Author Topic: My journey has started (Read 71312 times)

Scoutdoy · « **Reply #100 on:** October 12, 2015, 01:06:54 pm »

Cal , support path is not government...in theory anyway...but the way our country is...just kidding...it's the manufacturer

Scout

Else · « **Reply #101 on:** October 12, 2015, 03:09:26 pm »

Quote from: Scoutdoy on October 12, 2015, 01:06:54 pm

Cal , support path is not government...in theory anyway...but the way our country is...just kidding...it's the manufacturer

Scout

They're their own government.

Quote

http://www.bloomberg.com/news/articles/2015-02-26/gilead-avoids-billions-in-u-s-taxes-on-its-1-000-a-pill-drug

byebyeC · « **Reply #102 on:** October 12, 2015, 03:24:43 pm »

No, it's part of Gilead or Abbivie's company's. It has nothing to to with the government. It's the pharma co.

Cal · « **Reply #103 on:** October 12, 2015, 06:54:17 pm »

Thanks everyone,
If they could just lower the costs a but Australia may be in with a chance. It is the cost of course which is so prohibitive.
I don't want to say anymore, ribas have captured my brain and holding it hostage . Cal

byebyeC · « **Reply #104 on:** October 12, 2015, 10:53:07 pm »

No, it's part of Gilead and part of Abbvie Cali girl

Cal · « **Reply #105 on:** October 12, 2015, 11:37:16 pm »

HI Marianne,
Yeah I read the link. I see that it's part of the Pharma machine. I'm not criticising the access program or anything. I was talking about how the Pharma's high costs are what is stopping my Government putting it on our free PBS list. That and they our Government) don't care about scumbag heppers. (Sorry I told you the ribas have a knife to my throat atm!) The tax payer will in effect be paying for the drugs and the tax payer would rather spend it on important projects like another tunnel that no one uses. (Ouch shut me up!) Cal

Scoutdoy · « **Reply #106 on:** October 13, 2015, 12:34:45 am »

Obviously you have never lived in the states!!! I love my country, I served in the army, and I wouldn't want to live anywhere else in the world. Unfortunately, here, the probabilities of one living or dying is directly proportionate to the type of insurance you have. Good insurance, like mine = Harvoni on first request some other insurances = No cure,,your not getting any medicine, your not sick enough. It's unfortunate, that is how it is here. At least your government seems to be consistent.

Go Royals
Scout

Cal · « **Reply #107 on:** October 13, 2015, 03:12:20 am »

Hi Scout,
I know the U.S. System is inequitable, from what you lovely people have told me. Isn't there a Hep Organisation of body that is responsible for helping those without insurance?
One thing I was stunned by when I hit the streets in San Francisco for the first time were the number of homeless people and mentally ill homeless people on the streets. I was a young Social Worker who worked in psych at the time and it was upsetting and sad.
Our organisations are toothless tigers I'm afraid, funded by the Government. Our Government is more about getting votes with the new PM and all, and heppers are not vote getters. You know how we're stigmatised and marginalised we are as a group. Yes they are consistent, especially when saying no to preventing a potential epidemic of very sick and dying people.
Cal (bitter and twisted and ribered up!)

sixfttree13 · « **Reply #108 on:** October 13, 2015, 07:53:07 am »

From my understanding, my insurance is not as bad as some folks here in the states. Through my own ignorance of not reading my policy, i had to pony up some money. If i had known about the help from that place i would have took it. As i see it, the way I'm feeling 3 weeks into treatment, i can't put a price on it. Brain fog gone, joint aches gone, and I've noticed today that it looks like i might be loosing weight. Yay for harvoni!
It is bad that ins is required here or you get penalized by our government, but it doesn't help that big pharma makes cures so expensive that nobody can get it. My other meds were usually free or half price until my deductible was met, then i guess they are free until i went above the allotted amount. Now that I'm paid up, everything is free for the next 3 1/2 months.
I'm grateful for the cure, and that i just happened to stumble across this group while researching side effects of harvoni. Have a wonderful day my friends, 6 pills to go till I'm half way cured!

Scoutdoy · « **Reply #109 on:** October 13, 2015, 10:41:24 am »

Hey sixfttree, you seem to be following my parh on the treatment. I have 5 pills to go and BAM! I am done. I felt great during my entire treatment, and I am almost afraid to finish up. I work full time and have several children at home, and I feel great. My total cost for Harvoni was $75...and Giliad picked up 70.00 of that, which I would have gladly paid, but when my doctors sent in my prescription they also sent a copy of it to Giliad. Giliad picked up the 70.00 before I even got the bill from the ins. company. Yes Cal, the homeless and poor can get Medicaid, but many doctors won't take it. Finding a doctor that accepts it could mean several hours away for people, and sometimes the quality can be criminal. It depends on where you live. There is no consistency in the states. One area may be good, and the next state it may be horrific. Don't let those Ribas get you down,,, your on the home stretch....

Go Royals
Scout

willie g · « **Reply #110 on:** October 13, 2015, 01:29:44 pm »

GOOD FOR YOU sixfftree 13. And may your journey be a Great one! Life can be pretty darn Cool sometimes.you are in my prayers MY FRIEND. "Just willie g" GatorFalls

Bree · « **Reply #111 on:** October 13, 2015, 02:35:41 pm »

Me 3... I had a good experience overall with treatment.

Sixft - do you have 6 pills to hit the half way mark or to complete treatment?

Scout - embrace completing treatment... I was a bit scared to finish too but I have to tell you after a dip here and there, I'm doing really well overall, and feeling better than I have in a long time. I have some light-headedness but I think that is low blood pressure (which I have anyway).

My two cents is this is so worth it and it is awesome to feel hepc free!

sixfttree13 · « **Reply #112 on:** October 13, 2015, 05:19:11 pm »

Bree, 6 pills will be 4weeks into tx, 4 weeks to go

Cal · « **Reply #113 on:** October 13, 2015, 05:33:26 pm »

Hi Sixfttree,
Good on you. It's all in increments. I am 8 weeks tomorrow. Hooray. 4 weeks to go. Cal

sixfttree13 · « **Reply #114 on:** October 14, 2015, 07:54:28 am »

I wish i could post this letter i got from my prescription plan company, whom I've never heard of, but is in control of what i can use.
In short, as of Jan. 1st, 2016, if plan members medication are this "list" (all hcv meds, diabetic supplies, hiv, and other need to be alive) will require pre screening and possible 2nd opinions by another doctor, to find out the severity of the illness and if other options are available besides said "expensive" pills or supplies, or limiting the amount given out.
In my opinion, they don't want to pay out anymore and it is only going to make it more difficult to get the meds people need. Good thing i am grandfathered in, but this is ridiculous. Some meds probably dont have support help like harvoni, and people are going to suffer.
Rant over, have a great day

Scoutdoy · « **Reply #115 on:** October 14, 2015, 05:44:52 pm »

Sixfttree ....wow...did it really say "need to be alive?"

Sounds like they are gearing up for denials

Go Royals

Scout

sixfttree13 · « **Reply #116 on:** October 15, 2015, 07:51:19 am »

Scout, i was just paraphrasing the large list of medication, which mostly consists of meds to sustain a persons life. I just find it sad that billions are spent on finding cures or treatment for diseases, but the common man can't afford it and ins company's are not willing to cover it. I'm glad i am able to continue with the little amount i did have to pay.

On a happier note, i just got my last bottle of 28 pills yesterday, my little orange ish diamonds of life, almost half way. If my math is correct, eot should be November 12th. Then the 3 month wait for final labs. I go Tuesday for my 4 week labs, cross your fingers for a "undetected" result. Have a great day all!

Scoutdoy · « **Reply #117 on:** October 15, 2015, 02:00:40 pm »

You will either be und. or less than 15......you'll do great! 3 days left for me....woo woo

Go Royals

Scout

Cal · « **Reply #118 on:** October 15, 2015, 04:49:12 pm »

Sixfttree ,
I hear you on the anger and frustration of the inequitable access to these ridiculously expensive drugs. I understand they had to cover research costs but Gilead must have done that by now. I heard Gileads share prices have gone down with the market about to be flooded with so many other drugs. Let's hope that s not passed on the the consumer. It's bloody criminal. Can you send the letter to you local pepper? I'm all for outing and shamming these greedy ****!!!!!cal $:-\$

Else · « **Reply #119 on:** October 16, 2015, 12:43:56 am »

It's a long and winding road, Cal. Gilead isn't having to recoup R&D on sofosbuvir (Solvaldi) or ledipasvir (the add-on to sofobuvir to make Harvoni).

They bought Pharmasset who'd already developed the drugs. They're recouping the cost of acquisition of another company not R&D.

Here's the real kicker. Pharmasset was founded by Emory University faculty members and a large part of their research was and is funded by the federal government. So that R&D? Your tax dollars at work.

Cute story about how they came up with the name Pharmasset. Get it? Pharm Asset. See what they did there?

In case you think I'm coming down too hard on these guys, try out this quote from the founder of Pharmasset -

Quote

"The philosophy is very simple. Good drugs save lives and a major side effect is they can also make you rich," he added.

on edit: oops, forgot you were an Aussie, Cal. I guess that's not technically your tax dollars at work. But it's crazy anyway, eh?

Cal · « **Reply #120 on:** October 16, 2015, 02:07:07 am »

Hi Else,
I knew that they had to pay for acquiring Pharmasset but I didn't know it was originally a Government funded project? Surely the tax payer owns a large share holding in Gilead then? Stands to reason.

Actually I should hold my slagging off it seems Gilead are negotiating price with my Government. I wonder how many died or got sicker while the Government held off for a better price? Mmmmm I honestly thought AbbVie would be in with a shot but if Gilead negotiate it's price wars here Else!

Meanwhile the generic market is being helped by a few kindly fed up Doctors. Thank goodness for sense. Cal

Cal · « **Reply #121 on:** October 16, 2015, 02:08:21 am »

Else,
Taking that quote to my Oz forum, they'll love it! Thanks. Cal

willie g · « **Reply #122 on:** October 16, 2015, 02:55:46 am »

Hey sixtree( forgive spelling but if I EVEN tried to spell all these nicknames right I would end up a little crazier than I am now and I'm far enough gone ha he hi ha. ( that lol thing gets a little old after awhile ,( HEY,,I'm old school) I mean the whole World is LOL so a ha ha he ha or,,, you crackmy sh?? Up. once in awhile won't hurt. Anyway I must keep with the subject, well sixtreeI once missed two days of my MEDS. , I was not a happy camper so after a few hand grenades and a few words later I said to me self ( yes to Me Self,is that Irish ya think) I came up with a plan. Eight days (why eight and not seven I'll never know,,,,maybe it was that impatience thing) and I would call good old descriptors and let EM know it was me and how much I appreciated their help and service, plus a small mention of I had MESS coming I think. " could you check for me please if you have time?"" ( Well who don't like a little maple syrup once in awhile ha ha oh now I know why the eight day thing,,,,it was because I always called on Fridays(which I do with all Dr. Matters. Scripts cancels etc etc ) BECAUSE everyone genarrly are in good moods on Fridays (I think I screwed up back there on some speeling,,, irish?) YES FRIDAYS MY FRIENDS, PEOPLE SEEM TO LOVE EACH OTHER ON FRIDAYS!!!!!! Ignore this whole short story if you don't even have a slight q what this native American is saying. Onah. " Just WILLIE g" GAtor F alls

willie g · « **Reply #123 on:** October 16, 2015, 02:59:55 am »

DAM spell check I met. MEDS. not MESS. OR are they the same. Lololololk "just,just"

sixfttree13 · « **Reply #124 on:** October 16, 2015, 07:55:54 am »

The all mighty dollar cloaks the wolves behind big pharma. They don't want you cured, that would make them lose a customer, that is all we are to them. The bad thing is my last name is the same as one of the largest pharmaceutical companies out there.
Else...... i had a feeling this was a funded research medication, how else would they do it without government money.

After i tested pos for hcv in 2010, and probably 2 or 3 years later, i received in the mail from my state senator during election time, his views on big pharma and this "$1000 dollar pill". It didn't state that it was harvoni, but he was saying how outrageous it was to charge that kind of money for medication to anyone. That was one of his missions as an elected official to look into it and let the people know. And now I'm on that $1000 pill, and have never heard about it again. Good thing for commercials on tv, thats how i found out about harvoni.
Have a good one all

willie g · « **Reply #125 on:** October 16, 2015, 10:31:14 am »

ya sixftree I was on s and o and they were 1000 or more two and then Gilead bought them out [I think it was them] and they doubled the prices, thankGOD for the researchers and scientists who plug away aimlessly for us and not just for a paycheck. ''just Willie g''

sixfttree13 · « **Reply #126 on:** October 19, 2015, 07:52:34 am »

Half way done! Last pill of the first bottle taken last night, feeling good, feeling positive. Almost all my joint aches are completely gone now and the energy in the mornings is tremendous. Hope that doesn't go away after treatment. Have a great day

BillT · « **Reply #127 on:** October 19, 2015, 08:42:28 am »

Well today makes day 3 and I'm still alive.No problems yet.I thought it was affecting my vision and then I realized I hadn't put my glasses on.I'm so glad I don't have to deal with insurance companies.Then again maybe they should be glad they don't have to deal with me.lol Onward and upward.

Scoutdoy · « **Reply #128 on:** October 19, 2015, 11:55:45 am »

Sixfttree,,,the energy is great isn't it? I feel for the ones on RIBA, I don't think they have experienced the Harvoni high as they call it. Going to go get my EOT blood work done today!

Go Royals
Scout

slats1056 · « **Reply #129 on:** October 19, 2015, 01:54:41 pm »

Scout, good luck on Your labs. I go this afternoon to get My EOT + 1 week results. I am about to piss all over Myself waiting to get them!!!!! It's been 14 weeks now since I started Tx. & 2 weeks EOT. I got a big ole' Texas size Seegar to celebrate with since the Astros choked up playing Ya'll. Did You get Your dragon banner worked on yet?

sixfttree13 · « **Reply #130 on:** October 19, 2015, 06:07:10 pm »

Congratulations on day 3 billt, my side effects were a mild headache for a week and then they went away, the insomnia required a sleeping pill, but other than that, it has been a breeze. Insurance companies suck, but oh well, at least i didn't have to foot the whole thing.
Good luck on your results scout, come on with the big negative!
The harvoni high is awesome

Cal · « **Reply #131 on:** October 19, 2015, 06:16:03 pm »

Wow Sixfoottree,
That went quick. For me watching you anyway! Good on you. Cal

sixfttree13 · « **Reply #132 on:** October 19, 2015, 06:29:31 pm »

I know, right. Time flies when you are feeling this good! Thanks cal, 28 days to go

BillT · « **Reply #133 on:** October 20, 2015, 09:07:16 am »

You're 28 days will fly by in no time Tree and it sounds like it's gone pretty easy for you.I really haven't noticed anything to speak of so it's all good.How have your numbers been looking?

sixfttree13 · « **Reply #134 on:** October 25, 2015, 09:00:31 am »

All is still going well during the last leg of treatment, 3 weeks to go. Decided not to get the flu shot this year, we get them free from the company i work for, because i didn't know if my immune system could handle it during the harvoni treatment. Last year i actually got the flu a week after the shot that led to an upper respiratory infection, no thanks. Other than that, just living life and counting the days till eot, stay strong my fellow heppers, we will make it through this.

BillT · « **Reply #135 on:** October 25, 2015, 09:12:09 am »

That's funny you mention the flu shot Six.I got mine 3 days before I started the treatment and never gave it a thought.By the time I started my immune system must have been ready to anything and everything.

Scoutdoy · « **Reply #136 on:** October 25, 2015, 09:44:06 am »

Sixfttree I had the same thought as you and waited until after treatment to get my flu shot. Got mine on Friday . I wasn't going to even get one this year because of the Harvoni, but I work with the public 40 hrs a week, and I do not want the flu. My company gave them for free too, but I passed on theirs and when my treatment was over I just went to my doctors office

GO ROYALS
Scout

sixfttree13 · « **Reply #137 on:** October 25, 2015, 01:00:35 pm »

I can get a coupon or voucher to get the flu shot at a later date, i just don't want to get sick period. But having small children, 4 and 10 yr old, (germ factories as i call them, lol) it takes a lot of sanitizer and hand washing to keep me from catching anything. Just threw it out there if anyone else hasn't asked about the flu shot, maybe i should make a new post about it, we will see

Scoutdoy · « **Reply #138 on:** October 25, 2015, 01:39:35 pm »

Sixfttree , I called Giliad and they said they have no recommendation one way or the other because it is a dead virus. They said it is up to your own personal physician. That's why I waited until I finished treatment, but I had my own little germ factories get theirs last month

Go Royals
Scout

willie g · « **Reply #139 on:** October 26, 2015, 12:23:33 am »

thx SCOUTDOY, its great when something dead is put inside me and I don't have to worry I'm plucking around like a cross between a pig and a chicken right now after reading that ,,, too
the moon ALICE!!!! ''just Willie g'' Gatorfalls can plucking mean flopping too? all you great folks have a great week and THx

luckylarry · « **Reply #140 on:** October 31, 2015, 06:43:14 pm »

I haven't been on in a while as my work has kept me very busy. That's a really good thing as my anticipation of my 4 week results have been a roller coaster of emotions for me. After three visits to my primary doc because of a spike in my blood pressure, I finally got my Bp manageable. I didn't know Harvoni could cause an increase in bp.
The great news in "UNDETECTABLE." And only after 4 weeks. It is truly remarkable considering I started with a v/l of 18,600,000
I feel such a relief and now to move on to the second half of treatment.
My hope is to see everyone with this body draining disease cured and feeling refreshed like I do.
God bless to all

Scoutdoy · « **Reply #141 on:** October 31, 2015, 07:17:41 pm »

That's fantastic Lucky!

Scout

sixfttree13 · « **Reply #142 on:** November 02, 2015, 07:55:29 am »

Way to go luckylarry, 13 pills to go for me after tonights little orange miracle. Still waiting for my 4 week results, actually had the test done at 5 + weeks because I'm battling a pulled back and can barely move. Have to see a chiropractor 3 times a week, but he got me to where i can stand up. Other than that, feeling fine. 13 days till eot and then the 3 month wait for final blood test, going to be a long winter waiting to go back

byebyeC · « **Reply #143 on:** November 02, 2015, 12:38:13 pm »

So awesome LuckyLarry!!!

Sixftree So SOON! Woohoo!!!

Cal · « **Reply #144 on:** November 02, 2015, 08:25:51 pm »

Well done SixFfoot!
Wow that went so fast. If I was finishing my 12 weeks I would be finishing in 10 days! Rats I am doing another month!
Bummer about the back in the middle of tx. I have been having physio every week for my neck! And so it goes on.....Cal

sixfttree13 · « **Reply #145 on:** November 19, 2015, 06:33:50 pm »

Just letting you all know, i took my last pill Tuesday night, still doing well and just wanted to say thanks for being there and all of your kind words. Only 3 short months to do the final blood test, and find out if I'm free.

luckylarry · « **Reply #146 on:** November 19, 2015, 08:01:33 pm »

Congrats on completing your prescription. Don't let the anticipation get the best of you. I started my last bottle of Harvoni today. 27 pills to go. Best to you!!

Else · « **Reply #147 on:** November 19, 2015, 08:18:16 pm »

Keep posting SixTree!

I look forward to hearing your good news.

Madelief · « **Reply #148 on:** November 20, 2015, 02:20:07 pm »

SixFeet,
I am glad for you and wish you going on feeling good!
Thank you for your posts, you and all others, they are so supporting.
Wish you all the luck of the world,
Madelief (19th day on Harvoni and feeling good)

Cindy1955 · « **Reply #149 on:** November 20, 2015, 03:55:26 pm »

Quote from: luckylarry on November 19, 2015, 08:01:33 pm

Congrats on completing your prescription. Don't let the anticipation get the best of you. I started my last bottle of Harvoni today. 27 pills to go. Best to you!!

Lucky;
I am right behind you, I start my last bottle on Monday. We will be finished just in time for Christmas

Cindy

luckylarry · « **Reply #150 on:** December 16, 2015, 07:22:46 pm »

Well, I took my last BIG pill of Harvoni this morning. Yippee!!
My doc wanted blood work today as well so I had that done.
So far, my results are undetected. Doc wants me to wait for 6
months for the next series of blood work. I have read that 12 weeks
Is the standard time for blood work. Can anyone tell me? I am hoping
to get results in 12 weeks. Also, I have been reading a lot about side
effects after treatment. What's the story there? I've had a few side effects
but nothing to serious. Life already feels better.
Luckylarry

sixfttree13 · « **Reply #151 on:** December 16, 2015, 07:52:23 pm »

Congrats on your completion of harvoni, my doc said 3 months to wait for final blood test. For me, the harvoni high went away after a couple weeks, i still feel good, just not the super energy i had while taking it. Staying positive though, i have to wait till February 20th for the final test, 2 more months.

KimInTheForest · « **Reply #152 on:** December 16, 2015, 09:24:52 pm »

Congrats on taking your last pill, Larry!

Re: blood tests post-treatment... Even though SVR12 is considered to be the definition of cured with the new DAAs, many doctors (and patients too), don't feel rock solid about saying "cured" until 6 months post-tx (SVR24). And so, to save the system money, a lot of doctors just go with a viral load test at 6 months (instead of one at 3 and another at 6). But by all means ask for one at 3 months. Maybe your doctor will give it to you. Or maybe you can get one another way. It is nice for your own peace of mind to know sooner rather than later.

As for the body's readjustment to civilian life post-tx... it seems to really vary person to person. I suspect most people are coming out of treatment feeling better, or at least no worse, than they did during treatment. Some of us, however, have significant post-tx problems lasting weeks or months. I wouldn't really call them "side effects" because I don't think they are a consequence of the drugs but rather of the rapid clearing of the virus (or possibly the result of some changes that occurred in the body during treatment, that were due to drugs, but that are hard for body to undo even after drugs are gone). Nevertheless, from what I can see (my own case included), even those situations resolve themselves with time. I am feeling quite good these days now that I am 5 months post-tx.

kim

Else · « **Reply #153 on:** December 17, 2015, 10:09:54 am »

Hooray Larry!!! Welcome to the other side!

There's something to this post-tx adjustment. I have more physical energy than I've had in many, many years. It feels wonderful. But after a day of hard, physical labor? It's lights-out for 10 hours!

Or at least that's what happened yesterday. Weird. I can't say I mind sleeping like a teenager.

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Author Topic: My journey has started (Read 71312 times)