Hep C Discussion Forum

Audreyanna · Veteran Member

RE: Extra month of olysio and sovaldi oversight

Groupergetter · Guru

Audrey if I recall(which sometimes I don't wink ) you had started tx before I ended. I can go boating, just that caregiving for my elderly mother has consumed my free time. Been looking at trawlers around 40-42', single engine diesel for over 6 months. Hard to find the right one at the right price, and have seen only a few that have interested me. Having commercial and sport fished and being around boats most of my life, I know what to look for. No matter, probably don't need a larger boat until I can retire. Hopefully not too far off. I truly hope we get through this, find SVR, renewed health, energy, and spirit.

-- Edited by Groupergetter on Wednesday 18th of June 2014 01:40:09 AM

Audreyanna · Veteran Member

Turnsit, you are an inspiration! Thanks for the post. Hope this treatment works for both of us!

Groupergetter, I'm sorry, but congrats on being UND! When I was typing the last message, your "bottom line" didn't show up in edit mode. You ended treatment just before I started. You still can't go boating? Is that from other meds?

Groupergetter · Guru

I am 2 weeks EOT, can't wait for my 4 week labs. Got in the sun last weekend for a couple hours sans shirt to see if it would affect me. No problem. Just some good tan. biggrin My son is living in the Keys, hoping when we visit I'll be feeling more like fishing and diving. You're getting closer.... almost there. Funny I find myself waking up wanting a bowl of raisin bran or frosted mini wheats and a banana as I usually had with my meds. I bought some inexpensive UPF long sleeve shirts to wear when going in the sun, definitely helped. I see you sitting on the stern of a boat. Wishin I was in my boat. Worst 4 letter word keeps getting in the way....work. Hope all goes well for you in finishing your tx. I sometimes lose sight of how much I have to be Thankful for. This disease can rob us of our health, but we can't allow it to rob us of our spirit. Be well.

Isiscat2011 · Guru

Matt Chris wrote:
Hey Isiscat
I want you for my attorney, power to the people as we used to say, or now we say empowerment.
Is it certainly a interesting situation to be in, but honesty trump all reasons doing anything else.
matt

It would be my pleasure, Matt.

But, I am curious. Hypothetically, does this mean you would decline to accept tx drugs that your doctor recommended, because you weren't sure how/if the pharmacy would be paid, on the basis that you think it would be the more honest thing to do?

Turnsit · Veteran Member

I would be in that pool at night! Yum a pool, i could get in pacific at night but the sharks feed then so no go. None of my friends have hep c. I have no social life and it once ate me up but i found out no one wants a cry baby around so i sucked it up and today i am my own best friend, i am 62 and have the ability to cycle and hike with 30 year olds, i did not want to be left out of life and like you, i felt i was, it was torture so i found my way alone and it works, you can do it, i did riba interferon, now solvaldi olysio, am full of cirrhosis and 62. If i have to i will try again the new drugs coming out, nothing to lose! Almost bled to death in april, two transfusions back to back saved my life, no way out but in...good luck to you.

Audreyanna · Veteran Member

I just read the posts on that link. Wow! What a bunch of incompetent morons! No, I used Skyemed for the first month and then had to switch to Caremark. The switchover was a hassle and several calls over 3 days or so but the last one was fine.

I'll see what my doc says about an extra month, since I wasn't quite undetected at 4 weeks., plus the cirrhosis and two failed attempts, etc. Maybe he'll prescribe it. If not, I have 32 pills left. Hopefully that will do the trick. Man, I hope so.

Ii guess part of being depressed is living in South Florida, having a pool in the backyard I haven't been in all summer, missing a sailboat trip to the keys my friends went on, and basically staying inside all day as I am retired. I'm like a hermit. How long do you suppose I need to stay out of the sun after EOT to be sure the meds are out of my system?

So how much longer are you on treatment, Groupergetter?

Thanks for the heads up - I won't be accepting meds I may not need and end up paying for.

Groupergetter · Guru

Hey Audrey, don't forget a number of us here have been told on multiple occasions we have another script to fill. My meds supplier called me on 3 separate occasions asking if I was ready for my next month's supply. This when I was already near EOT and after. I'm not sure if they shipped without a prescription if you'd be liable for it? Is this Express Scripts/Accredo?

http://hepcfriends.activeboard.com/t57099534/express-scripts-debacle/

And yes getting UND and SVR which I'm still hoping and praying for, doesn't end the battle with health issues caused by this nefarious disease. I struggle with chronic fatigue and brain fog every day. Keep hoping in time it will get better. We've had this crap for years so it may take some time (if ever) for certain problems to improve.

We all get down, and frustrated at times. Yes I'd rather be on the water right now either cruising, fishing, diving, or just putzing around. Being on meds, I haven't had my boat in the water for over 4 months....makes me sick. Just got the finest new custom fillet knife and no chance to use it. Damn I wish I could retire. Oh well, another new day tomorrow. Keepa go.

-- Edited by Groupergetter on Tuesday 17th of June 2014 11:32:58 PM

-- Edited by Groupergetter on Wednesday 18th of June 2014 12:02:46 AM

Matt Chris · Guru

Hey Isiscat

I want you for my attorney, power to the people as we used to say, or now we say empowerment.

Is it certainly a interesting situation to be in, but honesty trump all reasons doing anything else.

matt

Isiscat2011 · Guru

Tig56 wrote:
Sadly Isis, most of us have to give two craps about our finances and personally I'd rather not get myself into a situation where I'd have to file bankruptcy to get myself out of trouble because some overzealous pharmacy decided to see how far they could push an issue. We also have to deal with insurance limitations as well, that's all part of the system we're part of right now. I also know retaining an attorney for advice is expensive and having to have one represent you in court is quite expensive. I know you're in a personal position that allows you the ability to handle much of this yourself. Consider yourself fortunate in that respect. I would rather not have anyone taking me to court or threatening to sue me over a situation that can be handled with a phone call and advice from a few friends (us). But I appreciate your position, it just wouldn't work well for someone in my limited financial situation.

_____________________________________________________________________________________________________________

Hi Tig:

I'm talking about a situation where the doctor believes the extra tx will give someone the best possible chance of SVR; this could be a life and death proposition. F*** the cost. I don't say this because I don't have to worry about finances (I do) or because I wouldn't have to pay for legal counsel since I am an attorney. This is practical advice for anyone.

First of all, the pharmacy may or may not sue. It was their mistake in the first place not to get the insurance authorization before mailing out the drugs. If they did attempt to recover the loss perhaps a settlement could be negotiated. If not, a Chapter 11 or 13 would probably cost 2-3 thousand (with counsel) as opposed the 75 thousand or so the drugs would cost.

Businesses use the laws to their advantage; why shouldn't individuals? The rules have changed, Tig. We no longer live in a world where playing nice works against those who hold all the power.

I'd rather be alive to fight them than dead with my misguided principles. This isn't a moral question; it is survival 101.

Tig · Admin

Isiscat2011 wrote:
Quite honestly I wouldn't give two craps about the cost of the drugs if the doctor recommends it. When it is a question of SVR or no SVR (literally a question that could be life and death for some people) get your hands on the drugs and let the chips fall where they may. If insurance won't pay and you don't have that kind of money at your disposal then I guess the pharmacy will have to sue you. This is America: We have Chapter 13 and Chapter 11 Bankruptcy options! And don't let your doctor even consider the cost factor (not that he would but just in case). This is a medical question for him not a financial one.

Sadly Isis, most of us have to give two craps about our finances and personally I'd rather not get myself into a situation where I'd have to file bankruptcy to get myself out of trouble because some overzealous pharmacy decided to see how far they could push an issue. We also have to deal with insurance limitations as well, that's all part of the system we're part of right now. I also know retaining an attorney for advice is expensive and having to have one represent you in court is quite expensive. I know you're in a personal position that allows you the ability to handle much of this yourself. Consider yourself fortunate in that respect. I would rather not have anyone taking me to court or threatening to sue me over a situation that can be handled with a phone call and advice from a few friends (us). But I appreciate your position, it just wouldn't work well for someone in my limited financial situation.

Tig

Audreyanna · Veteran Member

Good point, Isiscat. I could always pay it back, $50 per month!

Audreyanna · Veteran Member

Hi Tig,

Thanks for the tip about showering! That may help a lot. It really drives me nuts, especially on my feet.

Also, much appreciation to you for telling me about the pharmacy scam, if we dare call it that. Money does strange things to people. I left a message with my Dr. Office so I'll see what happens when they call back. If I hadn't found this forum, I could have ended up in major debt. Thank you so much, Tig!

I'm feeling much better now. Sometimes I just wake up In a bad or sad mood. It's so nice to have you guys to reach out to. Thanks again everyone!

Isiscat2011 · Guru

Quite honestly I wouldn't give two craps about the cost of the drugs if the doctor recommends it. When it is a question of SVR or no SVR (literally a question that could be life and death for some people) get your hands on the drugs and let the chips fall where they may. If insurance won't pay and you don't have that kind of money at your disposal then I guess the pharmacy will have to sue you. This is America: We have Chapter 13 and Chapter 11 Bankruptcy options! biggrin And don't let your doctor even consider the cost factor (not that he would but just in case). This is a medical question for him not a financial one.

Tig · Admin

Hi Audrey,

You mentioned severe itching around mosquito bites, but particularly after showering. I have spoken to several people that are taking Olysio that mention repeatedly that after showering, they experience more itching than any other time during treatment. Just my opinion, but I believe you're having a reaction secondary to the heat from the shower and the mosquito bites are simply exacerbating an already aggravated condition. Just a thought. I had the same problem after showering with ribavirin. Try reducing the water temperature and I'm sure you'll have less itching. It worked much better for me. Different drug but it's certainly worth a try.

I'd be careful discussing those extra medications with some of these pharmacy techs. If you accept delivery of them, there is no sending them back. We've had others here that had this same issue arise and the pharmacies wanted to ship them and you know it's because they want that money. If your insurance carrier hasn't authorized it, don't accept it or you will be responsible for the entire amount. I'd let your pharmacy rep know at your earliest opportunity that your treatment was for 12, not 16 weeks if there is any question in their mind at all. I'd be sure your doctor is aware of this pharmacy issue as well. If he can get the extra 4 weeks approved, I'd do it too. Wayne (member here) was able to get that approved early in his course of treatment, but that 4 week extension hasn't been mentioned in too many discussions that I've seen.

Tig

Audreyanna · Veteran Member

Hi Isiscat,

yes, I'm thinking the extra month can't hurt and the only side effect I noticed is if I get bit by mosquitoes it's very intense itching all over my body after my shower. Strange, but it drives me insane and I can't sleep. I just stay inside. I assume it's from the drugs as they didn't bother me much at all before.

I go to university of Miami and they're supposed to be really great for hepc too so I will ask him. Today. I'll leave a call on their voicemail, that is. Pretty busy place now.

He had mentioned he thought I had that q80k factor once so that's in the back of my mind. That and the cirrhosis and two other failed attempts. Who knows the reasons why the very few that don't respond don't. I really want this to be the end of the roller coaster.

Ok, wish me luck and you take care! Thanks.

Isiscat2011 · Guru

Oh, sorry, Audrey. I misunderstood that your doctor had ordered the extra month but then I re-read. Still, I would talk to doc about this option.

In clinical trials the S/L combo proved 100% effective when cirrhotics used 24 weeks. The results were still impressive with 12 weeks but not as good. The S/O combo has not been as extensively tested and it has the additional Q80K factor (which should be mitigated by the Sovaldi in most cases but is still a bit of a question mark especially when you factor in cirrhosis).

We have another member with cirrhosis whose doc prescribed 16 weeks on the S/O (with riba). His doctor is Kris Kowdley who is one of the best in the country. If the treatment was even remotely tolerable I'd do the extra 4 weeks just for insurance. Just my two cents.

Rethinking the idea of living to 100. lol Only if my quality of life is good. But, I sure would like to see how the future turns out. :)

Audreyanna · Veteran Member

Thanks for the replies, Isiscat and Duane. Its true I'm down today but someone once told me that if you feel sad or lonely or depressed, just remember, it won't last. So I feel better already. There's no good in thinking about what if - what if this treatment had come out 20 years ago? If that had been the case I would probably never have stopped drinking and would be in worse shape. Part of my mood can be blamed on my 21 year old son who I found out has dropped one of his college classes and skipped another yesterday. I'm at wits end with him. Kids are so lazy and never grow up nowadays.

I have read about companies trying to come up with drugs to help fibrosis so that should be the next big thing! Hope we're alive to see that and benefit from it! Not sure i want to live to 100 as Ive had pain and now arthritis pain since my teens but it is amazing how exponentially fast the medicine field is growing now.

I feel better already. Hope you both have a great day and feel better every day! Thanks.

Audrey

Isiscat2011 · Guru

Hi Audrey:

The whole hepc journey is an emotional roller coaster--from the day of diagnosis to deciding when to treat to getting treatment to post treatment--and even after SVR for most people. This is just the hand we were dealt and from what I can tell you have been playing it with exceptional grace.

It sucks that you have another month but I think it was a brilliant decision by your doc to keep you on a bit longer. Us cirrhotics may require a bit longer.

I try to be realistic about what treatment will actually do but it is easy to get caught up in the exuberance. SVR won't give me a new liver but it may improve it a bit. It should reduce some of the symptoms that are connected to the virus but I expect that will take some time too. In the meantime, scientists are busy as bees dreaming up ways to improve fibrosis, and perhaps even grow us new livers one day.

I'd like to live to be 100 out of sheer curiosity to see what is coming next.

Hang in there. :)

Dzdayscomin · Senior Member

Well as far as being ESLD my meld was as high as 17 but as of 6/3 it was down to 12 then labs for transplant 6/6 it was 14 ?? so it fluctuates.

My plates went from 40 up to like 65 so that's a huge jump for me!

My main problems are edema which is what I think causes this constant leg and foot ache, and mild to moderate acites which has been better since being on and finishing up tx.

I think my memory is somewhat less than it was before but I also think there is improvement there as well, I have extensive portal hypertension with varicies, but I am determine to improve regardless about what they say about cirrhosis, if you think you can get better you can, eat good , low salt, lots of water, and smile about everyday and things seem better even if they really are not...the power of positive thinking is much underused .... And yes that 1st notice saying the virus is gone will be a rfeal emotional boost ! I am hoping for you that that is just the news you get !

Be well

Duane

-- Edited by Dzdayscomin on Tuesday 17th of June 2014 05:22:49 PM

Audreyanna · Veteran Member

Thanks Duane. Don't know why I'm so down today. Depression has been rare since getting on this treatment. Was pretty normal before that.

i see you're on the transplant list? I'm a ways from that. Think my meld score was a 10 or 11. Do you have any bad side effects from that? I can't think clearly at times, but could be my age plus it runs in my family, lol. My spleen is enlarged and my first bloodwork on this treatment still showed platelets are still low (74) , LFTs were much much better but not normal. Maybe the next bloodwork will be undetected and all else normalized. That will lift my mood immensely.

Thanks for your reply. Gonna take a nap and wake up smiling!

Dzdayscomin · Senior Member

I know exactly how you feel about thinking we were goners.....but I am glad to at this point be free of the Virus and I just can't tell you how much better I feel each day...it is really amazing!

So hang in there I just know you come out on the better side of this tx.

And don't worry about the depressed days who in our shoes wouldn't have those days !

Duane !

Audreyanna · Veteran Member

Thanks, guys. I wasn't totally undetectable at week four, so my thinking has been influenced I guess, maybe a little desperate or something. I'll check with my dr. Maybe he ordered an extra month because of my first viral load test. Who knows.

Anyway, most likely only a month left! I wish it could heal the cirrhosis but never thought I'd even get rid of this virus. Thought I was a goner within a couple years! Still seems unreal after all these years. Too bad we didn't get this 10 years ago and I'd live a normal liver. Have had back and neck pain since a car accident at age 16 and shouldnt even take pain pills or even Motrin. Sometimes I just have to and it always scares me as to what I'm doing to my liver. Oh well. Woke up on the depressed side of the bed. Guess I'll go back to sleep and try again. Thanks.

Dzdayscomin · Senior Member

Error or not if the ins said they weren't paying someone is gonna be on the hook for about 47k so I'd be darn sure.

Also I am also a 1a cirrhotic and 12 weeks got me UND, so I guess I'm of the thought take the least of any drug you need to accomplish the task, gone is gone I don't think it's a deal where ya need a maintenance dose....Just my opinion.

You are gonna be free of this and feeling lots better real soon ! I know I am!

Duane

jimbob · Senior Member

Hi Audrey.

Yes, my special pharmacy called me a few times re: a 4th refill too even tho I had my 12 week supply. Pharmacies don't keep track of your tx weeks. Pretty sure it's a mistake like mine ,but check with your doc anyway.

Audreyanna · Veteran Member

My first month of meds came from a different specialty pharmacy and the next month switched to another one. There was definitely a little tension between pharmacies, with the first one not wanting to give it up and making it overly complicated. . Anyway, now I just received my third month of meds and it says on it there's one more refill. She also mentioned it when I called. I didn't correct her. i think it's a mistake but will contact my dr. to see if I can take it. I do have gen. 1a and cirrhosis so guess it can't be a bad idea. Should I just act stupid and let them deliver it and take it? This happened to anyone else?

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