Hep C Discussion Forum

Shadowfax · Guru

RE: HBV/HCV Coinfection

Linuxter · Guru

Thirded! ... confuse

Cinnamon Girl · Guru

Seconded!! biggrin

(Far too technical for me, I`m off for a lie down... wink )

Tig · Admin

There seems to be entirely too much brain power at work for a Monday morning, STOP IT!! Ha, ha! Good ideas Mike! We should appoint you our IT guy.... All in favor? biggrin biggrin

wmlj1960 · Moderator

Shadowfax wrote:
I actually have that in my signature but realize that when we are responding to a post, you do not see the members signatures. Odd.

Tig56 wrote:
This applies to the question about the signature visibility. This is simply a work-around. If I need to review a members signature during the course of a reply, I simply open a second browser window and go to the same thread and post. Now the signature is visible and you can return to your established reply in the other browser. Hope that helps....

Agreed, opening the same thread in another tab works and you can also cascade both windows in order to view both at once if you like (position cascaded windows as needed).

or

Another way I do it sometimes is to open 'Notepad' (included in Windows 'Accessories') and with only the notepad window cascaded, you can type your reply while viewing the original post in full screen, then copy/paste that text into the 'reply' space when ready to post your reply.

Note: Either enter your emoticon code (if applicable) into your notepad or select emoticon after text is entered into the 'reply' space.

Hope that helps. smile

Cinnamon Girl · Guru

Thanks Tig, that would work. I just try to remember to read the person`s signature line before I start typing my reply.

My memory does fail me sometimes though...

Tig · Admin

This applies to the question about the signature visibility. This is simply a work-around. If I need to review a members signature during the course of a reply, I simply open a second browser window and go to the same thread and post. Now the signature is visible and you can return to your established reply in the other browser. Hope that helps....

Cinnamon Girl · Guru

Hi SF, yes I agree with your comment...

"I actually have that in my signature but realize that when we are responding to a post, you do not see the members signatures. Odd."

It is odd and actually quite annoying! It`s just the way the forum software works, unfortunately we can`t do anything about it... confuse

Shadowfax · Guru

Thank you everyone for your great support. This really is an amazing and wonderful forum.

It's true Cinnamon Girl! My Heb B took me on a 3+ month detour waiting for that appointment but it's done now.

Dave, I am Genotype 1A and the prescription will be for 12 weeks of Harvoni. In the event my Hep B shows up again then Viread will be introduced to keep it at bay. I am hoping the doctor at the hospital is right and I actually cleared the B (Of course it will always show) and it does not reactivate although he said it is a possibility and would be evident from my blood work. I will ask my doctor to please do a viral load of both C and B when it done. I hope he will agree and see no reason why he should not.

I actually have that in my signature but realize that when we are responding to a post, you do not see the members signatures. Odd.

On a separate note, I have 7 cases of water with 30 500 ml bottles in each ready ** Thinks that should last me a week or two smile I need to work on those green things however. For someone who is scared to death about taking medications I am so ready for this one. Lets see how I feel when I have the first one in my fingers and how long I stare at it smile

Cinnamon Girl · Guru

Hi SF, good to hear things are finally moving forward, let`s all keep our fingers crossed for a start date coming up soon!

Many of us here know how frustrating it is waiting to get started, and the Hep B issue took took you on a slight detour, but hopefully it will be a smooth ride ahead for you.

Relax and enjoy the rest of your weekend, it`s coming together now!

wmlj1960 · Moderator

That's great news SF. I agree, safety first, but the ball is now rolling and you'll be on your way to SVR soon so hang in there, your seat is waiting on you. You have a great weekend too. smile

Linuxter · Guru

Hi SF,

Sounds like all the gears are in motion, I know it seems like forever but you'll get your train ticket soon.

Do you know what Genotype you are, sorry brain fade? Just wondered what meds you'll be taking.

Hang in there, I know that stretch of waiting to get started seems like an eternity but once you get rolling you'll look back and see that the last portion wasn't that long and that it's just that time slowed down. (If that makes any sense at all).

Got your seat saved, train's moving at a slow pace so you'll be able to catch up very easily.

Best,

Dave

Shadowfax · Guru

New update is that the report from the hospital got to my doctors office on Thursday. The NP went in that day and send the letter to get my dates for treatment moved since as mentioned in my last post, it had expired. My doctor will be back Feb 4th, this coming Thursday and hopefully the approval to go ahead will be in by then and we can get the ball rolling. Hopefully if all that goes smoothly, I would like to think start date would be the week of Feb 8th but until then it's all cast in Jello smile

It's just difficult when I know I could have been finished all this by now had the issue of my HBV not come up but safety first.

At least I know the wheels are in motion and that helped make my outlook more positive than it was in my last post.

I hope everyone is having a great weekend.

Cheers.

Shadowfax · Guru

Hi Dave,

Thank you. In fact I was approved Oct 13th for 12 weeks and it has run out. I had to wait for the other opinion from the hospital this past Friday. I am still approved but they will need to write a letter just to say I was detained for other tests and ready to start now. It should be no problem I am told. Insurance here in Canada is different as we have national coverage but not everything is covered of course. I am getting mine on an exceptional basis / compassionate claim that my doctor put through for me and Gilead is involved as well.

On a similar note, my doctor is gone until Feb 4th but they can still work with the letter but the hospital still has not sent the report. The hospital has been called and messages left to send it. My NP will be there tomorrow. I am a little annoyed to say the least and worried because so much time has passed. I have some discomfort in my upper right quadrant and that concerns me and I have been reading about it. I am just hoping my liver will hold on another week or so until I get my Harvoni. I hope it will be resolved by then because there are people working on it.

Please do keep that seat vacant and congrats on your day 9 and getting your next batch. It made me smile. I will be on soon.

Cheers and yes, don't forget to eat smile

Linuxter · Guru

Hi SF,

It took my insurance around a month to go from Rx to Tx, it depends on your insurance but I think they are all getting this down and in general going through the process of approval faster than in years past. There will certainly be no doubt that you qualify, just a matter of red tape (there's always that).

I'm hoping that you are approved sooner than that but I see that you are gearing up in the mean time (i.e. reading, educating yourself about Tx etc.). You'll be on the train before ya know it ... I'm holding that seat.

Dave

-- Edited by Linuxter on Wednesday 27th of January 2016 04:36:56 AM

Shadowfax · Guru

I just lost my whole post again so here it is readers digest version

To clear some things up, I have been seeing my gastroenterologist for around 10 years. He specializes in the liver and in fact did everything required for harvoni approval. He just wanted a second opinion regarding the possible repercussions of the HBV issue even though he thoroughly told me exactly how it would be treated if required. He is quite well known and liked by the staff at the hospital.

It's great to hear about another success story regarding ESLD as to be honest, it certainly concerns me. I am hoping that my tx will start to heal me as well. Thank you for sharing that wmlj1960. Yes I agree that my doctor should be able to in a few days just write the prescription regardless if I see him or not. I have been told by my NP that the pharmacist actually calls and carefully goes over the drug, interactions and other drugs you may be taken. It seems this is a great company they choose to administer these drugs.

Thank you Tig56, I hope you have a great night out and yes, I am feeling better after hearing that the HBV just may not be an issue. Honestly, I had a list of questions I took to the hospital and I kept on apologizing for asking and talking so much but he seemed happy that I took the time to learn about what I had thus making his job easier. I will not give up. I am really nervous about taking this but take it I will.

Dave, It's great that you are doing well on your tx. I do recall you saying you might have to stop taking an iron supplement. In fact, I was holding iron and had to have therapeutic phlebotomies to lower it. The sad part is that others with high iron (Ferritan / Iron saturation) can at least donate what they take and save a life whereas clearly I cannot. That would make the process so much better.

Once again, I thank you all for you input and help. I am so thankful I found this forum.

Have a great weekend everyone!

wmlj1960 · Moderator

Good work SF! Now you know where you stand and what the solution is and I know that gives you some peace of mind. Your future now will consist of clearing the HCV, the HBV (if existent) will remain dormant - Viread for that if not, your liver will regenerate to possibly a non-cirrhotic state with no more extra-hepatic issues, and you'll live a long happy life. Sounds like a doable plan to me.

Don't sweat the being told you are at ESLD. That big bad word's bark is worse than it's bite. Cirrhosis regression, based on my experience, will start to happen when HCV treatment starts. On 1-18-14 I was discharged from the hospital after having the ascites fluid drained out of my abdomen and the discharge diagnoses paper said ESLD, decompensated cirrhosis and a bunch of other stuff including portal hypertension. After treating with Sov + Riba in 2014 I failed to achieve SVR but regardless of that my liver sure has made a lot of progress toward cirrhosis regression with no more portal hypertension. My 5-19-15 Fibrosure result was only 0.76 with AO-No Activity and other than low platelets, my current LFT's are normal. I have every reason to expect further regeneration progress and likely an SVR report in my future, just like with Malcolm.

After this latest visit with the liver specialist the process should move quickly and you'll have your Harvoni in hand soon. It may take that 3 weeks to get back to see your doctor but I would think he will be able to send the Harvoni request as soon as he gets the report from the liver clinic. Either way you know you will soon be aboard the Harvoni train on the way to your Hep C free destination. We can be very proud of that! smile

Tig · Admin

Hey SF,

I'm on my way out the door, but wanted to take time to congratulate you on what sounds to me like some very upbeat news! Attitude means so much and those days when you're feeling lost, remember times like this. Never give up, never give in, just keep swinging. I think you landed a good punch right to the chin on both of your Dragon's. They're going down.....

Linuxter · Guru

Hi SF,

Glad to hear that you finally got some information regarding getting started on Tx.

I think you'll find that once you meet with your main doctor (gastro?) it should be easier to get appointments, I know doctors tend to prioritize their patients some and once you become part of that prioritized system you will get more of their attention (including appointments).

The news regarding the HBV sounds very encouraging. It's good that they will be monitoring that closely as you start HCV Tx and they have a plan of attack should it rear it's ugly head again.

I know it's a long and complicated process you're going through right now but you are, indeed, going to be getting Tx soon, I'd anticipate some delay if you need to get re-approved but they may expedite that since it's just a matter of paperwork and re-approval (nothing else has changed). The additional blood work and scan should help and will give you a good baseline prior to starting Tx.

Hang in there, it's all good that your team is working on it, things are starting to happen. I'm sending my best wishes to get going on Tx soon.

Wishing you Well SF,

Dave

Shadowfax · Guru

The next step in my journey was taken yesterday, Friday January 22nd. I finally had my long awaited appointment with a specialist at the hospital in a premiere liver clinic. This was set up by my gastroenterologist but unfortunately took nearly three months to get in. I could not make this post because by the time I got home I was physically and physiologically drained.

The consensus from the doctor was that my HBV seemed dormant and that in fact I seemed to have cleared it because there was no surface antigen and as previously mentioned any VL was under 20 or undetected. When I asked about HDV I was told that it could not exist without HBV but most commonly did when B was present. The important treatment now is to clear my HCV since it is doing the damage but watch for any increase in my liver function tests that would indicate that B in fact was making a return and treat it as necessary with Viread.

He did some blood work of which I do not have the results and another Fibroscan while I was there. The reading was 33.5 kPa. The last one in September (elsewhere) was 45.7 but as I was told by the technician the difference really meant nothing and I understand that. It is high and before September of 2015, I never knew I had cirrhosis. It was not easy to be told I am at end stage liver disease but it seems in the middle and it will be slowed or stopped once the HCV is cleared. I read much in this forum about regeneration and functions and portal hypertension no longer being problematic once SVR is achieved. Much of that were posts by Malcolm who just made us all so very happy, so thank you for the chance to be optimistic.

The report should get to my doctor hopefully by Monday or Tuesday with the recommendation to move forward with the Harvoni. I made it a point to call both my doctor and nurse practitioner to let them know the appointment was done and watch closely for the report so we can move forward. I requested that I have an appointment A.S.A.P since I have been waiting so long. I hope this will happen this coming week although historically it would take three. I will politely insist that he squeeze me in to get this train rolling.

I was informed that they may have to do some paperwork to get the ok again because when approved for treatment for 12 weeks, it is within those weeks you are approved. The window will be moved with no problem now when they say that now after further diagnostics I am ready to start.

This is where I am right now and hope to have another update very soon.

Thank you for all those who took the time to read this and might respond.

Cheers

Shadowfax · Guru

Thank you Linuxter!

Linuxter · Guru

Here ya go SF ...

Link to Mike's completing Harvoni.

Lnx

-- Edited by Linuxter on Sunday 10th of January 2016 02:36:18 AM

Shadowfax · Guru

Hello Everyone,

Thank you once again for all your valuable input and resources as I do believe knowledge is power even if it is stressing me to the max :)

Tig56, Yes I do realize the article regarding treatment is outdated by what we have today. It was more for backup material regarding the issues facing eradicating both of the viruses and how they might do it today. It is evident that extreme care and good monitoring will be critical because of the interplay between them both. One suppressing the other until the door is open again.

Mike, Yes I was actually vaccinated with Twinrex and I am immune to HAV now. It was quite important to me about A because I know I could pick that up from a grocery store. The question regarding the marker of 20 or should I say the answer at this point is as clear as mud. I was told, they know there is something there although they have no idea what that value is since it is under 20. I will provide more information when I find out. One other thing, I had believed I saw a post from you that you had just completed Harvoni and I just cannot find it. If that was not my imagination, congratulations are in order and I will be certainly following that. If you would be so kind, could you please tell me where it was or link to it?

Jaded, Thank you kindly for your link. The information is great. I am so happy you took the time to read this thread.

I am so happy to be part of this group. It is important to me and I do hope I can contribute as I learn more and start treatment because I just know there will be others who fall into the same category as I do. (I also wish I could spell and use proper hyphenation in words like "co-infection" smile

Have a great weekend everyone!

wmlj1960 · Moderator

A question for you SF:

Have you been vaccinated for HAV? Have you had a HAV antiboby test done and if so what was the result?

This is not the same as the RNA viral load test. The result will look something like this one of mine last year:

Antibody test results.jpg

wmlj1960 · Moderator

Jaded wrote:
It look like Gilead has come up with a successful tx for Hep B...with FDA approval expected this year.

hepatitiscnewdrugs.blogspot.ca/2016/01/gilead-results-from-phase-3-studies.html

Thanks for the heads-up Jaded!

Shadowfax, this may ease your mind about concerns for your kidneys, as you mentioned in your introductory thread - "Viread levels can be dramatically increased when taken with Harvoni and play havoc with your Kidneys"

Being that I take Gileads Viread (tenofovir disoproxil fumarate, TDF) for HIV, I am certainly interested in the part about:
"In addition, tenofovir alafenamide (TAF) demonstrated improved renal and bone laboratory safety parameters compared to Viread"
and
"We are pleased that the TAF Phase 3 study results reflect high efficacy and improved renal and bone safety parameters similar to those seen in clinical studies evaluating TAF-based regimens for HIV".
and
"Changes in bone and renal laboratory parameters favored the TAF regimen. In both studies, patients receiving TAF experienced a significantly smaller mean percentage decrease from baseline in hip and spine bone mineral density at week 48 (p<0.001) compared to patients receiving Viread. Smaller increases in serum creatinine were observed in patients receiving TAF in Study 110 (p=0.02). Additionally, the median change in estimated glomerular filtration rate (eGFR) from baseline to week 48 favored TAF in both studies (p<0.01)".

I'll be sure to mention this to my doctor and you should do the same SF.

Thanks Jaded! smile

Tig · Admin

I failed to address that thought (question) and glad you did Mike. I agree that it's important to treat the HCV and get it out of the way. I'm confident that IF the HBV were to return, you'd have great treatment options available to get back in control. The advances will hopefully have a solution available to do just that! I would be stoked to have this opportunity to destroy one dragon and clip the wings of the other.

wmlj1960 · Moderator

Shadowfax wrote:
I had my first B viral count and it was just there, below 20 that is considered it's undetectable point but they did see something. (15 being C as I understand it). My C count is 2.3 Million!

I blame the brain fog on Harvoni so I have an excuse biggrin but I'm not sure I follow this:

Your HCV viral load is 2.3 million

15 is the LLQ (lower limit of quantitation) of the HCV viral load test

20 is the LLQ of the HBV viral load test and that result did say "detected"

Is that correct?

_______________________________

I was reading that page earlier today and it brings up questions that we won't know the answer to until you have further testing done. The references for this information are 1999-2006, back in the peginterferon and ribavirin days and I would think the recent advances in treatment with new DAA's may shine a significant light on some of the variables involved.
But it seems to me that in your case it looks like the C is active and B is possibly dormant (based on your C vs B viral load results)(if I understand your post correctly). Assuming DAA treatment cures you of C, and then the B becomes active, there is medicine to control that (as it does with my HIV). I'm assuming that if the more aggressive B is controlled then you'll be in good shape as long as you take the medicine (Viread or whatever the Dr prescribes). I know it's more complicated than that but since your current liver fibrosis stage (F4 cirrhosis) dictates that you urgently require treatment for C then you have no choice other than proceed with treatment. Such was the case for me and I am so thankful for the latest technology so that my chances for success are very good. I think the same applies to you and I will be pleased to follow you as you succeed too.

I've been busy elsewhere and haven't had much time to research this subject but if I find anything significant you'll be the first to know. Until then keep doing what your doing. We have a responsibility to ourselves to get educated about what's going on with our bodies and how to take care of them. You can often be your own best advocate if you are properly armed. Carry on SF...

Tig · Admin

Hi SF,

That was a good article, thanks for posting it. I want to point out that the most current reference date mentioned is 2006. Based on today's advances, that article isn't providing you with the most current treatment data. A lot of changes and improvements, in both research and development. Availability and price is another discussion altogether!

Jaded provided some interesting news! I enjoy reviewing the links shared by everyone. Seeing the new research and simply reading it through, will very often place you ahead of the curve on staying current. Our treatments are getting better and better and it's because we have been willing to try the next best thing. The people in a year's time will benefit from the trials completed by today's pioneers. We have to keep trying until we eradicate these viral diseases. I think the future is looking better all the time!

Keep us in the loop. I like your thread and appreciate you starting the discussion. It's an important one to have.

Jaded · Senior Member

It look like Gilead has come up with a successful tx for Hep B...with FDA approval expected this year.

hepatitiscnewdrugs.blogspot.ca/2016/01/gilead-results-from-phase-3-studies.html

Shadowfax · Guru

RE: HBV/HCV Co-infection

wmlj1960 · Moderator

RE: HBV/HCV Coinfection

Linuxter · Guru

Hi SF,

Good to see that you are getting settled in and readying for your new Tx plan.
Having a team of specialists devoted to your case will ensure that you get the treatment that you need.
Glad you're here, keep us posted ... you're in good hands all around (Tx team and the knowledge base here as well as any other support mechanism(s) that you may have), kick back and enjoy the ride ... there's never been a better time to rid yourself of the HCV so it's all good.

Wishing you the very best going forward,
Linux

May Gandalf ride with you on your journey.

-- Edited by Linuxter on Friday 8th of January 2016 09:29:15 PM

Shadowfax · Guru

I will start this by recapping a little of what I wrote in the new member section!

****************************

* Detected Approx 45 years ago

* Co-infection of HCV and HBV (Of course we did not know about the C back then)

* Approved for 12 weeks of Harvoni .. thank you so very much but cannot yet be treated because I must see the specialists at the hospital to enable them to treat me safely since I will have to take something like Viread to control the B and the two drugs don't play nice together. I am really hoping I can do the Harvoni and slay that dragon then move onto the next drug that I understand will be maintenance for the rest of my life. (I did have the Fibroscan in September and I am F4 cirrhotic) I have been approved for nearly three months patiently waiting for my hospital appointment at the end of this month.

I am very nervous of drugs because of some past history but was very ready to start this one and mainly because of all the great people and support in here. It is fair to say I am not happy about the other issue but such is life and I must do what I must do. I am also hoping that if the C is gone and the B held at bay that my liver may continue to function enough to keep me going longer. At best, I hope it heals some since it has been ravaged for so very long.

The big problem as I have been told is that HCV can hold back HBV and that is why it is important to choose and juggle the right medications together. The C moves slowly but the B can be much more aggressive and as the C is eradicated, it can and often opens the door for B to move in and start raising it's levels and do damage much faster. I had my first B viral count and it was just there, below 20 that is considered it's undetectable point but they did see something. (15 being C as I understand it). My C count is 2.3 Million!

Playing devils advocate, I cannot help but wonder if having a slow moving HCV that has caused cirrhosis is the lesser of the two evils when slaying it may open the door for HBV being so much more aggressive. This is why I am being sent to a very high level clinic specializing in all of this so they can decide how to proceed. It is fair to say I am quite nervous and have no clue how they will move forward.

The next issue is getting the Viread or whatever drug they choose. It is not one that is normally covered by our national health plans but is under the right circumstances. I am hoping they can fast track that and I will not be held back again waiting and not being able to start my Harvoni because I do not have the HBV drug yet.

That is where I am right now and I will keep this current as appointments and tests are done. If there are any others out there that know they are also infected with both HCV and HBV, it would be great to hear from you so we can compare and take this unusual journey together.

Cheers

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