Good to hear from you, buddy. You've had your share of Riba and Interferon and deserve an easy treatment for a change. Sovaldi/ Ledipasvir is the one for you- good luck getting on it. It should only take a few months and you'll be joining us in the SVR Club. Cheers mate!
Bills said
May 21, 2014
Hello again everyone,
I've been off line for some time now, I decided to wait till October, Of course this is my favorite topic as well. Early this year I was on mission to be treated again. And ready for anything. And it sure is a mind game for me. I can't just sit here and wait. But I had to take a step back.
My view is the interfron / Riba / Incivek and a Trail (3) time relapsed. Should have taught me something. Geno 1 is tough and 25-30 yrs infected with cirrhotic make it worse. I have consulted a new Hep group. He appears to be leaning toward NO Interferon / Riba and has had alot of success with sovf Ledipasvir in trials. I just can't imagine myself fighting Insurance for a treatment that contains drugs I already relapsed on. I can't take another failed RX mentally One pill one drug company will be approved and should be easy to get approval for. I'm just to tired to experiment again.
I'm actually just wondering how the final trials for the wonder drugs hold up for us Cirrhotic relapse are doing.
And a special hello to all my good friends here I can't wait to pick up the sword again. The Dragons going to die this time.
Good luck and prayers to all
BS
patiently_waiting said
May 21, 2014
I just finished an interview with a potential employer. I need to change jobs but the timing could be better! I didn't expect to get an interview this fast. Depending on how well things go it looks like I may be starting a new job while on treatment. uggh. I hope the sides are minimal...I'm a little worried about the riba but I'm thinking it should be ok.
-- Edited by patiently_waiting on Wednesday 21st of May 2014 08:02:51 PM
patiently_waiting said
May 16, 2014
Tig56 wrote:
I experienced the exact same issues with treatment the first time I was on Interferon mono therapy in 96. It was the worst I've ever felt emotionally in my life. I was fortunate that Florida didn't have any bridges high enough to jump off, lol! Once I started an anti depressant, it passed fairly quickly. This time around I started an AD ahead of time and had an idea of what to expect. The ribavirin induced irritability was the most noticeable emotional issue this time and it was manageable. The one thing that stands out in my mind was how fast the irritation can escalate. I got mad at a box of instant mashed potato flakes, the box kept falling out of the cabinet and after several attempts to make it stay where I put it, it fell again and I decided to throw it at the wall in a small pantry area. It was ugly and I'm still cleaning up potato flakes. Those little suckers can really fly!! Just understanding how fast a small irritant can become a large mess, is often enough knowledge to help you avoid it.
Tig
The ADs did nothing for me unfortunately. In fact they just made it worse. I tried several. I can relate to your story about getting mad. I had that feeling a few times but more than anything it was a feeling my world was coming to an end. I think even as bad as it was though I could do it again for a shorter time.
Tig said
May 16, 2014
I experienced the exact same issues with treatment the first time I was on Interferon mono therapy in 96. It was the worst I've ever felt emotionally in my life. I was fortunate that Florida didn't have any bridges high enough to jump off, lol! Once I started an anti depressant, it passed fairly quickly. This time around I started an AD ahead of time and had an idea of what to expect. The ribavirin induced irritability was the most noticeable emotional issue this time and it was manageable. The one thing that stands out in my mind was how fast the irritation can escalate. I got mad at a box of instant mashed potato flakes, the box kept falling out of the cabinet and after several attempts to make it stay where I put it, it fell again and I decided to throw it at the wall in a small pantry area. It was ugly and I'm still cleaning up potato flakes. Those little suckers can really fly!! Just understanding how fast a small irritant can become a large mess, is often enough knowledge to help you avoid it.
Tig
patiently_waiting said
May 16, 2014
Tig56 wrote:
Hi PW,
That was my question, how bad were your previous reactions to Ribavirin? If they were tolerable, I would seriously consider the addition of it. If you're exhibiting indications of increased fibrosis, again I would seriously consider it. I know Wayne is on a 16 week program and while that's not a common extension, that also may be a worthwhile consideration with or without Ribavirn in the mix, but imo certainly should be, if you will be on the 12 week program. I would want to take advantage of every possible opportunity that increased my odds of success. I had some issues with Ribavirin, but I think the majority of negative sfx were due to Interferon. Riba has it's known problems with rage/irritable and the skin disorders from either sun sensitivity or the rash. But all of them are generally well tolerated or easily treated. The advantage it provides with SVR rates, imo, make it an easy decision were I making it. Whatever your choice, I'm pleased to hear that your doctor has agreed to recommend tx with these two blockbusters. I know the future offers some very good tx advancements and possibilities, but I believe these two drugs offer you an excellent chance of ridding yourself of this disease now. Good luck, the opportunities before you are excellent whenever you decide to treat.
Tig
My issues were mental more than anything - anxiety, depression, irritability. It's not 100% clear how much of this was riba vs interferon but in any case I'm prepared to deal with it. I expect I will be taking the Riba based on what my doctor has said and how I responded to him. It's worth it to me to deal with the riba sides and treat now as opposed to waiting. In fact even if I had the same side effects as I did on interferon, I think I'd still want to go forward, considering it's only for 12-16 weeks now. I was ok even last time after 3-4 months. I think it was around the 20 week mark where it started getting rough.
Tig said
May 16, 2014
Hi PW,
That was my question, how bad were your previous reactions to Ribavirin? If they were tolerable, I would seriously consider the addition of it. If you're exhibiting indications of increased fibrosis, again I would seriously consider it. I know Wayne is on a 16 week program and while that's not a common extension, that also may be a worthwhile consideration with or without Ribavirn in the mix, but imo certainly should be, if you will be on the 12 week program. I would want to take advantage of every possible opportunity that increased my odds of success. I had some issues with Ribavirin, but I think the majority of negative sfx were due to Interferon. Riba has it's known problems with rage/irritable and the skin disorders from either sun sensitivity or the rash. But all of them are generally well tolerated or easily treated. The advantage it provides with SVR rates, imo, make it an easy decision were I making it. Whatever your choice, I'm pleased to hear that your doctor has agreed to recommend tx with these two blockbusters. I know the future offers some very good tx advancements and possibilities, but I believe these two drugs offer you an excellent chance of ridding yourself of this disease now. Good luck, the opportunities before you are excellent whenever you decide to treat.
Tig
patiently_waiting said
May 16, 2014
Isiscat2011 wrote:
Hi PW:
It is such a good feeling when you at least know that you and your doctor are on the same page. I have noticed that, unless our requests are unreasonable, most docs will go along with our treatment decisions. Getting the dialogue going can be a challenge because they are simply so busy. Having your doctor on board is necessary for the insurance company to pay.
There are certainly some instances of insurance companies paying without proof of advanced liver disease; we have a few people here on the S/O or S/O/R combos who are in early stages of fibrosis. And, what the insurance company will accept as proof is an open question as well. Will they accept a fibrosure test result or want more--a biopsy or fibroscan?
Only time will tell, but I don't particularly believe that liver disease does not factor into the insurance company decision, and it certainly isn't beyond the realm of possibility that the agent you spoke with was either mistaken or being less than honest.
In any event, this is a step forward, and you may just get what you want. One thing is for sure: most people have to fight like hell to get what they want and even what they need where expensive medical care is concerned. It just doesn't seem right but it is what it is.
Good luck and please keep us updated!
I'm prepared to fight like hell if I have to. I may not get anywhere but I'm sure not going to be passive about this. It wouldn't surprise me at all if the guy I spoke to gave me inaccurate or incomplete information. He seemed to be reading from something but wouldn't give me anything in writing. I'd like to think if my doc thought we'd have a problem getting approval he would have said something, but who knows. Anyway, one step at a time. Thanks for wishing me luck - I may need it.
Isiscat2011 said
May 16, 2014
Hi PW:
It is such a good feeling when you at least know that you and your doctor are on the same page. I have noticed that, unless our requests are unreasonable, most docs will go along with our treatment decisions. Getting the dialogue going can be a challenge because they are simply so busy. Having your doctor on board is necessary for the insurance company to pay.
There are certainly some instances of insurance companies paying without proof of advanced liver disease; we have a few people here on the S/O or S/O/R combos who are in early stages of fibrosis. And, what the insurance company will accept as proof is an open question as well. Will they accept a fibrosure test result or want more--a biopsy or fibroscan?
Only time will tell, but I don't particularly believe that liver disease does not factor into the insurance company decision, and it certainly isn't beyond the realm of possibility that the agent you spoke with was either mistaken or being less than honest.
In any event, this is a step forward, and you may just get what you want. One thing is for sure: most people have to fight like hell to get what they want and even what they need where expensive medical care is concerned. It just doesn't seem right but it is what it is.
Good luck and please keep us updated!
patiently_waiting said
May 16, 2014
OldenSlow wrote:
Hi PW,
I of course can't speak to your past intolerance issues with ribavirin. You would know best on that one. I do know that if I had to begin tomorrow another 4 months of tx utilizing Sovaldi and Olysio, I would want the riba. The lack of followup data using Olysio as the mop up DAA, particularly for cirrhotics, would make me too nervous not to use it. This will all change over time, as you well know. Maybe it is overkill, but we can only work with the information we have. A year from now maybe we'll find out otherwise, and I'll be kicking myself for being such a nervous nellie. Who knows?
Best of luck to you, in any event.
wayne
Thanks for that perspective, Wayne. My tolerance issues weren't so severe that I'd want to risk the outcome. I responded to my doc basically saying I'm fully on board whichever way he wanted to go with it. Now the next hurdle is getting insurance to approve, then I'm on my way.
-- Edited by patiently_waiting on Friday 16th of May 2014 07:55:49 PM
OldenSlow said
May 16, 2014
Hi PW,
I of course can't speak to your past intolerance issues with ribavirin. You would know best on that one. I do know that if I had to begin tomorrow another 4 months of tx utilizing Sovaldi and Olysio, I would want the riba. The lack of followup data using Olysio as the mop up DAA, particularly for cirrhotics, would make me too nervous not to use it. This will all change over time, as you well know. Maybe it is overkill, but we can only work with the information we have. A year from now maybe we'll find out otherwise, and I'll be kicking myself for being such a nervous nellie. Who knows?
Best of luck to you, in any event.
wayne
patiently_waiting said
May 16, 2014
My doc called me back, after I had sent a follow-up email to him pushing harder to treat now, and he agreed! I know I may still have other hurdles, but it looks like I'll be starting Sovaldi, Olysio, and maybe Ribavarin soon. He's mentioned that Ribavarin would likely be included. I'm not sure how much or if at all I want to push back on that - I don't want to press my luck. My suspicion though is that he wants to include it to err on the side of caution, since there doesn't seem to be a lot of data to go one way or another, but I did have issues tolerating it in the past. I think maybe I will just remind him of my past tolerance issues and ask if he really wants me to take it.
Isiscat2011 said
May 9, 2014
That sounds good, PW. It is a long and arduous journey for most but it will get easier both for us and for those who are diagnosed after us.
I met with 4 different specialists (2 hepatologists, 1 gastro, and 1 infectious disease) before I arrived at a specific plan, and, it is a fluid process with things changing all the time in the area of HepC tx.
Just make sure you take time to relax and enjoy what you can along the journey too.
patiently_waiting said
May 9, 2014
Isiscat2011 wrote:
That's interesting. And the written policy probably leaves the question open so they can make it up as they go along.
Like I said, I would go another way with this, but the choice is yours and I wish you the best with your decision. My focus would be in figuring out how my liver is doing, i.e. fibroscan, and then getting the best SVR odds.
San Antonino could be nice this time of year, and also offer a little family bonding time, but that isn't my call.
When I went to Canada for my fibroscan my mom came with and we had one of the best (mini) vacations we ever had. Arrived in Vancouver at midnight, the hotel had given away our room, so they upgraded us to the 2 bedroom Penthouse suite where we stayed for 3 days ordering room service and goofing off together. Sweet. Did a little sight seeing too, of course.
Isiscat, I will be doing that as well. I'm going at this on multiple fronts. My next step though is to talk to another doctor and I've already reached out to one. I'm hoping I can get the doctor to order a Fibroscan so I'm not paying for all of it out of pocket.
Isiscat2011 said
May 9, 2014
patiently_waiting wrote:
Just as you suggested, Isiscat, I called to ask them about their policy on authorizing Sovaldi. After being transferred a few times, the gentleman I spoke to explained that there are a number of things they consider, but fibrosis stage/cirrhosis is not one of them.
That's interesting. And the written policy probably leaves the question open so they can make it up as they go along.
Like I said, I would go another way with this, but the choice is yours and I wish you the best with your decision. My focus would be in figuring out how my liver is doing, i.e. fibroscan, and then getting the best SVR odds.
San Antonino could be nice this time of year, and also offer a little family bonding time, but that isn't my call.
When I went to Canada for my fibroscan my mom came with and we had one of the best (mini) vacations we ever had. Arrived in Vancouver at midnight, the hotel had given away our room, so they upgraded us to the 2 bedroom Penthouse suite where we stayed for 3 days ordering room service and goofing off together. Sweet. Did a little sight seeing too, of course.
Fireman Rob said
May 9, 2014
PW,
My insurance company said the same thing. At least they are consistent. Lol- however it still leads me to believe Ledispavir will be the same story.
Thanks again for explaining your situation.
patiently_waiting said
May 9, 2014
Rob, Isiscat, Matt, thanks for your replies. I have an update...I just got off the phone with Cigna. Just as you suggested, Isiscat, I called to ask them about their policy on authorizing Sovaldi. After being transferred a few times, the gentleman I spoke to explained that there are a number of things they consider, but fibrosis stage/cirrhosis is not one of them. He said primarily it was based on whether interferon can be or has been taken and whether the patient is able to take it. He said that wasn't the only thing considered but I asked him twice about whether fibrosis/cirrhosis condition is considered and was told "no". I'm going to talk with another doctor or two and see what they have to say.
Matt Chris said
May 9, 2014
Hey PW
Your Doctor is talking the latest view in the way both the Medical side and the Insurance side is making decisions on who gets ASAP treatments with the current all orals S&O.
He's just saying with your current liver status you would likely be denied.
Since you live in the Dallas area you could drive to San Antoine to the TLI (Texas Liver Institute) and get a Fibroscan. I was just there in April and had an appointment with Dr Lawitz one of the foremost Doctors and Hep-C clinical trial sites in the world. The Fibroscan takes 2 minutes is painless and cheap. That will give you an accurate reading on your fibrosis. The TLI has done most all of the trials including Gilead's, Mercks, J&J, Abbvie and can give you great insight. When I saw Dr. Lawitz he recommended to wait for for Gilead's combo and I am F4 and could qualify for S&O but my circumstances are quite a bit different than yours. If you want to know more you can private message me.
matt
Isiscat2011 said
May 8, 2014
P.S. You may have already figured this out, PW, but the reason I am suggesting you call your insurance company before doing anything else is that, in the somewhat unlikely event your insurance company is stupid enough to accept fibrosure results and they will pay for F3-F4, you might want to hold off on the fibroscan or biopsy. If your insurance company will pay then I'd be very surprised if your doc would not prescribe S/O.
My choice would be to make my decision based on the actual status of my liver, (not the fibrosure version) and if I could wait for S/L then I would, but I get that you want to treat ASAP.
-- Edited by Isiscat2011 on Friday 9th of May 2014 01:39:18 PM
Isiscat2011 said
May 8, 2014
patiently_waiting wrote:
This answer makes me pretty uneasy as they aren't medical reasons. It's possible he just didn't want to get technical, but I don't know. I don't think the fact that I'm looking at another ~7 months out of my life being infected with HCV is being taken into account. I also don't think the risk of job loss is being considered. Based on the reasons I was given I can't help but suspect the primary factor is cost. _________________________________________________________________________________________________________
He also gave you medical reasons, although I'm not sure he has enough information to determine how your liver is doing, since you have had neither a fibroscan nor a biopsy. For that matter you don't know the status of your fibrosis either. You also haven't had your IL28b checked but that could be because he knows you won't do Interferon.
He is right that cost IS a primary factor. If your insurance company won't pay then you have a problem and your doc may not be able to fix that problem even if he wants to. His reasons for treating off label must be justified.
I would begin by calling my insurance company to find out if they would even pay for S/O and under what circumstances (unless your written policy spells it out). When you talk to them there is no reason for you to say much--you ask the questions. If insurance won't pay will patient assistance programs pay? That is your next call.
People who can prove cirrhosis appear to be in the best position for getting S/O treatment paid for now. Cirrhotics' doctors also have a much better case to make when they get involved with trying to get approval and, thus, are more likely to fight for them. That trend may continue with the S/L until the costs come down.
You can make an appointment with another hepatologist, and that isn't a bad idea because you should have a doc you are comfortable with, but how long will it take to get an appointment? Additionally, I don't think many docs are going to put up a fight to treat off-label where there is no evidence of cirrhosis and where patients will have many options in the near future.
You need more information before you can make a decision. Bottom line, this isn't likely to happen fast. Also, what is the "risk of job loss" about?
Fireman Rob said
May 8, 2014
Hi PW,
It sounds like there was some good news with your doctor visit today but I feel exact same way in regards to getting treatment ASAP. I wish I could just hang out and wait also but mentally, I can't! For me personally, I made the decision to push for Sovaldi and Olysio which is two pills a day.
There are organizations that will supposedly help and that's my next avenue to take if negotiations between the drug companies and my insurance don't work out. I have little confidence that my insurance will view the soon-to-be-released Ledispavir combo any differently than Sovaldi/Olysio that's available now.
Furthermore, Janssen has applied to expand Olysio's label and is in the process of expanding what they started in the phase three clinical trials with Gilead (Sovaldi). With this news, the current, and off label rx will likely become FDA approved sooner than later with more participants.
Hopefully my current path works out but if not, at least I tried everything possible to get treated. It's good to hear your doc saying you have plenty of time and not to worry. Good Luck!
patiently_waiting said
May 8, 2014
I just got back from my visit with my doctor and he told me he wants to wait for the Gilead or Abbvie drugs. He said while my liver was enlarged and ALT/AST has been elevated, that he wouldn't consider it an urgent need to treat now unless ALT was at 500. He also said he didn't think I was in any imminent danger of advanced fibrosis. We have had neither a biopsy nor a Fibroscan done. The Fibrosure I did have done showed F3+ (see below), but he acknowledged it isn't reliable. He said though that by the results it did give along with other indications he isn't concerned about it advancing too far before I can get the other meds.
When I asked him what the reason would be for waiting instead of using what's available now he said it's because the insurance companies are difficult to deal with since it's two different companies and it's 5 pills a day vs 1. This answer makes me pretty uneasy as they aren't medical reasons. It's possible he just didn't want to get technical, but I don't know. I don't think the fact that I'm looking at another ~7 months out of my life being infected with HCV is being taken into account. I also don't think the risk of job loss is being considered. Based on the reasons I was given I can't help but suspect the primary factor is cost.
I plan to follow up with his office to make sure I didn't misunderstand the reasoning (it's really hard to discuss everything I'd like during our visits as it feels kind of rushed). If my suspicions are justified I think I will have to talk to someone else. I hate to burn a bridge with this doctor (not sure that it would but probably) because he has a great reputation, but if that reputation isn't translating into a cure ASAP for me then I don't know how it's of any value to me. I'd be very interested to hear what some of you would do if you were in my situation.
mallani said
May 2, 2014
Hi Mary,
CT is useless for liver fibrosis unless you have progressed to the decompensated stage of cirrhosis. Mine have been boringly normal since 1990, despite progressing to cirrhosis during this time. MRI is a little better, but the changes are subtle.
My current policy is to have CT alternating with MRI every 6 months, as I am very difficult to Ultrasound. This is only to check for HCC, post SVR. Cheers.
Mugsy said
May 1, 2014
Well, Tig, it was reading the AASLD treatment guidelines, Isiscat's questions posted to me here on this site (thanks, Isiscat, you really made me question my first decision) and realizing I had a couple borderline disqualifying health issues for INF that made me rethink my decision. I think the fact I am three hours away from my specialist and with the low platelets already also gave me second thoughts.
My doctor spoke with me for 15 minutes via phone on Monday and we discussed all my options and he says he respects my decision. I will go in for my regularly scheduled every 6 months ultrasound and have my blood work checked, too. He says because of my cirrhosis I should be towards the top of the list for access to the new treatment. Maybe I am making the wrong decision, only time will tell, right?
How I am feeling? Tired, itchy, achy, icky, cranky like most of us.
PS My fibrosure test was wrong, too. My doctors seem to think that a CT scan is better at determining liver condition than biopsy.
Isiscat2011 said
Apr 30, 2014
PW: The fibrosure test is not particularly reliable for staging fibrosis. Mine was wrong. I'm glad Malcolm already pointed this out because I am beginning to feel like the forum skeptic. I don't know where you are located but you can locate a fibroscan facility in the US at: http:// www.fibroscan502touch.com/find-a-facility.
I had my fibroscan in Canada, before they were FDA approved in the US, and it cost about $400 out-of-pocket. I understand they are actually a bit less expensive in the states. Insurance companies are foolish not to pay for them as they cost a fraction of what a biopsy would cost but I've heard not all insurance companies do cover fibroscans yet. Still, it may cost you less out-of-pocket than the deductible and co-pay would even if you do have to pay yourself. Well worth the money, IMO. They are easier than an ultrasound and considered highly reliable. Unless your doc has some specific reason for wanting to do a biopsy I would definitely go for the fibroscan.
As you are discovering, not all docs are created equally, particularly when it comes to knowledge and experience with HepC. If you are near a teaching facility, particularly one that has a gastro/hepatology dept, I would consider seeing a doctor there. Some of the teaching hospitals have done extensive HepC clinical trials and they understand this stuff best. Having said that, it really is necessary to be knowledgeable ourselves, and to be willing to be our own advocates, when it comes to HepC. Find the best doc you can but also stay informed yourself. Good luck.
JLynch30 said
Apr 30, 2014
I was told this was not a try it now are left out in the future. No solvaldi resistance has been reported so i can try it now and again in the future. That is why I said yes.
Tig said
Apr 30, 2014
Hi Mary,
Can I ask you why you decided to delay? Was it strictly the difference in medication, time, risk of side effects or rate of success? Perhaps a little of everything? I'm curious about how you feel and would appreciate it if you would share how you're feeling. If you choose not to, I'll understand. The future treatments look very promising and I wish you the very best of luck.
Tig
Mugsy said
Apr 30, 2014
I cancelled my INF/RIBA/Sovaldi treatment and will wait for winter and Ledipasvir.
patiently_waiting said
Apr 30, 2014
mallani wrote:
Hi pw,
My FibroTest (FibroSure) came in at 0.58 (F2) in 2008. 6 months later, I had my first Fibroscan which was 30.1 kPa ( F4). As I was F3-F4 on biopsy in 2000, the FibroTest was obviously wrong.
As FibroSure uses GGT as one of the parameters, the results are suspect.
Any result over 0.62 is called 'Grade 3- Severe activity' so don't fret over that. That is the ActiTest part of the FibroSure, that goes up and down with the ALT.
Obviously I'm biased, but I'd get a biopsy or Fibroscan. Cheers.
Thanks Malcolm. I wasn't aware FibroSure wasn't reliable. Frankly I'm highly disappointed that my doctor didn't know and didn't seem interested to know my level of fibrosis. When I take it upon myself to ask for a test to find out I learn later it's not a reliable test. Is this not his job and not mine? I guess I'm going to have to do a better job of researching these things on my own. Now for all I know I could be cirrhotic already. I really appreciate the help I'm getting from you and others here. In fact I'm starting to think without it I'd be screwed.
mallani said
Apr 30, 2014
Hi pw,
My FibroTest (FibroSure) came in at 0.58 (F2) in 2008. 6 months later, I had my first Fibroscan which was 30.1 kPa ( F4). As I was F3-F4 on biopsy in 2000, the FibroTest was obviously wrong.
As FibroSure uses GGT as one of the parameters, the results are suspect.
Any result over 0.62 is called 'Grade 3- Severe activity' so don't fret over that. That is the ActiTest part of the FibroSure, that goes up and down with the ALT.
Obviously I'm biased, but I'd get a biopsy or Fibroscan. Cheers.
patiently_waiting said
Apr 30, 2014
I just got my FibroSure test back. I have "F3 - Bridging fibrosis with many septa." Next grade is F3-F4. I'm also concerned about "severe activity." Here are the details...
Hi Matt. I did get some tests very recently and I just updated my sig. I'm still waiting on the results of the fibrosure test though...not sure why it's taking so long. If it comes back low I will probably be ok with waiting. I may not have a choice anyway. I hear you on the outcome being the most important thing. I would just prefer getting the outcome in September instead of early next year. :) You know what they say though - wish in one hand...
Matt Chris said
Apr 30, 2014
Hey PW
I don't know if you have had a lab report since last Nov 2013 but if I was you I would go to Lab Corp. or any of the walk-in Blood testing sites in the USA and get a current Liver panel and CBC test. Most of these labs also can test for ferritin levels as well.
With the wait at almost 5 months now before the Gilead combo gets FDA approval if you don't have a pressing need and have a lower fibrosis score I would wait. Remember its the outcome or result of the treatment that is the most important thing. I deal with this mental anguish its seems weekly in my own case. So I have to keep reminding myself that the outcome is the most critical item in debate.
matt
patiently_waiting said
Apr 30, 2014
Tig, you're awesome. Thank you for arming me with this information as I don't think I've been tested for that.
I don't know if he's sticking with interferon for insurance coverage/cost reasons or some other reason, but I'll find out next week when I talk to him. Gracie, good luck on getting in to see a doc. That must be frustrating to have to wait so long to even talk to someone. Rob, good to know what I may be faced with if I end up moving forward with this. I hope you get yours approved soon. JLynch, congrats on your UND and good luck keeping it.
I'll let you all know what I find out next week. Thanks for the replies.
Fireman Rob said
Apr 30, 2014
PW,
That's exactly what my doctor said initially. I was persistent with him and pushed for the Olysio/Sovaldi. He did write and submit the rx but getting access to that combo is a greatly different story. I'm two months in with a couple of insurance denials behind me and no meds in my hands. So who knows? It's definitely frustrating but I'm sure your time is coming sooner than later.
I like Tig's input. It might pay off to conduct more testing? Stay Strong Friend.
JLynch30 said
Apr 29, 2014
I decided to go on interferon again. I do not want to wait as i am f4. After 4 weeks i am undetected - BUT it does comeback for some. I will keep you all posted
Tig said
Apr 29, 2014
Hey PW,
Just wondering if you've been tested for the IL28b polymorphism? Since you've already treated and failed using INT/Riba and the simple fact that you don't want to treat again with INT, could provide your doctor with good reason to request the off label Sov/Oly Tx. If you test for an unfavorable allele, and with your dislike for INT, you should qualify and meet any appeal requirements. Just a thought.
Tig
Groupergetter said
Apr 29, 2014
For me the choice was simple. My office is scheduled to close at some point...not sure when. Without insurance getting the meds was much more an uncertain. Gotta make hay while the sun shines.
Gracie said
Apr 29, 2014
That's the question of the day isn't it? Did somebody say this was going to be less expensive than sovaldi olysio combo? I think I can wait, but like the rest of you who are waiting it feels like playing Russian roulette. Once you progress too far, the damage will be done. Although improvement is possible, getting rid of it sooner rather than later seems the best option. And it might not even be a choice for most of us. So expensive, and with less expensive options on the way, insurance companies are most likely going to tighten up on approvals. I don't even know when I can get in to see my hepologist again, we have a shortage of doctors here, and the wait could take months ....
.... So... Along with you ... I'm patiently waiting, not so patiently....
patiently_waiting said
Apr 29, 2014
I just heard back from my doc's office that he's telling his geno 1 patients that current treatments include interferon. I haven't spoken with him yet so it's too early to draw conclusions, but I expect when I go into see him soon that's the answer I'll get. No way I'm taking interferon again. Emotionally I'm chomping at the bit, but even rationally, there is risk in waiting. What if I lose my job? My enzymes have been elevated also and I don't want to sustain any more damage than I already have over the past 25 years. I don't have cirrhosis yet I don't think (still waiting for results) but I don't want to get it either. I didn't realize I had gotten myself so worked up about getting started, but hearing that today was quite a letdown. Maybe I chose the wrong nickname for these forums.
-- Edited by patiently_waiting on Tuesday 29th of April 2014 09:38:41 PM
patiently_waiting said
Apr 18, 2014
suziq wrote:
Enjoy your indecision--we didn't have those options for many years.
Trust me I did my share of following clinical trials over the past 25 years. I followed so many "silver bullets" that went bust in Phase 3 I lost count. I stopped following. I finally figured out that if something came out that was successful I'd hear about it. No point in putting myself through the emotional wringer. Finally we have the real deal. The light at the end of the tunnel is within reach and it is very exciting. You're right...this is a very nice "problem" I have in trying to choose between all these great options. :)
mallani said
Apr 17, 2014
18 months ago, I did a post about the ideal DAA. It has arrived, in the form of the Sovaldi/ Ledipasvir single pill.
For Geno 1 and 2, 12 weeks for non-cirrhotics, 24 weeks for cirrhotics , 12 weeks and 12 weeks with Riba for Geno 3 will give close to 100 % SVR.
How to pay for it is the problem. For some countries, this will take many years to accomplish.
Other DAA's will form a queue, depending on price. They will play a minor role. Olysio will go back on the shelf, with Victrelis and Incivek.
In the short term, cirrhotic patients will still die of HCC and cirrhotic complications, but essentially HepC is now curable. The problem remains how to identify the vast numbers of HCV patients that are still undiagnosed. This will happen slowly, and in 10 years, HepC will be like TB.
suziq said
Apr 17, 2014
Really enjoying this topic..
This is so wonderful!!!!! Reading about your deciding which drug to take and knowing that new drugs are on their way--with NO interferon and NO ribavirin. and short treatment times. And high SVR rates, as well
This is a dream come true for all of us who have Hep C. Enjoy your indecision--we didn't have those options for many years.
Whatever you choose, it will be for a short period and virtually side effect free. This time last year, I started my search for an interferon free clinical trial. Didn't have many options--and some trials refused cirrhosis and some had upper age limits. Felt so fortunate to even get a trial. Already it is different. And I am SVR without interferon.
Much luck to you all.
SuziQ
Fireman Rob said
Apr 17, 2014
Tough questions to answer, no doubt. I've decided that if I can get access to Sovaldi/Olysio now, I'll take it and be SUPER thankful. If not, waiting for Ledispivur is my next step.
For me, it's more of an issue of being able to work long hard hours and access to a Tx that fits that criteria.
Good Luck PW...
Alaska Fred said
Apr 17, 2014
All our needs are different and the decision to treat or wait ultimately is a personal one. My hematologist said he would prescribe Sov/Oly if I emotionally couldn't wait. I'm a null-responder to Incicek and am in early stage cirrohiss. He thought I should wait for Sol/Led so I'm waiting. Many thanks to all of you who open your hearts and share your experiences.
HR said
Apr 17, 2014
While taking Sof/Led, the person you are dating will not be able to tell. Look at the the posters on the Ion-3 trial that are not taking RIBA. Pretty much all have the same things to say- minimal if any sides. Good luck
patiently_waiting said
Apr 17, 2014
OldenSlow wrote:
"Is it worth it? Do I really want to go there with this person?"
I'm a private person by nature. I *never* want to have "the talk" within the time frame I'm obligated to. The whole conversation is a can of worms. Would I feel comfortable with the conversation eventually? Maybe. But not soon. End result is I don't date much since my divorce. There is a stigma, whether fair or not and like it or not, with this illness. People won't say things to your face but some will judge and some will whisper. I won't talk about it with anyone I don't know well. My rule is if they know me well enough to understand my character and not judge me superficially then maybe I'll tell them, but only if I need to. I'm not ashamed but I have regrets. I also know all the circumstances that led to my poor decisions at 16 yrs old, and with more maturity and the experience of being a parent I've forgiven myself. These aren't things I'm going to go into with people I don't know very well, unless of course I'm somewhat anonymous on an internet message board. ;)
OldenSlow said
Apr 17, 2014
patiently_waiting wrote:
I'd like to be able to date someone without being obligated to tell them I have HCV (believe it or not this is not a highly desired trait in a potential partner)...
Good subject and one I haven't seen discussed much. The insidiousness of this disease is profound. It lurks and skulks and weasels its way into every aspect of one's life. I've never felt stigmatized or ashamed about having HCV. I did it to myself and it is what it is. Still, I've never cared for talking about it much. With potential partners needing to know, the issue is forced and conflict ensues. Over time, I found myself qualifying relationships, doing something of an emotional triage and posing the question to myself "Is it worth it? Do I really want to go there with this person?" From a certain perspective, I suppose this is a good thing. From another, and given my natural reluctance to discuss the matter, some doors were closed before they ever had the opportunity to open.
As you say.. Decisions, decisions...
Gracie said
Apr 17, 2014
I hear you PW ... I was so adamant that I wanted to start the Sovaldi / Olysio treatment RIGHT AWAY ... like within 4 months and just clear this damn virus. After having a breakthrough with incevik which I think was due to dose reduction. Having been UND at week 8 really made me believe I can do it. And I want to do it NOW ....
BUT ... 12 weeks, one pill, no riba, close to 100% cure rate .... Wouldn't it be so much easier to handle and almost guaranteed SVR. I just wish I knew the right answer. I change my mind every day. Go to pick up the phone and call my insurance company to see if they will cover it ... then hang up cause I'm just not sure.
..... one thing is certain .... we are on our way to eradicating this virus ... sooner or later - we will be hep C negative ...
patiently_waiting said
Apr 17, 2014
I'm still waiting for a response on where my doc thinks I stand in terms of fibrosis. Based on past tests my guess is I'm probably 2-3. The thing is that's not the only thing I'm considering. I'd like to be able to date someone without being obligated to tell them I have HCV (believe it or not this is not a highly desired trait in a potential partner). I'd like to go celebrate a friend's new job or wedding and be able to cut loose at least a little bit. After 25 years of having this I want it gone...NOW. :) But all that said I don't want to make a stupid decision out of impatience when only 6 more months are involved. Decisions, decisions...
Hi Bills,
Good to hear from you, buddy. You've had your share of Riba and Interferon and deserve an easy treatment for a change. Sovaldi/ Ledipasvir is the one for you- good luck getting on it. It should only take a few months and you'll be joining us in the SVR Club. Cheers mate!
Hello again everyone,
I've been off line for some time now, I decided to wait till October, Of course this is my favorite topic as well. Early this year I was on mission to be treated again. And ready for anything. And it sure is a mind game for me. I can't just sit here and wait. But I had to take a step back.
My view is the interfron / Riba / Incivek and a Trail (3) time relapsed. Should have taught me something. Geno 1 is tough and 25-30 yrs infected with cirrhotic make it worse. I have consulted a new Hep group. He appears to be leaning toward NO Interferon / Riba and has had alot of success with sovf Ledipasvir in trials. I just can't imagine myself fighting Insurance for a treatment that contains drugs I already relapsed on. I can't take another failed RX mentally One pill one drug company will be approved and should be easy to get approval for. I'm just to tired to experiment again.
I'm actually just wondering how the final trials for the wonder drugs hold up for us Cirrhotic relapse are doing.
And a special hello to all my good friends here I can't wait to pick up the sword again. The Dragons going to die this time.
Good luck and prayers to all
BS
I just finished an interview with a potential employer. I need to change jobs but the timing could be better! I didn't expect to get an interview this fast. Depending on how well things go it looks like I may be starting a new job while on treatment. uggh. I hope the sides are minimal...I'm a little worried about the riba but I'm thinking it should be ok.
-- Edited by patiently_waiting on Wednesday 21st of May 2014 08:02:51 PM
The ADs did nothing for me unfortunately. In fact they just made it worse. I tried several. I can relate to your story about getting mad. I had that feeling a few times but more than anything it was a feeling my world was coming to an end. I think even as bad as it was though I could do it again for a shorter time.
I experienced the exact same issues with treatment the first time I was on Interferon mono therapy in 96. It was the worst I've ever felt emotionally in my life. I was fortunate that Florida didn't have any bridges high enough to jump off, lol! Once I started an anti depressant, it passed fairly quickly. This time around I started an AD ahead of time and had an idea of what to expect. The ribavirin induced irritability was the most noticeable emotional issue this time and it was manageable. The one thing that stands out in my mind was how fast the irritation can escalate. I got mad at a box of instant mashed potato flakes, the box kept falling out of the cabinet and after several attempts to make it stay where I put it, it fell again and I decided to throw it at the wall in a small pantry area. It was ugly and I'm still cleaning up potato flakes. Those little suckers can really fly!! Just understanding how fast a small irritant can become a large mess, is often enough knowledge to help you avoid it.
Tig
My issues were mental more than anything - anxiety, depression, irritability. It's not 100% clear how much of this was riba vs interferon but in any case I'm prepared to deal with it. I expect I will be taking the Riba based on what my doctor has said and how I responded to him. It's worth it to me to deal with the riba sides and treat now as opposed to waiting. In fact even if I had the same side effects as I did on interferon, I think I'd still want to go forward, considering it's only for 12-16 weeks now. I was ok even last time after 3-4 months. I think it was around the 20 week mark where it started getting rough.
Hi PW,
That was my question, how bad were your previous reactions to Ribavirin? If they were tolerable, I would seriously consider the addition of it. If you're exhibiting indications of increased fibrosis, again I would seriously consider it. I know Wayne is on a 16 week program and while that's not a common extension, that also may be a worthwhile consideration with or without Ribavirn in the mix, but imo certainly should be, if you will be on the 12 week program. I would want to take advantage of every possible opportunity that increased my odds of success. I had some issues with Ribavirin, but I think the majority of negative sfx were due to Interferon. Riba has it's known problems with rage/irritable and the skin disorders from either sun sensitivity or the rash. But all of them are generally well tolerated or easily treated. The advantage it provides with SVR rates, imo, make it an easy decision were I making it. Whatever your choice, I'm pleased to hear that your doctor has agreed to recommend tx with these two blockbusters. I know the future offers some very good tx advancements and possibilities, but I believe these two drugs offer you an excellent chance of ridding yourself of this disease now. Good luck, the opportunities before you are excellent whenever you decide to treat.
Tig
I'm prepared to fight like hell if I have to. I may not get anywhere but I'm sure not going to be passive about this. It wouldn't surprise me at all if the guy I spoke to gave me inaccurate or incomplete information. He seemed to be reading from something but wouldn't give me anything in writing. I'd like to think if my doc thought we'd have a problem getting approval he would have said something, but who knows. Anyway, one step at a time. Thanks for wishing me luck - I may need it.
Hi PW:
It is such a good feeling when you at least know that you and your doctor are on the same page. I have noticed that, unless our requests are unreasonable, most docs will go along with our treatment decisions. Getting the dialogue going can be a challenge because they are simply so busy. Having your doctor on board is necessary for the insurance company to pay.
There are certainly some instances of insurance companies paying without proof of advanced liver disease; we have a few people here on the S/O or S/O/R combos who are in early stages of fibrosis. And, what the insurance company will accept as proof is an open question as well. Will they accept a fibrosure test result or want more--a biopsy or fibroscan?
Only time will tell, but I don't particularly believe that liver disease does not factor into the insurance company decision, and it certainly isn't beyond the realm of possibility that the agent you spoke with was either mistaken or being less than honest.
In any event, this is a step forward, and you may just get what you want. One thing is for sure: most people have to fight like hell to get what they want and even what they need where expensive medical care is concerned. It just doesn't seem right but it is what it is.
Good luck and please keep us updated!
Thanks for that perspective, Wayne. My tolerance issues weren't so severe that I'd want to risk the outcome. I responded to my doc basically saying I'm fully on board whichever way he wanted to go with it. Now the next hurdle is getting insurance to approve, then I'm on my way.
-- Edited by patiently_waiting on Friday 16th of May 2014 07:55:49 PM
Hi PW,
I of course can't speak to your past intolerance issues with ribavirin. You would know best on that one. I do know that if I had to begin tomorrow another 4 months of tx utilizing Sovaldi and Olysio, I would want the riba. The lack of followup data using Olysio as the mop up DAA, particularly for cirrhotics, would make me too nervous not to use it. This will all change over time, as you well know. Maybe it is overkill, but we can only work with the information we have. A year from now maybe we'll find out otherwise, and I'll be kicking myself for being such a nervous nellie. Who knows?
Best of luck to you, in any event.
wayne
That sounds good, PW. It is a long and arduous journey for most but it will get easier both for us and for those who are diagnosed after us.
I met with 4 different specialists (2 hepatologists, 1 gastro, and 1 infectious disease) before I arrived at a specific plan, and, it is a fluid process with things changing all the time in the area of HepC tx.
Just make sure you take time to relax and enjoy what you can along the journey too.
Isiscat, I will be doing that as well. I'm going at this on multiple fronts. My next step though is to talk to another doctor and I've already reached out to one. I'm hoping I can get the doctor to order a Fibroscan so I'm not paying for all of it out of pocket.
That's interesting. And the written policy probably leaves the question open so they can make it up as they go along.
Like I said, I would go another way with this, but the choice is yours and I wish you the best with your decision. My focus would be in figuring out how my liver is doing, i.e. fibroscan, and then getting the best SVR odds.
San Antonino could be nice this time of year, and also offer a little family bonding time, but that isn't my call.
When I went to Canada for my fibroscan my mom came with and we had one of the best (mini) vacations we ever had. Arrived in Vancouver at midnight, the hotel had given away our room, so they upgraded us to the 2 bedroom Penthouse suite where we stayed for 3 days ordering room service and goofing off together. Sweet. Did a little sight seeing too, of course.
PW,
My insurance company said the same thing. At least they are consistent. Lol- however it still leads me to believe Ledispavir will be the same story.
Thanks again for explaining your situation.
Rob, Isiscat, Matt, thanks for your replies. I have an update...I just got off the phone with Cigna. Just as you suggested, Isiscat, I called to ask them about their policy on authorizing Sovaldi. After being transferred a few times, the gentleman I spoke to explained that there are a number of things they consider, but fibrosis stage/cirrhosis is not one of them. He said primarily it was based on whether interferon can be or has been taken and whether the patient is able to take it. He said that wasn't the only thing considered but I asked him twice about whether fibrosis/cirrhosis condition is considered and was told "no". I'm going to talk with another doctor or two and see what they have to say.
Hey PW
Your Doctor is talking the latest view in the way both the Medical side and the Insurance side is making decisions on who gets ASAP treatments with the current all orals S&O.
He's just saying with your current liver status you would likely be denied.
Since you live in the Dallas area you could drive to San Antoine to the TLI (Texas Liver Institute) and get a Fibroscan. I was just there in April and had an appointment with Dr Lawitz one of the foremost Doctors and Hep-C clinical trial sites in the world. The Fibroscan takes 2 minutes is painless and cheap. That will give you an accurate reading on your fibrosis. The TLI has done most all of the trials including Gilead's, Mercks, J&J, Abbvie and can give you great insight. When I saw Dr. Lawitz he recommended to wait for for Gilead's combo and I am F4 and could qualify for S&O but my circumstances are quite a bit different than yours. If you want to know more you can private message me.
matt
P.S. You may have already figured this out, PW, but the reason I am suggesting you call your insurance company before doing anything else is that, in the somewhat unlikely event your insurance company is stupid enough to accept fibrosure results and they will pay for F3-F4, you might want to hold off on the fibroscan or biopsy. If your insurance company will pay then I'd be very surprised if your doc would not prescribe S/O.
My choice would be to make my decision based on the actual status of my liver, (not the fibrosure version) and if I could wait for S/L then I would, but I get that you want to treat ASAP.
-- Edited by Isiscat2011 on Friday 9th of May 2014 01:39:18 PM
He also gave you medical reasons, although I'm not sure he has enough information to determine how your liver is doing, since you have had neither a fibroscan nor a biopsy. For that matter you don't know the status of your fibrosis either. You also haven't had your IL28b checked but that could be because he knows you won't do Interferon.
He is right that cost IS a primary factor. If your insurance company won't pay then you have a problem and your doc may not be able to fix that problem even if he wants to. His reasons for treating off label must be justified.
I would begin by calling my insurance company to find out if they would even pay for S/O and under what circumstances (unless your written policy spells it out). When you talk to them there is no reason for you to say much--you ask the questions. If insurance won't pay will patient assistance programs pay? That is your next call.
People who can prove cirrhosis appear to be in the best position for getting S/O treatment paid for now. Cirrhotics' doctors also have a much better case to make when they get involved with trying to get approval and, thus, are more likely to fight for them. That trend may continue with the S/L until the costs come down.
You can make an appointment with another hepatologist, and that isn't a bad idea because you should have a doc you are comfortable with, but how long will it take to get an appointment? Additionally, I don't think many docs are going to put up a fight to treat off-label where there is no evidence of cirrhosis and where patients will have many options in the near future.
You need more information before you can make a decision. Bottom line, this isn't likely to happen fast. Also, what is the "risk of job loss" about?
Hi PW,
It sounds like there was some good news with your doctor visit today but I feel exact same way in regards to getting treatment ASAP. I wish I could just hang out and wait also but mentally, I can't! For me personally, I made the decision to push for Sovaldi and Olysio which is two pills a day.
There are organizations that will supposedly help and that's my next avenue to take if negotiations between the drug companies and my insurance don't work out. I have little confidence that my insurance will view the soon-to-be-released Ledispavir combo any differently than Sovaldi/Olysio that's available now.
Furthermore, Janssen has applied to expand Olysio's label and is in the process of expanding what they started in the phase three clinical trials with Gilead (Sovaldi). With this news, the current, and off label rx will likely become FDA approved sooner than later with more participants.
Hopefully my current path works out but if not, at least I tried everything possible to get treated. It's good to hear your doc saying you have plenty of time and not to worry. Good Luck!
When I asked him what the reason would be for waiting instead of using what's available now he said it's because the insurance companies are difficult to deal with since it's two different companies and it's 5 pills a day vs 1. This answer makes me pretty uneasy as they aren't medical reasons. It's possible he just didn't want to get technical, but I don't know. I don't think the fact that I'm looking at another ~7 months out of my life being infected with HCV is being taken into account. I also don't think the risk of job loss is being considered. Based on the reasons I was given I can't help but suspect the primary factor is cost.
I plan to follow up with his office to make sure I didn't misunderstand the reasoning (it's really hard to discuss everything I'd like during our visits as it feels kind of rushed). If my suspicions are justified I think I will have to talk to someone else. I hate to burn a bridge with this doctor (not sure that it would but probably) because he has a great reputation, but if that reputation isn't translating into a cure ASAP for me then I don't know how it's of any value to me. I'd be very interested to hear what some of you would do if you were in my situation.
Hi Mary,
CT is useless for liver fibrosis unless you have progressed to the decompensated stage of cirrhosis. Mine have been boringly normal since 1990, despite progressing to cirrhosis during this time. MRI is a little better, but the changes are subtle.
My current policy is to have CT alternating with MRI every 6 months, as I am very difficult to Ultrasound. This is only to check for HCC, post SVR. Cheers.
Well, Tig, it was reading the AASLD treatment guidelines, Isiscat's questions posted to me here on this site (thanks, Isiscat, you really made me question my first decision) and realizing I had a couple borderline disqualifying health issues for INF that made me rethink my decision. I think the fact I am three hours away from my specialist and with the low platelets already also gave me second thoughts.
My doctor spoke with me for 15 minutes via phone on Monday and we discussed all my options and he says he respects my decision. I will go in for my regularly scheduled every 6 months ultrasound and have my blood work checked, too. He says because of my cirrhosis I should be towards the top of the list for access to the new treatment. Maybe I am making the wrong decision, only time will tell, right?
How I am feeling? Tired, itchy, achy, icky, cranky like most of us.
PS My fibrosure test was wrong, too. My doctors seem to think that a CT scan is better at determining liver condition than biopsy.
PW: The fibrosure test is not particularly reliable for staging fibrosis. Mine was wrong. I'm glad Malcolm already pointed this out because I am beginning to feel like the forum skeptic.
I don't know where you are located but you can locate a fibroscan facility in the US at: http:// www.fibroscan502touch.com/find-a-facility.
I had my fibroscan in Canada, before they were FDA approved in the US, and it cost about $400 out-of-pocket. I understand they are actually a bit less expensive in the states. Insurance companies are foolish not to pay for them as they cost a fraction of what a biopsy would cost but I've heard not all insurance companies do cover fibroscans yet. Still, it may cost you less out-of-pocket than the deductible and co-pay would even if you do have to pay yourself. Well worth the money, IMO. They are easier than an ultrasound and considered highly reliable. Unless your doc has some specific reason for wanting to do a biopsy I would definitely go for the fibroscan.
As you are discovering, not all docs are created equally, particularly when it comes to knowledge and experience with HepC. If you are near a teaching facility, particularly one that has a gastro/hepatology dept, I would consider seeing a doctor there. Some of the teaching hospitals have done extensive HepC clinical trials and they understand this stuff best. Having said that, it really is necessary to be knowledgeable ourselves, and to be willing to be our own advocates, when it comes to HepC. Find the best doc you can but also stay informed yourself. Good luck.
I was told this was not a try it now are left out in the future. No solvaldi resistance has been reported so i can try it now and again in the future. That is why I said yes.
Hi Mary,
Can I ask you why you decided to delay? Was it strictly the difference in medication, time, risk of side effects or rate of success? Perhaps a little of everything? I'm curious about how you feel and would appreciate it if you would share how you're feeling. If you choose not to, I'll understand. The future treatments look very promising and I wish you the very best of luck.
Tig
I cancelled my INF/RIBA/Sovaldi treatment and will wait for winter and Ledipasvir.
Thanks Malcolm. I wasn't aware FibroSure wasn't reliable. Frankly I'm highly disappointed that my doctor didn't know and didn't seem interested to know my level of fibrosis. When I take it upon myself to ask for a test to find out I learn later it's not a reliable test. Is this not his job and not mine?
I guess I'm going to have to do a better job of researching these things on my own. Now for all I know I could be cirrhotic already. I really appreciate the help I'm getting from you and others here. In fact I'm starting to think without it I'd be screwed.
Hi pw,
My FibroTest (FibroSure) came in at 0.58 (F2) in 2008. 6 months later, I had my first Fibroscan which was 30.1 kPa ( F4). As I was F3-F4 on biopsy in 2000, the FibroTest was obviously wrong.
As FibroSure uses GGT as one of the parameters, the results are suspect.
Any result over 0.62 is called 'Grade 3- Severe activity' so don't fret over that. That is the ActiTest part of the FibroSure, that goes up and down with the ALT.
Obviously I'm biased, but I'd get a biopsy or Fibroscan. Cheers.
Fibrosis Score 0.00 - 0.21 0.67
Fibrosis Stage (Note)
RESULT: F3-Bridging fibrosis with many septa
Activity Score 0.00 - 0.17 0.93
Activity Grade (Note)
RESULT: A3-Severe activity
Hi Matt. I did get some tests very recently and I just updated my sig. I'm still waiting on the results of the fibrosure test though...not sure why it's taking so long. If it comes back low I will probably be ok with waiting. I may not have a choice anyway. I hear you on the outcome being the most important thing. I would just prefer getting the outcome in September instead of early next year. :) You know what they say though - wish in one hand...
Hey PW
I don't know if you have had a lab report since last Nov 2013 but if I was you I would go to Lab Corp. or any of the walk-in Blood testing sites in the USA and get a current Liver panel and CBC test. Most of these labs also can test for ferritin levels as well.
With the wait at almost 5 months now before the Gilead combo gets FDA approval if you don't have a pressing need and have a lower fibrosis score I would wait. Remember its the outcome or result of the treatment that is the most important thing. I deal with this mental anguish its seems weekly in my own case. So I have to keep reminding myself that the outcome is the most critical item in debate.
matt
I don't know if he's sticking with interferon for insurance coverage/cost reasons or some other reason, but I'll find out next week when I talk to him. Gracie, good luck on getting in to see a doc. That must be frustrating to have to wait so long to even talk to someone. Rob, good to know what I may be faced with if I end up moving forward with this. I hope you get yours approved soon. JLynch, congrats on your UND and good luck keeping it.
I'll let you all know what I find out next week. Thanks for the replies.
PW,
That's exactly what my doctor said initially. I was persistent with him and pushed for the Olysio/Sovaldi. He did write and submit the rx but getting access to that combo is a greatly different story. I'm two months in with a couple of insurance denials behind me and no meds in my hands. So who knows? It's definitely frustrating but I'm sure your time is coming sooner than later.
I like Tig's input. It might pay off to conduct more testing? Stay Strong Friend.
I decided to go on interferon again. I do not want to wait as i am f4. After 4 weeks i am undetected - BUT it does comeback for some. I will keep you all posted
Hey PW,
Just wondering if you've been tested for the IL28b polymorphism? Since you've already treated and failed using INT/Riba and the simple fact that you don't want to treat again with INT, could provide your doctor with good reason to request the off label Sov/Oly Tx. If you test for an unfavorable allele, and with your dislike for INT, you should qualify and meet any appeal requirements. Just a thought.
Tig
For me the choice was simple. My office is scheduled to close at some point...not sure when. Without insurance getting the meds was much more an uncertain. Gotta make hay while the sun shines.
That's the question of the day isn't it? Did somebody say this was going to be less expensive than sovaldi olysio combo? I think I can wait, but like the rest of you who are waiting it feels like playing Russian roulette. Once you progress too far, the damage will be done. Although improvement is possible, getting rid of it sooner rather than later seems the best option. And it might not even be a choice for most of us. So expensive, and with less expensive options on the way, insurance companies are most likely going to tighten up on approvals. I don't even know when I can get in to see my hepologist again, we have a shortage of doctors here, and the wait could take months ....
.... So... Along with you ... I'm patiently waiting, not so patiently....
I just heard back from my doc's office that he's telling his geno 1 patients that current treatments include interferon. I haven't spoken with him yet so it's too early to draw conclusions, but I expect when I go into see him soon that's the answer I'll get. No way I'm taking interferon again. Emotionally I'm chomping at the bit, but even rationally, there is risk in waiting. What if I lose my job? My enzymes have been elevated also and I don't want to sustain any more damage than I already have over the past 25 years. I don't have cirrhosis yet I don't think (still waiting for results) but I don't want to get it either. I didn't realize I had gotten myself so worked up about getting started, but hearing that today was quite a letdown. Maybe I chose the wrong nickname for these forums.
-- Edited by patiently_waiting on Tuesday 29th of April 2014 09:38:41 PM
Trust me I did my share of following clinical trials over the past 25 years. I followed so many "silver bullets" that went bust in Phase 3 I lost count. I stopped following. I finally figured out that if something came out that was successful I'd hear about it. No point in putting myself through the emotional wringer. Finally we have the real deal. The light at the end of the tunnel is within reach and it is very exciting. You're right...this is a very nice "problem" I have in trying to choose between all these great options. :)
18 months ago, I did a post about the ideal DAA. It has arrived, in the form of the Sovaldi/ Ledipasvir single pill.
For Geno 1 and 2, 12 weeks for non-cirrhotics, 24 weeks for cirrhotics , 12 weeks and 12 weeks with Riba for Geno 3 will give close to 100 % SVR.
How to pay for it is the problem. For some countries, this will take many years to accomplish.
Other DAA's will form a queue, depending on price. They will play a minor role. Olysio will go back on the shelf, with Victrelis and Incivek.
In the short term, cirrhotic patients will still die of HCC and cirrhotic complications, but essentially HepC is now curable. The problem remains how to identify the vast numbers of HCV patients that are still undiagnosed. This will happen slowly, and in 10 years, HepC will be like TB.
Really enjoying this topic..
This is so wonderful!!!!! Reading about your deciding which drug to take and knowing that new drugs are on their way--with NO interferon and NO ribavirin. and short treatment times. And high SVR rates, as well
This is a dream come true for all of us who have Hep C. Enjoy your indecision--we didn't have those options for many years.
Whatever you choose, it will be for a short period and virtually side effect free. This time last year, I started my search for an interferon free clinical trial. Didn't have many options--and some trials refused cirrhosis and some had upper age limits. Felt so fortunate to even get a trial. Already it is different. And I am SVR without interferon.
Much luck to you all.
SuziQ
Tough questions to answer, no doubt. I've decided that if I can get access to Sovaldi/Olysio now, I'll take it and be SUPER thankful. If not, waiting for Ledispivur is my next step.
For me, it's more of an issue of being able to work long hard hours and access to a Tx that fits that criteria.
Good Luck PW...
While taking Sof/Led, the person you are dating will not be able to tell. Look at the the posters on the Ion-3 trial that are not taking RIBA. Pretty much all have the same things to say- minimal if any sides. Good luck
I'm a private person by nature. I *never* want to have "the talk" within the time frame I'm obligated to. The whole conversation is a can of worms. Would I feel comfortable with the conversation eventually? Maybe. But not soon. End result is I don't date much since my divorce. There is a stigma, whether fair or not and like it or not, with this illness. People won't say things to your face but some will judge and some will whisper. I won't talk about it with anyone I don't know well. My rule is if they know me well enough to understand my character and not judge me superficially then maybe I'll tell them, but only if I need to. I'm not ashamed but I have regrets. I also know all the circumstances that led to my poor decisions at 16 yrs old, and with more maturity and the experience of being a parent I've forgiven myself. These aren't things I'm going to go into with people I don't know very well, unless of course I'm somewhat anonymous on an internet message board. ;)
Good subject and one I haven't seen discussed much. The insidiousness of this disease is profound. It lurks and skulks and weasels its way into every aspect of one's life. I've never felt stigmatized or ashamed about having HCV. I did it to myself and it is what it is. Still, I've never cared for talking about it much. With potential partners needing to know, the issue is forced and conflict ensues. Over time, I found myself qualifying relationships, doing something of an emotional triage and posing the question to myself "Is it worth it? Do I really want to go there with this person?" From a certain perspective, I suppose this is a good thing. From another, and given my natural reluctance to discuss the matter, some doors were closed before they ever had the opportunity to open.
As you say.. Decisions, decisions...
I hear you PW ... I was so adamant that I wanted to start the Sovaldi / Olysio treatment RIGHT AWAY ... like within 4 months and just clear this damn virus. After having a breakthrough with incevik which I think was due to dose reduction. Having been UND at week 8 really made me believe I can do it. And I want to do it NOW ....
BUT ... 12 weeks, one pill, no riba, close to 100% cure rate .... Wouldn't it be so much easier to handle and almost guaranteed SVR. I just wish I knew the right answer. I change my mind every day. Go to pick up the phone and call my insurance company to see if they will cover it ... then hang up cause I'm just not sure.
..... one thing is certain .... we are on our way to eradicating this virus ... sooner or later - we will be hep C negative ...