Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: drummerman on August 11, 2015, 03:41:38 pm
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Just got a call from doc's nurse.
Blood results in... Week 5 UND!
Hope it sticks!
dm
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Hooray! Glad to read the great news!
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Awe-SOME!!!
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Excellent drummerman! Sounds like you are on your way to being cured! :)
kim
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Thanks Kim and Phili!
You guys have been quite encouraging ... I appreciate it!
dm
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Thanks Gnat!
Looks like you are well on your way too!
dm
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Me too Me too Me too, week 5 for me too, undetectable. I too hope it sticks. Best of luck to you
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Great news, April! You're exactly one week ahead of me -- I'll take my last pill on Sept. 30. It feels like drummerman, you, and I are teammates pulling for one another.
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Great news April!!!
Love to hear this!
dm
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Congratulations April! :)
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I am going bat crap crazy waiting for Monday afternoon to get here for my 4 week lab results. Bouncing off the walls with anticipation. Started 7-16-15. Happy for all of You. Smooth sailing to You.
P.S. as soon as I get labs I'm going to sit down & fill in info. on My signature line. Hopefully I'll be able to concentrate long enough to get it right & finish it!
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My last day is Sept. 28 and at 4.5 weeks into treatment, I'm undetectable too!
I was stunned (in a good way) and elated!!! Congrats Drummerman, April and everyone! Slats1056, we're pulling for you too!
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Know how you feel Slats. Fortunately I get my lab results super quick. Took em 2 business days
Way to go Bree!
dm
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Yippee ki yaaa everybody. Is just Me, or does the time speed continuum slow to a crawl when You have to wait for news???????
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It's not just you, even if my experience this time was unusual. I didn't expect to hear my August 5 results until my August 10 appointment, but on August 6 I received an email that something had posted to my patient portal. My heart was beating as fast as a hummingbird's when I logged in to the portal. It was the viral load. I still had to wait until the 10th for the ALT, AST, and other results (which have still never posted -- mysterious are the ways of our medical system's patient portal), but knowing the VL ahead-of-time helped a lot.
I've got my fingers crossed for you and hope Monday will be a day of celebration.
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yep, they can come really quick.
I was trying to log on to my portal to check and I had to ask a bunch of security questions based on public records. They kept asking me boat questions. Well I have two, so I never knew which one they were referring to and eventually failed the after about 25 questions... now they want me to send them a photocopy of my d.l.
Think I'll just keep letting doc mail them to me.
dm
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OK new to this forum. I am week 6 on Harvoni and a real wuss for awaiting results. In fact, I have yet to have blood drawn. I see a lot of folks like myself who are treatment naive, 40 or so years infected and bearing the weighty tag of F4 cirrhosis. I am thrilled to hear all of the good news and realize that my own percentages are greatly in favor of cure. Strange though. When you have lived so long with the time bomb ticking, and suddenly there is this amazing drug that you never really counted on ever happening...is suddenly, not only available, but also, in your hands. There is still that fear that it will not work on me...crazy. Thanks all for your posts and I am very happy for those of you that are getting results. The best of luck to all who are hoping. Peace…
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Hey Beto, still a relative newbie myself. How long is Your treatment? Just Harvoni? just started week 5 a couple of days ago myself. I know what You mean about the sudden changes coming so fast. Although the chance is slim , it is still there. Don't dwell on it, think positive. Had a bad morning Myself, I think My little Harvoni buddies were having an epic battle with the Hep army. Apparently they won the battle & feel much better this afternoon. To help with Your fears check out the rest of the forums, This place is HUGE, and is full of helpful tips as well as so much info. it will boggle Your mind. I'm still exploring it. After about 3 months of poking , prodding , tests, labs, and more... it only took a week from applying to having the Harvoni in My hand!!!!! I apparently am one lucky S.O.B. Great G.I. and staff. I wish it were as easy for everyone. I was expecting months of applying, reapplying, and denials. I had already started selling stuff to get cash for the prescription , when to My amazement Drs. office said come & get it!!!!!!!! I was so happy that I took some of the cash I had raised and bought all of the ladies on the staff lunch, They were so happy that someone recognized the hard work they were doing!!! They call and send cards to me to check up on Me, They don't know Me from Adam. The level of human compassion will blow Your freaking mind sometimes!
Well enough of the log winded speech. SVR to ALL & to ALL a GOOD LIFE!
We are winning the battles & we WILL WIN the WAR!!!!!
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beto, welcome to the club-within-the-club (those of us who will finish Tx around the end of September, give or take a week or so). Yeah, I had accepted that liver cancer would finish me off if something else didn't do so first, but instead now I'm trying to figure out what to do with so much more energy than I can remember ever having.
Tommy, mind if I slip "SVR to ALL & to ALL a GOOD LIFE!" into my holiday letter? Terrific line -- when you type in your new signature, maybe it can be your Personal Text.
drummerman, it took 25 days from the postmark date for the USPS to deliver my snail-mailed mid-May lab results! I'm still waiting for a set of 2014 lab results to arrive. Glad the USPS is better in your area. I may opt for redundancy: patient portal, email (which my PCP's lab, but not the Hep doc's lab, will do), AND snail mail, so that I might actually get one of the three.
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gnatcatcher, feel free! It came to Me in one of those brief moments of clarity while I was signing off post. Almost didn't realize I was keying it. Maybe My brain snapses are beginning to work again! Pun intended on the snapses. Good idea on the personal text, do You mind if I use it! LMFAO!!!! Maybe I can remember to, probably ought to write myself a note to do so. It does sound most excellent, I am freaking awesome, OOPS! Too much? Oh well, I feel so much better this afternoon I just couldn't help myself.
BTW Guys, is there a basic outline for the signature line info. I only want to use pertinent info., but as You can see from above I get a little carried away at times as gnatcatcher can probably attest to. Don't want to apply any BS to confuse people.
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… It does sound most excellent, I am freaking awesome, OOPS! Too much? Oh well, I feel so much better this afternoon I just couldn't help myself....
BTW Guys, is there a basic outline for the signature line info....
Freaking awesome indeed! Glad you're feeling so much better -- you've been having rough side effects. I don't know where you manage to stash all that H2O you've been guzzling; the 1 ounce per 2 pounds of body weight formula is all I can handle per day.
As to the sig, there's no basic outline, but there is a total character limit, so you won't be able to get too carried away. I copied-and-pasted some other sigs into a file to help me figure out how to do something similar.
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Took me a month of daily phone calls with the biggest online pharmacy in the u.s.
Looked at my notes from 2008 and it was the same run around... I don't even remember that battle. Just blocked it out. I want to let them and my insurance company have it when this is all over, but am hesitant cause I might them on down the road. They make it as difficult for some as possible... I'm convinced to wear you down so you will just give up and go away. Sad.
Welcome Beato!
Gnat, cant believe it took so long to get your results.. you definitely need to get the portal thing going...
My docs office is only 30 miles away , so I get results a day after he mails them. He must get them electronically.
Slats - did your doc have a voucher?? I read somewhere that there were only about 2000 of those given out. Lucky you!
My insurance finally came through , but it was a battle. I didn't want to treat this early cause I go back to teach monday and am concerned about teaching with a pounding heart (at times).. But I went ahead, cause I don't know, it could get worse as far as approval. There are so many suffering with HCV in the US that the shite is going to hit the fan when docs start doing mandatory HCV testing , which some are already doing. Figured I better jump on it now.
dm
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It's great that we are on a similar timeline continuum with treatment and can cheer each other on!
Regarding anxiousness around testing... yep, for me too. I had decided to live my best life with this disease until I heard from my internist in January about Harvoni. It was a six month journey of tests, denials, and finally getting it (through Support Path). I was determined to have this medicine. I didn't listen to anyone who said you can't get it. I feel like it is my time and I am ready in every way to be cured.
I couldn't believe how invested I became in the results of getting it and the blood work afterward. I tried my best to stay optimistic (every reason to be) yet guard about too much over emotional investment in case of a disappointment (those mind games I can play are quite interesting)... As I waited... seemed like forever... for the results from the 4.5 week blood work... I was so scared (tried not to be)... how can it work for me that quickly with a 13+M viral load. I use the patient portal as the results are posted right away even though it takes about 5-6 days for the viral load. (liver panel quicker but I consider the viral load the real test.)
Just wanted to acknowledge that we are all human and now have great hopes of being cured... I think it's only natural to be anxious about waiting the rather long time to receive the blood work results. I couldn't believe my eyes when I saw NON DETECTED. I call it a really great start!
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Bree,
We started on the same day! So see you at EOT!
dm
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First things first. GO TEAM HARVONI!
Bree Hit the nail on the head & buried it on the first hit with Your post! I believe You covered all of My thoughts & concerns!
drummerman Yes, that is why I consider Myself a lucky SOB. After all these years of BS & bad luck, I feel like I hit the lottery! I have several more bills to pay off, but I have covered My deductible, out of pocket expenses for the year, and wiped out My HSA savings account in three short months.Was told I have to pay no more for the rest of the Year. Hope that is true, let's go with that. Jumped in with both feet expecting an epic battle with Goliath and knocked him out with the first punch, However I do believe that the credit goes to everyone in My corner though(i.e. My gastro & his staff are the best, they did all the work & all I did was worry for no reason!)
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gnatcatcher OOPS, so much enthusiasm today I went right by Your last post. Maybe it was the water. At 6 foot 5 and 255 lbs. I can store alot, but peeing like crazy!!!! Have to duck behind a bush in an emergency & hope no ones is looking. Make that a big tree!!!!LOL. Thanx for the happy thoughts and the info. I hope this isn't to weird for You. But I feel this strange spiritual/soul mate/techno bond with You, Don't want You to think I am doing anything weird or inappropriate by any means! If so just tell me to shut up, it won't hurt My feelings. It's just that posts & thought processes seem to be eerily parallel!
As for the signature line info. thanx. I have been looking at some since feeling better & actually comprehending what they say.for example Lynn K, that is Wonder Woman incarnate. I can't believe that she has been through so much and yet is so extremely modest about it. She is awesome in My book.
Thanx again, I feel kind of guilty that My path has been so easy. Alot of people that deserve the good luck that I have had are getting screwed around. Again, not trying to be weird or anything!
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OOPS again. That is supposed to be 6 foot 3!
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yeah, you hit the lotto slats! way to go.
I had a lady at the first online pharmacy (which my insurance company would not let me use ((bsbs)). She said she was a nurse advocate and fought for me to get approval and then fought with the required online pharmacy even AFTER they made me leave her pharmacy. Super cool. She wants me to call her at EOT and let her know how I did. She was a very feisty nurse.
dm
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Amazing how quickly you all respond. Thank you all for the pump of positivity. Years of crazy hep-c symptoms, the just not feeling right and all that goes with it tends to become ones ordinary. So the side effects from harvoni are almost welcome. To me it means the drug is working. I know that die off toxins have to be huge given how fast these meds work. However, I get this dizziness thing in the mid to late morning on half the days. I travel and lecture and basically am in situations where I am doing most of the talking…sometimes I feel like I might keel over. Anyway I am a 24 month case, I guess because my liver sucks. So I can’t be part of the Sept club (unless you’ll have me anyway :)). And yes I have to pee all the time whether I am drinking enough water or not. I do have these moments where I have a lot of energy and I work out without difficulty. Again, I have been so used to pushing myself for so long that it the few side effects are just...side effects.
Congrats Bree how wonderful. I was rejected 4 times by my insurance and of course in that same time period my darn liver scan results popped up…it just made me madder and more determined. I sent out a letter and copied everyone at the insurance and pharmacy companies. I think it worked…it was a strong letter.
Hep-C does cause cognitive issues and I have heard that clearer thinking and better memory have returned to those that were cured. The infamous “brain fog”…right.
Same thing with me Drummerman. Walgeens (hep-c department) staff went to fight for me and were so nice and supportive. They did not even get the business in the end (harvoni is big business). My insurer has a sister phamacy and the forced it through them.
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Beto, 24 weeks or 24 months? I'm a 24 weeker on Viekira Pak and next week sees me heading into my final month. It's a bit of a slog some days - the constant requirement of eating at the same-ish times every day, always having your meds with you, remembering to take them no matter what else is going on around you. I've taken them in the movies with a muesli bar, at a performance by the Aust Chamber Orchestra with a bickie, on the road, at conferences, at dinner parties, at gigs ... Everywhere!
Here's a blog post I wrote about the organisational issues 4 months ago,
http://blogs.hepmag.com/gracecampbell/2015/04/tips_for_new_players.html
Good luck!
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Hey Philly,
I took mine in a stand still traffic jam, with chocolate chip cookies and had to let ice melt in my mouth to wash it all down. Not fun. ::)
dm
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I took mine at the fairgrounds between rides with my grand-daughter this week with a pronto pup. (Not my normal dinner;) I learned the hard way to always have one with me as I was out at dinner one night and didn't realize I would be out later than my 9 p.m. dose time. I was 40 minutes past time but decided not to make it a crises just to plan better.
When you think about it, it's amazing we are even able to do all these things.
And, Beto, yes please be one of us!!! I know what you mean when you talk about not feeling right being the norm. Hopefully for all of us, we'll have plenty of days going forward where we all feel terrific!
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Philadelphia. Yes of course, I meant 24 weeks. Also, I am finding out that there is a food connection with respect to (I believe) low blood sugar. Funny because I am hungry all the time, but staying around the same weight if not losing lbs. I read the link you sent and I have seen other posts and information that have to do with sudden drops in blood glucose levels with these meds. Regardless I have a great apatite and that can only be a good thing.
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The way I look at it, we are all on the same team. 8,12,24 weeks. Harvoni, S & O, Viekira & Riba. Rooting for each other helps us and the one we are rooting for. Smells like team spirit. So I guess that makes You are one of us now Beto! My 12 weeks ends first part of October. Yea, I still get the brain frogs a lot , My damn brain hopping around all over the place. It's mighty hard to concentrate on the task at hand when all muddled up.
Drummerman & Beto Don't know why I hit the lottery so easy, a little guilt trip on My part I guess. But, praise the Lord and pass the ammunition. To quote Lynn K, Damn the torpedoes and full speed ahead. Human Kindness can sneak up & surprise You sometimes when least expected.
Philadelphia Am I correctly reading that You are in Australia?
All I want for Christmas is My SVR, Oh well ,I guess it will have to wait until New Years!!!!!!!
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Wow, I go off to a social event and, bam, 13 new posts to this thread alone! beto, of course you're in this club -- anyone who can put up with the rest of us is IN, no questions asked!
I take the pill at 6 a.m. because, with my crazy schedule, it's the only time I can guarantee every day, and the CNP/DNP stressed that I had to store the pills in the original bottle. (No way was I going to carry around a lot of $1,125 pills, even if I paid a lot less.) When I started on July 9, that still let me get to a nature spot for photography during the "golden hour." But of course sunrise has been getting later and later, so I'm looking forward to October 1 when the alarm won't ring at 5:55.
On the pee theme: we get quarterly water and sewer bills, and the sewer co. gives us a "summer sprinkling discount" if our summer usage is higher than our winter usage. They figure we're using the extra water on our foliage and therefore not sending it through the sewer system. Little do they know! If I took the Harvoni this November - January as originally planned (before the Fibroscan came back F4), spouse and I would have missed out on next summer's discount.
As for the spiritual thing, because my Hep C came via transfusions, I feel a deep connection to those who sold their blood to get their next fix. Some of those whose blood is in me (perhaps even the very likable kid who had the desk next to mine in sixth grade) died of drug overdoses decades ago, just because they tried something I was too risk-averse to try. In a way, I'm living life for them, as well as for myself. Given that a certain Jewish carpenter saw himself in those who were reviled, the transfusions were actually a sort of Eucharist. Heterodox, I know. But it gave me equanimity during the years when the only available Hep C treatments were likely to harm me.
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I sure am Slats. It's winter over here.
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Boy , winter can't get here fast enough. It's been 100 degrees plus in the shade this past week. Can't seem to hack the sun & heat on the meds like when I was young & dumb. But then again, being young & dumb got Me here didn't it? Kind of wished I waited until it cooled off a little to start treatment. But hind sight is 20/20 and I have waited long enough. The heat really makes the sides tough. Just one question...what the hell is a bickie???????LOL. Here is wishing You SVR and hoping all is well down under. BTW , kangaroos and koalas and wombats... OH MY!!!!!! couldn't resist, sorry. I'm having one hell of good day, been jacking with everybody, CARPE DIEM TEAM
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Congratulations drummerman!! So happy that you are doing so well. All others I am also undetected at week 4 and moving towards week 8 soon. Fingers crossed.
Yes like all of you peeing buckets worth regardless of how much or little water I drink and yes dosing the meds in the oddest of places. Glad to see that we are all on the same train makes todays sudden nausea (after not seeing that SE for weeks) that much more tolerable.
Great to have such a good bunch along for the ride and yes I am a September 21 finish line of 12 week Vikeira pal as well.
Wishing us all fantastic sustained results.
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Quick question Fellow Wild Bunch, Been having an excellent time of the last three days, sleeping 4-5 hours a nite, mellow sides with the exception of a couple of hours this morning( 4:30 to about 8:30 AM ) Has anyone had what I would call Liver Quivers since starting Meds. Feels like a muscle tick or spasm, no pain. It startles Me more than anything, had it once before the day after liver biopsy years ago but not since.
One other odd thing happened today. Going through what I presumed was junk mail from this week and came across a packet from Gilead that informed Me I was ready to get started along with copay coupon post date JULY 21 & AUGUST 7.I started treatment JULY 16.
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BK congratulations on the good news. wish I could go out & water the lawn but somehow I don't think the neighbors would appreciate it. Damn, should have moved farther out! Waiting for Monday for My 4 week lab results. It's killing me man, it's killing me!
SVR FOR THE MASSES!!!!
Man spell check is a pain in the butt, apparently my fingers no longer comply with what my mind is telling them to do so it's worth it so I don't look like a big dummy. Don't need any help with that!!!!!LOL
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One other odd thing happened today. Going through what I presumed was junk mail from this week and came across a packet from Gilead that informed Me I was ready to get started along with copay coupon post date JULY 21 & AUGUST 7.I started treatment JULY 16.
I also received a Harvoni packet early this week from Gilead informing me I was ready to get started. I was denied Harvoni 3mths ago. I thought it was kind of odd also. I haven't received or heard anything further so don't know what that's all about. My denial letter says my liver has to fry to F3 before I'm ready!!
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Slats, a bickie is an abbreviation of a biscuit which is what you call a cookie. Australians like to abbreviate things. Hence we have brekkie every morning, then at smoko enjoy a bickie and a cuppa, and for dinner have a barbie with a few snags while drinking a tinnie with our mates Johnno, Davo, Jacko and Robbo.
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Morning Harvoni hellions and Hepper renegades!
Badbrad, sorry to hear that, don't stop now keep trying & contact Gilead! I have faith that Your perseverance will prevail! Re-post Your denial experience & see if Your can get any updated info. to help. Dude I feel bad for all because I hit the lottery on the first try!
UPDATE! Let me tell You the last four days haves been so good with the exception of yesterday morning, I had an epiphany ! There is a light at the end of the tunnel and for once it's not another train coming at Me!!!!! Does anyone know if SVR has a golden glow that comes along with it that could be that light? I hope so !
Came down off the Harvoni High about midnight last nite! Slept 6 straight hours & swear that I never moved ! here is hoping the sides are diminishing. Man this is like Sunshine , rainbows , lollipops, UNICORNS farting fairy dust. i.e. unbelievable.
Work up at pill time, almost ate the desiccant cap I forgot to take out of the bottle in the dark! Sent the Harvonis out on another search & destroy mission with a pint of h20 with a second one shortly there after. Trying to get ahead of the hydration curve & help alleviate or lessen those nasty ass headaches I get.
As usual I talk to much so I think I'll do some reading while I can concentrate. man only two spell check errors, unbelievable.
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Philadelphia I can relate being from Texas. We hope ya'll can mosey on down heah fo A nice ole BBQ with all the fixins ifn they ain't to many chores to get behind. LOL!!
Thats great, one of these days when my oil well comes in I can come see Your country. Looks alot like Texas. Big smile & wink. emojis don't seem ta want to work. There ain't no way in hell This one is gonna get spell checked!!!! LMFAO!
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BTW gnatcatcher thanx for the idea, added the personal text last nite. It's amazing how the brain frogs have been gone lately. Thanx again.
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I've actually spent a little bit of time in the Lone Star State. I've only been to Austin and San Antonio but I loved them both. And I've watched all 5 seasons of Friday Night Lights ;)
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In fact there weren't many places I didn't like when travelled over there. I hVe lots of favourites: BBQ in Memphis, live blues in Clarksdale MS, absolutely everything in NOLA, the craziness of NYC, the amazing architecture in Chicago, the beauty of upstate NY, the sunshine in San Francisco, the beautiful homes in Natchez, the New Jerseyness of NJ, the spectacle of Washington.
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That is great , but don't get Me started on BBQ. So many different schools of thought & personal preference it will actually start a fight between a couple of guys over how to do it the correct way! i.e.what kind of meat, which wood to use, does charcoal count, using propane, sauces & rubs, what goes in them, when to use them.... I could keep going, but You get the idea.Then throw alcohol in the mix & You have a brawl in Your hands. Then You sit down & eat & drink more . Now that I am clean & sober, I guess maybe it is a form of bonding???? LOL. I live on the Gulf Coast and have a small place out west on the upper edge of the Sonoran Desert. Looks a lot like parts of Your country.
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Slats thanks for the thumbs up. As for your liver twinges they were there my first two weeks. The second day they were constant and scared the bejeesus out of me. Seems the little armies are going out at it but it goes away by week 2-3. Yep things the docs don't tell you or even know about but thanks the forum we can share the experience.
Last night and this morning feeling crappy again. It is disappointing for I had nearly 2 week run of absolutely normal to high energy. But I'm just gonna ride it out and remind myself this too shall pass.
Onwards my fellows!!
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. . . Australians like to abbreviate things. Hence we have brekkie every morning, then at smoko enjoy a bickie and a cuppa, and for dinner have a barbie with a few snags while drinking a tinnie with our mates Johnno, Davo, Jacko and Robbo.
Are you Philly then (as we say over here)? Or would that be Phillo (if I can say it without thinking of phyllo dough and hankering for some baklava)?
BTW, the Australian sudoku site http://www.sudoku.com.au/archive.aspx is my fav. The easy, medium, and hard are great brain warm-ups (and distractions from side effects). The tough, on the other hand, is so far above my ability that it puts me into a meditative state -- the perfect time to take a blood pressure reading!
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bkmusic The forums are awesome. Hate it Your are feeling bad, I can really relate. First 4 weeks I had hell! hoping sides are diminishing! I am just happy for the sleep I have gotten the last four days. Two weeks would be like a vacation! Still look like something the cat drug in ( not that I give a big fat rats a__! LOL ) but feeling much better. Sucks that I only have two thumbs to put up for You guys, although lately it feels more like ten thumbs. Seem to be having a minor issue with manual dexterity lately.
gnatcatcher I believe the correct term I was trying to get at was kindred spirit. Hope I didn't weird You out with My rant! Not at all used to this feeling well crap. BTW tried to work out My h2o intake. it comes out to about an ounce per pound. When I add other fluid intake maybe one & a half. Man if I could only hook up to a sprinkler I could water the whole yard & the trees.LMFAO.
HEALTH, HAPPINESS, AND SVR IS IN OUR SIGHTS PEOPLE!!!!!!!
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Well, as my real name is Jane (Philadelphia is my horse's name), I get both types of slang. As my name is one syllable, it is lengthened. It's the way it works, don't ask me why. My mum and many of my friends calls me Janie, my brother calls me Jane-o.
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HEALTH, HAPPINESS, AND SVR IS IN OUR SIGHTS PEOPLE!!!!!!!
YESSSSSSSSS! I'm rooting for drummerman, Philadelphia's Jane-o from Down Under, KimInTheForest, april, Bree, beto, bkmusic, badbradley, and of course Tommy whose big day is tomorrow and who uplifts us all with that great personal text line.
P.S. Tommy, I probably weirded you out, along with everyone else. Amazing what a person can do with a metaphor.
P.P.S. "gnatcatcher" is also a metaphor: the avatar is a photo I took of a Blue-Gray Gnatcatcher, a really tiny bird that catches and eats lots of gnats. Not knowing how to visualize all those pesky Hep C critters that make up a viral load, I picture them as gnats and am glad they're getting eaten (or whatever the Harvoni is doing to them).
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Bad Bradley, I hope you see this. I was unclear on your current status.
Were you denied from your insurance or Gilead Support Path or both?
Are you being treated?
It is possible if you were denied by your insurance and if your doctor's office (or you) applied to Support Path and were sent an approval letter, that perhaps they are approving you? I would call ASAP.
I was lucky when I was accepted by Support Path, the girl called me (a very proactive and helpful girl who made this happen for me). I called her back, she sent the script to my doctor, I chased him down and got that signed and faxed back to the pharmacy (short version of how it happened). It took hours on the phone but I was happy to do it. I got the letter weeks later after I had started Harvoni. They did put the dates that I am approved for on the letter.
I hope everything is going well for you!
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Aloha Yall!
Since folks are saying where they are from, I live in Hawaii. I was born in Nashville, grew up in the south (hence the Yall) and have lived in Hawaii for decades.
It's so neat that we can be a support group for each other from around the world!
I'm feeling good right now... I have some symptoms but I feel like the virus is gone. Fingers crossed I'm right. I feel...well... happy!
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Hi Bree, I was denied Harvoni from Express Scripts. (Anthem BCBS). I was approved for 12wks Viekira Pak W/Riba. I failed a 12wk course of Sovaldi/Olysio. Because of cross resistance with the Protease inhibitors in each treatment regimen, Viekira Pak is NOT RECOMMENDED for retreatment by AASLD Guidelines. I am registered with My Support Path because I received a call one morning back in April from Express Scripts stating that I had been approved. They did not say what medication was being approved. It turned out it was for Viekira Pak.
I received the denial letter from Express Scripts mid May. I was also very recently denied a Fibrospect test. The denial for Harvoni stated that I needed to show F3-F4 fibrosis or other severe manifestations. Well in order to present a fibrosis level I need a test approved. So they are denying even a test for fibrosis stating that it is considered experimental/investigational and not medically necessary.
My Treatment team is trying to convince me that after 1 year the resistance mutations will revert back to "wild type" and it will then be O.K. to re-treat with a protease inhibitor regimen. I am not convinced even 1% !!! Everything I've read about RAV/TEV persistence, reselection, cross-resistance, etc. etc. says that is not a wise regimen to retreat with after an unsuccessful protease inhibitor based therapy.
So I have an appt. in a couple mths. with my hepatologist - I suppose to listen to him tell me all about how O.K. it is to re treat with V=Pak. They do not seem much interested in the whole appeal process. Very frustrating but I will find a way eventually. Brad
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badbradley, it stinks that Express Scripts made a deal for Viekira Pak, CVS Caremark made one for Harvoni, and to heck with the patient who really needs the other product. The catch-22 over testing is even smellier. Will Anthem BCBS pay for a liver biopsy (still the gold standard and clearly not experimental) or Fibroscan or Fibrosure? At least Anthem sounds willing to consider any severe extra hepatic manifestations you may have in lieu of F3-F4. You may be able to find one or more EHMs that fit you on this list: http://hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
Yes, you will find a way. Sorry you have to waste so much time and energy to do so.
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Hi Brad, Thank you for letting us know your situation. What a cluster!
I can't see how they can deny further testing if you were deemed to need and were treated with S/O in the first place. I can appreciate the maze you are navigating.
I feel like you will work it out in time and there are new drugs and therapies on the horizon. We're in your corner! Bree
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Hello all You Hopeful Heppers out there!!! Well it's been a fabulous four day run. Sides started creeping back in. Apparently a new batch of HEP tadpoles hatched a bumper batch of brain frogs. Headache back with a vengeance even with massive amount of hydration. Oh yea, and it's Monday!!! Supposed to be a good day, Go in for results of four week labs. Better write Myself a note to ask questions. Fatigued as soon as I woke up. Two to three qts. h2o before noon! Skin irritation in random places, no rashes. Light nausea. Almost wish I had My old sides, at least I was used to them & managed them. Anybody have complete change of sides during treatment? First four weeks had Tinnitus(bad in left ear),severe joint pain ( especially hands,neck, lower back, & hips), major sleep issues. Now everything seems to be changing up. Having trouble concentrating all of a sudden. different from normal brain fog! Hopefully My labs will make things a little better.
Four days into fifth week. Fighting the good fight against the darkside with My little Harvoni soldiers. Later Guys.
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slats...could be viral die off. You may have a bit of a healing crisis going on. The virus is dying so quickly and the dead material and immune factors are toxic. I had about two weeks of this skin pain without sores. I really think it is herpes getting awakened by these powerful anti virals. Perhaps the meds will have an effect on herpes as well (simplex/zoster). I have been looking in the literature for info on that but, have not found anything. Herpes virus likes to hide in nervous tissue. I personally had a sides free day...sorry dude. Hang in there.
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YEP even with Viekira (finished week 7) The SE come and go and change and skin itch, nausea sometimes, fatigue all at different times throughout treatment. Some great days though especially at week 5 and beyond. Hang in there and just take it day by day and try to not to focus on SE and just focus on living the best day you can no matter what comes.
Walking the road alongside you. We will all get there.
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Thanx guys , I need the shoulder right now. Gnatcatcher sent Me a chuckle & woke Me up out of My blue funkin' pea soup thick as crap brain quagmire. Man it sucks that I now have to figure out how to deal with a new set of sides as well as this friggin head ache. BETO I thought I was the only one who ever heard of having a healing crisis! Seems like it though. After 40 plus years , this crap has got to be at an extremly high level & has to go somewhere.
Very irritable & skin is crawling, low grade fever, naseous. But the worst ( besides the headache is the inability to concentrate. It has literally been fifteen minutes keying this!!! I am a heavy truck parts specialist with Ford Motor co. & it requires a lot of computer work & research , microfiche, book reading, and paperwork that is a grade A hassle when I am like this!!! Oh well , anyone up for a massive batch of lemonade??? I got a bumper crop of lemons!!!!!! Lets' see if I can come up with a witty parting shot, her goes.
If Harvoni Is Gold , When It Kills The Heathen Devil Hep C, My Freakin Liver Is Going To Be Rich!!!!!!!!LMFAO!
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Damn, forgot to use spell check again!
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It was the chills or skin 'creepy-crawlies' that would get to me during my treatment along with dry skin and insomnia, but guess what?
You all hang in there because it will be rainbows and unicorns soon!
This too shall pass.
We are on this journey together and not alone.
More good news: I saw post today from Gilead, they strongly believe there will be a cure for both HIV and Hep B much like our Hep C medical miracle very soon.
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Herxheimer reaction is fairly common and may make up a lot of the reported side effects of anything that kills bacteria, fungus or virus quickly. I know I need to be careful with information, so I just suggest you google herxheimer's. Strange that this is not often discussed with harvoni and like meds. let's put it this way, there does not seem to be anything that kills off this virus as quickly as Harvoni and like drugs. Again, I welcome the side effects to an extent because I feel like the drug is working. Kind of tough though when I am public speaking and I feel like I might just keel over any second. teehee
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Thanks Beto fantastic to have a name to what we are feeling. I googled it and it really made a whole lot of sense. However, I would like to share a paragraph from the article which I think will be relevant to all of us on the road..
" Wanting to know specifically why certain symptoms occur is micromanaging the process and unnecessary. It’s best not to try to fit every symptom into a category (herx, hormone readjustment, old symptom revisited, etc.). If patients are patient with the therapeutic process and have confidence it will work, they will eventually forget they ever had these symptoms."
Be well and prosper.
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Damn, forgot to use spell check again!
No need to worry about that ever again:
"It is a damned poor mind indeed that can't think of at least two ways of spelling any word."
- Andrew Jackson
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Riba sides are sooooo weird and different for every person. I will say this (and hope I don't jinx myself).. I am feeling better every day! Maybe just cause my liver is improving??
The first week was nothing, but the second and third.. ugh! Severe anxiety, heart pounding, queasiness, slight headache, running out of wind.... but I could sleep (thank god).
Also , face itching, no rash though just random itching on various parts of my face... that would go away quickly... sometimes I scratched , but some say "don't scratch!"
Weirdest side?? I had a scar on my wrist I got from a cut in 1983!!! when washing dishes...stupid college kid... I thought I could wash dishes in the sink with electric dishwashing soap... don't try it. Anyway, that scar started feeling like I had just cut it!! for days I kept looking at it cause it felt like I had just cut it! Kept expecting to see blood...... So weird. It stopped after about a week, thank goodness cause it was driving me crazy(ier).
Severe anxiety has subsided, queasiness has disappeared. Still have pounding heart , esp after the 3 ribas.
6 more weeks to go!!!
dm
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Hey y'all...was at the gym and saw a number come up on my phone...It looked like my Dr's number...too chicken to answer. Well, I stayed right there on the circuit training machine, bit the bullet and called my voice mail. Undetected!!!! week 7. He did not read my ALT/AST numbers but said they were in normal range. Those have been high for 20 years. Here is the kicker, my ferriten number was 83. So somehow all the excess iron just left...weird...my eyes welled up...40 years with it. Well I do not want to jinx it. I'm supposed to go 4 more months. My Dr mentioned shortening my time...funny I don't want too. I want to make good and sure every last critter is gone. This is better than winning a lottery. If it holds, It was in the nick of time. My liver would not been able to go much further with the virus chopping away. I'm so blessed and lucky.
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CONGRATULATIONS BETO!! I know that feeling 42 years and then in 4 weeks UND. It is a miracle of modern science. Definitely something to get weepy about. I actually got my results online before seeing the DR. and had to stare at them more than 4 times for I honestly couldn't believe my eyes. It took me an hour of going "did I really see that?" before I could share the news with others.
We who are on this journey are so very fortunate to share this moment. I am cheering you on for the rest of the road to recovery. It is SO worth it....
Taking my week 8 bloods this week and will share when I get them. Four more weeks to go and baby we got this!!! (up ahead is the great wall of waiting for SVR) but every step is a celebration!!
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Awesome Beto: 1. that you are not detected and 2. that you are at the gym circuit training!
I got my 4 week "Not Detected" response via a internet portal and just kept looking at it and did a screen shot and sent to my few close friends that know my journey.
I kept going back to look at it. I know we have to wait for the final SVR after treatment but we need to celebrate every victory along the way... especially when we have waited so long to know that this is possible. It so helps to keep the faith that this is and will work for us!
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Thanks BK music!!!
Congrats back at ya. We really are part of something incredible. So happy you are on track. My thoughts and prayers go out to all and hope for a time when every last hep c stricken person gets cured. We must have started close to the same date. July 11 was my first day...supposed to go to December 26...Merry Christmas. Thanks Bree...been watching your posts, so nice to have this support and knowing many others are on the same journey. peace all...
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Hey all, some thoughts,
One of the most interesting things of all to come out of my recent blood work was the sudden drop in “ferritin’ which is the gold standard for assessing stored iron in the body. Iron overload is very liver toxic and in my own case, whenever my ferritin was elevated so were my enzyme levels. High iron and liver disease go hand in hand in most cases, from all I have read and experienced. I periodically had phlebotomies (blood let) which is the best way to lower iron levels. That is until Harvoni. My levels had been kept down by letting blood but were not ideal. The levels dropped 200 points in just over a month of Harvoni.
Anyway this brings up lots of interesting questions and might shed light on some of the side effects. One from drop in iron…I am hungry all the time I don’t know if anyone else has that. Also, iron suddenly being released in large amounts.
I am just grabbing straws here and admittedly speculating, but find it very interesting. I also wonder about other elements and possible toxins are stored in a challenged liver. I wonder if we are not only quickly killing off the virus but also dumping accumulated toxins from the liver and body with this therapy. Just food for thought.
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Congrats, Beto! Wonderful news. :)
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beto,
just wonderin' if ferritin test is standard?? I don't see it on my last lab but maybe its called something else??
dm
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Not standard but should be, because in is the best way to determine iron overload. For example, alcoholic's run high iron tests as well as those with most liver diseases like hep. Iron overload all by itself can cause liver problems all the way to liver failure. To much iron is notorious for higher liver enzymes. Hemochromotosis is a genetic disorder whereby an individual can't rid the themselves of excess iron. One of their common issues is liver complications. Men 40 plus and post menopausal women, can begin to acquire too much stored iron without any liver diseases. So yes, it is something that folks might want to pay attention to. I was amazed at how swiftly my iron levels plummeted with 6 weeks of harvoni. I know a physician that does not drink, has no liver diseases, but had leukemia (in remission) and received many transfusions, which raised her ferritin to 3,000...this in turn gave her elevated liver numbers. There are more and mare doctors checking it and suggesting their patients get higher levels under control via flebs. All that said, iron is a vital element for oxygen transfer. Our bodies are truly amazing.
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Interesting.
thanks beto.
dm
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Hey Beto,
I just noticed on my signature that I took from my last biopsy
"Iron stain is negative"...
just wonderin if this is sort of like the ferritin test you talk about??
thanks,
dm
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No, the ferritin test is is a blood test. ferritin is a protein carrier of iron. High ferritin is a good indication of overload in tissues. The liver is a common target of iron accumulation. However, the liver stain by biopsy is a direct way to find out if iron overload is present. So sounds like good news that yours was negative. I know that alcoholics especially tend to have lots of iron in their livers. The connection is undeniable. Just another consideration for our liver health.
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thanks beto,...
I thought they were probably related in some way.
and really didn't now what the liver stain was all about.
thanks,
dm