Hep C Discussion Forum

JimmyK · Guru

Hello, I'm John

wmlj1960 · Moderator

That smile tells the story of a happy camper. Wishing you a smooth ride to SVR Ivery. smile

Sydhanrahan · Guru

Sooooo happy for you Ivery. And yes I agree with Tig, get yourself over to on treatment. Anybody whose had a serious tussle with RIBA and a new bottle in his hand, should be there in the middle of it.

Eplusa is meant to be the best thing since sliced bread. It's hard to believe there will be no side effects when you've done the RIBA hard yards first but according to friends of mine in the real world, as well as this cyber land we all walk in, it's true. So you can now sit back and watch that turtle become a shell backed millionaire in his new mansion.

biggrin

Syd

wendyo · Guru

Looking forward to hearing your new journey begin John. Happy days!

Cinnamon Girl · Guru

Oh, what great news, John! I think you should frame that photo... that is one happy man!! biggrin

Best of luck!

Canuck · Guru

Hey, hey Ivery!!

'Bout time! Last week, this week was waaay toooo far away (for me anyway).

Couldn't wait for you to get it and so glad ya got it now. It will soon make you forget aaaall about riba land. Just too bad you had that detour into riba world.

Was today Day one? Or tomorrow?

Yay, yay!.

Oh, and never mind about that 2:55AM thing - E-VERY-THANG is better with a little Epclusa on it!

Down the hatch bub, this one's fer you.

RC's next. biggrin C.

Tig · Admin

John,

That's great to see, thanks for the photo! I can see the relief and happiness written all over your face. I can speak for everyone and say we're with you all the way! There are a lot more smiles to come too. I guarantee this will be a smoother ride. Smiles like the one in your photo say all there is to say. Congrats on the newest golden bullet. Look out Dragon your time is near...

I think you need to move this over to the "On Treatment" section and out of New Member. You are far beyond new, you graduated to Veteran! The pay scale is better at this level. You can name it whatever you'd like or keep it the same. You have paid your dues and can now be officially ON TREATMENT for the second time. That's far enough though. You'll be getting off this treatment train sooner than you know it. The thrill of getting going on the Tx you know so incredibly effective and literally no or low sides, is strangely exhilarating, lol! (Strange? I know, but it's true smile )You've got a lot to look forward to. Have you started your Christmas shopping yet? You're a guy, so maybe not yet. Now that you have, remember that you'll be done before Christmas. You know how fast that is upon us! We're going to have good news pretty soon about several people here. It's going to be a better 2017 for a lot of people and a great end of 2016...

GOOD LUCK!!

YOU ARE THIS COOL

robertsamx · Guru

You got the willie wonka golden ticket right there in your hand!! That's the good stuff right there. Congratulations John, now you can get down to the business at hand. Really happy for you. Best of luck!! RC

Ivery · Veteran Member

Look what I got today!!!

Loopy Lisa · Guru

I'm really happy to hear that. I can't believe that riba is still being used. Nasty stuff.

I suspect this will be a much easier ride. :D

Shadowfax · Guru

Excellent News John,

As the others, I am hoping this is more tolerable.

Great spirit, never give in.

SF

Cheddy · Moderator

Good deal, John. I'm hoping you will find this more tolerable for sure.

Tig · Admin

That's good news, John! When will you be starting? Congratulations.... smile

JimmyK · Guru

Ivery wrote:
I'm APPROVED for new meds.

LOL makes me want to say go to sleep!

This is great news!@

JimmyK

Ivery · Veteran Member

I'm APPROVED for new meds.

JakeAms · Member

Hi John, welcome! As you probably have gathered by now this group is supportive and resourseful. Wishing you the all the best with your treatment and stay focused on the positive result you will achieve. I also had genotype 3b and these amazing meds have cured me. You are on your way to improved health. Cheers, JB

Ivery · Veteran Member

He said he would explain the medical reason to switch . But the real incentive for them to change is cost. So it's a better drug for treatment that will cost thousands less. And it's for 12 weeks vs 24. So why would they not ? Got my fingers crossed . Thank you canuck

JimmyK · Guru

What is promising here and what the new Doctor is likely to do is inform the Insurance Company that your contradictions to Riba are such that in his Medical opinion you will not be able to complete the course. Mind you that is just a guess, but he will have to provide a valid reason for the change and in my mind that is the lowest hanging piece of fruit.

JimmyK

Loopy Lisa · Guru

That is fantastic news, I am so happy you made the switch. It seems like you found a doctor that actually gives a hoot! That is actually awful you were covered already for a better therapy and laziness and lack of interest resulted in a not recommended route. I read great things about this new therapy, so I look forward to hearing your progress. By time you get the switch Riba wont have built up enough to give you too many problems. I am happy for you! :D

Canuck · Guru

Hi Ivery,

As a fellow GT3, who just finished a trial of sof/vel (Epclusa) and vox, I am SO pleased that you might get the Epclusa regime - I sure hope you do!! It was wise move (in my opinion) that you did your last minute search for the new doc and the new drugs to widen your treatment options. Leave no stone un-turned is a good motto. I wonder if your new doc IS going to be able to get you switched to Epclusa? Hope so, but either way your covered - would just have been better (I think) to endure a shorter course of the very effective Epclusa instead.

Sorry to be late in welcoming you - been preoccupied lately. Big welcome from me!

Loved your fish and photography! smile C.

Tig · Admin

Good! Thanks for checking, I was hoping that would be your answer. Hepatologists are #1 in the field of liver disease.

Ivery · Veteran Member

He's a

Hepatologist

-- Edited by Ivery on Friday 29th of July 2016 10:45:16 PM

Ivery · Veteran Member

Hummmm, I'm not 100% sure. I'll look at my paper work and see.

Tig · Admin

Hi John,

Is your new doctor a Hematologist or a Hepatologist? Hematologist is a blood specialist, Hepatologist is a liver specialist.

I'm very glad to hear you are happy with your new doctor. The decision being considered is sound in my opinion. Epclusa is a wonderful protocol and very effective.

Keep us informed.

Ivery · Veteran Member

Yes thank you guys. I'd never of known any of this without y'all. The doctors field of specialty is hematologist. That's all he does.

Linuxter · Guru

Good to hear John, glad you got a good doctor.

Being proactive and having a doctor that you can trust is key to getting good medical care.

Sounds like things are working out.

Linux

JimmyK · Guru

John that is some great news.

Not simply that he is thinking of working on a switch, you are on an acceptable protocol. But it simply sounds like he is a sharper knife. ;)

The thought that we may have increased your ability to question and seek is for us an honor.

Regards

JimmyK

Ivery · Veteran Member

Seen my new doctor today and wow! He's a big difference from my first. He wants to get me on epclusa. So he said to continue with my meds for now while he works on setting it up.

Ivery · Veteran Member

I am grateful to have meds and need to just relax I know. I guess it's the whole rudeness of the staff. That pushes me to want to push back. I did call my insurance company today. And I would of been covered for the dac. If the PA had requested it they said. And the nurse for brieva also agreed with it being a better choice. But unless I can't tolerate the treatment I have to go with what I got. OK, no more complaints guys. On with treatment!! Arghhhhhh that's my pirate growl

Linuxter · Guru

Pablito wrote:
Hi John
I tend to agree with Jimmy on this one: you are on an acceptable protocol if not an ideal one, and the die has been cast at this stage so it would be hard to get them to change mid-treatment.
But you are still on a good treatment and have an excellent chance of SVR. If you are super-unlucky and the treatment doesn't work change doctor and get yourself onto one of the newer regimes.
Pablo

How sweet it is that in this era of HCV treatment advancements we now have multiple means to cures with extremely reliable numbers ... good stuff. And as Gilead might say, 'On to HBV' ... Put the Dragon to rest once and for all.

Pablito · Senior Member

Hi John

I tend to agree with Jimmy on this one: you are on an acceptable protocol if not an ideal one, and the die has been cast at this stage so it would be hard to get them to change mid-treatment.

But you are still on a good treatment and have an excellent chance of SVR. If you are super-unlucky and the treatment doesn't work change doctor and get yourself onto one of the newer regimes.

Pablo

Cheddy · Moderator

Yep, time to change doctors. As you know, you are not stupid to pursue this.

JimmyK · Guru

Greetings,

Again I would like to stress that the protocol is acceptable but perhaps not the best choice. There is in fact an 84% SVR rate for Gen3 on this particular regiment.

That said, at this point it would be a very tough battle to get the Insurance Company to alter the prescription without some pretty significant factors that would justify the change.

I would take away from this also that your current Doctor takes the route of least resistance when dealing with Insurance. Sometimes behind the scenes it is much like a prosecutor dealing with a public defender.

"I'll let you run Joe up the river but how about you give George a break?"

On the other hand a good Doctor, well informed and respected, tends to take cases on a true individual basis and fights for each and every one of them.

In that you are on Ribavirin, and that for an extended period of time, it is very important you have a Doctor you trust and are in with for the long haul. You do not need to build anger against nor feel in any way slighted by your Doctor. That could be problematic down the road some.

If the contradictions related to Ribavirin become such, that cause for reduction or stopping all together become a reality, what is your Doctors Plan B? You cannot take Sof alone. That may be a good question to ask depending on how much rudeness is manifested. It is also a note to the Doc that you are not "stupid" and apparently are not simply sheepishly following without doing research.

Hang in there friend!

JimmyK

-- Edited by JimmyK on Tuesday 26th of July 2016 11:14:51 AM

Tig · Admin

Some of those people are just out of touch with patient care. I have no use for a provider that refuses to listen to their patients. They won't consider your request because they don't want to. It might require thought and a little effort to find out. Just dismissing you is wrong.

Good luck with the new doctor.

Ivery · Veteran Member

Well, they said no. First the girl I spoke with was rude. Took my info down wrong for the meds I wanted. Gave that info to doctor who thinks I'm stupid or something . Well they called me back and and said it was not possible to change or stop meds at this time. To much involved with insurance company's and such. They were no help at all. I do have a appointment Fri. With a different doctor

-- Edited by Ivery on Tuesday 26th of July 2016 09:29:09 AM

Tig · Admin

Hi John,

Yes, that's a good resource to read. Here's a some additional links to useful information:

Daclatasvir/Sovaldi

Daklinza (Daclatasvir)

Ivery · Veteran Member

Is this good info to study from for some facts?

Ivery · Veteran Member

When I go back in 2 weeks. I will pressure for them. I plan on having some good notes and questions to push for them.

robertsamx · Guru

I would be screaming for Sof-Dac. Sof is a ns5b. Dac is a ns5a. Your hitting the virus in two spots. RIBA is a enhancer drug, it dose not hit any spots on the virus to stop replication. The trials using Sof-RIBA had good results (the 24 week) I think had 86% to 94%. But why risk it with the RIBA?? Just my oppinion. RC

-- Edited by robertsamx on Sunday 24th of July 2016 11:55:29 AM

Linuxter · Guru

Hey John,

I found if ya make a ritual out of taking the meds the same every day as well as carrying a bottle of water with you at all times it will make a world of difference overall. Eat well avoiding processed foods, drink unsweetened cranberry mixed with coconut water (one of Jimmy's favorites) or other unsweetened juices. I got into making smoothies, green ones with spinach or kale and fruit, lots of good recipes over at the Green Smoothie Ranch in case you're interested.

Don't slack on the water and keep your eye on the prize, you'll do fine.

Congrats on getting going on the meds ... WTG!

Linux

Shadowfax · Guru

Ivery wrote:
I've started the meds today. And my wife has got me a appointment with a bigger, better hospital with with better doctors. But it will be Sept. Before they can see me.

Welcome John,

I think it's great you have started your meds. This is the important part right now and you will be fighting this dragon while you wait for the next appointments. Unfortunately, waiting is something that is common to most of us here so we just try to deal with it the best we can. September is not that far away. Personally, I was put on hold for 3 months until I got a second opinion on my case and I was not on my meds yet. That was difficult because the way I saw it was I could have potentially been cured while I waited that time.

You are on meds, so as I said, you have started to fight this so try to take that very positive and wonderful thing to help you sail through to September. Be well and keep us posted.

Cheers

SF

Tig · Admin

Hi John,

Good job getting things underway! Most important thing right now is to never miss a dose of either medication, take it at the same time every day and drink at least one gallon of water per day, without fail! Compliance, regardless of protocol, is the most important thing. Do your best to eat a balanced diet, stay active, but understand that the Ribavirin will cause some anemia and that leads to fatigue.

Let your body be your guide. If you're tired, take the hint and rest. If you notice a headache coming on, you're in need of water. Water is your best friend throughout and after. These drugs tend to dehydrate you, without you realizing it. One symptom of that is a headache, pay heed. One other thing about Ribavirin, it can affect your mood. There is a well known side effect that we call the "Riba Rage". It can make you short tempered and kind of cranky. If you start to notice that, realize it's a side effect. Tell your wife that you may be a bit moody and tell her to let you know. Avoid situations that might make you mad and if you feel some anger coming on, separate yourself from it. It's the best way to handle it.

If you have any questions or side effects you don't understand, we have a lot of experience here that can help you deal with them. This will be a marathon, not a sprint. Take each day, one at a time and before you know it, you'll be crossing the finish line! Good luck and good health!!

Ivery · Veteran Member

I've started the meds today. And my wife has got me a appointment with a bigger, better hospital with with better doctors. But it will be Sept. Before they can see me.

Loopy Lisa · Guru

I'm very fortunate to have a Doctor that fights for her patients and cost is not her problem, her patients welfare is. I pay for insurance too, and I expect to get what I pay for. People need to question everything and if so threaten legal action. I'm sick of people having to suffer without need. Rant over. :)

Cheddy · Moderator

Yup. A second request from your doctor often gets a response from the insurance company. It's a game.

JimmyK · Guru

Loopy Lisa wrote:

"I m slightly stunned they want to give you Riba...."

Greetings;
I am putting this statement by Lisa with this one from John;
"I was suppose to have a liver biopsy last week. But the insurance changed something in there guidelines the day before. So they said there was no need."

Time and again we have seen Insurance, step in and over ride a Doctor often claiming pseudo-science as their back up when we all know it is the almighty dollar that drives them.
Riba is cheap. Bottom Line. Sovaldi is not effective as a Mono-Therapy so they chose Riba.
Keep in mind that is not to say it won't work, and John, do not go into this discouraged. But it is very indicative of your need to get and stay informed. This is where this Forum can really assist. Going into a Doctor unaware is in fact going up against an Insurance Company that employs folks who specialize in cutting cost. A less than aggressive Doctor against such means it is you that will be affected.
You have a case where your Doctor apparently wanted a biopsy and the Insurance Company denied coverage due to their guidelines. It does not appear the Doctor fought back. His or her job was then to justify the Order and get it approved. They (The Doctor and The Nurse) don't sound like fighters to me and you need to understand it is for YOU they are supposed to be fighting.
In my prayers brother.
JimmyK

Loopy Lisa · Guru

I too have/had a very high viral load, and moments of inflammation, that is the virus. My last count was over 15,000,000. I still got Daklazina/Daclatasvir and Sofosbuvir. I only need to take for 3 months without all the nasty side affects of Riba. I would ask the Doctor over the nurse, there is no reason to not get it, you're only an F2, that is mild fibroses, it reverses once the Hep C is cleared. There is no indication on your panels to use Riba at all, and the recommended medication throughout the world for Geno 3 is sof/dak. Side affects of Riba are not great, and with Sof/Dak, you don't get much side affects at all. Please do question this as there is a big difference between 3 months and 6 months, and the side affects too.

I m slightly stunned they want to give you Riba....

-- Edited by Loopy Lisa on Friday 22nd of July 2016 05:47:01 AM

Observer · Guru

Welcome John,

We are living in a wonder age, when I found out I had HCV the treatments were awful and the results were disappointing for most, now the treatments are manageable and the results are astonishingly good For most.

As everyone who's experienced it, the most important things about treatment are make sure you stay hydrated smile and to make sure you follow the drug protocal.. set an alarm, and take your pills at the exact same times everyday.

hcv is a very clever or determined virus and you don't want to give it a chance to mutate..so every 12 hours you need to take your meds!

This forum is filled with lovely caring people that will help you through your treatment.

best to you John from Alabama

Alison from Vancouver

Sydhanrahan · Guru

Hi John,

drink the water, take the tablets, watch the sea horses, build the turtle box and try not to worry. ( I think I set a record in denial re Hep C, having contracted it before science knew it existed, let alone had found a cure for it, I just kept on trucken. Sure wish I'd pushed harder for these new DAA's when they first appeared on Australian shelves, but you can't turn back the clock.) From where I'm standing, you are comparatively lucky - your liver should show great signs of improvement because you're only F2. Finish this treatment and it will most likely work, if not, you will have other options.

Take care,

Syd

Ivery · Veteran Member

I went today and asked about other meds. But the nurse practitioner who was there said she didn't want to change the meds. Yes there is some big inflammation going on she said. I start my first dose in the mourning. And go back in 2 weeks. Then 4 weeks after that.

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