The time has come

[rk]

I knew I had Hep C a few years ago. Went to a gastro & he suggested I wait for newer drugs. Due to age & not wanting a rough treatment I waited. In June of this year I had blood work & A FibroScan, it come back F3. I am geno type 2. I guess the wait was being advanced enough for insurance coverage.

I am not positive that will be the case. I have United Health Care Plan2, a Medicare advantage plan. I have been referred to another Gastroenterologist on September 6/16. I will be under his care during treatment. I do not know what treatment that will be, what drugs or financial obligation. Its a bit scary not knowing & the 30 day wait.
I am concerned about my low platelet count 88 (I take Xarelto 20mg). Maybe I should get a lower dose 15mg since there is no anticdote. I bruise tripple easy.
I take a multi vitamin w iron 12 mg. I hear hep c & iron is not a good thing?

So I decided to join this forum & hopefully gather some tips on how to proceed.
I know my insurance plan lists Epculsa formula however it would have to be changed to a tier 4. Even if that happens I still do not know what my insurance will cover. Looking up the price I saw $99,000.00 thru a local pharmacy. I am way in front of myself, I do not know what will be used. However 99k is insane.
I appreciate any help or tips. I may have or find more numbers on blood count but will date back to June 16. Thanks for listening.

[Philadelphia]

Hi and welcome aboard.

I can't offer any wisdom on your insurance questions, as I live in Australia and we do things a bit differently over here.

In terms of medical stuff, your platelet count may be an issue in regards to them keeping an eye on you but I'm not aware of these drugs having a specific effect on platelet count - if your platelets drop it's generally because of other reasons, such as sequestration or liver damage.

There's a lot of people here with bucketloads of knowledge, so ask all the questions you need.

I know the waiting sucks, but it's really all you can do right now.

[Lynn K]

Hi and welcome

With a result of F3 that is as far as insurance is concerned the same as F4 aka cirrhosis so you do have enough liver damage you should have no difficulty in being approved for treatment but that is all on your insurance rules and what ever may be your copay.

My 24 weeks of harvoni cost around 190,000 dollars but with insurance and copay assist I paid 5 dollars for each refill so my cost was 30 bucks.

I would ask your doctor about the cause of your low platelet count. From what I just read you should not adjust your dose of Xarelto without doctors permission they may be able to treat your low platelet count a different way. Also yes with liver damage excess iron can also cause liver damage and iron does not help with blow platelet count anyway it is more used for low hemoglobin levels (HGB) not low platelets.

With advanced liver damage of F3 you should consult with your doctor about any and all medicines you are taking it considering taking. If you take OTC pain meds and especially as you take Xarelto you will need to be cautious and likely not take aspirin or NSAIDS like Aleve etc as they can increase bleeding risk and probably only take Tylenol for ache and pain at correct amounts no more than 2000 mg per day but definitely ask your doctor about this.

Anyway you likely will be approved for treatment approvals have been getting easier for more patients now and with your F3 status it should be fairly easy.

Also if you drink, stop. Not even a glass of wine with dinner occasionally your liver can't afford it.

Good luck and come back with your questions we will try our best to help however we can.

Lynn

[rk]

I had a long reply and somehow got logged off in the interim so it was lost. Any way to prevent that from happening? Meanwhile I have to go but will be back. Thanks for the reply's. Rod

Probably have to copy & paste from notepad or word.

[Baxter]

I had a long reply and somehow got logged off in the interim so it was lost. Any way to prevent that from happening? Meanwhile I have to go but will be back. Thanks for the reply's. Rod

Probably have to copy & paste from notepad or word.

Hi, Rod... do you have "always stay logged in" or whatever the wording is on your login?

[rk]

Hi, Rod... do you have "always stay logged in" or whatever the wording is on your login?

No I don't Baxter. I may have been able to save in my browser but did not. Its ok, I will remember to copy before I post so all is not lost. Thanks

[rk]

Lynn K,

I avoid OTC medications and if I do in very low amount. Things like aspirin are blood thinners and a no no taking Xarelto. If I take Tylenol it is far below 2000 mg. I will to try to get my iron naturally rather than a supplement. Thanks I think I read that but wanted to be sure.

Regarding OTC is organic Milk Thistlle ok or common to help clense liver? I will not be seeing any doctor before my appointment so I am curious. At this point I am in the waiting game and any tips before hand is appreciated. Meanwhile I will continue to read. Thanks Rod



 

[Lynn K]

You will hear a lot of opinion about "natural" things like milk thistle.

Personally I have seen no evidence of any effectiveness for milk thistle. The best I can say is it is likely not harmful. But I don't think it does anything really.

Also there is no such thing as a "liver cleans" the best you can do for your liver is eat what is called a heart smart diet which is also liver smart. More fruit and vegetables limit processed foods and minimize sodium.

I wouldn't waste my money on milk thistle or similar. Others will disagree with me.

Do your research and make your own decision.

Just one last comment most of us here refrained from anything we absolutely did  not have to take while on treatment in order to avoid having any impact on treatment. Whatever you decide you would like to try just don't take while taking hep c medicines.

Best of luck to you

[rk]

Very straight & to the point, just what I like, thanks. When I see any doctor I take a typed list of medications & any herbs. Not being on the same page may be critical.

I am also curious what anyone with Type 2 took for a cure or a link for medication & types. Thanks

[KimInTheForest]

I am also curious what anyone with Type 2 took for a cure or a link for medication & types. Thanks

Hi rk. Here is a link for the current recommended treatments for the different gentotypes:
https://www.hepmag.com/basics/hepatitis-c-basics/hepatitis-c-treatment-naive-recommendations

You will see that the 2 treatments recommended for Geno 2, treatment naive & with no cirrhosis are:

      Daklinza + Sovaldi
or:  Epclusa for 12 weeks

Good luck!
kim

[rk]

Hi Kim, Thank you for the info. I wanted to read up on side effects etc. Now its a waiting game that makes me very concerned. At this later stage it makes me wonder why they waited so long. There was human errors also which did not help. I'll try to stay positive but its not easy. The idea of its progressing while I am on hold - - well I am sure the many before me had those feeling as well. Thanks again, Rod

[Philadelphia]

Welcome to the waiting room. We spend a lot of time in it. Waiting for treatment, waiting for results, waiting for our first UND, waiting for the halfway point of treatment, then the end ...

Waiting for our EOT results, then our SVR12 results ...

We get really good at waiting.

Come, take a seat in the waiting room. Fancy a magazine?

[rk]

Ok I have read all the magazines. lol Yesterday I called for a copy of my blood work. Would it help if I posted those results? By that I mean to have more knowledge of how far its advanced other than just F3. My viral load use to be 10 to 12k very low but last I saw maybe over 100k. I know that means little, just curious. Plus not sure what numbers may help.

[Baxter]

Post 'em up! Some of us have been studying this stuff for so long, it's not uncommon that we can pick out a clue or two from some of the numbers. I fact, I would say that many of us are more knowledgeable than our doctors' staff, sad to say.

[rk]

Will do when I receive them. Thanks

[Lynn K]

Really though blood tests have little to no correlation to severity of liver disease. People can have high ALT and AST and have no liver damage or normal levels and have extensive liver damage.

For example in my case as I am cured of hep c my liver is no longer being attacked and injured every day by hep c and my ALT/AST are in normal range but I still have liver cirrhosis which really the only blood test I have out of normal in my platelet count caused by cirrhosis which has caused some portal hypertension resulting in spleen enlargement and the spleen to sequester platelets.

In order to determine if you have progressed to F4 cirrhosis the only tests that can indicate this are liver biopsy, Fibroscan, and the fibrosure blood test. Abdominal ultrasound can provide some insight but not the first choice in diagnosis of cirrhosis.

Anyway best of luck to you

Lynn

[rk]

I got to thinking and started to realize how much you all have been through or may be going through. I admire your courage in what can be very difficult times. I say that because for the last two weeks my anxiety level has been through the roof. I have 10 days until my first appointment which will hopefully lead to treatment and a cure. My sleep pattern at best is extremely poor. I seldom slept great but now anything over 4 hours is a blessing.

This morning I decided write, however I feel weak because many of you have already endured this plus so much more. I say this because I broke down once last week then today and took 5 mg of Diazepam. I really needed help to mellow out. I read elsewhere that a lady was overcome with anxiety. It was hep-c related. She decided assistance with stress was near as important as treating the disease with moderation of course. Either will take its toll so I chose to do the same.

After my first visit I think a lot of my anxiety will be relived. I really want to know how far it has progressed and prognoses on being cured. I'll need current blood tests and another appointment. Hopefully his staff will keep me up to date since he is only there two days a week. He travels in state to help surrounding areas. This is an unknown part to to me and also another area of concern.

I thought I would hold up fairly well. It appears not but I will hold on just like you, there is not another option. What do you think about my thoughts of a little help, in moderation of course.
Thanks, Rod

[Baxter]

I thought I would hold up fairly well. It appears not but I will hold on just like you, there is not another option. What do you think about my thoughts of a little help, in moderation of course.

Hi, Rod. Thanks for sharing all that.

Two things. First of all, you will hold up well - not just "fairly well," but very well. With very, very few exceptions, people rise to whatever they have to rise to. Thing is, though, everyone has to follow their own path to that point of balance and acceptance. Everyone's path is somewhat different, but one thing that doesn't change is that every one of our paths lead through the same stages - so every single one of us has been where you are now. All of us.

What's happening to you is that the reality of your situation has just "hit" you in a certain way for the first time. I'm pretty sure that every single one of us has gone through the exact same transition. Each of us has manifested it in somewhat different ways, and some of us get to certain points on the journey sooner or later than others do - for some people, this stage comes almost as soon as they're diagnosed, and for others it takes months or even years to really penetrate. But we all went through the same stage you're going through, and we all found our way. You will too. That's just what people do.

Second... as far as what you need to do to get through this stage, well - you need to do whatever you need to do. If you need a little help, you're not the first by any means. The important thing is that you recognize whatever it is you need to do to get through it, and then do it, no matter what you think the stigma may be. That's not weakness, that's strength - the strength to swallow your pride and your prejudices and do whatever you need to do to win. Sometimes your mind just needs a rest to break the endless loop of scary, negative emotions, and using some sort of medication for a period of time allows you to "reboot" your operating system. It's like when your computer has background scripts running and nothing's working right; you just have to close everything down and start over.

You're going to be fine. Honestly. Sometimes the biggest thing you have to fear really is the fear itself, and once you get past that, you'll adjust just fine. Trust me. It's extremely rare for anyone to be completely and permanently tipped over by this, and you do not at all sound like the kind of person who is in danger of that.

[rk]

Thank you Baxter, I really appreciate your input. It ties right in to my thoughts on this new adventure. I think stress & anxiety, if not controlled can be very detrimental. It hit me once I realized what others went through plus what others are going through.
I tend to overthink what could be complications, like insurance and other health problems. When I do that I try to keep busy so the effect is less. It works to a degree but seldom leaves my mind.

It wakes me early, so with little sleep I carry on until I reach my limit. Last week it was a blessing, this week not so much. If I feel it does not help then I will abstain.

So thanks for your thoughts, outlook and opinion. It won't be long after my visit my perspective should improve. Of course new ones will happen but at least I will be in the door with better direction.

I am not sure of appointment length but with limited time one of my worry's is asking the right questions. The most important to me is how advanced am I? I will need another blood test & probably a scan. I will do more research but is there a list of pertinent questions to ask? I may overlook something obvious which I do not want to do? Thanks Baxter and everyone for your continued help. Rod

[Baxter]

Rod, did you ever see "Shakespeare in Love?" Remember Geoffrey Rush's character? Throughout the entire movie, events kept spiraling out of control, and every time things seemed hopeless, Geoffrey Rush would say, "Don't worry - it'll all turn out fine!" And people would stare at him in amazement, and ask "How?" And Rush would just say, "I don't know - it just always does!" And he was right every time.

Obviously, real life is not a romantic comedy. But at the same time, there's a lot of truth in that. Yeah, what lies ahead of you has a lot of moving parts, a lot of problems that you don't know how to solve yet. But you don't need to know how to solve any of those problems yet - you don't need to know how to solve them until it's time to solve them, and when you get to that point, you'll find ways to solve them one at a time. That's the way everyone here has done it, and it'll work for you too.

You're going to be fine. You'll take this one step at a time, and before you know it it will all be over.

[crabby old guy]

Rod,
Believe me you will make it through this. A lot of people don't relies how strong they really are until faced with something like this. Before you know it you'll be halfway through treatment and then you'll be on here posting the "YE HA END OF TREATMENT" Just try and take what ever problem comes up and decide if you can do something about it or if it's out of your control. As far as how advanced you are I wouldn't stress about that now, you can't change it, the doc will put you on the right meds. Slay The Beast First. I have 6 days left of a 24 wk treatment, there were plenty of times when I thought I couldn't do it but everyone finds a way to make it through. Later in life when another shit storm happens we can look back at this fight and relies we can make it through anything. Think of it this way, you may start treatment and we won't hear from you very often because its going so smooth.

As far as questions to ask the doc. How often do you go for blood work- Who do you call if you have a question- Write down every medication your on, over the counter also.  If you have a question or just want to piss and moan about something, that's why everyone is here.  Best of Luck!

[rk]

Rod, did you ever see "Shakespeare in Love?"

I did not we were from different zip codes! Ha Ha - Attempt at humor.

Baxter I know a step at a time is how problems are solved. However until I get in the door its not easy to relax. I needed to write something this morning just to help level out. I thought it best rather than do nothing and remain keyed up. I kept busy all day and now just winding down. It took a while to get in this condition and it will take a while to be cured. Thanks

[rk]

. Slay The Beast First. I have 6 days left of a 24 wk treatment, there were plenty of times when I thought I couldn't do it but everyone finds a way to make it through.

Congratulations old guy, good to hear your journey is near the end. You must be starting to feel a sense of relief. I am an old guy too. Thanks for the tip on some questions. I will have every drug & vitamin plus all my doctors and pharmacy's printed out in an easy to read format. I definitely do not want any more complications for lack of information. Like I told Baxter I will be fine, I just tend to stress even if they are out of my control.
I come built that way! I would prefer a different control module but it was not available at the time. Thanks for the reinforcement, I usually try to stay busy and direct my thoughts elsewhere. I Look forward to hear you have been cured. Once again I appreciate your thoughts. Rod   
 

[rk]

I am curious who has been treated & cured with Sovaldi + Daklinza for geno type 2?
If so will you comment on long term effects? I think I'd rather try epclusa but insurance may not cover it. Or possibly go another route besides insurance?
My first appointment is Tuesday so any help or options are appreciated. Thanks Rod

[Lynn K]

Hi rk

I am sure others treated with those meds will chime in soon but really no one has long term information yet these meds were only just approved not even sure anyone has finished treatment yet or just barely so.

But anyway best of luck
Lynn

[Philadelphia]

Sovaldi and daclatisvir have been approved for use in Aust since early March. Getting good results thus far.

[rk]

Thanks Lynn,

I never checked and assumed both had been out for a while.

[rk]

Thanks Philadelphia,

Its always good to hear anything positive. I was not sure where to search but your from there if I recall?

[Philadelphia]

I am indeed. Can't you tell from my accent? Lol

[Gaj]

Hi rk,

They have both been approved for use in Europe for two years now so you will more likely find information about them from over there at the moment though less data available on genotype 2 due to lower numbers.

http://www.infohep.org/Hepatitis-C-treatment-factsheet-Daclatasvir-iDaklinzai/page/2911744/

[rk]

I am indeed. Can't you tell from my accent? Lol

I knew it wasn't New York mate! lol

[rk]

Hi Gaj,

Thanks for the link. It seems the US usually lags in health care.

I had my first appointment today & had blood work done. It was a good visit and my Doc thinks he will get me approved for Epclusa. He said Sovaldi + Daklinza was good but Epclusa  is best and has a 100% cure rate for geno type 2.

Since I am not being treated as yet I guess I should keep posting here? I do not want to break any rules, like posting in the being treated forum. Maybe you or someone can clarify? thanks

[rk]

I forgot to mention the Doc said under a microscope it may look like stage 4. He thinks its not there as yet. I noted my previous labs & the Liver stiffness at 10.1. I did not go to in-depth other than effect from meds and diet & who to call. He thinks approval in three weeks. If not his staff knows how to handle Ins company's. He sounded very positive & that was good to hear. Next appt Nov 8, 2 months and should start treatment before then. Thanks Rod

[Lynn K]

Well stage 3 and full cirrhosis F4 are not that far apart as far as insurance from what I have seen they treat F3 the same as F4 so congrats you are sick enough approval should not be a problem.

My platelet levels fell quite a while after I was diagnosed F4 so kind of surprised your doctor says you may not be there yet even with platelets as low as 88. I am just a patient but still to me a platelet count of 88 would say cirrhosis to me. Doesn't really matter though you are either early cirrhosis or very close to it at F3. So follow up and treatment are about the same either way...
Lynn