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Hep C Discussion Forum -> On Treatment -> Riba dose going up...hanging in there.
Post Info TOPIC: Riba dose going up...hanging in there.
BetterLate


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RE: Riba dose going up...hanging in there.
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Thanks, Canuck, for the kind words! 5-5 does sound like a lucky number! I will keep my fingers crossed! Yes, I go in for labs tomorrow. I admit being frustrated about the whole VL thing. The only thing I wondered about is that if they tell patients that their virus is no longer detected (or whatever they would say), maybe people are tempted to stop treatment? I wouldn't have done that, but I could understand the temptation. I try to assume innocence with people (not very successful at that all the time, but I do try!) so hate to think they just blew me off.

I am not bouncing back as I had hoped, I am still very tired and lethargic, I even still have the rash. The only thing (which is a BIG thing) is that I have had NO nausea or vertigo since stopping the two drugs. That is happy news, indeed!

I will definitely be vocal about learning where I'm at with the cirrhosis and I think they'll have to do some type of testing to get a baseline there. While the GI clinic has been tough to work with, I actually have a VERY good primary care doctor who I think will advocate for me once I'm back working with her. We shall see!



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
Canuck


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Heeeey Betterlate!!

TGIF has a whole new meaning, I am SOOOO glad you are finished!! Congrats - whew!

Wow, you did SO well, despite how your regime may have made you feel, you managed to work through it! Very commendable.

I've now seen this very regime, the technique that you got, of the suggested "ramping up" of the riba, in my reading BTW. The theory and benefit of it makes good sense.

Your labs show so such dramatic improvements! Thee most telling was your "around week 4 one" where your formerly high ALT/AST's crashed - that is when your load most likely got smashed and crashed to a decimated obliviated level too!

Really bad medicine (in my book) to not keep you updated on your VL's - unforgivable - but I know how hard it can be to get any kind of good flow of communications with these people (especially given your description in the logistics and busy-ness of the facility where your treatment was handled). Your place kinda sounded like my place, many dif. people with dif priorities, I struggled for certain information all along the way too (at times), and still do! I am now on a bi-annual 5 year follow-up plan - so now my simple requests and questions (asked in 6 month bites) just takes all the longer to get answered or addressed! It is a frustrating process. But that is really bad that they would not keep you apprised of your loads. Take comfort in knowing that your enzymes/LFTs showed your crash. I too could not tell by "how I was feeling" on treatment, that I was cured, did not feel well, certainly could have never worked like you were able to muster through!, and I didn't even do riba! You are definitely made of some tough stuff lady!

ALT/AST from 162/133 to 55/52! just during week 4 (telling, and very dramatic), and you maintained this direction to the end (now 43/45)!

Even your Alk. Phos. likes what is going on!, from 178 to 136!

Despite all, your platelets went from 109 to 126.

All good news.

Did you have to present yourself, just now, (at EOT) for some more bloods?, as your last draw was Apr 20?

Hey guess what, your EOT date is the same as mine!! I was just thinking about my EOT date last night, one year ago May 5 was my last pill too! What a lovely day for us to mark!

Regardless of their planned "every 6 months" U/S follow-ups for you (which is great BTW), keep asking for other and additional (ongoing) imagings, such as CATs. And, despite their plausibe explanation for why they cancelled your fibroscan, you can still, also, keep asking for fibroscans to be added (at some future point, in an onging fashion) as another component of your follow-ups going forward.

So LOVELY you are done dear! biggrin C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
BetterLate


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Nope. I have NEVER had a VL shared with me. At a certain point, I just gave up asking about it.



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
JimmyK


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Glad you checked in. wink

During treatment, did they do a 4 week VL?

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
BetterLate


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Hi, guys. Just thought I'd check in, just took my last dose yesterday morning. The last few weeks were pretty rough, but I never missed any doses and only missed 2 days of work. I don't really feel any different yet, but I am glad to be through treatment and hopeful for good news in 12 weeks. My test results are all in my biography, but I'm also posting them below in case anyone is curious! I learned they didn't want to do fibroscan due to fluid skewing/preventing results, and I won't know my viral load until they test me 12 weeks post-treatment. I have been quiet on the boards lately (just exhausted), but still checking in and appreciating the community spirit and support.

PRETREATMENT

2/7/2017 Total Bili: .7 AST: 133 ALT: 162 Alk Phos: 178 Platelets: 108 INR: 1.3

2/10/2017 - TREATMENT BEGAN

Epclusa+Ribaviran 600mg:

2/20/2017 Total Bili: .6 AST: 47 ALT: 64 Alk Phos: 174 Platelets: 109

2/27/2017 Total Bili: 1.1 AST: 52 ALT: 55 Alk Phos: 143 Platelets: 120

Epclusa+Ribarian 800 mg:

3/6/2017 Total Bili: 1.4 AST: 48 ALT: 52 Alk Phos: 169 Platelets: 103

Epclusa+Ribaviran 1,000mg:

3/13/2017 Total Bili: 1.0 AST: 48 ALT: 48 Alk Phos: 158 Platelets: 108

3/20/2017 Total Bili: 1.4 AST: 45 ALT: 47 Alk Phos: 137 Platelets: 126

3/27/2017 Total Bili: 1.3 AST: 44 ALT: 46 Alk Phos: 136 Platelets: 122

Epclusa+Ribavirin 1,200 mg:

4/3/2017 Total Bili: 1.0 AST: 46 ALT: 48 Alk Phos: 147 Platelets: 112  INR: 1.3

4/20/2017 Total Bili: 1.2 AST: 45 ALT: 43 Alk Phos: 136 Platelets: 126 INR: 1.3

5/5/2017 - TREATMENT ENDED



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
Canuck


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Ah, good, your U/S was that recent (January). Really good they put you on the "automatic" 6 month recall thing for repeat U/S's. (One would think they WOULD have a standard protocol). Strike one thing off your list of "things to make sure are arranged". smile

Yep, I would try to ask for as much as they will give you, more is better in my book. And, I commiserate, I know how "not" easy it can be to communicate needs and queries with all these folk. Your pre-treatment VL must be sitting, somewhere, you'll track it down. I wish they had not cancelled your fibroscan on you, it being trumped by the U/S, it is still a good tool to have for future comparison, and an easy one to do. Maybe they will reverse their "we don't need a fibroscan now" decision, and let you have one now, and then you can ask for repeat fibroscans periodically in future to help follow things aside from U/S's alone. U/S's are great, real valuable info, as are CATs - I am fairly sure now, now that we know you ARE in their U/S "auto-radar call-up system", they may well do a CAT as well, if and when "they" deem it warranted.

Would the place you have U/S's or fibroscans  (or a CAT scan for that matter) be far, far away from you, hard to get to? Dif machines in dif facilities - or is there a facilty not too "away" that has all three machines?

I am so glad you find you are able to put up with this riba ride, as you express, that in certain ways it has not been too rough. You're a tough gal, good attitude counts for a lot in helping yourself get through times like these. 

Sleep is good! smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
BetterLate


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Hi, all...

OK, let's see. My ultrasound was in late January 2017, and when they diagnosed cirrhosis, they enrolled me in a national liver cancer screening program (ultrasounds every 6 months). I went back and looked at my emails and found this (so I was wrong?):

"1/25/17 ultrasound indicated trace to small amount of free-fluid (ascites) in the abdomen. Because of this, Ribavirin was added to the med regimen to treat the hep c virus with more vigor. Your genotype is 2B. Baseline viral load is to be completed prior to starting treatment. (ordered)"

SO...it sounds like maybe they DO have the viral load number pretreatment and just haven't shared it with me? I have asked for it repeatedly, hmmm. I am scheduled to get labs again tomorrow night (3 weeks), and my 4 week labs are the following Monday. I will ask for the pretreatment VL and if a 4-week VL will be ordered before then. I will mention the fibroscan, too. Canuck, I like the idea of having that scripted! It is not easy for me to call them (it's a liver clinic and I swear I talk to a different person every time I call), but I can do that via email.

My added riba dose has not been an awful thing. I split the dose 400mg am and 400mg pm when I take the Epclusa. I had some trouble sleeping the first couple of nights, but last night slept 10 hours (almost straight) and woke up feeling more rested than I have in a long time.



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
Canuck


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Hi BetterLate,

I agree wholeheartedly with Tig and SF.

In my book the more tests and test results you get, the better.

The more info and feedback you have, as you go along (gleaned before, during and after treatment) the better, not only for your own knowledge and reassurance, but also because imaging and fibroscans are very good tools for comparative purposes, to help best follow and track your health progress on into the future.  Hard to know exactly where one is at, if it was not clear where you have come from and have been!

Besides, I think it is kinda cruel and unusal punsihment to keep a person waiting for their VL until EOT+12 weeks! We had another fellow here from the Pac.NW who was kept waiting until EOT+12 weeks too. I hate that! furious  Such a moral booster to see the VL plummet, but the plummeting ALT/AST's are very important "key" indicators and you DO have those, even if it turn out true that their intention is to keep you waiting for a VL until  EOT+12. Do confirm what their VL testing plan is for you. 

Phone and ask your nurse to make this specific request to your doc on your behalf - ... "please tell me that there is a planned VL for me at week 4 and 8 and 12, if not, please can I have one?? - that you would feel SO much better to be able to see that your viral load has indeed dropped already by week 4 or even 8". And, by and by, get them to confirm how many more VL's you will get after that.

WHAT MONTH of 2016 did you have your U/S? I hope it is still current, within 6 months old?

So, once you know the U/S month, then also ask her to ask the doc for you (on the basis that you were told you had cirrhosis and acities in X month of  2016, and being that ALL you have ever had is this one ultrasound on __X__ 2016), ... "please, could I have another repeat fibroscan, to try to see how hard my liver is?, ... and, could I please also have a CAT scan?, and, ... could I please have another repeat ultrasound on __X__ 2017?, as my only other ultrasound will already be six months old on that date".

No harm in asking them for max. imaging and VL's, all they can do is say no, and not spend money on you, or, you might get more than they had been planning for you. wink

You would still be ahead in the info gathering game, if they did say yes to even some of it. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Hey Kris,

I just noticed your mention of ascites in your signature. What has been done to address that problem? With that complication, you need to have some good medical monitoring going forward. Sounds like you've literally been cut loose until EOT +12. When you can, get a permanent specialist somewhere. Are you in a rural location? 

With a cirrhotic liver, you need abdominal ultrasounds every 6 months, mixed with an occasional CT or MRI to monitor for HCC. Even after you achieve SVR you have to follow that guideline. That gives you and your doc a record of your progress. Have you been following a schedule like that after you were diagnosed with cirrhosis? Questions, questions! 

Keep drinking that water and remove all doubt from your mind. The next two months are going to go by quickly. No, really!! Doesn't seem like it now, but it will... smile



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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BetterLate


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Hi, Tig:

I don't have the ultrasound report, they just sent me a letter saying it confirmed cirrhosis. When I met with the liver clinic nurse (my case manager), she said that my liver was not enlarged, but it was 'bumpy' or 'lumpy' or some other technical term like that. She also noted the one small calcification at the probably biopsy site. I honestly don't think I'm going to see these people again. Their office is in one city, I get my labwork done in another, and our communication is via email.



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
Shadowfax


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Congrats on your treatment.

I only want to add is I believe they need to do a VL at EOT to ensure it was successful and then a more definitive one at EOT + 12 for SVR. 

It's a good rule in the very unlikely event you are not cleared, they can look at other options but you are looking good. 9 weeks to go.

 

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Tig


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Can you get your hands on the ultrasound report? A routine abdominal ultrasound isn't a reliable exam for determining cirrhosis, certainly not enough to determine levels of fibrosis. Did they mention nodularity or signs of inflammation? If your doctors are assuming you are cirrhotic, they aren't providing you with an accurate determination of your fibrosis stage. I know a little about ultrasound and there are several things that can affect the radiologist's impression. It would be helpful to see that diagnostic report if you have it.



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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BetterLate


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Thanks, everybody! What a great cheerleading section! Canuck - they have me getting my blood drawn weekly. I credit the 'Riba Ramping' technique with having been on this board learning all I could about the drug and asking a lot of questions of my care team and letting them know my concerns based on my normally really low tolerance for any kind of drug (pretty much everything makes me hurl!).

I do wish I had the f scores and viral loads, but they said they won't do VL until I'm 12 (I think) weeks post treatment. I have only had the ultrasound, at which point they confirmed cirrhosis and cancelled my fibroscan. But I really have no complaints, and am still feeling cautiously optimistic!

Thanks again for all the support, it really does help!



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
Observer


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smile   Those numbers look pretty darn great! I'm really glad your platelets are staying up seeing as you are on riba, and are doing all that physical work! 

A quarter of the way through.........whoooo hooooo! 9 short weeks to go

Stay hydrated  

Alison

 



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Canuck


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Yup, she's a trooper!. Glad the skin is some quieter. You must pleased with yourself not missing any work, considering all the other hard work you are doing.

Your labs are beauties, really good early responses.

If your lab's ref. range for "Total Bili" is in "mg/dL" (in other words, if the result you posted is 1.1 mg/dL) then my book says 1.5 mg/dL is the high end for normal range. You would have to be 1.6  to be over range. I assume your lab uses mg/dL and range the same as mine.

Tig is right tho, bili's (as well as some of your other labs) will fluctuate. Don't let some common or inevitable fluctuations stress you.

So, as your doc felt riba an important and necesary drug to have in your regime as insurance, then, to introduce it and build it upward this way, seems a gentler/kinder start. I can't recall this ramped "upward" intro into riba being used here before (I could be wrong), only ever recall normal starting doses, and on occasion, sometimes being decreased (or stopped) in the cases of marked intolerances. This kinda sounds like a wise thing your doc did, to get you used to and tested out on riba starting at a lower dose!

Do you have your blood letting and doc visits planned out? Do you get a week 4, and week 8, and (EOT) week 12 bloods, with viral loads drawn?? 

Congrats into your week 3!! You are doing super! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Those are good improvements in your numbers, yeah!! These treatments have a tendancy in some people to raise bilirubin. Your doctor is aware of this or should be anyway. These drugs affect a lot of systems. When you have your tests done before treatment (baseline) and they see these changes occurring in your on treatment tests, they know what the likely reason is. It's why we keep seeing our doctor before, during and after treatment. The Bilirubin levels will improve after treatment. I wouldn't worry about it. -jmho-

A lot of changes are expected and your doctors know this. What they don't know is how you are feeling, mentally and physically. Be sure to tell them. They need to hear that from us. Most of them have the treatment understood, but know little from the patient's vantage. Take notes between appointments and ask questions. It lets them know you're interested and educating yourself on what's what.



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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BetterLate


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Hey, that's me at my Sunday's best!



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
JimmyK


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Greetings,

 

The drop in ALT and AST is significant and demonstrates a liver that is getting some much needed healing rest.

The only thing that has me alarmed is your picture. LOL

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
BetterLate


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Howdy, ho. Just checking in. I'm in my third week of Epclusa/Riba. Started treatment 2/10/2017 with reduced dose of Riba at 600 mg/day and yesterday upped it one pill to 800 mg/day. My Monday labs:

Pretreatment:

2/7/2017 Total Bili: .7 AST: 133 ALT: 162 Alk Phos: 178 Platelets: 108

Posttreatment:

2/20/2017 Total Bili: .6 AST: 47 ALT: 64 Alk Phos: 174 Platelets: 109

2/27/2017 Total Bili: 1.1 AST: 52 ALT: 55 Alk Phos: 143 Platelets: 120

Rash is better and I sleep OK. Having more headaches and fatigue and achey joints, but I have been tearing down and moving bookshelves and desks at work (I work in a library) so have had a lot of physical labor going on this week that would have tired me out on a good day. Haven't missed any work. A little surprised to see my Bili go up so much, hope I don't start turning yellow. Almost a quarter of the way through my treatment, and still feeling quietly hopeful. Be well, everyone.



__________________

56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 
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