you for treatment approval, a fibroscan gives you an Fscore. And, at this point you "might" well have already had a fibrosure/fibro-test done by your GP. "Cost" always seems to be a factor "what is better, cheaper, quicker, thorough and/or adequate" - that is the question - and the answers may be dif. for everyone involved!! A specialist may have dif. thinking than your GP on biopsies, or on many things for that matter - hard to say! But do sleuth around, and find out if there ARE any fibroscan machines in your area. If you go specialist shopping, check them and their waitlists out carefully. Don't burn your bridges with the GP, as your reg. family physician, he is an invaluable ally and partner, even if you have the bulk of the rest of your assessments, treatment and ultimate follow-ups done by a specialist. 

You may have a bit of a wait in front of you at this point, so position yourself strategically, find stuff out, (aside from the all-important "exact testing requirements" that will "suffice" to  "qualify you" in the eyes of the insurer), but also the other things that need to "get done" before treatment, hep A/B testing, immunizations, etc. Start keeping copies of your test results/labs. 

Hang in there - it is a process. You'll get there. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi, 

It used to be quite common for insurance carriers and/or doctor to request a pre treatment drug and alcohol screen. If you said you were clean and sober, they'd check. If you failed, treatment was delayed for 6 more months, until you were. I don't hear people mention it much but with the cost of these new drugs, they want to know. People that continue to partake have lower odds of successful treatment. That's the thought...



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Thank you all so much! Great information. Yes, this doc is my GP. I need to call my insurance and seek a specialist for sure. I will keep you posted.

BTW, he also said I must be clean from all alcohol for a minimum 6 months before ins will approve Tx.

Thx again!!



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Tig


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Hey Jody, 

Welcome to the group! I'm sorry you're having to deal with the confusion. That is a common denominator it seems, but we'll do our best to mitigate that! Start by educating yourself, as you have already begun to do.

Jimmy and Canuck have given you some good advice and provided some great questions. Biopsy, while still very useful and accurate, is used less than it was just a couple two or three years ago. The use of specialized ultrasound or Fibroscan is being utilized more often now, as is the blood serum marker tests, Fibrotest or Fibrosure. I've seen more use of the blood testing for fibrosis staging than most other methods. Certainly biopsy remains a very good diagnostic tool and is fairly easy and accurate. The thought of an invasive procedure may seem daunting, but don't let it be. Weigh your options, they are all worth your consideration. Your insurance provider will have a say in this decision too and may want the blood testing used first. Cost is minimal, where biopsy is $$$$. Fibrosis stage in these days of super drugs means less than it used to. The sooner you start, the better it is for your overall wellbeing. 

We have a lot of information and if you need anything specific, just ask for it. There are links in my signature that will help you set up yours. Having that info available helps when replying. Don't do too much Googling, it will provide you with quite a bit of dated treatment stories and results. These new treatments are very easy and very effective. Get er done!



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Greetings from Houston Texas.

 

Ok I want to take a different approach and concentrate on this statement.

"...I was diagnosed two weeks ago after a routine annual exam..."

Another test ran last week and a Doctor that says he needs a Biopsy or Insurance would deny.

The thing that strikes me in all this is the assumption I have made that the Doctor is a standard GP.

Generally speaking a specialist in the field has a better shot in dealing with insurance. Can you tell us the type of Doctor you are seeing?

 

And again, Welcome!

 

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hi Bluejam,

Welcome here. I am glad you finally got diagnosed.

About the biopsy, I understand your reluctance.

My only suggestion is to "double-check" the "interpretation" of what your doc suggested (ie. that insurance WILL NOT "approve" your treatment unless you have a biopsy). 

"Stage 3 or 4", can also be refered to as "Fscore". Fscores generally run from F1 to F4. In other words, stage 3 or 4 should be the same as F3 or F4.

I do not know if this is accurate information - (1) that you "have to be" F3 or F4 for your insurance to approve you, and (2) that the only accepted method of determining your Fscore is by "biopsy".

It would that appear, at least in some US states, that people ARE getting treatment at earlier/lesser Fscores (BEFORE Fscore 3 or 4), AND, we are much more frequently now seeing docs, patients and insurance providers prefering to rely on non-invasive "fibroscan" tests, rather than biopsies, to determine Fscores.

I would definitely double-check (for yourself, with both the doc and with the insurance company) that it is accurate information, that the insur. "demands" you have to be F3/4 before they will approve you, AND, that an Fscore "by biopsy" is the only thing they will accept.

I would be disappointed if your insurance will not accept a Fscore below F3 or 4, and especially, if they do not accept an Fscore from a "fibroscan". Fibroscan is perfectly accepted and adequate for many docs, insurance companies, and in many countries (there also "other" helpful but lesser lab tests that help to back up your Fscore, such as fibro-test/fibro-sure/apri/acti-test).

Make some calls, ask around, check it out, ascertain what the insurance requirements are. Find out if there IS a fibroscan machine near you.

If you are given absolutely no choice but to have a biopsy, so be it - biopsies have their good points, but so do fibroscans! Your biggest stumbling block may well be if you show up F1 or 2.

If insur. WILLaccept a fibroscan, you can side step the biopsy to get to treatment, but if you only show F1 or 2 by fibroscan (and they stick to this "you have to be F3 or more") then you still have an obstacle. Should you be F1/2 by fibroscan, and (truly) need to be F3/4, then fibroscans can be repeated, you can also opt for a biopsy (after) as well, hoping a biopsy "might" show a "higher" Fscore. If a initial fibroscan showed less than F3, a biopsy might also only derive you a similar Fscore.

Your priority is to get into treatment for your HCV as soon as possible and fibroscans can and should make that happen more easily. Biopsies do have their place, and biopsies can add some additional info, the benifit of "visual" cellular confirmations of various things, and "maybe" picking up on cancer cells (if they were there), and IF they happened to hit the right spot (it is kind of hit and miss biopsies).

It might turn out they all (your doc AND insur) will end up insisting you have a biopsy sometime, if not now, but even perhaps sometime in the future, so it may be unavoidable. But for now, (in my book) it should be reasonable that a fibroscan Fscore (and some of the lab tests I mentioned) should be adequate to get approval for HCV traeatment.  C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Welcome from another 1a. You have made a great start by putting down the beer and beginning your tests. The biopsy was not as bad as I had it built up to be. I have had 1 the old fashioned way and 2 the way it is done now a days. I do not recall my shoulder hurting nor was I sore near the biopsy site afterwards. Please use the search function and you will find lots of others who can share their experiences. Do not be afraid to ask questions as that's what we do here!

You are off to a great start,

wendy



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hello Jody,

Sorry to welcome you to the club, but nice to meet you, I'm glad you found this forum.

I too was very nervous having a biopsy, but they really are important tools for the Dr.s to know the condition of your liver, and get you the meds and the pain wasn't that terrible. oddly I think my shoulder hurt worse than the biopsy site, and that was just for an hour or so. I think thats common, someone clever on here may remember why it hurt in the shoulder...

Anyhoo, living with a diseased and damaged liver sucks, so please do whatever you must to get treatment.

Hope to talk to you again,

A

 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



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Hello everyone. My name is Jody. I am a healthy active 65 yr old male and I live near Salem, Oregon. Physically and mentally I feel fantastic.

I was diagnosed two weeks ago after a routine annual exam. I cant believe this is the first time a doctor had my blood tested for hepatitis. I figure Ive had it since the early 70s.

I had an u/s and another blood test last week. It showed my genotype as 1A. The u/s showed fatty infiltration/hepatocellular disease. No suspicious focal hepatic abnormalities detected.

My doctor has advised me to get a biopsy, which I am very nervous about. I have a low pain threshold and have never needed any invasive procedure in the past. I told him I would think about it. He then told me that insurance will not pay for Tx unless I have the biopsy and shows that I am stage 3-4. Does this sound common?

Anyway, after reading a lot of posts in this wonderful forum, I am leaning toward going ahead with it.

 

BTW, I have been quite the drinker all my life, only beer, but stopped as soon as I got this dreadful news. I was ready to stop anyway.



-- Edited by bluejam on Tuesday 14th of March 2017 02:53:00 AM

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