Hep C Discussion Forum

Rick · Member

RE: Just found out I have hep c g#1

Canuck · Guru

Originally, you and your doc had been talking harvoni (I think).

Then, you were informed by doc (or insurance company themselves - I am not sure which), that you were approved for ZEP.

Then ... doc says you have to come back for further blood tests, which you do (I am guessing about last Monday), then that same week (last Friday) you phone docs office to find out "what's happening" and the nurse basically gives you the "don't call us, we'll call you" routine (rude - IMO) .

We still not know WHAT these tests were for, and how long they take to return, if they have returned to the doc, and if doc has sent them on to insurance (if this was required) before insurance is able to allow the ZEP to be released.

Your doc may have missed some tests (not likely), or, had to re-submit an application (for some reason, I would not know wy), or, insurance may have said they needed a "more current" particular blood test - (insurance can be sticklers for current labs), or, being that originally you and your doc may have been discussing harvoni and then the suggested approved treatment morphed into ZEP, then (now being ZEP) that itself may have required special further blood testing being called for (Rav testing perhaps), that had not otherwise been done or called for before ... I have no idea, but any of these things could make for some kind of delay.

There is no way to know what testing was done, or why, and whether the tests have returned back to the doc, whether he has forwarded them to insurance (if that was required), nor how long it takes for insurance to act once they receive the test results from the doc.

I suggest (like Tig did) to phone your doc office again, and aside from asking only "when?", ask about these tests - what were they?, have all these blood test results now returned back to the doc office?, have they sent the results on to insurance (if that is what was needing to be done), did your doc have to re-apply? Things like that.

Trying to find out "may" not make the process go any faster, but at least you might find out what is happening and why, perhaps explaining the further delay, and perhaps ensures that nothing has fallen between the cracks.

Sorry, it is frustrating I know. That is all you can do for now - is to try to find out explanations for it - it does not make the waiting any easier! C.

Tig · Admin

Keep on them with regular phone calls. Showing good interest during the process will often work well in your favor. Be a real pal, they like that! smile

In the meantime, take it easy as possible and keep your spirits up. You're getting there. Sometimes these things take more time than we realize. It'll happen, just keep believing!

Rick · Member

DAMM STILL NO MED'S FEEL LIKE CRAP !!! cry

-- Edited by Rick on Thursday 25th of May 2017 11:08:02 PM

Rick · Member

Ok tig56 got it ! It is really draining and about to get really hot here in Chi-Town ! I will be looking for a ride until I get my Licence back in a few months can't wait to be able to go places with the wife and kids !!! Good things are coming soon just gotta keep pushin !!! Take care Rick smile

Tig · Admin

If you're doing a lot of bicycle riding, exerting yourself and requiring or losing fluids more than average, you need to increase your intake accordingly. These medications dehydrate you and require the addition of extra fluids already. Doing something that dehydrates you further has to be considered. Not to will likely lead to increased sfx. Avoid that...

Time to make a deal with some fellow Uber or Lyft riders! There may be some ride sharing possibilities in your area??? Worth checking out!

Canuck · Guru

Hi Rick,

I wrote a reply earlier today, but I did something wrong and it just vanished! So will try to re-write it now.

Ah, I see now, why you chose to ride your bike to work 5 miles, it just seemes like a lot of extra energy to have to expend right now, especially with the load of stressors you are being dealt, sleep disturbances, and in general not feeling well. Good you will be getting bigger, faster wheels back again pretty soon. Try make the best of your bike rides then, leave some extra time so it can be a little bit "leisurely", try to make the cycling feel good for you rather than an exhausting physical ordeal. I still worry though, that a daily grind like that, a 10 mile return trip bike ride everyday!, on some days that you may not feel quite up to it, might be a bit much. Have a plan B and C - can you mix it up a bit? - maybe ask somebody(friend/family) for a ride once a week, maybe carpool with co-worker on another day, or do public transit system some days? Maybe I overfret, perhaps you are quite fit enough, and are quite well-practised and conditioned for cycling? I certainly couldn't do a 10 mile bike trip (every day!), maybe in a million years (if I worked up to it), and certainly it would have been absolutely out of the question when I was pre-treatment!, an impossibility, I was in NO shape for anything prior to treatment. I think would enjoy exercising more (now), if i could just figure out a way to get somebody to do all the hard parts for me. wink

The time of day dose HAS to be a personal decision for you, choose the best and most convenient time of day (for you) that you will have the least opportunity or circumstance to accidentally get delayed, or forget to take your pill (it can happen!) - that is the most important criteria - pick what feels like the safest time of day to you, that will guarantee you can take it at the same time each day. Set an alarm if necessary, some peope have some kind of phone ring reminder. Others packed one spare pill with them "just in case" they somehow inadvertently got separated from reaching their supply at home on time. Day, evening or night is not that critcal - except for working out your best time, according to your daily life schedule. If you fear "sides", some have opted to taking it after the work day is done, when at home for the afternoon/evening, in the thought that they may overnight sleep through anything they might detect feeling from the treatment. You may not get sides, you may not feel anything particularly negative, that has happened to some here too! I had to take my meds WITH meals - you do not - the VOX drug I had (added to my epclusa) required me to take my meds with a meal. Taking Zep or harvoni alone, you do not have to eat with it (just lots of water), so you have more time of day choices than I did. But, any drug - in general (where I have a choice to take it with food, or not) I lean to taking them with food.

Don't bank on sides, wiser instead, to start planning/setting up your "watering program", get it sussed/prepped ahead of time, as far as getting ready to pack portioned water with you, or whatever is required, to make sure you have the easiest ways to get that gal a day into you.

In your spare time (I know, I know!), sometime, you will have to do up a signature line - see the draft I suggested below, something like that, when you can get around to it.

BTW - did they say they would give you any of your older lab results yet?

Hope the new job is going OK. smile C.

Rick · Member

Thanks Canuck ! Yes I think it will be soon and I am so ready !!! Ya I lost my licence 5 years ago but will be driving in about 3 months That will be awesome ! I should hear from the doctor soon I hear that they send the meds from fedex . Hey let me ask you do you think I should take the pill before work or after work and then sleep ? I will take it the same time every day of course ! Thanks , Rick smile

Canuck · Guru

Hey Rick,

Just responding to your other post - so sorry about your delays, the waiting IS hard. Not to excuse this, but it "could be" he did need to do some "required" blood tests on you, first, before you can start consuming zep - he may have needed to do some special resistance testing first. Possible - but i don't know this for sure. And I don't know how long these kind of tests take.

I was driven to near madness waiting, it is VERY frustrating to hear things like that, "don't call us .... we calll you", unforgivable in my book.

Tinnitus is enough to qualify for "hell to endure", the rest of this waiting and process should (in all right) be sooo much faster, and far more humane.

Believe it or not (I could NOT sometimes) they ARE on your side, you will get there, they will come through.

Why are you cycling? BTW- sounds like too much to me - but that's me! I would probably enjoy excercise much more if i could just get someone else to do most of it for me.

You are close now, hang in there. It won't be long now - I know, we keep saying that - but it is true, and believe me, you will start feeling a tiny bit of relief when you get that first pill past your lips. C.

-- Edited by Canuck on Saturday 20th of May 2017 04:06:26 PM

Canuck · Guru

Hey Rick,

Just noticed your query, Zep versus Harvoni, over in another post, decided to answer here as this is where most of your history lives. Had to re-remind myself of some of your particular details by scrolling down.

BTW, you need to create a a sig. line sometime, it just helps make ongoing communcations a little bit easier. See Tigs "red link line" for "how to" create a sig line. Maybe something like .... "Male, 56 years old, Dx HCV Apr? 2017, GT1a, probably contracted ? (or long ago, etc), Fscore by "Fibrotest?" (I think) is F4 based on (fibrosis level 0.90 and necroinfllammation level 0.91), no abd. U/S info, no fibroscan done, no info for pre-treatment LFT's (ALT/AST/Bili) or other bloods tests available, pre-treatment VL not available " ....

What does your doc think of zep versus harvoni. There are quite a few other regimes that GT1a's have received, aside from harvoni and zep, such as epclusa which is quite "pan", and even epclusa plus vox coming out soon, and there are others as well.

Your doc "may" have a preference for you, just based on your particular parameters, and/or or his particular prior experience with treating GT1a's who are similar to you. Levels of cirrhoisis can have a bearing, as can other parameters, from kidney issues, to very high VL's, or known resistances.

I would be asking your doc, quite frankly, what HIS ideal drug preference is for you and why. First choice, second choice and why. If he has a preference and justification for harvoni over zep (or over any other regime) he can re-apply for "his" wanted choice(s).

Insurance does not always have the only influence on what you end up getting. We have seen others here, where their docs had to ask twice for what drugs they wanted (if there was a preference choice).

Saying that tho, yes, all the drug regimes we speak of here have similar high cure rates, so do not over-fret which drugs you get, go by what your doc thinks is best for you.

Have you been able to receive any more of your assessment lab works? Would be interested in knowing more of your blood labs (how out of wack any of them might be) and Fscore assessments (aside from the limited assessment info we have on you).

Did you ever say whether you did or did not have your hepA abd B immunity levels checked and whether you have or have not been immunized for everything the doc would want you to be immunized for?? Also, I would still ask him about doing abd. ultrasound and fibroscan of you have not had these. C.

Tig · Admin

90 in most beer coolers in South Texas! Of course I don't spend any time in those kind of places anymore! wink

JimmyK · Guru

Shoot, 90 is a cold front here. LOL

Tig · Admin

Hi Rick,

It has been very good weather here and is nearing 90 as well. I live in Southwest Florida, so hot weather is part of our DNA now! It's so hot there we have days that require MELT alerts. There literally are months in a row when you'll soak a shirt just walking from the house to the mailbox, 50 feet away. I grew up in Eastern Washington state and didn't know how hot HOT was til relocating to Florida! AC is required most of the year. I didn't even turn on the heat this past year. We have some Texans here on the forum that can tell you equally harrowing stories! We're leaving today to head back home. It was a nice visit, but time to get back to our own digs and take care of some business. Vacations are always the shortest periods of time, but fun when you can spend them with family and friends!

Enjoy the trip to Wally World. Keep your camera handy, you never know what you'll see biggrin

Rick · Member

Well Tig56 Hope you had a great time ! Wow it got so hot here almost 90 degres to hot for me ! Have a great day , Were heading out to walmart the wife , baby and me ! Take it easy ! Rick

Tig · Admin

The drugs will most definitely NOT put your face in the mud, lol! Treatment has never been easier or more effective. You'll fly through it!

I'm in NC visiting my two grandchildren and daughter. It's a beautiful day here, too. I'm not going to mow lawns, but babysit. I'll trade you.... I love them dearly, but a 2 1/2 yo and a 6 month baby has run ol Paw Paw down, ha, ha! 60 is not the new 40... biggrin

Have a great day!

Rick · Member

Ya guy's I'll just let the music do the talkin !!! I will tell Ya jamming keeps me going I have been feeling better but still taking naps never in my life have I been one to take naps but I will be 56 on June 4th so maybe it's ok here and there LOL!!! I am wondering how the med's will make me feel when I start to take them ? I hope they don't put my face in the mud I guess I will find out soon ! Man what a nice day here in Chicago maybe time to mow the lawn . Have a great day everyone !!!! Rick biggrin

Observer · Guru

Nice looking guitar gear Rick. My partner builds, repairs and refinishes musical cabinetry and I must say that orange amp and cab are in beautiful shape! The tolex is perfect , it looks brand new.... we had one in our workshop a few months ago that had been the victim of a broken hearted ex who took a sharpie to it.

Nice guitar too, soon you're going to have so much energy for jamming.

A

Tig · Admin

Okay, I vote Rick to be our musical director! We need a good title track, maybe the "Decompensated Dragon" or the "Dead Dragon Two Step"!! You play it, Canuck will sing it and I'll smile, lol!

Good luck, Rick! You'll do fine smile

Rick · Member

Thanks to all of you for the Ideas and all of the support wow you people are so dam awesome !!! Will let you know how it is going soon ok till then Keep rocking !!! RICK smile

beertastic · Member

Start Consuming about five cloves of garlic and some black pepper powder everyday and there will be marked improvement in your energy levels. Garlic works very well for me. I also add some tumeric powder and black pepper powder to green tea powder, shake well and empty mixture into my mouth then follow up with some water. Don't know whether I would still have enough energy to walk on my feet if I weren't taking these things I've mentioned. When I tell people (including my doctor) about my my health condition I don't think they even believe am very sick but deep down inside I know how much pain I have been enduring. Few hours walk every day should help you feel much better too. Don't give in that feeling of tiredness. I normally go for a walk or get myself busy with something as soon as tiredness begins to creep in. By so doing am distracting myself from thinking about how I feel inside. I hope this works for you too.

Canuck · Guru

Hey nice Rick!

Yay, you got one more hurdle jumped over, and out of the way (the cursory drug test).

New job!! Did you drop the two other ones?? I can relate to your fatigue - things will improve - mine used to be "profound", now it is not.

2 to 4 weeks, a new start for you, it's imminent, your treatment start date is just around the corner! Hang on. Try to treat and feed yourself as good as you can, start some early training and drink lots of good water. Try to get as much rest and sleep as you can - (I know, sometimes easier said than done, with demands/work/family).

Relief will be coming. smile C.

singsong · Veteran Member

I believe 1A is easiest to treat. They won't let you take any herbals such as Thislyn once you start Harvoni or something similar, but I will bet my life my saving grace for 27 years once I learned I had HCV was Thislyn. Pharmaceutical grade Milk Thistle from Germany. I took it every day for 27 years until I started Harvoni, April of last year. I waited until my 90 day all clear after I stopped Harvoni, and I've taken it every day since.

If you smoke, you occasionally drink or you live in Los Angeles or similar city with their crazy smog, it will be a huge help/support to your liver.

Tig · Admin

The A or B designation refers to the sub species/type of that particular genotype. Some are easier to treat, utilizing different drug protocols. With the new all oral pan genotypic drugs used today, the significance has become less important, but it is still a diagnostic requirement.

HCV Genotypes, Quasi-Species and Sub-Types

Pat · Newbie

What is the difference of 1a or 1b

Tig · Admin

Glad you got past the testing! Seems everyone is doing that nowadays. Almost a neccessity with all of the bizarre substances and the issues they can cause. i remember having to go through that every 1-2 months for security purposes and again while on different treatments. Got to be a pain, but it was all about the pain (Control)....

The fatigue can be crippling and makes for some long days. Be sure you keep your doctor well advised of it. Fatigue can be a very big factor when applying for disability. Are you still planning on that? Starting a new job is hard when you're dragging. Let me recommend a large cup of Cuban coffee. It's sure to perk you up! I'd stop after one though!

2-4 weeks? That'll go by quick. Be sure to keep in touch. Good luck, Brother!

Rick · Member

Passed the drug test just waiting for the med's now they 2-4 weeks . I am starting a new job feeling so dam tired so I will Keep pushing !!!

Rick · Member

Thank you my friend ! I am blessed !!! smile

Canuck · Guru

Sheesh, you got the cutest kids!!! But, man, just look at your wife!! No wonder. Such beauties. Great pics, but hard NOT to be able to take a good pic of them eh?! Lovely pics. Oh, ya, so as not to leave you out . .. ya, ya yer not so bad yerself! Credit where credit is due. Your lady and ladies are gorgeous! smile C.

Rick · Member

Wow great info Canuck !!! Thank you so much to all of you guys ! Ya everything will work out I am sure I just hope that trump won't mess up my medical coverage I think I am still in a good time frame so It should not affect my case . My wife and kids are awesome They are a cute bunch I am 56 wife is younger 32 and still wants a boy so I guess 56 is the new 30 !!! LOL

Thanks for everything , Rick smile

Canuck · Guru

Hey Rick,

I'm glad you forged through the paperwork and found your sub-type! So GT1a, (TN = treatment naive) never treated before, and with cirrhosis (just based on the limited testing you provided, FibroTest .90 putting you at an F4 level), an item not known is your viral load (VL) count.

There is an assortment of drug regime treatment choices for you - but as you said, and as I assume you and your have already discussed, he has probably already decided on Harvoni as being a good choice for you. Tig was saying you might expect 12 weeks of Harvoni, I would expect the same. Regimes can get tweeked sometimes, it used to be that an additonal drug would be added to a regime, that is happening less so now, or treatment time can sometimes be as short as 8 weeks, but only for certain people given specific conditons/considerations and with justification.

I would still ask for an abdominal ultrasound, and a fibro"scan", as well as being sure my immunization was checked off as OK by the doc.

I relate to your hardships, symptoms, and bad luck affecting your health and livelyhood. It was SO good you insisted on getting tested for HCV, this was an important decision you made, and was the best possible thing to do for yourself for your healthy future. I wish I knew what to advise about your funding situ, but I know you will figure it out. Not fair, way too many conspiring events working against you right now. A lot of pressures. Wish it was easier, I can imagine though that you ARE going to solve all of these things. The HCV cure may the easiest one!

Oh, you must take such great pride and solace in that family of yours - what beauties they are! smile C.

Rick · Member

Thanks Observer for the welcome ! Trying to wrap my brain around all this stuff getting ready to battle this monster ! Talk to ya soon Ok Rick

Rick · Member

Thank you for all the info Canuck ! ,

I went through the paper work that I have looks like I am type 1A and had a Firbro test done at the Mayo Clinic it was 0.90 still gathering info I will see the doctor in about 3-4 weeks I think for the meds . I was told by them I would be approved hope that holds true ! I have a dilemma at my jobs I am a Exec. Chef and also a Satellite Tech. Both jobs are tough been doing them for years , But man lately it has been very hard to keep up the doctor kept saying exercise watch your sugar Ect. now I know what it really is I am having a problem with my balance and I keep forgetting things plus the blurry vision it is getting hard to hide not to mention headaches and moving like a snail ! I was off for 5 months because of a torn rotator cuff that happened at work it is messed up still and will probably never heal right . I will have money coming in from a settlement soon and was thinking to file for disability but from what I hear it is a long road to travel . The jobs I am doing are really an Ass kicker Hot , super fast pace and you need to be on your game I keep forgetting what go's into the dish and need to check the menu it really slows me down so I am really not sure when I will get the settlement but I do think I will file when I do receive it . Bye the way the little girl in the pic is Alyssa my middle girl I have 3 they are awesome Filippino/Germans Abbigail,Alyssa and Jordana . Thanks Rick smile

Canuck · Guru

Hi Rick,

Welcome here from me too. Sorry for your troubles. Glad you getting along in the process to get to treatment Good you are getting the formality of the drug test out of the way tomorrow. Another thing checked off your list. I hope approval does happen as fast as within 3 weeks, so you can get started. Fatigue, sleep disturbances, ringing in the ears (tinnitus), many with HCV have known these and how you might be feeling. Getting better (feeling better) and how soon, no one can answer, everyone is different, some people start immediately feeling some better, some slowly improve over time. Tig is right about how effective the treatments are nowadays, you will get rid of this HCV and can expect to feel better for it.

It does make some difference whether you are a GT1A or GT1B, knowing whether your "sub-type" is A or B, has a bearing on how they may tweek your drug treatment. You could ask tomorrow, what your sub-type is, when you are there for your test. Good you have been told your Fscore is F4 (your level of fibrosis/cirrhosis) - what tests did you have to help determine that F4, bloods, AND a "fibroscan" as well?

I hope you have had an abdominal ultrasound (as Tig mentioned), if not you should ask for one, same for the fibroscan, if you have not had one you could ask for one.

As Tig mentioned be sure to ask for your "immunity levels" for hepA and hepB to be tested so you are assured you have at least the minimum immunity levels for those. Your doc should also guide you about influenza and/or pneumococcal shots as Tig said.

SVR = sustained virological response ... what is going to happen to you!! - the intended affect ... (of taking an anti-viral drug) "a profound" (good) response to taking an anti-viral can start happening quite quickly with these new DAA's, you can decimate your viral load (VL) very quickly, but you must continue taking the whole course of your anti-viral drugs (even if your VL goes brilliantly "undetectable" early in treatment). , as you must "sustain" the good viral response. Thus we have "und" parties along the way, the have another big celebration at SVR+12 weeks!, another VL at 24 weeks post-tretament will get you another SVR+24week party!

If you can't sleep, just rest. What a little darlin' that gal in your photo is! smile C.

-- Edited by Canuck on Thursday 4th of May 2017 04:05:39 AM

Observer · Guru

Hi Rick, welcome to the forum.

Sorry to hear of your diagnosis, but it's really good that you got yourself tested.

Good luck with getting treatment started soon.

I was sick with HCV for 32 years, I had/have cirrhosis and I have been SVR (sustained viral response) for just over a year and the difference is incredible.

Wwith so many of us having had this damned virus silently damaging our various systems for so many years, there is no one size/timeline fits all, but....I felt somewhat better from the worst HCV symptoms during treatment (except I had to include ribivirin which made my platlets drop) and have continued to heal and feel more and more energy as time passes.

Glad you found the forum.

A

Rick · Member

What is SVR ?

Rick · Member

Hey Tig56 , I am of course awake again it sucks not sleeping more than 4 hours at a time and my ears are always ringing . Can I ask you I think I will take Harvroni how long will it take to start feeling better ? I should start taking it in about 3 weeks I am taking my drug test in the morning so they can apply for the meds .

Rick · Member

Thanks jimmy k , It is nice to find this form to ask some questions !

JimmyK · Guru

Greetings and Welcome.

Rick · Member

Thanks Tig56 !!! I will be in touch going to look for a lawyer this week ! Again thanks , Rick

Tig · Admin

Hey Rick,

The A or B thing is something to ask about. With the new treatments it means differences in drugs and/or length of treatment. With F/A scores that elevated, you'll need at least 12 weeks of these wonder drugs, but they work!

Here's a website that has some tools you can use to help determine your eligibility for SSDI. No endorsement of the provider is intended. Just useful information... SSDI

Rick · Member

Thanks for the info Tig56,

I am not sure A OR B ? I am sure I will find out soon I know I am F4 Fibrosis 0.90 - and 0.91 Necroinflammat . So I talked to a few lawyers most said file on my own at first then if I get deined to give them a call . I think it is better to just start out with a lawyer for the git go ! I am working now but it is not going so well always tired Ect. I think one of the lawyers said 25% of the back pay is his fee that's find if it makes it faster .

Tig · Admin

Hi Rick,

Welcome to the forum. Sorry you got the news, but it has never been easier to cure, especially genotype 1. Do you know if it's 1a or 1b? How about any test results? Liver function tests, like the ALT and AST. They will want you to have a few tests done along the way. A liver ultrasound, a fibrosis determination needs to be made. You should be vaccinated for Hep A and B. It's good to be current on your flu and pneumonia shots, too. Your doctor will handle most of it, but you should be aware of it as well. If you have some questions, please ask. You can find a lot of information by reviewing the Home page sections. Just be sure to concentrate on current info >2014.

Treatment is easy, getting approved has been the challenge for some. What have you found out thus far? Fill us in when you can.

I filed for SSDI back in 2002, took 3 appeals and a court appearance to get it. I used an attorney from day 1, other than the frustration and wait time, it was no big deal. The attorney does everything. There are non profits out there now that may represent you for nothing.

Don't worry about this, it's manageable and wayyyyy easier than it used to be.

Rick · Member

Has anyone filed for SS Disibilty ?

Rick · Member

I have been feeling tired for years , My doctor kept telling me watch your sugar and lose weight and you will feel better . I kept seeing the Harvoni Tv ad and told my doctor I wanted the test and sure enough I have it I think for a long time I am 56 years old in 3 weeks married with 3 little girls 2 , 7 , 11 years old

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