Hep C Discussion Forum

Tig · Admin

RE: ALL ABOARD THE VOSEVI TRAIN

Canuck · Guru

Hi RC,

SO glad to hear maybe the riba is starting to ebb now?

What a great record of your labs you have kept! Glad you did that, so easy to follow and refer back to when you graph it like you did.

I have all fingers and body parts crossed for you, for your next set of bloods. All we ask for are UND, UND's (for now), all else I trust will eventually fall into place, but it sure would be nice, for your sake, if all your other labs improve quick too and just behaved.

So, the other new virus that showed up recently ... is the recent anti-viral they just put you on, some of the same regular anti-virals you were on routinely (immediately after the transplant)?, OR, is this current anti-viral you are on, a new one, kind that you have not had before? Just wondered.

So much hard work, but look at you!!! ... Ca free, cirrhosis free, with a beauty functioning liver that knows exactly what to do, and, I'm betting a gazillion bucks, with a liver that will always be UND for HCV!

We too are looking forward to 2018, with you and Chris. C. smile

-- Edited by Canuck on Wednesday 27th of December 2017 05:04:25 PM

robertsamx · Guru

Boxers, Yes I wear a mask in public, cant take a chance with low white blood cells. Also at all blood draws and anytime in a Hospital. RC

robertsamx · Guru

Hi all, I am feeling better, getting stronger and looking forward to 2018. RBC and WBC still heading in the wrong direction but we are watching it close. I can walk across the house now without running out of steam.I will do a load test on hcv tomorrow, that will be the one week off treatment date. Will have the results on Friday- keeping fingers crossed.My LFTs as of a couple days post treatment are 12 and 25. Below are my numbers for the months of October - December 21. RC

wendyo · Guru

I now have this horrible visual of Tig with clumps of missing beard. Thanks! RC you can shave your head as bald is pretty hip these days and as it is cold there (unlike here, which does suck) you can wear cool hats!

Tig · Admin

Hey RC,

Glad the LFT’s are good. They show about as good an idea how things are working as most tests out there. Happy Enzymes, Happy Life! I wish it was that easy, but you’re getting it all figured out and every week there is progress being made. Steady as she goes, Brother...

Hopefully your latest viral issue resolves quickly. That WBC should recover soon, but there’s always a dose of Neupogen ready if required. That stuff is white blood cell magic. You’re fortunate to have your team close and so involved. I’m impressed by your healthcare team. It sounds like you like them, too! Sure makes things easier that way.

My hair fell out on treatment, too. My beard fell out in clumps. It was awful. Ribavirin can do that, but it comes back. Did you have trouble your last go around? Take a few pics for history. I have one that scares me from those days. Don‘t worry, you’ll be a wooly mammoth in no time! wink

boxers · Veteran Member

RC hope you are feeling better by Xmas. Do you wear a mask in public? I know that low H&H can kick your butt...dealt with that with those varices. They made me active today for transplant but more on that when you feel better. Merry Christmas and Happy New Year!

robertsamx · Guru

Thanks everyone for the good cheer!! I forgot to mention the fact that my hair is now falling out?? I hope that stops soon. My LFTs are good as of 3 days ago, and my HG is now holding at 9, and kidneys good at GFR 55, but my white blood cells are starting a downward trend :(

Drs are taking a look at all my blood work and have backed off on one drug and added a new anti viral because a new virus just showed up. RC

wendyo · Guru

Nice to see the V train letting you off for Christmas RC. What an ending for you and Chris. The New Year will find you feeling much better I am sure.

All best,

wendy

Tig · Admin

Hey RC,

Congratulations! You pulled into EOTVille a little differently than most people. You see, you’re supposed to be riding the train, not pulling it in with the locomotive strapped on YOUR back and Chris under you! I must say though, you’ve always been one to get things done, regardless of the obstacles placed before you. Well done my friend!

All that talk about how Riba made you feel brings back some unpleasant memories. I remember the profound dizziness and that grayed out vision. I never dropped as low as you did, but made it down to 9. I also passed out a time or two, not fun! I’m sorry to hear you landed on Chris, but she may have saved you from a broken hip! We’re getting to that age, you know! I hope she got a photo of the bruise and uses it to get something real nice! Maybe a matching Lexus? Ha!

I’m glad you’re finished ol buddy! All that’s left is getting over that 12 week hurdle. We’ll all be sitting on the edge of our seats with you for that anticipated good news...

Lindsmatt52 · Senior Member

RC- You definitely get the award for bravery! I am constantly impressed with your strength and perseverance and your attitude. I can only imagine the trials and tribulations you and Chris have had to live through and wish for you both a healthy and joy-filled New Year! Congrats on EOT!!!

Scruffy · Guru

Glad your done Robert.

I can relate to the low hb. I had to have mine checked every week 42 out of 48. Neupogen shots every week, four transfusions and near the end epogen also. Is that the ocean I hear in my ears???

Best wishes for you and your liver biggrin

Observer · Guru

Wow Robert

I am so glad you are done. EOT

Riba is a nightmare.

What a dreadful experience crashing onto poor Chris and both of you ending up on the floor. Glad shes not hurt (except for her bruise) did you get any bruises too? Thats a pretty dramatic way to get off yourself the riba.

Congratulations for getting through and over this huge hurdle.

A

Canuck · Guru

Oh RC and Chris!

You said it brother, what a butt-kicking ride indeed! I AM so sorry for the riba (and the header) and ALL these really hard parts, but you and your docs had wisely justified and resigned yourselves to the good insurance of the riba.

Man oh man, am I EVER glad for you that you are done, done, done! the Vosevi and riba. Telling you CONGRATS on your EOT feels right, but ... so, so understated at this juncture, with ALL you have been through. Whew, one part fi-nal-ly done. What an ordeal(s) you two have been through!

Such an epic to get to wellness, so proud, of both of you, in how you have dealt with all.

So, (overall) only a "4 day early quit" of riba, and before that, only about "6 days on reduced dosing riba", you did really well. You got in a LOT of riba!

I am so, SO glad you got 2 units packed cells into you. Ya, there are a few of you alright who can compare these dreadful hgb records! Not many around here will ever be able to appreciate what it truly is and takes to be members of these exclusive transplant and riba clubs.

Thinking of you two a lot, fretting and hopin, and so wanting things to be easier. Finally, this part is nearing an end. I think I can guess EVERYBODY around here is SO glad to see this EOT day for you, one more milestone RC! Good riddance riba, come on feeling better, I can almost hear it, taste it, it's right around the corner.

Big hugs to you both. C.

robertsamx · Guru

Hi All, What a trip the last 3 weeks have been! I got my butt kicked. Basically the riba dropped my HGB to 7.0. At that point it was all I could do to get the toothpaste cap off the tube! I went to see my GP about 10 days ago and on the way out of his office I passed out and fell on Chris and knocked her over. When I came to my Dr was kneeling next to me on the floor and Chris was on the floor with me and I had no idea what we were doing on the floor. Chris is ok, just a big bruise on her arm, and I am just fine. Pretty scary for Chris!! The next day I reported the little mis-hap to Seattle and they cut back on my riba from 1200 mg a day to 800 mg a day. I hated to cut back , but I did. As my HGB fell each week from 9 to 8 to 7 it really got hard to stand up and walk 10 feet without feeling like my legs and arms were made out of lead, and my head would get light and things would start to get mixed up and look gray. Anyone out there know what Im talking about? Last Friday,The Seattle Doc calls me with the latest HGB results (7.0) and tells me to stop the riba all together, and he put in orders for a blood transfusion. It took a day to set it up but this last Sunday I spent the day at our local hospital getting 2 units of red blood cells.. The outcome of transfusion so far is good. I can now walk the length of the house, and with out the riba I expect things to get better each day. AND TODAY AT 5:PM WAS MY LAST VOSEVI I am done with treatment

16 weeks of ups and downs and settling in with a new liver, what a ride!!! RC

Canuck · Guru

Hey RC,

Nice to see ya posting to Angel today.

How are you!

Let us know, when you can/when you feel like it.

When is your last day of Vosevi/riba treatment - Dec 20????

Thinking of you, lots! C.

Tig · Admin

Alright Alright!!! That’s good news, RC. Everything except the Riba, that is. Sorry it’s kicking your tail. Your Hgb is where mine stopped at during Tx. I know you’re crapped out, you have to be. Especially with the Anti Rej protocol. But in typical RC fashion, you’re showing that virus and all of us what strength and will are all about!

We know the best day is often yesterday, and rightly so sometimes. That curve is going to turn in your favor, soon. Just remember, each day will get increasingly better. The math is indisputable wink

Neupogen = Good

robertsamx · Guru

Over in Seattle for Fridays Three month post L/T check up. The RIBA is kicking my butt this time? I dont get it! The last two treatments with riba werent this bad, must be all the rejection drugs. Just 25 days or so of riba and it better be over for ever!! They were going to do a Contrast C/T and Contrast MRI tomorrow but called both of them off because of poor Kidney Function. They will do them at the 6 month post L/T. thats just fine with me, I am a very low risk for HCC re-ocurance. I really got a good doner liver!! The Vosevi is going well, thankful I got the extra 28 days even inspite of the added RIBA. HBG is down to 9.3 but not critical at that point. Around 8.0 it gets dicey and the need of transfusion comes into play, And the WBC is falling again and a nupogen (spelling?) shot may be in the near future. No big deal if needed, they are a piece of cake!! I can see the light at the end of the tunnel. The kidney function drop is expected because of the rejection meds. Hoping all of you out there are doing well. RC

wendyo · Guru

Nice to know you are feeling a little better RC, even if it is just a little.

Enjoy your day today with your terrific wife.

Observer · Guru

4th bottle! Yay.

thanks for keeping us updated. Im so impressed with your strength and grit. RIBA has such nasty side effects and with your weakened immune system and all your other meds, you're really being battered about.

I hope you and Chris have a great thanksgiving.

Alison

Canuck · Guru

Thanks for the good update RC.

Glad to hear you are having a bit better day of it today! Bound to make a person feel better just cracking open that very hard-won 4th bottle of vosevi! None of the days are easy ones when you are having to down your vosevi with riba (and, along with that cornucopia of other drugs required)! With this huge mix of dif drugs it would be hard for anyone to know what causes what sides - but riba you have known and so are surely knowing now. I wonder too about the otherwise wonderful and important drug prednisone having it's own particular nuance effects on a mans mind and body - I've heard of some people "feeling" prednisone "not so nicely", and others felt nothing but the benefit of it's potent anti-inflammatory effects! Had you ever had prior experience with prednisone before, to know if it too may be contributing to the current burden?

I don't know how many of your (suitcase of) drugs have been reduced or curtailed - I think they did stop one of your antibiotics? and they reduced dosages or frequency in a couple of the other drugs, like prednisone?, and I can't recall if that was you on Cellcept or not, but you have and did outline the tacro (and quite a few other meds), from anti-fungals to antibiotics). Did they reduce or stop your diurectic as well?

Regardless, I am guessing, that out of the vosevi triple, it would be the sof it contains which requires some effort on the kidneys part to excrete (more so than the vox or vel). Then, the riba has some work for the kidneys to do as well. Forgeting the HCV drugs, after that, the cellcept/tacro/and the prednisone require some kidney excretion as well, and in that in that order too (I think) - so your kidneys (never even mind being diabetic), are having to perform extra work, but kidneys ARE amazingly durable and resilient work horses tho.

Riba is triple taxing you, and your hgb/bloods (jeez I hate that stuff), I so wish it was otherwise, that you wouldn't have HAD to end up taking riba, but ... you are all in, and you are going to do it this time FER SURE! You ARE, you just keep remembering that!

Give thanks tomorrow (I will be) and I hope next weeks efforts in Seattle goes good. I have no idea what they would say about forms of magnesium what with the vel/vox? All I know is that I have found magneisum is imporant for me too.

Keep pulln RC, we know you and Chris are! C.

Tig · Admin

Gobble Gobble to you, too! I hope you have a wonderful holiday, RC. We all have much to be thankful for!

I haven’t seen those kind of numbers since I was on treatment. Riba just kicks the pants off of the Hgb and RBC’s. With a Hgb that low, you must be feeling pretty worn out. How are you holding up? Must be looking for an elevator and not the stairs right now? I remember being winded by just getting up and walking into the kitchen. All of 20 feet! Hang in there Warrior, you’ve got the magic elixir working its destruction most effectively!

I would check on Magnesium, Calcium and Potassium supplements for those cramps and bizarre feeling in your legs. It sure helped me. My gramma told me 40 odd years ago about that combo and it works. They are good for a lot of things. We need the extra calcium anyway. Last thing we need are brittle bones!

robertsamx · Guru

HI ALL, Having a better day today. Today I opened bottle #4 of VOSEVI. They added 4 weeks onto my 12 week treatment because I dident go UND until week 8. Most people go UND at week 1 or 2. They added RIBA at the end of week 8. This way I will be treated 8 weeks in the UND mode with both Vosevi and Riba and that makes for a better outcome of SVR. My weak immune system caused by all the rejection drugs just cant do the job of a healthy immune system. I would estimate that my immune system is working at about 25% Todays blood results are AST-13 & ALT-34 GFR back down from 55 to 47. All my past years my GFR was always >60 BUN 51 (8-25 normall) CREATININE 1.6 (.70-1.3 normall) Looks like the liver is happy and the kidneys are getting a little cranky.My Tacrolimus is hanging around 4.3 to 5.8 (5.0 to 20.0 normal) The white blood numbers are all on the low normal The Red blood counts are all dropping HGB 9.3 (13.2-17.0 normal) RBC 3.22 (4.20-5.70 normal) HCT 27.9 (39.0-50.0 normal) All red blood counts low mostly because of the RIBA. Other than the above numbers everything else looks ok for now. Going to Seattle end of next week for clinic and hopefully they will start peeling off some drugs. OBSERVER I will ask about the glycerinate then. Everyone have a nice Thanksgiving-we all have a long list of gratitude! :) Gobble Gobble :) RC

Observer · Guru

Robert,

Ask your Drs if you can add magnesium glycinate to your regime of pills, I had the worst leg/feet cramps even before treatment. During and after treatment I have had to double the dose because of that evil riba. The magnesium glycinate really does make a huge difference me.

stay strong dragon slayer

A

sailing shoes · Veteran Member

Jeez .... quite a trip RC. I, too, hate riba. There's nothing like it and nothing to do but ride it out. It hurts me to even think about it, but it has an end. Then you can get back to concentrating on the TP recovery. Good luck, my fried friend.

Canuck · Guru

You guys said it! Riba is bad, both for the virus and our souls. If anyone, it's you RC who has the kind of inner strength for this last big push. Some of us here will never truly know/appreciate what it is, to tough out riba (and lots of other things). Tig, can you explain the evil potato flakes for others here who may not be aware to what depths riba goes? C.

Lindsmatt52 · Senior Member

Hey RC-I think this board is just the place for whining and complaining! And we're all here to listen and encourage you on this journey and commiserate when necessary! I'm sorry that you're having such a rough time of it. That Riba sounds like a bear and a grizzly one at that! As Tig said, there is a light at the end of the tunnel and hopefully you'll find it soon. In the meantime, we're all here rooting for you and sharing in your frustration!

Tig · Admin

Hey buddy, you sound pretty good for a guy with a Riba monster lurking inside your head! Don’t allow it to rule more than it already does. I found your description very similar to the way I felt on Ribavirin. I had a terrible time with dizziness and did go down, more than once. I remember one time I ended up in a laundry basket, head first. I just keeled over, lights out and thankfully landed in a pile of clothes.......dirty clothes. At least it was a relatively soft landing! My advice, stay clear of potato flakes, they’re evil.

You have a demanding schedule right now, but it’s all for the right reason. I have nothing but respect for you and the motivation that has drove you to this point. You know the goal is achievable and the journey to it is full of obstacles, but I know you will find a way around them, you always have. Just stick to the plan and keep moving forward. Easier said than done, I know, but you have never let anything stop your momentum. No reason to think this road isn’t paved with the same successes!

Keep sharing your thoughts. There are no limits here, if you’re feeling it, we want to hear it. That’s what we do.... wink

robertsamx · Guru

Thanks everyone for the words of encouragement. All this is temporary I know, but physically I am (have ) turned into mush. At this point of the game when I get up out of my recliner I find something to hang on too for a few seconds just in case I pass out. I havent passed out , but get dizzy. My B/P is low normall. Walking up one flight of stairs is all I can do at one time, i get winded and legs get heavy. If I hold my arms out they get heavy and hurt, Feet cramp up all the time,Standing bent over slightly doing dishes for just a coupe of minutes and the L-4/5 starts to ach. Constant ringing in my ears (head)- will somebody answer the damn phone already!! I live by the clock, it runs my day- 5am riba, 9am anti everything pills,5pm riba&vosevi,9pm anti everything again. Racing head (thoughts),a good tremor that comes and goes!! I have gotten good at keeping the lid on the angry riba monster living in my head, hes not allowed out very often, And finally a pill to knock me out for sleep so we can start this all over again tomorrow.

I normally dont use the forum for whining and complaning - but this is really how its going.

It is temporary,It will get easeyer,and 6 months from now should all be in my past. I will do this and come out on top. One day at a time! RC

Tig · Admin

Hi RC,

I’ve been thinking hard about you and Chris. Sorry about the Riba. It can be a tough SOB. There has to be some issue with the anti rejection meds. Damn, your immune system is in the tank and fighting for every ounce of strength possible. That alone will make you feel like crap. Hold on buddy, the end isn’t far away. Just stay as healthy and cautious as possible. You can and will bounce back. These are the better days,not the hard ones, because the certainty of the past has been cleansed and replaced with hope and a new chance. I know you’re going to succeed, I have always known this was destiny. Something told me you would achieve this and you did. We’re all very proud of you for being as strong and brave as you have been. You have earned your Ribavirin PHD... Hang on a little longer, the train is nearing the Station.

Seriously, you hang in there! Old saying, but it rings true. We’re all here for you and Chris, you know that. Tell us what’s going on. Are you still at home? I hope you’re eating and drinking! You have to keep on top of that. Stay in touch when you feel up to doing it. We’re always ready for your updates. Good luck bro... you got this

wendyo · Guru

Glad to read the good news RC with the exception of the Riba doing its thing. Was thinking about ya while I have been away and praying for good news to read upon my return!

Canuck · Guru

HATE riba, and I've NEVER even done it! Think you're right tho (your combo theory) ... all of the above. .. (would be good guess!). You are still on the prednisone as well?? (I am of the mind that prednisone has it own special feelings as well!).

I do think (just guessing tho) that that 3/4A VOX may have it's own "special feelings" too - I could be wrong about that (as I am about many things!). I have only ever done sof/vel/vox once in my lifetime - how would i know what I can compare to, to discern what made me feel the way i did while on treatment, I had never done VOX before (nor vel nor sof!) no comparisons to know. Riba alone should be more than enough to account for the hellishness you are being subjected to! Sorry buddy. C.

robertsamx · Guru

This is by far the worst I have ever felt on RIBA. This is kicking my butt this go round! I dont know if its the anti-rejection drugs, or the Vosevi, or the Riba, or any combination of the above or any part there of! Confusin isnt it? RC

Lindsmatt52 · Senior Member

RC-I don't understand all of the test results but I do get the impression that things are looking up, and that's the best news of all! Keep on truckin' and know that we're all here rooting you on!

Observer · Guru

Thanks for the good news update. So relieved youre getting that extra meds without having to pay and that your kidney tests are improving....but Poor you.. that hgb is pretty low. Hang in there. 5 more weeks

tell Chris she is in our thoughts

A

Canuck · Guru

Oh WON-DER-FUL news RC!! (Well ... except for the how you are feeling part, and the hgb part, and the enormous strain and crapploa that they, and this journey, have been putting you and Chris through!)

So relieved for you that they finally came through with the additional 4 weeks, without you having to pay big cash for it. Ridiculous that insurance made it go through a double and outside appeal process IMO, a very unfair burden of concern and uncertainty they added the pile of huge responsibilities you already have to contend with. Shame on you insurance people, I don't CARE if THEY have protocols they think they have to exhaust - it was obvious what was needed, wanted, justfiable. Stupid, rigid, uncaring, blind insurance people I say.

So glad the kidney numbers are holding, I am sure you are all watching everything carefully, and they would not let things tip too far on any level of your bloods and systems, you're in for clearer sailing now RC.

Deep breath, try to enjoy the tiny bits of relief this day brings you. You will perserve through all of this, and you ARE winning - BIG time! Hmm, I think this calls for a cruise? smile C.

robertsamx · Guru

Well things are looking up!!Got some early test results last night and the kidney numbers have stabilize. The white blood numbers are low normal but in the normal range. My HGB has started its RIBA dive, Im at 9.9 now. I dont think I got this low on either of the first two RIBA treatments. At 9.9 I can feel the lack of energy at just 3 weeks on RIBA 1200mg. I will have my V/L results sometime late tomorrow and will post it.

Good news on the 4 week VOSEVI treatment extension, The external medical revenue board reversed the denial decision, and I am getting the fourth bottle of VOSEVI at no cost to me. The insurance company is paying for it per my insurance plan. NO CHARGE, NO CO PAY. I will have it tomorrow by 5 PM. We had a lot of help from our Dr and Gilead support path. Thanks Kara at Gilead support, Thanks Dr K and big thanks to nurse Lauren. Could not have done it without Ragdoll. This will make my treatment 16 weeks total, with RIBA added for the last 8 weeks. Just 5 weeks of riba/vosevi to go!! RC

Observer · Guru

So glad you are such a warrior Robert.

robertsamx · Guru

Good morning girls, (and Tig) thanks for looking in on me. Going for blood work in about 2.5 hours, hoping my kidney numbers are improving. Will know the results at the end of the day. Still no word from Drs-no news good news?? If kidney numbers are still trending in the wrong direction they are going to get a ear full!! I will also have a load test done but the results wont be available for a few days. Still fighting insurance for bottle 4 of vosevi. Its gone to level 3 appeal which is sent out of house to a Dr review board and they will have th final word. I will be cutting it close to the day I run out of Vosevi bottle #3. I never thought I would need to fight so hard for Meds. Gilead support path has been a big help guiding us through all of the appeals. Kara at Gilead support has been great, she is the one to ask for should anyone need help acquiring HCV MEDs through Gilead Pharmaceuticals. Not to worry however, I will get the Vosevi in time so I wont miss a dose. The Hospital pharmacy has a bottle waiting for me to cough up 7K if the appeal goes the wrong way!! Getting better each week.Sleeping much better, but still weak in the legs and arms. its coming back slow, RC

Tig · Admin

Hey RC,

Thanks for the update. I’ve been thinking about you and Chris. I want to think the reemergence is simply a mop up stage. You were on the edge when you had the first undetected and the next showed those stragglers. I think you’ll have good news this week!

Stay tough, Brother. The light will shine bright when the time comes. Nothing has been easy for you, but your day is coming Dude! I know it

I’m relaxing for you!

Lindsmatt52 · Senior Member

RC-you have certainly been through the ringer and back. Time for all of this nonsense to end and for you to only get good reports from now on! But if anyone is strong enough to endure this fight, it's you! Hopefully victory will be that much sweeter when you finally attain it. You have so much support and love coming your way!!

Canuck · Guru

Thanks for keeping us all updated, cause you know we are all concerned for you and feelin for ya. Wish things were not so hard, all of it. If any people were the right people for winning a hard battle it IS you and Chris, you will do it, you both will do it, and we are all pullin for you. C.

robertsamx · Guru

Hi All, Around week 8 (10-25-17)I was UND. This is what the report saidHCV RNA VIRAL LOAD,LOG IU/ML Not Detected

Then Around week 10 (11-8-17) I was Detected. This is what the report saidHCV RNA VIRAL LOAD A <1.2 Detected Unit:LOG IU/ML. HCV RNA VIRAL LOAD A <15 Detected, then goes further by stating viral nucleic acid detected below the lower limit of quantitation for this assy.

Both test preformed at the same lab. The link below will take you to a good explanation of DET and not DET. Im concerned about the results but not freaking out. I will have a load test done again in two days and see how Im doing. I know that <15 is considered undetected back a few years ago, but the wording DETECTED means that my count is someware between 15 and 1. And this whole HCV thing started 40 years ago with just one virus entering my blood stream and starting the multiplication process. RC

Canuck · Guru

Oh RC and Chris what a lot you are forced to manage. VERY unfair. Way beyond exasperating, it's too serious.

Concentrate on getting your own vosevi for Nov 22 , is all I can say.

Am I reading between your lines correctly? - are you saying you ARE, or, are NOT detected in your 11th week?? We know you were UND at 8 weeks.

What have any VL's been for week 7, 9, 10 and 11?

What specifically are the low kidney function numbers you refer to??

I'm trying to bite my tongue, but man, I could just kill them for what they are putting you through! You know we are all in your corner RC, wish there was something more we could do to help. C.

robertsamx · Guru

The art of making chicken salad.What a couple of weeks the last two have been. Miss information amongst the people at my Insurance company is rampant,add miscommunication between Drs and Insurance Co,A pinch of level one appeal denial,a dash of peer to peer upholding the level one denial, some moving on to a outside review appeal, throw in a little Gilead Support Path help, go from UND to DETECTED somewhere around week 12,sprinkle on some concerning (low) kidney numbers, add the fact that your Post L/T coordinator hasn't called you in over 3 weeks to even discuss your blood work, mean time the kidney functions are still trending downward,why not add 1200mg of RIBA to the cake mix along with the other 26 meds a day, and dont forget your Vosevi.Now that we have the cake mix ready, its not ready! we need to let it sit for a while and rise before going any further. This constant waiting from one day/week/ to the next really is taking its toll on us. We feel like we are the conductors of what should be a beautiful symphony and each member of the orchestra are reading off a completely different piece of music resulting in instrumental chaos!! We cant fire the band, were too vested, some how we need to figure out how to make chicken salad out of chicken sh!t. It can be done. RC

Canuck · Guru

Hey RC,

So, what's the news? (if any) from your doc (re: the peer to peer outcome) - did he get anywhere with it, or has he not informed you of any decisions by insurance yet? Perhaps he has gone on to the next step, of the final kind of appeal?

Regardless of what your doc has or will be able to do for you on the insurance appeal(s), are you (otherwise) all lined up to recieve your Vosevi by Nov 22 (by paying for it yourself) if need be?

If your SOT was Aug 29, then (i think that's right?), that your last pill of your 12 weeks of Vosevi will be on Nov 21?

BTW - have you still been getting weekly PCR's?

The only one we were missing knowing about was week 7 (did they do a week 7 PCR??), you did inform us of all the other ones that were done from day one on to week 8 (with your week 8 one being that lovely UND biggrin ). Did you also get any PCR's done for week 9 and 10?

I am glad to hear (on another thread) that you are feeling that it is maybe "a little bit" easier to physically move around now, but still, I am lamenting you having to be on riba again, on top of the other cornucopia of drugs you are required to take! But ... I must keep reminding myself ... it is ALL (undoubtedly!) to the correct end! I just wish it was not quite SO much work and the going easier. This IS such hard work. Keep on RC, you ARE doing it!

I am very glad if we can assume your other blood values (RBC/WBC's) are holding OK, are copesetic?

Hard to believe ... that we have already celebrated Nov 6 (the 3 month anniversary of your LT)! biggrin C.

Canuck · Guru

Hey RC,

I did get the rest of it (the first time), the only part of it that was throwing me was an older post from you where you indicated you had been checking with the pharmacy (a while back) and you saw that within days, the extra 4 weeks of vosevi had already been arranged. Thus, I was under the impression (back then) that your extra 4 weeks of vosevi (to add to your 12 weeks) had already been approved and was a done deal to allow you 16 weeks of treatment.

Currently, as it turns out, instead, (for the moment) you are now back to only doing the original 12 weeks of vosevi, with now, riba being added to the last 4 weeks of the 12 weeks. Apparently your doc has also arranged for a total of 8 weeks of riba (commmencing week 8), even tho, right now, you do not have the additional 4 weeks of vosevi approved yet to take with the 4 weeks of riba you have left.

Your doc must be counting on the peer to peer to get you the extra 4 weeks vosevi to go with the remaining 4 week balance of your riba. I hope he is successful, you should not be having to pay out of pocket for the extra 4 weeks of vosevi!

Just wondering why your doc did not opt to start your riba at week 4 when you still had a VL of 469 ? He had 8 weeks of riba pre-approved (because that IS an on-label use), but chose not to institute it until week 8.

Good you have been getting the weekly VL's, I had been wondering about that ... your VL's were ... week 5 = 87, week 6 = 70, and week 8 = UND ... but what was your VL at week 7?

I agree with Tig. (Had you been trying to procure your own drugs out of country) ... being that epcusa is identical to vosevi, except that it does not contain the NS3/4A (VOX) ... by being "creative" you could conceivably have had epclusa plus some other substitured NS3/4A (similar family as VOX), but that is definitely off-label as well, and not ideal to be switching up to a new different NS3/4A's at this late date - better to continue on with the exact same triple components you have been on all along (and, as well, of course, now the additional riba they introduced).

Perhaps your knowledgable advisor was considering only that it was not a good idea to switch from vosevi to epclusa alone, that I would agree with. You would need the VOX (or another NS3/4A at minimum, if that would even be a possibility to sub with a dif 3/4A at this late date!), and now, you would need to continue with the added riba as well.

Good you are prepared to pay for the extra 4 weeks of vosevi (that is sitting in the pharmacy for you) if insurance will not cover it. Under the circumstances, you will feel better/safer knowing you have an additional 4 weeks of vosevi and riba. How is that done? - a 7000.00 payment?, do you just whip out a credit card for the pharmacy and they ship it to you?

Hate to see you having to take another riba ride, and hate to see you not having a more stress-free ride this time around. I am of the FIRM belief tho, that you WILL be UND from now on, and at at EOT+4 and on! C.

-- Edited by Canuck on Tuesday 31st of October 2017 05:59:07 PM

Tig · Admin

RC,

I would like to know the supporting evidence that Epclusa is ineffective following Vosevi. I agree that removing the NS3/4 inhibitor changes the dynamics, but wouldn’t the continued assault of the two best NS5a/b inhibitors and Ribavirin be of potential benefit? Adding a different NS3/4 that would be generically available might round out the approach. Afterall, this is YOUR Polaris 5 trial... We’re just doing our own R&D!

You have a new liver and the delays reaching this UND are similar only when you’re looking at the calendar. You no longer have a scarred up hunk of leather in your belly with viral hidey-holes, laying ready to ruin your parade after 4 weeks >EOT. This time it’s going to be different. SVRville, Baby! That’s my story and I’m sticking to it! wink

robertsamx · Guru

Hi C. I was never approved for The extra 4 weeks of Vosevi. My Dr. Added it because I was still detected at week 6-7. The original prescription was written for 12 weeks. Adding the extra 4 weeks is considered off label and that is why the insurance co. has denied the extra 4 weeks. I dont know how the peer to peer went yesterday.This is my third treatment,on the first(1) treatment I was UND at week 8-9 - the R/X was 16 weeks sof/riba.Relapsed 4 weeks after EOT.... The second treatment (2)I was UND at week 4 - the R/X was 12 weeks sof/riba/peg. Relapsed 4 weeks after EOT. Now on treatment three(3) I went UND at week 7-8. The R/X was Vosevi for 12 weeks. The Dr. Added RIBA because I was still detected at week 7-8, so the riba has only been on board for a few days. This is also why the Dr. Added 4 more weeks of Vosevi. All said and done it will be 8 weeks just vosevi and then additional 8 more weeks Vosevi and riba 1200mg a day. So this way I get 16 weeks of treatment instead of 12 weeks. So this i the third time I have been UND. Because I don't get und early in the treatments the Dr. Added the riba. It could not have been avoided with my history. The RIBA R/X was written for 8 weeks and it has been approved by insurance co. It appears that the Dr. Had a backup plan using riba if I dident clear the virus early in this third treatmen. Treating with Epclusa after treating with Vosevi wont work, at least that is what i have been told by a reputable source. I havent asked the Dr. About this. And yes of course I will spend the 7k if the insurance doesnt work out. I have relapsed 2 times at EOT, so im not claiming that I am cured just yet. If Im Still und at 4 weeks post treatment then we can call it cured,as of now Im UND again!! By the way- the R/X for 4 more weeks Vosevi is sitting at the pharmacy just waiting to be filled. RC

wendyo · Guru

So much to deal with and you are a trooper for sure. Keeping the prayers going and give Chris a hug for me.

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