I started having osteoarthritis about 4 years ago slowly getting worse. Hips, knees, mainly but also shoulders and elbows. Can barely move in AM on arising. I am having to take 50 mg tramadol daily now. Not happy about that as tramadol is addictive. 50 mg once daily is a minimal dose though. Next visit to my primary will discuss options. I have some hydrocodone left from dental surgery which takes pain away better but would consider daily opioids as a last resort. Once you start very difficult to stop. I am curious to see what if any effect zero VL and improving liver function will have on the arthritis.
Canuck said
Apr 7, 2018
Tig is right the way he expresses the "officious-ness" of SVR12, making the "large, round person" sing (hee hee, as he so carefully and tactfully put it!), and of the zeal we all want to experience with getting a profound crash and UND at 4 weeks! So true, that still, even with the new DAA's the "early UNDS/crashes" do not always happen (for everyone) even though we are commonly seeing this happen with great regularity nowadays - I was like you, with a (very telling) crashing VL "early", BUT, mind you, technically, I will still detected half-way through treatment. And some of our others, some of our Mavers, right here and now, were also being detected after the magical 4 weeks - everyone wants to experience that (early UND-envy I call it), it means both nothing (and everything as well) cause really, in the end, it's the "early" downward crashes (like yours and mine) that are are simply testifying that the drugs ARE working for you, and will work for you, extremely successfully - that's worth a big un-official celebration, in my book. Officious-dom parties has been historically been reserved for SVR12, and, we used to be able to double-hardy-party with a nice repeat SVR24, but that too is being revised ... party-poopers! As history and the drugs ever improve, perhaps with immunization and eradication one day, maybe soon we will not be allowed to party at ALL! I will still celebrate every single downward facing VL until then. Your doc is no doubt pleased and confident with your vigorous EARLY HUGE VL crash at 2 weeks, so am I! You were (probably) already UND at 4 weeks! I just love epclusa!
Ya, me too, I have to drive 4-5 hrs one way to get a fibroscan!! With bad weather it has taken longer! The big city centre there (where my hep guy is, so ALL my hep treks are there) have quite a few places that have fibroscans down there at - but up here, even over in the next "fairly big" city centre (only a one-way 2 hour drive) STILL they have not bought a fibroscan machine to offer to folks, even at their otherwise fairly up-to-date hospital! I CAN get a CAT scan or an U/S (at that city that is only 2 hours away) tho. But what's with that! - I agree, you would think that for such a relatively low-cost bit of equipment to acquire, with such good simple diagnostic info to offer, and so many liver pts. out there in need, that fibroscans would be more commonly found, easily!
Neat you researched and knew where the fibrocans lived! - I did that too, one of the first things I worked on when I first got diagnosed, so as to help ensure that a needle biopsy might not be required. Made sure my doc (the one I ultimately ended up with) had all the best things for me (running good drugs trials, AND had his own fibroscan machine too)! Mind you, his machine is an earlier model, no CAP capability - thus no handy "steatosis" info via that machine , which would have been of interest to me (in the beginning) as I showed a degree of fatty liver via U/S pre-treatment, but we all assume (now) that that has resolved as far as I know. I tried hard to position myself in the ideal location to gain what I needed, even when it turned out it was a long trek away. We usually stay overnight on these aways.
ah, so you are making do with the tramadol, you have options with the other "scripted" analgesic you mentioned you could get, should need be. Maybe, with ridding yourself of the HCV, someday you might see some improvements that way, perhaps some lessening in some of your discomforts associated with your osetoarthirits?, ya never know! Sumpin else to hope for. Wherabouts are your arthritic pains and how long have you been dealing with that? Hope it is not too severe.
Sheesh, I am exasperated with Medi-care and "guidelines", and I don't even live there! Despite all, you sound like you are in very good hands with your doc and epclusa, even though you are forced to pay bigtime for it.
uh-oh, it's late! Later, C.
-- Edited by Canuck on Saturday 7th of April 2018 05:53:28 PM
-- Edited by Canuck on Sunday 8th of April 2018 04:47:22 AM
Tig said
Apr 6, 2018
Hey John,
That blood work schedule is fairly standard and correct as written. I agree with your doc, SVR 12, even SVR 4 has proven to be accurate of a sustained viral response, as in dead Dragon. The old SOC's were more prone to relapse during treatment and nearly always by EOT +4, if it was going to happen. These new DAA's work differently and I've seen more success with them than ever before. I do have a friend that completed 12 weeks of Harvoni, and didn't achieve her undetected status until EOT +12. She tested "Detected but <15" from about week 8, if memory serves me. She was convinced that she would relapse, but her EOT +12 viral load came back undetected and she has remained that way for two years now. So I always tell people, it's the +12 week viral load that counts. Of course it's always nice to see that result come back undetected as soon as possible and usually does before the end of treatment, but it doesn't always work out that way. The large, round person doesn't sing until EOT +12!
Good luck! We've got some proven advice when you're ready to rock n roll... I look forward to your progress!
lamassu said
Apr 6, 2018
Hi Canuck,
I have tests next scheduled the day after I take my last Epclusa pill: CMP 14, CBC and Hep C RNA Quant RT-PCR. Followed by EOT+12 week VL. For my piece of mind even if I am zero at EOT and EOT+12 weeks I will push for a VL at EOT+24 weeks if Medicare will cover it. Also another FibroScan at EOT+6 months. These are expensive tests and Medicare has guidelines on how often tests can be repeated. There are only 20 FibroScan units in my state. I have to drive two hours to reach the closest hospital with one. I'm surprised all major hospitals don't have one yet. For arthritis I take tramadol as needed.
Canuck said
Apr 6, 2018
Hi L.,
Oh dear! I was sorta hoping I wouldn't hear you say what I was suspecting (about "costs"), but alas, it is very true. How tough and horrid that system IS down there, when there is this big out of pocket aspect. And that there is no in-country choice about it, that for you the "improved" choice ended up being ... having to spend out of pocket about $5000.00, already! Nasty, but ... worth the cure mind you. I cannot say our system up here is all that people think it's cracked up to be either, I could go on about the nuances and realities of health care in Canada, but it's too long and convoluted to do justice to that topic in a post. Suffice to say, not necessarily access to "treatment" alone, but more so drug "choice" that has been and still is too slow to come and people have and can experience "limitations" on the public "system" for various reasons, especially when you get down to the "fine-print" sometimes. A couple of Canadian folk we know, right around here, not so very long ago either, had to get their own (superior choice) drugs out of country due to this very problem. Sad, that cost/access (of sorts) are problems that can still be found "in the way".
Your doc sounds good, I agree wholeheartedly with all your doc has done and expressed. I fancy and venture to say I feel the "early" crashings we witness (that you have also noted about being on these new/good/potent DAA's) only heralds/spells the success of a person's outcome! We seem to see this early crashing with quite a few of the newer DAA's (but i think especially so with VEL) - I could well be "over"-optimistically generalizing too much, but I'm mostly just counting the early crashed VEL heads on this site as an example. I believe the early crashings (the potency of these new DAA's) carries a lot of weight - I am not so much relying on or dwelling on "stats about relapse/late relapse" these days anymore (especially in your case, period), and certainly not beyond SVR 12, in this era of these powerfully effective drugs!
My interest is only in having you know that your fibroisis will reassuringly be followed and for you to be able to obtain your Fscore regression feedback (that I personally found soooo rewarding), I would be ecstatic if your next fibroscan occured at one year post-treatment, as long as it does get continued following. That was my only impetus in pushing for SVR 24 following - we'll all be just as happy to help celebrate your 1 year SVR especially knowing your (by then likely) reduced Fscore and evidence of other improvements! You may just end up pleasantly surprised how much resolution/regression you gain!
I was lucky to get in a further trial (after my drug trial), where i am followed at no cost by the drug company (well... relatively no cost to me, in theory!) - dif story if one has to pay out of pocket for everything, or rely on standard bureaucratic bean-counter systems to try to get max. following. The drug trial companies seem to be more motivated to spend the money on you to follow you. I am a big believer in good following. I get many checks (every 6 months for the next some years) to follow my health and fibrosis levels. Fibroscans/and many bloods included/I've also had one CAT scan and one U/S so far as well. I was not thought to have a higher Fscore than F4/12.6 kPs's pre-treatment.
So, aside from your 2 week VL/bloods, you did not have today, and will not have any further VL/bloods done until the EOT one?
Did he express an opinion to you about what best to take for pain?
It must be such a relief for these docs, to be able to give to us, and see us getting these good drugs these days! C.
lamassu said
Apr 5, 2018
Canuck,
I am self employed and in a state where Obamacare is unreasonably expensive; also cost of DAAs was out of reach even with Obamacare.
With Medicare first month supply was $3600. Second month was $1250. Have to wait to see what the final month costs.
My gastroenterologist told me another Fibroscan before a year has passed would not be useful. Also there is no guarantee my fibrosis will improve but I can hope. I do not have cirrhosis probably based on Fibroscan (would need a punch biopsy to be 100% sure I think) and fortunately did not wait too long before starting treatment.
This doc is sharp and up to date so I am trusting his judgment. Plan is EOT VL and then an EOT+12 week VL. I can always ask my primary for another viral load at EOT+24 weeks but my liver doc says consensus now is SVR12 is accurate. Even back in a 2014 study 99.7% of patients who reached SVR12 also reached SVR24. If relapse occurs it was most likely within 4 weeks. I am just very grateful to finally be fatigue free and my stamina is increasing with every week that passes. Thanks for your sage advice.
Canuck said
Apr 5, 2018
Hi lamassu,
Oh that's great, you reported back right away! Sounds like a good visit with your doc!
So, did you have (or will you be getting) a 4 week blood draw done for VL and LFT's (aside from the 2 week one you had done)?
I assume from what you say, you two do have planned another EOT VL and then a EOT+12 week VL. (Yes, some docs are not doing SVR24 week VL's, when you have had early UND's at 4 weeks and at EOT and have a SVR12).
Still, at F3, kPa 12.4, that is still significant fibrosis (which WILL in all likelihood regress and resolve/improve - which has probably already started to improve by just being on treatment!) which (as part of your health following) I (personally) would have another "health" check-up done at the EOT+24 week mark, (and if it were me) I would still throw in another VL along with standard LFT's (just because) AND have a re-assessment of my fibrosis levels by fibroscan or other blood markers, just so that you can follow your post-treatment improvements. If your hep doc cuts you loose after SVR12, you can always avail yourself on your GP for requisitons for VL/bloods and a fibroscan at the EOT+24 week mark, perhaps another U/S as well, if there were any abnomalities at all noted from your first U/S, just to see if things look to be resolving there too. It would be good to have this kind of feedback at the EOT+24weeks mark, to know your liver is resolving it's prior 12.4 kPa. I would still ask your hep doc for a repeat fibroscan to be done, at EOT+24 weeks, even if he does not think a VL is required then.
Here's one kPa scoring range scale (many other scoring charts do NOT consider cirrhosis to be occuring until you are in the 14 or more kPa range):
Interesting, your doc's stat on 10-15% of his GT2's being 2a/2c's! Thanks for inquiring. You are unique, but not rare eh!?
No doubt! your doc is pleased with your good response to epclusa, a mighty early "crash" of your VL, within 2 weeks, you gotter made bro. I am glad your visit with him made you feel good and reassured about all your good news! Epclusa IS a VERY effective drug, Gilead created a wonderful NS5A (VEL), I'm so glad you got it and I am sure your doc is glad he could give it to you. C.
BTW - you mentioned (prior) that (luckily) now being on medi-care that this opened the door for you to get treatment (whereas before, treatment was unattainable/unaffordable) - did that mean your cost was only "reduced", that you still had to pay something for epclusa?
lamassu said
Apr 5, 2018
Hi Canuck,
Thanks for your kind words! Saw my specialist today. He says my pre-treatment kPa was 12.4, also that 10-15% of his patients are genotype 2a/2c. In the minority yes but not that rare. He said I was a fast responder to Epclusa, not that uncommon with the new DAAs and thinks my chances of zero viral load at 12 weeks are closer to 99% than 95%. Nice to hear good news: I'll take that:) He also said with Epclusa there is no need for an SVR24 test anymore. If viral load is zero at EOT and SVR12 is also zero you are considered cured now. Hep C DAA treatment is changing fast with new drugs and prices are coming down. Many patients don't realize that Gilead licenses many countries outside the USA to manufacture generic Epclusa. I have been told e.g. in India you can get three months of Epclusa for about $1000.
-- Edited by lamassu on Thursday 5th of April 2018 06:45:39 PM
-- Edited by lamassu on Thursday 5th of April 2018 06:50:27 PM
Canuck said
Apr 5, 2018
Sounds all good. I hear ya about the period of heavy fatigue. But so glad things have improved since then! That's what we like to hear - good pills, good food and water! Yay today - "week 4" under your belt already! Congrats. Wishing you a good visit with your doc tomorrow. C.
lamassu said
Apr 4, 2018
Hi Canuck,
Heavy fatigue first four days of Epclusa then lifted fast started feeling better each week that passes. No fatigue, stamina improving, no side effects of note like headaches. Finished first month today see doc tomorrow will ask about kPa and genotype. Taking Epclusa with meal drinking plenty of water. Thanks for the tips.
Canuck said
Apr 4, 2018
Hi lamassu,
Hey, nice sig line BTW! Interesting and good your pre-treatment ALT/AST was nice and low - one very good thing!
How's it all goin'?
You had mentioned that for the about 6 months prior to tretament that you had been having fatigue get in the way, and that you sense some relief on that front already since starting the epclusa - how nice, I wish I had experienced some of that while on treatment, I was not lucky to sense that for quite a while until after treatment, it's quite a rewarding bonus. I had to be pleased with just my stellar virological response to the magic vel and other drugs Gilead so kindly created for me, and with watching my labs improve miraculously! I am still reveling in my improvements! I thank my lucky stars, everyday, for wining a seat in my trial and for Gilead and my doc for curing me.
Hey, did your doc ever elaborate to you on your unique GT2a/2c status? Just curious if he defined or explained anything on this interesting subject to you.
Hope you are continuing to feel OK, and are drinking that LOTS of water! Are you taking your epclusa with a meal or without? Later, C.
-- Edited by Canuck on Wednesday 4th of April 2018 05:38:32 PM
Can I ask that you use the ”Reply” to posts instead of using the “Quote” option each time? Using the quote for general responses makes the length of the thread twice as long and harder to refer back to previous posts. It makes it easier for readers to follow. Quotes work well when adding small sections of a comment. There is also a quick reply at the bottom of each thread that makes replying quick and easy. Thanks for understanding!
If you need additional help with the signature function, there’s a link in my signature.
Canuck said
Mar 31, 2018
Very good you and your doc are thorough. That your Hep A and B immunity was up to snuff before your epclusa start.
When you have time, you could use a signature line (for ease of reference). Could I suggest something like this? ...
Male, Age, Dx 1990, GT 2a/2c. Pre-treatment VL 11,000,000, ALT ___, AST ___, Fibroscan F3, U/S. Rx 12 weeks Epclusa, SOT Mar ___ EOT Jun ___, 2018. Week 2 VL 50, ALT 12, AST 21.
Or whatever you are wanting to post, or are comfortable with posting as a sig. line.
C.
lamassu said
Mar 30, 2018
Canuck wrote:
Hi lamassu,
You have it right, to always inquire, then you with your doc can doc make the best decisions.
There are subtleties in the effects with drug to drug interactions, and even things as simple as an "antacid" or "food" that you can eat, that can have an effect on drug absorbtion.
The bottom line for epclusa, is that a patient may take epclusa with food or without, but, if you read through the epclusa monograph carefully you will see how thoroughly drug to drug and other interactions have been studied.
See: (Regarding even a simple antacid) - "Table 7".
See: (Regarding food) - "Action and Clinical Pharmacology" - aprox. page 29 - "Effects of Food". Note that there IS an effect of food (moderate/high fat/versus no food) on the "extent" of absorbtion, and/or the "delay" of absorbtion, but that the bottom line is that there is NO "SIGNIFICANT" reason to advise a pt. to take epclusa with or without food.
My regime was different than yours, I had a NS3/4A added (VOX) - the "Vosevi" monograph dictates I should take my med with a meal.
Just thought I would bring to your attention all of these other things, being that we were exploring "interactions".
Here's that link I spoke of previousy, regarding differing GT's and their "clades": About Genotype/Subtype - Lists - Geographical Locations , there is also a story around here about some of Gileads early trials where they were wishing to recruit only certain limited GT's for an epclusa trial, one fellow got started in the trial, along with all the rest, identified as the appropriate GT - only by happenstance with further admission genetic following was it discovered that his prior GT was REALLY, in fact, uncovered, to reveal he was truly a GT6! No GT 6's were supposed to be recruited for inclusion in this particular trial. He was (luckily) included and of course cured. Bonus for Gilead was that they now had to include this cured GT6 fellow, which only helped to boast (earlier than planned) how panogenic their epclusa was! There can and have been other odd cases of "mistaken identity" when it comes to genotyping! So, it's a good rule, determine GT, then pick the best treatment.
BTW - did your doc thoroughly check your hep A/B immunity levels prior to your epclusa start?
Sorry, to hear about your arthritic discomforts. Hope you and your doc get that covered well enough. C.
Yes he is very thorough. I had been vaccinated against both hep B and A years ago and immunity levels were fine.
Canuck said
Mar 30, 2018
Hi lamassu,
You have it right, to always inquire, then you with your doc can doc make the best decisions.
There are subtleties in the effects with drug to drug interactions, and even things as simple as an "antacid" or "food" that you can eat, that can have an effect on drug absorbtion.
The bottom line for epclusa, is that a patient may take epclusa with food or without, but, if you read through the epclusa monograph carefully you will see how thoroughly drug to drug and other interactions have been studied.
See: (Regarding even a simple antacid) - "Table 7".
See: (Regarding food) - "Action and Clinical Pharmacology" - aprox. page 29 - "Effects of Food". Note that there IS an effect of food (moderate/high fat/versus no food) on the "extent" of absorbtion, and/or the "delay" of absorbtion, but that the bottom line is that there is NO "SIGNIFICANT" reason to advise a pt. to take epclusa with or without food.
My regime was different than yours, I had a NS3/4A added (VOX) - the "Vosevi" monograph dictates I should take my med with a meal.
Just thought I would bring to your attention all of these other things, being that we were exploring "interactions".
Here's that link I spoke of previousy, regarding differing GT's and their "clades": About Genotype/Subtype - Lists - Geographical Locations , there is also a story around here about some of Gileads early trials where they were wishing to recruit only certain limited GT's for an epclusa trial, one fellow got started in the trial, along with all the rest, identified as the appropriate GT - only by happenstance with further admission genetic following was it discovered that his prior GT was REALLY, in fact, uncovered, to reveal he was truly a GT6! No GT 6's were supposed to be recruited for inclusion in this particular trial. He was (luckily) included and of course cured. Bonus for Gilead was that they now had to include this cured GT6 fellow, which only helped to boast (earlier than planned) how panogenic their epclusa was! There can and have been other odd cases of "mistaken identity" when it comes to genotyping! So, it's a good rule, determine GT, then pick the best treatment.
BTW - did your doc thoroughly check your hep A/B immunity levels prior to your epclusa start?
Sorry, to hear about your arthritic discomforts. Hope you and your doc get that covered well enough. C.
lamassu said
Mar 30, 2018
Tig wrote:
I would give Kratom a pass while youre on treatment. You can go 12 weeks without it. Youre right to discuss it with your doctor, there are no experts here, especially when the question is as serious as this. There could be a serious drug interaction between the three medications, Kratom, Sofosbuvir and Velpatasvir. You dont want to interfere with the absorption or excretion pathways. Too much or too little of either could have some severe results. The rule is to avoid any and all supplements and use only approved medications with these DAAs. Thats just a knowledgeable opinion. Hope it helps.
P-gpinducersand/ormoderatetopotentCYPinducers(e.g., rifampin, St. Johns wort, carbamazepine): May decrease concentrations of sofosbuvir and/or velpatasvir. Use of EPCLUSA with P-gp inducers and/or moderate to potent CYP inducers is not recommended
Well reasoned advice Tig thank you kindly. In my experience you can put up with almost anything for three months. Those who had to endure the earlier treatment options for Hep C might take issue with that though. When I talk to my specialist next week I will see what he thinks is best to moderate my chronic pain from arthritis but would not interfere with Epclusa.
Tig said
Mar 30, 2018
I would give Kratom a pass while you’re on treatment. You can go 12 weeks without it. You’re right to discuss it with your doctor, there are no experts here, especially when the question is as serious as this. There could be a serious drug interaction between the three medications, Kratom, Sofosbuvir and Velpatasvir. You don’t want to interfere with the absorption or excretion pathways. Too much or too little of either could have some severe results. The rule is to avoid any and all supplements and use only approved medications with these DAA’s. That’s just a knowledgeable opinion. Hope it helps.
“P-gpinducersand/ormoderatetopotentCYPinducers(e.g., rifampin, St. John’s wort, carbamazepine): May decrease concentrations of sofosbuvir and/or velpatasvir. Use of EPCLUSA with P-gp inducers and/or moderate to potent CYP inducers is not recommended”
lamassu said
Mar 30, 2018
Canuck wrote:
Hey, neat lamassu, to hear back from you already.
Thanks for all the info.
Ya, I caught on that the F3 WAS by fibroscan (just like you had written the first time - had I not overlooked it at first!) but good to know that you have not had a fibrotest in addition?
Maybe, aside from the kPa number from the fibroscan, you could also inquire whether they additionally did a fibrotest that was not mentioned as yet.
Good about the U/S, but it is not just cancers (or HCC) they look for, just a simple U/S can provide them a wealth of info about your spleen, gallbladder, pancreas, kidneys, liver (sizes/shapes/conditions) even indications of fatty livers etc., so very good you had one. If you are curious, you could ask for a copy of the radiologists interpretive report (his impressions) regarding your U/S, and see the written description of what the radiologist notes/sees.
I agree with folks who have posted to you here, about water drinking and about how stellar your (now) liver function test (LFT) numbers are!! Really good news that they are within normal limits. Do you have a "pre-treatment" ALT/AST to compare back to?
Sorry about this, but am I ever tickled about knowing the nuance of your GT2! I have heard of/read about people possessing more than one "sub-type" but as far as I know we (until now) have not known a multiple on this site! Very exciting for some of us who are nerdy interested! There are some fairly rarely occurring things (and amazingly interesting things, to me!) one can read about many of the various GT's - some GT's that "can change", other GT's that mimick other GT's, differing GT's that are "co-related" to other GT's , and others who possess two sub-types such as in your case. Very interesting to me. (We were discussing this in a prior thread once, I'll see if I find that again and later link it to you here). As a GT2a/2c you are unique, but it will NOT be any kind of an obstacle whatsoever as far as your treatment, so no need to fret on that account.
So, with you going back to the doc next week for an appointment, I am thinking he might be doing a 4 week VL on you (maybe) in addition to your 2 week VL already done. Look forward to as many as he will do for you through treatment, the feedback is always reassurring. You should also get a VL near or at end of treatment (EOT) - week 12.
Other than HCV, do you have any other health issues for which you are having any ongoing treatment/being followed for?
Glad you have met a few of us here now, we are glad to keep company with you! C.
Hi Canuck,
The only other concern is osteoarthritis pain. OTC meds don't help much I do have an rx for tramadol when I have a bad day but for some reason tramadol does not work well for me. Hydrodocone does and I can get a script but I do not want to become dependent on pain killers.
This may sound off the wall but at the urging of a good friend I tried Kratom for arthritis pain and got surprisingly good results. I stopped kratom before Epclusa based on this information but will talk to my specialist about kratom use with Epclusa next week. I certainly can not risk any med that would interfere with the Epclusa clearing the virus.
Any experts here on this forum with an opinion on Kratom alkaloids interacting with Epclusa? Thanks.
Canuck said
Mar 30, 2018
Hey, neat lamassu, to hear back from you already.
Thanks for all the info.
Ya, I caught on that the F3 WAS by fibroscan (just like you had written the first time - had I not overlooked it at first!) but good to know that you have not had a fibrotest in addition?
Maybe, aside from the kPa number from the fibroscan, you could also inquire whether they additionally did a fibrotest that was not mentioned as yet.
Good about the U/S, but it is not just cancers (or HCC) they look for, just a simple U/S can provide them a wealth of info about your spleen, gallbladder, pancreas, kidneys, liver (sizes/shapes/conditions) even indications of fatty livers etc., so very good you had one. If you are curious, you could ask for a copy of the radiologists interpretive report (his impressions) regarding your U/S, and see the written description of what the radiologist notes/sees.
I agree with folks who have posted to you here, about water drinking and about how stellar your (now) liver function test (LFT) numbers are!! Really good news that they are within normal limits. Do you have a "pre-treatment" ALT/AST to compare back to?
Sorry about this, but am I ever tickled about knowing the nuance of your GT2! I have heard of/read about people possessing more than one "sub-type" but as far as I know we (until now) have not known a multiple on this site! Very exciting for some of us who are nerdy interested! There are some fairly rarely occurring things (and amazingly interesting things, to me!) one can read about many of the various GT's - some GT's that "can change", other GT's that mimick other GT's, differing GT's that are "co-related" to other GT's , and others who possess two sub-types such as in your case. Very interesting to me. (We were discussing this in a prior thread once, I'll see if I find that again and later link it to you here). As a GT2a/2c you are unique, but it will NOT be any kind of an obstacle whatsoever as far as your treatment, so no need to fret on that account.
So, with you going back to the doc next week for an appointment, I am thinking he might be doing a 4 week VL on you (maybe) in addition to your 2 week VL already done. Look forward to as many as he will do for you through treatment, the feedback is always reassurring. You should also get a VL near or at end of treatment (EOT) - week 12.
Other than HCV, do you have any other health issues for which you are having any ongoing treatment/being followed for?
Glad you have met a few of us here now, we are glad to keep company with you! C.
Observer said
Mar 30, 2018
Welcome from me too.
Im super excited for you to be feeling better already...and those numbers are amazing. Yay
A
Tig said
Mar 30, 2018
Welcome John,
Glad you’re here! You’re on one of the best treatment drugs known to man or beast, beast being the keyword here! We often refer to this disease as the Beast or the Dragon. Whatever you call it, you’re on an excellent Dragon tamer and destroyer! Your viral load reduction and perfect enzymes should show you that.
Even though you’re not cirrhotic (F4) you’re still packing around some advanced fibrosis as an F3. You got started in time to avoid some additional concerns, good for you. Successful treatment will allow you to regain your health in time, so concentrate on finishing and doing everything you can to speed the process. It takes time, but all things are possible.
Your recent tests are very encouraging. I have a good feeling that you’re going to see that undetected viral load by the end of treatment, if you aren’t already!
Best bit of advice? Drink a gallon of water, everyday. It’s your best friend!
lamassu said
Mar 30, 2018
Canuck wrote:
Hi lamassu,
Welcome here, glad you joined in.
Very glad you finally succeeded in getting a treatment, and a very good treatment at that too I must say.
Sorry about your reasons for delay along the way since the '90's. I know what you mean, about the lack of confidence in the meds available until Harvoni-times. And sorry about the difficulties in accessing/affording the new DAA's, but thank goodness about getting on Medicare and how that opened the door for you. A long wait, but you'll be OK now!
Epclusa is your new best friend, and you have friends here too, just fire away if you have any questions or want to discuss anything.
I was lucky enough to get epclusa as well, but mine was via a trial and I also had another (third) drug added (vox) - I was on "vosevi". I would have never got it had I not been successful in pursuing my trial seat.
You and i are lucky to have recieved Gilead drugs (me as a GT3a and you as a GT2), very good your doc got it for you. I know how you felt with your first viral load (VL) returning at a puny 50! Same for me, felt miraculous.
Do you happen to know what your ALT/AST/billirubin or AFP lab results are? Did you have an abd. ultrasound (U/S) done? Was your F3 determined by blood test or by fibroscan? So your first VL was done at 2 weeks, so then how many more blood tests/VL's will you have done during your 12 weeks of treatment?
As a non-cirrhotic and a GT2 you will do well on epclusa. Very nice you are feeling some better already! Truly miraculous eh?
Drink LOTS of water!!! And were not kidding about that.
Feel free to post any questions or comments you feel like. C.
PS (aha!, I should read twice /write once - just noticed you DID say your F3 WAS by fibroscan, do you happen to know what the fibroscan kPa number was as well?)
-- Edited by Canuck on Friday 30th of March 2018 12:33:45 AM
-- Edited by Canuck on Friday 30th of March 2018 12:43:10 AM
Hi Canuck,
Thanks for your encouraging words.
F3 determined by fibroscan not fibrotest. Don't have the kPa at present but can get from my specialist when I see him next week and will know more about additional blood tests/VL at that time.
ALT is 12 U/L AST is 21 U/L Bilirubin is 0.3 mg/dL AFP tumour marker was 1.5 ng/mL
So all tests WNR. I am 2a2c by the way. I did have an abdominal ultrsound and my liver specialist says negative for cancer.
Canuck said
Mar 30, 2018
Hi lamassu,
Welcome here, glad you joined in.
Very glad you finally succeeded in getting a treatment, and a very good treatment at that too I must say.
Sorry about your reasons for delay along the way since the '90's. I know what you mean, about the lack of confidence in the meds available until Harvoni-times. And sorry about the difficulties in accessing/affording the new DAA's, but thank goodness about getting on Medicare and how that opened the door for you. A long wait, but you'll be OK now!
Epclusa is your new best friend, and you have friends here too, just fire away if you have any questions or want to discuss anything.
I was lucky enough to get epclusa as well, but mine was via a trial and I also had another (third) drug added (vox) - I was on "vosevi". I would have never got it had I not been successful in pursuing my trial seat.
You and i are lucky to have recieved Gilead drugs (me as a GT3a and you as a GT2), very good your doc got it for you. I know how you felt with your first viral load (VL) returning at a puny 50! Same for me, felt miraculous.
Do you happen to know what your ALT/AST/billirubin or AFP lab results are? Did you have an abd. ultrasound (U/S) done? Was your F3 determined by blood test or by fibroscan? So your first VL was done at 2 weeks, so then how many more blood tests/VL's will you have done during your 12 weeks of treatment?
As a non-cirrhotic and a GT2 you will do well on epclusa. Very nice you are feeling some better already! Truly miraculous eh?
Drink LOTS of water!!! And were not kidding about that.
Feel free to post any questions or comments you feel like. C.
PS (aha!, I should read twice /write once - just noticed you DID say your F3 WAS by fibroscan, do you happen to know what the fibroscan kPa number was as well?)
-- Edited by Canuck on Friday 30th of March 2018 12:33:45 AM
-- Edited by Canuck on Friday 30th of March 2018 12:43:10 AM
lamassu said
Mar 29, 2018
Hi,
Glad to be a part of the community. I have been living with Genotype 2 HCV at least since 1990 when testing was developed. I have been very fortunate that until the past year the progress of the disease was slow for me. Because I was not confident in success of treatment regimens until Harvoni was introduced I delayed treatment. I did not want a failed treatment that could lead to resistance. I don't use alcohol or smoke which may have been a factor in the slow disease progression.
The last six months however the disease started interfering with my life due to fatigue. I was also unable to afford Harvoni but could not qualify for help. Once I got on Medicare my specialist got me approved for Epclusa immediately. I was informed waiting was no longer an option. Medicare made Epclusa affordable.
In two weeks of taking Epclusa my viral load dropped from 11,000,000 to 50/ml which I consider a miracle. Still have to finish the three month course and wait for SVR 12 of course. I don't have cirrhosis according to my specialist Fibroscan was F3.
In only three weeks of treatment I feel remarkably better; I never thought Epclusa would work this fast. Getting stronger each week. Fingers crossed I am optimistic I may see zero viral load at the end of my three month course of Epclusa.
Hi Canuck,
I started having osteoarthritis about 4 years ago slowly getting worse. Hips, knees, mainly but also shoulders and elbows. Can barely move in AM on arising. I am having to take 50 mg tramadol daily now. Not happy about that as tramadol is addictive. 50 mg once daily is a minimal dose though. Next visit to my primary will discuss options. I have some hydrocodone left from dental surgery which takes pain away better but would consider daily opioids as a last resort. Once you start very difficult to stop. I am curious to see what if any effect zero VL and improving liver function will have on the arthritis.
Tig is right the way he expresses the "officious-ness" of SVR12, making the "large, round person" sing (hee hee, as he so carefully and tactfully put it!), and of the zeal we all want to experience with getting a profound crash and UND at 4 weeks! So true, that still, even with the new DAA's the "early UNDS/crashes" do not always happen (for everyone) even though we are commonly seeing this happen with great regularity nowadays - I was like you, with a (very telling) crashing VL "early", BUT, mind you, technically, I will still detected half-way through treatment. And some of our others, some of our Mavers, right here and now, were also being detected after the magical 4 weeks - everyone wants to experience that (early UND-envy I call it), it means both nothing (and everything as well) cause really, in the end, it's the "early" downward crashes (like yours and mine) that are are simply testifying that the drugs ARE working for you, and will work for you, extremely successfully - that's worth a big un-official celebration, in my book. Officious-dom parties has been historically been reserved for SVR12, and, we used to be able to double-hardy-party with a nice repeat SVR24, but that too is being revised ... party-poopers! As history and the drugs ever improve, perhaps with immunization and eradication one day, maybe soon we will not be allowed to party at ALL! I will still celebrate every single downward facing VL until then. Your doc is no doubt pleased and confident with your vigorous EARLY HUGE VL crash at 2 weeks, so am I!
You were (probably) already UND at 4 weeks! I just love epclusa!
Ya, me too, I have to drive 4-5 hrs one way to get a fibroscan!! With bad weather it has taken longer! The big city centre there (where my hep guy is, so ALL my hep treks are there) have quite a few places that have fibroscans down there at - but up here, even over in the next "fairly big" city centre (only a one-way 2 hour drive) STILL they have not bought a fibroscan machine to offer to folks, even at their otherwise fairly up-to-date hospital! I CAN get a CAT scan or an U/S (at that city that is only 2 hours away) tho. But what's with that! - I agree, you would think that for such a relatively low-cost bit of equipment to acquire, with such good simple diagnostic info to offer, and so many liver pts. out there in need, that fibroscans would be more commonly found, easily!
Neat you researched and knew where the fibrocans lived! - I did that too, one of the first things I worked on when I first got diagnosed, so as to help ensure that a needle biopsy might not be required. Made sure my doc (the one I ultimately ended up with) had all the best things for me (running good drugs trials, AND had his own fibroscan machine too)! Mind you, his machine is an earlier model, no CAP capability - thus no handy "steatosis" info via that machine , which would have been of interest to me (in the beginning) as I showed a degree of fatty liver via U/S pre-treatment, but we all assume (now) that that has resolved as far as I know. I tried hard to position myself in the ideal location to gain what I needed, even when it turned out it was a long trek away. We usually stay overnight on these aways.
ah, so you are making do with the tramadol, you have options with the other "scripted" analgesic you mentioned you could get, should need be. Maybe, with ridding yourself of the HCV, someday you might see some improvements that way, perhaps some lessening in some of your discomforts associated with your osetoarthirits?, ya never know! Sumpin else to hope for. Wherabouts are your arthritic pains and how long have you been dealing with that? Hope it is not too severe.
Sheesh, I am exasperated with Medi-care and "guidelines", and I don't even live there! Despite all, you sound like you are in very good hands with your doc and epclusa, even though you are forced to pay bigtime for it.
uh-oh, it's late! Later,
C.
-- Edited by Canuck on Saturday 7th of April 2018 05:53:28 PM
-- Edited by Canuck on Sunday 8th of April 2018 04:47:22 AM
Hey John,
That blood work schedule is fairly standard and correct as written. I agree with your doc, SVR 12, even SVR 4 has proven to be accurate of a sustained viral response, as in dead Dragon. The old SOC's were more prone to relapse during treatment and nearly always by EOT +4, if it was going to happen. These new DAA's work differently and I've seen more success with them than ever before. I do have a friend that completed 12 weeks of Harvoni, and didn't achieve her undetected status until EOT +12. She tested "Detected but <15" from about week 8, if memory serves me. She was convinced that she would relapse, but her EOT +12 viral load came back undetected and she has remained that way for two years now. So I always tell people, it's the +12 week viral load that counts. Of course it's always nice to see that result come back undetected as soon as possible and usually does before the end of treatment, but it doesn't always work out that way. The large, round person doesn't sing until EOT +12!
Good luck! We've got some proven advice when you're ready to rock n roll... I look forward to your progress!
Hi Canuck,
I have tests next scheduled the day after I take my last Epclusa pill: CMP 14, CBC and Hep C RNA Quant RT-PCR. Followed by EOT+12 week VL. For my piece of mind even if I am zero at EOT and EOT+12 weeks I will push for a VL at EOT+24 weeks if Medicare will cover it. Also another FibroScan at EOT+6 months. These are expensive tests and Medicare has guidelines on how often tests can be repeated. There are only 20 FibroScan units in my state. I have to drive two hours to reach the closest hospital with one. I'm surprised all major hospitals don't have one yet. For arthritis I take tramadol as needed.
Hi L.,
Oh dear! I was sorta hoping I wouldn't hear you say what I was suspecting (about "costs"), but alas, it is very true. How tough and horrid that system IS down there, when there is this big out of pocket aspect. And that there is no in-country choice about it, that for you the "improved" choice ended up being ... having to spend out of pocket about $5000.00, already! Nasty, but ... worth the cure mind you. I cannot say our system up here is all that people think it's cracked up to be either, I could go on about the nuances and realities of health care in Canada, but it's too long and convoluted to do justice to that topic in a post. Suffice to say, not necessarily access to "treatment" alone, but more so drug "choice" that has been and still is too slow to come and people have and can experience "limitations" on the public "system" for various reasons, especially when you get down to the "fine-print" sometimes. A couple of Canadian folk we know, right around here, not so very long ago either, had to get their own (superior choice) drugs out of country due to this very problem. Sad, that cost/access (of sorts) are problems that can still be found "in the way".
Your doc sounds good, I agree wholeheartedly with all your doc has done and expressed. I fancy and venture to say I feel the "early" crashings we witness (that you have also noted about being on these new/good/potent DAA's) only heralds/spells the success of a person's outcome! We seem to see this early crashing with quite a few of the newer DAA's (but i think especially so with VEL) - I could well be "over"-optimistically generalizing too much, but I'm mostly just counting the early crashed VEL heads on this site as an example. I believe the early crashings (the potency of these new DAA's) carries a lot of weight - I am not so much relying on or dwelling on "stats about relapse/late relapse" these days anymore (especially in your case, period), and certainly not beyond SVR 12, in this era of these powerfully effective drugs!
My interest is only in having you know that your fibroisis will reassuringly be followed and for you to be able to obtain your Fscore regression feedback (that I personally found soooo rewarding), I would be ecstatic if your next fibroscan occured at one year post-treatment, as long as it does get continued following. That was my only impetus in pushing for SVR 24 following - we'll all be just as happy to help celebrate your 1 year SVR especially knowing your (by then likely) reduced Fscore and evidence of other improvements! You may just end up pleasantly surprised how much resolution/regression you gain!
I was lucky to get in a further trial (after my drug trial), where i am followed at no cost by the drug company (well... relatively no cost to me, in theory!) - dif story if one has to pay out of pocket for everything, or rely on standard bureaucratic bean-counter systems to try to get max. following. The drug trial companies seem to be more motivated to spend the money on you to follow you. I am a big believer in good following. I get many checks (every 6 months for the next some years) to follow my health and fibrosis levels. Fibroscans/and many bloods included/I've also had one CAT scan and one U/S so far as well. I was not thought to have a higher Fscore than F4/12.6 kPs's pre-treatment.
So, aside from your 2 week VL/bloods, you did not have today, and will not have any further VL/bloods done until the EOT one?
Did he express an opinion to you about what best to take for pain?
It must be such a relief for these docs, to be able to give to us, and see us getting these good drugs these days! C.
Canuck,
I am self employed and in a state where Obamacare is unreasonably expensive; also cost of DAAs was out of reach even with Obamacare.
With Medicare first month supply was $3600. Second month was $1250. Have to wait to see what the final month costs.
My gastroenterologist told me another Fibroscan before a year has passed would not be useful. Also there is no guarantee my fibrosis will improve but I can hope. I do not have cirrhosis probably based on Fibroscan (would need a punch biopsy to be 100% sure I think) and fortunately did not wait too long before starting treatment.
This doc is sharp and up to date so I am trusting his judgment. Plan is EOT VL and then an EOT+12 week VL. I can always ask my primary for another viral load at EOT+24 weeks but my liver doc says consensus now is SVR12 is accurate. Even back in a 2014 study 99.7% of patients who reached SVR12 also reached SVR24. If relapse occurs it was most likely within 4 weeks. I am just very grateful to finally be fatigue free and my stamina is increasing with every week that passes. Thanks for your sage advice.
Hi lamassu,
Oh that's great, you reported back right away! Sounds like a good visit with your doc!
So, did you have (or will you be getting) a 4 week blood draw done for VL and LFT's (aside from the 2 week one you had done)?
I assume from what you say, you two do have planned another EOT VL and then a EOT+12 week VL. (Yes, some docs are not doing SVR24 week VL's, when you have had early UND's at 4 weeks and at EOT and have a SVR12).
Still, at F3, kPa 12.4, that is still significant fibrosis (which WILL in all likelihood regress and resolve/improve - which has probably already started to improve by just being on treatment!) which (as part of your health following) I (personally) would have another "health" check-up done at the EOT+24 week mark, (and if it were me) I would still throw in another VL along with standard LFT's (just because) AND have a re-assessment of my fibrosis levels by fibroscan or other blood markers, just so that you can follow your post-treatment improvements. If your hep doc cuts you loose after SVR12, you can always avail yourself on your GP for requisitons for VL/bloods and a fibroscan at the EOT+24 week mark, perhaps another U/S as well, if there were any abnomalities at all noted from your first U/S, just to see if things look to be resolving there too. It would be good to have this kind of feedback at the EOT+24weeks mark, to know your liver is resolving it's prior 12.4 kPa. I would still ask your hep doc for a repeat fibroscan to be done, at EOT+24 weeks, even if he does not think a VL is required then.
Here's one kPa scoring range scale (many other scoring charts do NOT consider cirrhosis to be occuring until you are in the 14 or more kPa range):
https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcSFWbc6KXXW5JQRtv-iopGpwe5SJTorGZPeOaLTjqBj2Q-3VKyW1g
Interesting, your doc's stat on 10-15% of his GT2's being 2a/2c's! Thanks for inquiring. You are unique, but not rare eh!?
No doubt! your doc is pleased with your good response to epclusa, a mighty early "crash" of your VL, within 2 weeks, you gotter made bro. I am glad your visit with him made you feel good and reassured about all your good news! Epclusa IS a VERY effective drug, Gilead created a wonderful NS5A (VEL), I'm so glad you got it and I am sure your doc is glad he could give it to you.
C.
BTW - you mentioned (prior) that (luckily) now being on medi-care that this opened the door for you to get treatment (whereas before, treatment was unattainable/unaffordable) - did that mean your cost was only "reduced", that you still had to pay something for epclusa?
Hi Canuck,
Thanks for your kind words! Saw my specialist today. He says my pre-treatment kPa was 12.4, also that 10-15% of his patients are genotype 2a/2c. In the minority yes but not that rare. He said I was a fast responder to Epclusa, not that uncommon with the new DAAs and thinks my chances of zero viral load at 12 weeks are closer to 99% than 95%. Nice to hear good news: I'll take that:) He also said with Epclusa there is no need for an SVR24 test anymore. If viral load is zero at EOT and SVR12 is also zero you are considered cured now. Hep C DAA treatment is changing fast with new drugs and prices are coming down. Many patients don't realize that Gilead licenses many countries outside the USA to manufacture generic Epclusa. I have been told e.g. in India you can get three months of Epclusa for about $1000.
-- Edited by lamassu on Thursday 5th of April 2018 06:45:39 PM
-- Edited by lamassu on Thursday 5th of April 2018 06:50:27 PM
Sounds all good. I hear ya about the period of heavy fatigue. But so glad things have improved since then! That's what we like to hear - good pills, good food and water!
Yay today - "week 4" under your belt already! Congrats. Wishing you a good visit with your doc tomorrow. C.
Hi Canuck,
Heavy fatigue first four days of Epclusa then lifted fast started feeling better each week that passes. No fatigue, stamina improving, no side effects of note like headaches. Finished first month today see doc tomorrow will ask about kPa and genotype. Taking Epclusa with meal drinking plenty of water. Thanks for the tips.
Hi lamassu,
Hey, nice sig line BTW!
Interesting and good your pre-treatment ALT/AST was nice and low - one very good thing!
How's it all goin'?
You had mentioned that for the about 6 months prior to tretament that you had been having fatigue get in the way, and that you sense some relief on that front already since starting the epclusa - how nice, I wish I had experienced some of that while on treatment, I was not lucky to sense that for quite a while until after treatment, it's quite a rewarding bonus. I had to be pleased with just my stellar virological response to the magic vel and other drugs Gilead so kindly created for me, and with watching my labs improve miraculously! I am still reveling in my improvements! I thank my lucky stars, everyday, for wining a seat in my trial and for Gilead and my doc for curing me.
Hey, did your doc ever elaborate to you on your unique GT2a/2c status? Just curious if he defined or explained anything on this interesting subject to you.
Hope you are continuing to feel OK, and are drinking that LOTS of water! Are you taking your epclusa with a meal or without? Later,
C.
-- Edited by Canuck on Wednesday 4th of April 2018 05:38:32 PM
I received this recall today.
Kratom Recall; Salmonella
Can I ask that you use the ”Reply” to posts instead of using the “Quote” option each time? Using the quote for general responses makes the length of the thread twice as long and harder to refer back to previous posts. It makes it easier for readers to follow. Quotes work well when adding small sections of a comment. There is also a quick reply at the bottom of each thread that makes replying quick and easy. Thanks for understanding!
If you need additional help with the signature function, there’s a link in my signature.
Very good you and your doc are thorough. That your Hep A and B immunity was up to snuff before your epclusa start.
When you have time, you could use a signature line (for ease of reference). Could I suggest something like this? ...
Male, Age, Dx 1990, GT 2a/2c. Pre-treatment VL 11,000,000, ALT ___, AST ___, Fibroscan F3, U/S. Rx 12 weeks Epclusa, SOT Mar ___ EOT Jun ___, 2018. Week 2 VL 50, ALT 12, AST 21.
Or whatever you are wanting to post, or are comfortable with posting as a sig. line.
Yes he is very thorough. I had been vaccinated against both hep B and A years ago and immunity levels were fine.
Hi lamassu,
You have it right, to always inquire, then you with your doc can doc make the best decisions.
There are subtleties in the effects with drug to drug interactions, and even things as simple as an "antacid" or "food" that you can eat, that can have an effect on drug absorbtion.
The bottom line for epclusa, is that a patient may take epclusa with food or without, but, if you read through the epclusa monograph carefully you will see how thoroughly drug to drug and other interactions have been studied.
http://www.gilead.ca/application/files/3415/0695/6820/Epclusa_English_PM_e186388_GS-002.pdf
See: (Regarding even a simple antacid) - "Table 7".
See: (Regarding food) - "Action and Clinical Pharmacology" - aprox. page 29 - "Effects of Food". Note that there IS an effect of food (moderate/high fat/versus no food) on the "extent" of absorbtion, and/or the "delay" of absorbtion, but that the bottom line is that there is NO "SIGNIFICANT" reason to advise a pt. to take epclusa with or without food.
My regime was different than yours, I had a NS3/4A added (VOX) - the "Vosevi" monograph dictates I should take my med with a meal.
Just thought I would bring to your attention all of these other things, being that we were exploring "interactions".
Here's that link I spoke of previousy, regarding differing GT's and their "clades": About Genotype/Subtype - Lists - Geographical Locations , there is also a story around here about some of Gileads early trials where they were wishing to recruit only certain limited GT's for an epclusa trial, one fellow got started in the trial, along with all the rest, identified as the appropriate GT - only by happenstance with further admission genetic following was it discovered that his prior GT was REALLY, in fact, uncovered, to reveal he was truly a GT6! No GT 6's were supposed to be recruited for inclusion in this particular trial. He was (luckily) included and of course cured. Bonus for Gilead was that they now had to include this cured GT6 fellow, which only helped to boast (earlier than planned) how panogenic their epclusa was! There can and have been other odd cases of "mistaken identity" when it comes to genotyping! So, it's a good rule, determine GT, then pick the best treatment.
BTW - did your doc thoroughly check your hep A/B immunity levels prior to your epclusa start?
Sorry, to hear about your arthritic discomforts. Hope you and your doc get that covered well enough.
C.
Well reasoned advice Tig thank you kindly. In my experience you can put up with almost anything for three months. Those who had to endure the earlier treatment options for Hep C might take issue with that though. When I talk to my specialist next week I will see what he thinks is best to moderate my chronic pain from arthritis but would not interfere with Epclusa.
I would give Kratom a pass while you’re on treatment. You can go 12 weeks without it. You’re right to discuss it with your doctor, there are no experts here, especially when the question is as serious as this. There could be a serious drug interaction between the three medications, Kratom, Sofosbuvir and Velpatasvir. You don’t want to interfere with the absorption or excretion pathways. Too much or too little of either could have some severe results. The rule is to avoid any and all supplements and use only approved medications with these DAA’s. That’s just a knowledgeable opinion. Hope it helps.
“P-gpinducersand/ormoderatetopotentCYPinducers(e.g., rifampin, St. John’s wort, carbamazepine): May decrease concentrations of sofosbuvir and/or velpatasvir. Use of EPCLUSA with P-gp inducers and/or moderate to potent CYP inducers is not recommended”
Hi Canuck,
The only other concern is osteoarthritis pain. OTC meds don't help much I do have an rx for tramadol when I have a bad day but for some reason tramadol does not work well for me. Hydrodocone does and I can get a script but I do not want to become dependent on pain killers.
This may sound off the wall but at the urging of a good friend I tried Kratom for arthritis pain and got surprisingly good results. I stopped kratom before Epclusa based on this information but will talk to my specialist about kratom use with Epclusa next week. I certainly can not risk any med that would interfere with the Epclusa clearing the virus.
Any experts here on this forum with an opinion on Kratom alkaloids interacting with Epclusa? Thanks.
Hey, neat lamassu, to hear back from you already.
Thanks for all the info.
Ya, I caught on that the F3 WAS by fibroscan (just like you had written the first time - had I not overlooked it at first!) but good to know that you have not had a fibrotest in addition?
Maybe, aside from the kPa number from the fibroscan, you could also inquire whether they additionally did a fibrotest that was not mentioned as yet.
Good about the U/S, but it is not just cancers (or HCC) they look for, just a simple U/S can provide them a wealth of info about your spleen, gallbladder, pancreas, kidneys, liver (sizes/shapes/conditions) even indications of fatty livers etc., so very good you had one. If you are curious, you could ask for a copy of the radiologists interpretive report (his impressions) regarding your U/S, and see the written description of what the radiologist notes/sees.
I agree with folks who have posted to you here, about water drinking and about how stellar your (now) liver function test (LFT) numbers are!! Really good news that they are within normal limits. Do you have a "pre-treatment" ALT/AST to compare back to?
Sorry about this, but am I ever tickled about knowing the nuance of your GT2! I have heard of/read about people possessing more than one "sub-type" but as far as I know we (until now) have not known a multiple on this site! Very exciting for some of us who are nerdy interested! There are some fairly rarely occurring things (and amazingly interesting things, to me!) one can read about many of the various GT's - some GT's that "can change", other GT's that mimick other GT's, differing GT's that are "co-related" to other GT's , and others who possess two sub-types such as in your case. Very interesting to me. (We were discussing this in a prior thread once, I'll see if I find that again and later link it to you here). As a GT2a/2c you are unique, but it will NOT be any kind of an obstacle whatsoever as far as your treatment, so no need to fret on that account.
So, with you going back to the doc next week for an appointment, I am thinking he might be doing a 4 week VL on you (maybe) in addition to your 2 week VL already done. Look forward to as many as he will do for you through treatment, the feedback is always reassurring. You should also get a VL near or at end of treatment (EOT) - week 12.
Other than HCV, do you have any other health issues for which you are having any ongoing treatment/being followed for?
Glad you have met a few of us here now, we are glad to keep company with you!
C.
Welcome from me too.
Im super excited for you to be feeling better already...and those numbers are amazing. Yay
A
Welcome John,
Glad you’re here! You’re on one of the best treatment drugs known to man or beast, beast being the keyword here! We often refer to this disease as the Beast or the Dragon. Whatever you call it, you’re on an excellent Dragon tamer and destroyer! Your viral load reduction and perfect enzymes should show you that.
Even though you’re not cirrhotic (F4) you’re still packing around some advanced fibrosis as an F3. You got started in time to avoid some additional concerns, good for you. Successful treatment will allow you to regain your health in time, so concentrate on finishing and doing everything you can to speed the process. It takes time, but all things are possible.
Your recent tests are very encouraging. I have a good feeling that you’re going to see that undetected viral load by the end of treatment, if you aren’t already!
Best bit of advice? Drink a gallon of water, everyday. It’s your best friend!
Hi Canuck,
Thanks for your encouraging words.
F3 determined by fibroscan not fibrotest. Don't have the kPa at present but can get from my specialist when I see him next week and will know more about additional blood tests/VL at that time.
ALT is 12 U/L
AST is 21 U/L
Bilirubin is 0.3 mg/dL
AFP tumour marker was 1.5 ng/mL
So all tests WNR. I am 2a2c by the way. I did have an abdominal ultrsound and my liver specialist says negative for cancer.
Hi lamassu,
Welcome here, glad you joined in.
Very glad you finally succeeded in getting a treatment, and a very good treatment at that too I must say.
Sorry about your reasons for delay along the way since the '90's. I know what you mean, about the lack of confidence in the meds available until Harvoni-times. And sorry about the difficulties in accessing/affording the new DAA's, but thank goodness about getting on Medicare and how that opened the door for you. A long wait, but you'll be OK now!
Epclusa is your new best friend, and you have friends here too, just fire away if you have any questions or want to discuss anything.
I was lucky enough to get epclusa as well, but mine was via a trial and I also had another (third) drug added (vox) - I was on "vosevi". I would have never got it had I not been successful in pursuing my trial seat.
You and i are lucky to have recieved Gilead drugs (me as a GT3a and you as a GT2), very good your doc got it for you. I know how you felt with your first viral load (VL) returning at a puny 50! Same for me, felt miraculous.
Do you happen to know what your ALT/AST/billirubin or AFP lab results are? Did you have an abd. ultrasound (U/S) done? Was your F3 determined by blood test or by fibroscan? So your first VL was done at 2 weeks, so then how many more blood tests/VL's will you have done during your 12 weeks of treatment?
As a non-cirrhotic and a GT2 you will do well on epclusa. Very nice you are feeling some better already! Truly miraculous eh?
Drink LOTS of water!!! And were not kidding about that.
Feel free to post any questions or comments you feel like.
C.
PS (aha!, I should read twice /write once - just noticed you DID say your F3 WAS by fibroscan, do you happen to know what the fibroscan kPa number was as well?)
-- Edited by Canuck on Friday 30th of March 2018 12:33:45 AM
-- Edited by Canuck on Friday 30th of March 2018 12:43:10 AM
Hi,
Glad to be a part of the community. I have been living with Genotype 2 HCV at least since 1990 when testing was developed. I have been very fortunate that until the past year the progress of the disease was slow for me. Because I was not confident in success of treatment regimens until Harvoni was introduced I delayed treatment. I did not want a failed treatment that could lead to resistance. I don't use alcohol or smoke which may have been a factor in the slow disease progression.
The last six months however the disease started interfering with my life due to fatigue. I was also unable to afford Harvoni but could not qualify for help. Once I got on Medicare my specialist got me approved for Epclusa immediately. I was informed waiting was no longer an option. Medicare made Epclusa affordable.
In two weeks of taking Epclusa my viral load dropped from 11,000,000 to 50/ml which I consider a miracle. Still have to finish the three month course and wait for SVR 12 of course. I don't have cirrhosis according to my specialist Fibroscan was F3.
In only three weeks of treatment I feel remarkably better; I never thought Epclusa would work this fast. Getting stronger each week. Fingers crossed I am optimistic I may see zero viral load at the end of my three month course of Epclusa.