Hep C Discussion Forum

Canuck · Guru

RE: Hello from a new member

Tig · Admin

Hi Gail,

This thread was started by Lamassu some time ago. You can see the original (first) post on page 3 using the menu at the bottom.

tanner · Senior Member

Hey all, I'm on this new thread Hello from a new member. I scrolled down to try to find the new member and couldn't find him or her.

tanner · Senior Member

Whoo-hoo, lamassu! Congrats! It is great to be part of the undetected club.

Iris Dragonfly · Guru

Hey congratulations lamassu! We really got to advocate for ourselves, my liver doc wanted to be done with me after treatment, I said heck no! I want follow ups, so we'll see. Glad you are seeing improvements, it is reassuring for sure.

Bb, Iris

5-1-18 · Guru

awesome news lamassu , and good hope for all

lamassu · Senior Member

Sorry I never started my own treatment thread just wanted to report that yes you can see liver repair after clearing the virus. I had a yearly post treatment FibroScan (same machine even) and I went from F3 to F2. My liver doc was impressed it seems not that many of his patients insist on follow up FibroScans. Nice to get some good news!

lamassu · Senior Member

Thanks Iris! To be clear my liver doc gives the "all clear" at SVR12 with the latest DAAs and then, depending on your starting F score and how long you had the HCV decides appropriate follow up care. He usually keeps monitoring liver enzymes and if a change is noticed will certainly get a new HCV RNA quantitative viral load. I refused to believe I was cured until I saw that SVR24 so he wrote me the lab order but told me I would be undetected.

Iris Dragonfly · Guru

Congratulations!!!, I didn't realize you had to wait until 24 to get the all clear. Best to you from here and beyond.

lamassu · Senior Member

Thanks 5! It is so great to be a member of the 'undetected club' now.

5-1-18 · Guru

congrats lamassu

Observer · Guru

Yay lamassu

congratulations on SVR 24 smile

Cheddy · Moderator

Thanks for that. I'm not worried and will be having my yearly physical soon. That usually includes a blood panel. My ALT and AST have been good.

Keep up the good work.

lamassu · Senior Member

Cheddy,

Thanks for your kind words. This forum is a great resource and I try to help out where I can. My gastroenterologist says with the latest pangenotypic DAAs like Mavyret and Epclusa SVR12 is highly indicative of a lasting cure and does not even bother with an EOT + 24 week viral load anymore (unless someone like me pesters him about it:) He told me if relapse occurs it happens in the first 6 weeks after EOT. I would ask your doc if you are at all concerned (and I don't think you should be) for a lab order to just get another viral load. See this link for the latest opinion I could find on a literature search, here is a quote from the article:

According to the current American Association for the Study of Liver Diseases (AASLD) guidelines, once SVR12 or 24 is achieved (ie, HCV RNA below the lower level of quantification 12 or 24 weeks after therapy), no verification is needed at later time points unless the patients liver test results become abnormal. There are some data suggesting that 1 or 2 in 1000 patients do not maintain SVR for more than a year (ie, late relapse), but this is such an unusual event that it does not need to be tested for unless liver test results become abnormal.

You can also consult the full 2018 AASLD guidelines. Hope this helps!

-- Edited by lamassu on Friday 30th of November 2018 07:55:03 PM

Cheddy · Moderator

Yes! Very good news. I bet that feels reassuring, to say the least.

I've never had a follow up since SVR12 over two years ago. Should I?

Also, lamassu, I want to thank you for the good and sensible advice you add to our group. You are very clear in your advice.

All the best in your ongoing HepC Free living.

lamassu · Senior Member

Thank you Hoodietree, I am confident you will follow along as well and find in January you reach SVR12. Best wishes for the holiday season!

Hoodietree · Senior Member

Congrats lamassu!! Very happy to hear the news. SVR24 is a wonderful status!

lamassu · Senior Member

Hi Canuck,

Thanks! Eight years ago I did not want to take a chance on the treatments available which were very tough on you and might cause me to become resistant to future treatment. A lot has happened in the field in eight years. Paying $6000 for Epclusa was the best money I ever spent.

I see my gastroenterologist in two months and will get orders for follow up tests then. I do know he plans to follow me closely because I was F3. Last time we spoke he told me he would order another Fibroscan one year after I finished Epclusa. I think it is standard of care for F3 patients to have twice yearly ultrasounds and I already had that combined colonoscopy/endoscopy that showed no esophageal varices. And yes I would love to see a lower F score come summer!

-- Edited by lamassu on Thursday 29th of November 2018 09:25:52 PM

Canuck · Guru

Hey Lam,

I saw you posted, somewhere, (on somebody else's thread I guess) in passing, you had mentioned you had your SVR24! I did not remember congratulating you on this milestone, mind you I forget LOTS of important things lately it seems!

So ... if I have not already done so (elsewhere), here is a great big hoooooooooooooo-raaah from me on your smokin' SVR24!

Thank goodness for Gileads stuff, even if yours WAS on the expensive side.

Now, when do you go for your fibroscan and (perhaps a repeat U/S?), are you and your doc going to wait to repeat those until you are at 1 year post?

When you had your SVR24 bloods done (in Nov I guess) I see you posted that last ALT/AST in your sig line, but just wondering if your doc routinely repeats the AFP for you?

I am lucky I don't even have to ask for repeat fibroscans/U/S's or to include AFP's in my labs, as they do all those (and more) automatically every 6 months for the Gilead continuing follow-up study I am in.

I hope for you, the same as what happened for me, that after the Gilead cure, there was a fast and dramatic reversal of my Fscore.

I am very happy you are SVR24 now. biggrin C.

Tig · Admin

Your doc is right. After achieving SVR 12, the rate of relapse is <.5%. That’s less than 1/2 of 1%! We believe that drops to almost nothing as time goes by. SVR is the real deal. A four letter word called the “cure”...

SeeTheLight · Senior Member

Fantastic news Lamassu. I am so very pleased for you. Also that you are now feeling so much better. What an amazing outcome.

Observer · Guru

YAY

lamassu · Senior Member

Hoodie,

So sorry to hear you are having issues with fatigue and having to deal with work at the same time. You will get past it and become free from fatigue. In my treatment with Epclusa the fatigue went away seemingly overnight at week ten, hopefully it will happen sooner for you. Best wishes!

Hoodietree · Senior Member

Super happy for you lamassu!!

BTW, thanks for sharing about the fatigue you experienced. Im feeling it big time and its beyond rough while working 8-9 hours a day and commuting. Glad there is light at the end of the tunnel and very glad you are getting your energy back.

-- Edited by Hoodietree on Tuesday 28th of August 2018 12:22:19 AM

Iris Dragonfly · Guru

Err on the side of caution is a good thing.
Congratulations on receiving the SVR news.

Lets keep it up! Nice to hear you are feeling better, I like hearing those sorts of stories.
BB, Iris

lamassu · Senior Member

Thanks all been waiting 28 years for a cure. My hepatologist tells me that for my genotype after reaching SVR 12 with Epclusa the chance of not achieving SVR 24 is less than one percent. For my peace of mind I will still get the 24 week viral load of course.

-- Edited by lamassu on Tuesday 28th of August 2018 12:22:47 AM

5-1-18 · Guru

woohoo lamassu !!! biggrin biggrin biggrin

Tig · Admin

Congratulations, John! SVR12 - WOOHOO!!

Canuck · Guru

Yay lamassu! Sittin' pretty on the sands of Club 0! It IS very worth it! You been through a fair bit. Finally (officially) one less thing now! Free. Oh how I appreciate Gilead.

Yup, me too, the fatigue thing, BUT i had it real bad before I started my Vosevi, so what kin ya say - everybody is dif. My fatigue did not improve while on treatment, but i like to blame the vox. Who knows. Sure does feel great when you finally realize you are starting to feel different/better though - doesn't it. smile

I really like the sounds of you. What with being able to get out and about more. Moving a body should do one good alright. Very rewarding when you feel the stamina returning, mine was quite a work in progress, but sooo welcome.

I can't wait to hear results of your next fibroscan - bet ya anything your Fscore is already reducing!

So nice you are feeling better! You got velparized, but good. Rest, recover, onward, upward. biggrin C.

Related image

lamassu · Senior Member

Thanks Hoodie. I should remark that I felt worse while taking Epclusa than before starting: I was one of the about 25% who get severe fatigue on Epclusa. Some weeks were better than others but I would not have been able to hold down a job. The fatigue lifted around week ten of treatment. It was worth the discomfort of course, now I feel better than I have in many years. Yes I did drink the full gallon of water a day thanks to sage advice from members here.

Hoodietree · Senior Member

Congrats lamassu!!!

lamassu · Senior Member

Just got latest lab results and viral load not detected at EOT plus twelve weeks. No fatigue at all, I am exercising daily and my stamina is improving as the weeks go by.

Canuck · Guru

Hey lamassu,

I must say, since your "little bit early" good news EOT UND, I am sure you must be feeling a whole lot more confident about your upcoming SVR12 UND and your health going into the future, we will all wait with you to see if other things which have been plaguing you give up and give you a break, now that you have evicted that horrid complicating health-robbing virus out of your body for good. I hope some of these other things turn around for you too, perhaps just like some of the "fatigue" side relented a bit toward EOT. Be hopeful that other bodily things may find improvements, all by themselves, such as that lipid thing you mentioned prior, or perhaps your weight thing or your joint things. How has your body been feeling since being off epclusa, are you having just as much joint discomfort as you were on-treatment, and as you were pre-treatment?? Are you going to see that rhuemy/ortho guy soon - I forget now when you said that rheumy guy was due, or when that other doc spoke about starting you on statins. Maybe they might be of the wait and see how things are for you for a little bit yet ... do you think you will needing to be back on the kratom again, soon? Or, what are you thinking about that.

I like this, that you have been sussing, thinking, learning about all things HCV - it's good to think out loud and share with others what info we pick up along the way. Helps ourselves, and the next guy or gal coming along, to delve into things.

I was on an "away" for a bit, but noticed you dutifully posting to others on various topics, being helpful and informative, from querying "why not" epclusa for everyone, versus harvoni ... to more recent onces where you share what your hep doc told you - good stuff to digest. Mostly, from your own good efforts you are finding more and more good answers to your questions. Nice you share out loud.

As we can see from STL and JB's experience (and many others here as well) their docs hold less importance in documenting the VL, but concentrate and rely on seeing/attaining/maintaining that good early week 4 ALT/AST crash response. You might look at it this way, where the ALT goes the VL will follow. The load is of less importance nowadays with the likes of these new DAA's, save for Harvoni, where i believe it is STILL in the books that over 6 million the Harvoni course cannot be shortened. Docs are having/holding trust in the good track-records of these new powerful drugs. The drugs, and applications have evolved and are evolving, always expect some change along the way, and, in each doc individual choice and interpretation of same!

I am NOT of the mind that less testing is better, yes, perhaps cost-saving, and (true) perhaps over-kill, but I would always opt for more testing, not less. Ongoing feedback is always a good thing.

Some folk, sometimes, have near normal LFT's but are just as very much infected as you or i were, even if their load shows up low. A 10 million load is just as infected as a 200,000 load - requires treatment - and VL is only a pinprick point in time - loads vary over time (sometimes greatly, up and down) as LFT's can, but for the folk who more consistently over time own very low/normal-like LFT's, um, how do you know when they crash!! That's also another way to look at it - their 4 week ALT "crashing" to 15 from say 20?, isn't too telling is it?, but had their VL also been done at 4 weeks and it plumeted from 200,000 to UND, would that not be more telling? I'm all for testing and lots of it - if I was a bean-counter, I would hate me.

Just me ruminating. smile C.

5-1-18 · Guru

good news lamassu

lamassu · Senior Member

Hi Canuck,

I agree with you on how confusing the lab result formats can be and suspected I was below limits of detection but hearing confirmation from you made my day. Still need to see the doc and get that important EOT + 12 week viral load but will sleep better tonight. This forum is a Godsend. Many thanks!

Canuck · Guru

I sure wish these labs would all get together and simplified lab reporting results/language and (universally) how the results are written on the lab report page, to ensure there can be no misunderstandings and so that it would be an EASY-to-relate-to system for the patients - over and over again many of us folk have been subjected to doubt, hesitation and consternation when we cannot easily decipher these lab reports at a glance, when the time would be better spend kicking up our heels for joy at good news!

Your results (as written) does not say "undetected", it says "not detected", to me it would mean the same thing!!!!!!!!! Here is what the "officio-dom" says ... VIRAL LOAD - CONVERSION TO "LOG"

Various labs might write "undetected" others use the words "not detected" - had your report said ONLY ... <15 iu/ml then you could assume they did not consider you to be "undetected" nor "not detected", but in your case if it said the words "not detected - then this is the news you have been waiting for.

Here is how one lab lays it out - http://labguide.fairview.org/showTest.asp?testid=2799 ...

Interpretive

Reference Range:

Not detected. This assay as a result range of 15 to 100,000,000 IU/mL (1.18 log to 8.0 log IU/mL) for quantification of HCV RNA in plasma or serum. A 'Not Detected' result indicates that the assay was unable to detect HCV RNA within the specimen. A '<15 IU/mL (<1.18 log IU/mL)' result indicates that HCV RNA is detected but the level present is less than the lower quantification limit of the assay. A '>100,000,000 IU/mL (>8.0 log IU/mL)' result indicates that HCV RNA is detected, but the level present is above the upper quantification limit of the assay.

Regardless, get the confirmation from your doc - he will leave you doubtless, even at these last weeks you are showing you have beat it! - you will have NO need for Vosevi!!!!

They never say zero or "0" BTW, as the lowest level of testing their equipment allows them to go down to is 12 or 15 iu/ml, thus why we see this confusing "less than" < business! It is beyond their ability to count below their equipments lowest level of detection (12 or 15iu/ml), after that, you are either simply "detected" or are "undetected or not detected".

In my book? ... you are a great big ZERO lamasu! heehee - and I mean that in only the very nicest way! Big congrats lamassu. biggrin C.

lamassu · Senior Member

Hi guys,

Could use some help in interpreting labs. At exactly the end of my tenth week of Epclusa my liver doc was concerned about the side effects I was having (just very heavy fatigue second month which had already gone away) and had my EOT labs moved up two weeks. Here was my viral load:

<15 NOT DETECTED (NOT DETECTED IU/mL)

<1.18 NOT DETECTED (NOT DETECTED Log IU/mL)

I was hoping for zero of course. I have not been able to speak with my liver doc yet. Is that lab result considered a cure or not yet? I still have 9 Epclusa to take. I suspect I may be in suspense until I have an EOT + 12 week HCV RNA PCR as some do relapse. The prospect of three months of Vosevi is not exactly appealing.

-- Edited by lamassu on Tuesday 22nd of May 2018 03:54:39 PM

-- Edited by lamassu on Tuesday 22nd of May 2018 04:03:49 PM

Canuck · Guru

Good on the water dept, keep striving for the full gal. - but oh dear though, I can't think of anything else in the fatigue defense arsenal other that going with flow, pacing yourself, eating/resting/moving well, and getting some fresh air, even when you have to forcibly "drag yourself" outside to get it. Trying to keep control of your boney/joint/body pain will help a bit, if you time your "hauling yourself outside for a bit" for right at the height of your pain meds. A big glass of fresh squeezed OJ, treat yourslef to an exotic cut-up fresh fruit salad, invite a freind to come and help you do something while you visit for a short bit, things like that "might" make you feel a "tiny" bit better. Have you enough energy to go for a massage or short hot tub, something that may (or may not) normally appeal to you, something not too long or strenuous but which might still give you some comfort. The self-TLC will be important to get through these periods. I still hope this fatigue will let up or at least wax and wane.

Ya, it has been written up in various countries in the recent past that Vosevi is mostly being reserved for treatment-experienced, as a "rescue"/salvage re-treatment, but as an extremely effective triple, it would be excellent for anyone, including treatment-naive, especially GT3's! Perhaps we will see Vosevi use change more this way, in future, we'll see.

Hang in there, try some things, just to see if anything makes the tiniest bit of dif to the better. C.

lamassu · Senior Member

Thanks for the link and encouraging words. I try to drink a full gallon (128 US ounces) per day; at least 100 ounces. In the US Vosevi now seems reserved to those few who relapse after treatment with Epclusa. Fortunately I am retired; I would not be able to maintain a job with the fatigue. The Medicare HMO I am on does not cover Vosevi yet by the way but Epclusa was not a problem. Anyone in the US living with Hep C and getting on Medicare needs to make sure the PPO or HMO they choose covers Epclusa and possibly Vosevi.

Tig · Admin

Hi John,

Sorry you’re so fatigued. Actually, the incidence of fatigue is as much as 25%+/- of patients on treatment. There are some things you can try to reduce them, but these are powerful drugs and they do have some noticeable effects on people. I think you’re doing a good job of keeping yourself in shape to avoid as many as possible, so do your best to stay motivated and don’t let the Dragon get you down! Consider this bit of discomfort as its death throes.

If you haven’t read the VA site related to Epclusa SFX, it’s a good one and offers some thoughts on dealing with these issues. You’re getting close to the finish line, stay strong and know we’re here to cheer you on!

Epclusa SFX

Canuck · Guru

Oh dear, that's too bad (the fatigue).

How much water ARE you drinking in a day? Do you measure?

I too had profound fatigue whilst on my 12 weeks of Vosevi (which contains the same "SOF/VEL" you are on with Epclusa) but additionally I had another NS3/4A drug with it called "VOX". I reviewed every post i could find to compare notes about what other people experienced while on Epclusa (or Vosevi) to try to gauge what I might expect, I also scoured every Epclusa and Vosevi trial and the drug mongraph info for guessings. Not too many people had been doing Vosevi when I recieved it, and the early feedback from the Epclusa folk seemed pretty good, mixed, some people felt NOTHING, others some stuff.

The monographs will indicate that the potential for GI sides "might" have been a little higher for those on Vosevi than Epclusa - more the NS3/4A "Vox" (I think).

My untreated HCV had got me to the point of experiencing very profound, time-consuming, debilitating fatigue, pre-treatment - (I was that way before I started my Vosevi). Man, some days there were not enough hours in a day to meet my sleep quotas, irresistable, hard to fight past, impromptu naps overtaking me periodically throughout the day - it was beyond nuts. Exhausted. The fatigue certainly did NOT improve whilst I was on treatment and the fatigue was slow to improve after treatment - I do chalk this up to mostly "me" - the health and liver state I was already in. The Vosevi drugs seemed to add another unpleasant dimension to the pre-existing levels of fatigue) - my "fog" was bad enough before! I did gain great psychological releief though, just getting accepted into my trail, and being so happy to get the (very good drugs) I needed, just that alone helped, just knowing I was finally there - being cured! Some of the immediate profoundness did lift in the days and weeks that followed EOT - so I did feel the drugs and the internal efforts my body were going through did seem to contribute to what I was feeling while on treatment. I do believe the extra NS3/4A "VOX" drug perhaps added it own element to this, but it is impossible to know. I also hold a theory that where you are at in your HCVbefore tretament has a bearing on how you might feel during tretament.

One cannot compare to anothers experience, just too many individual variables. Even if one had done the very same drugs twice! (wouldn't happen) but say it did, your first experience could very well be dif for you than the next!

I did not drink enough water when I was on treatment, even though I knew better, and had been told ad nauseum, I was finding myself some shy of what I should have been consuming (in retrospect - and THAT was of no help to me) - NOT drinking enough IS SO EASY to do! Was for me anyway. It's hard for a person to believe you need to consume that much water! Especially if you have never been a natural water drinker at heart, not enjoying drinking water (most of my life!). But I slowly learned while on treatment, I just really wished I had forced myself to drink more and better, all throughout, from the start, I learned to minimize my bad feelings with the increased water consumption, I could decrease or get rid of a headache almost entirely just by simply drinking more water, I felt sor of "toxic" when not drinking enough and better when I did. I slacked off at EOT, and found I still needed to drink a lot!, otherwise I did not feel very good. Important lessons for me - I am NOW a pretty good water drinker!! I can still cure a headache just by increasing my water intake.

The body always knows and wins, with fatigue, you have no choice but to rest, just do it, and drink more water (on principal and measure it). I did not drink enough until I actually had a system set up to truly gauge/measure and count the water volume I took in. Force yourself to be up and about, just enough to keep the body moving and fed, get a bit a fresh air. Water, feed, move and rest yourself with TLC, that is the best you can do. You have other pre-existing body discomfort issues as well, and that does not help improve the fatigue factor either, on a general level. Go with the flow, do what you can (these small measures - water, good food, moving, fresh air). You are right, you do not have much longer to go to EOT. If it is too much, do phone or go see your doc or any doc for their advice. Hang in there, know you are killin' it! C.

lamassu · Senior Member

Think I am suffering side effects from the Epclusa. First month my fatigue actually went down with Epclusa but starting mid second month have been suffering heavy fatigue. I have less than four weeks to EOT so am toughing it out but am spending a lot of time in bed resting. Still hydrating as advised. I seem to be one of the 15% who suffer fatigue on Epclusa.

Canuck · Guru

It's that old "is the glass half full or half empty thing"! Ha!, portions and measurements! (Only) 84 days, 84 pills, 12 weeks, then ... there is the rest of your life. It's sounds generous (that they pay for 91.8% of the drugs cost), but $6100.00 out of anyones pocket hurts!! I wish very much they would have paid 100%. You are forced to look at this as a VERY good and important investment in yourself. You now own "vel" shares. Dividends to follow. Your EOT VL will be a nice first payment, altho that 2 week VL payment was not too shabby, at all! - that just went to show you what a good stock you bought into. Rewards are coming.

So May 3, you are actually 2/3rds of the way home! There's nothing like the sound empty bottles make in the wake behind you - that last pill rattling around in the bottle there, and then ... blissful silence as you toss the empty container into the bin or mount it on your memory wall as a momento. Crack open bottle number 3 on May 3 with glee - keep getting one down your gullet every day WITH LOTS OF WATER (AS TIG REMINDS YOU!), and you will be home-free before you know it.

DO trying flooding yourself with more water (every day), for what you have been experiencing - how much water per day ARE you drinking?

Glad you got your xray imaging done, and rhuemy consult lined up for May. Depending on what rheumy says/thinks, and depending on if he suggests meds and what meds those might be - be sure to ask if perhaps starting "something" should be postponed until after you are finished Epclusa. Did you get a copy of the written radiologists report to read for yourself, the radiologists "impressions" of your hip/knee imaging?

You sent me off in q quest of reading, trying to find "something" on being a "GT2a/2c" specifically, but I have not been having too much luck (in the "narrow" 2a/c view), you can see bits of "this and that" I have read lately over in ... About Genotype/Subtype - Lists - Geographical Locations ... I would generally agree with your doc about seeing maybe 10-15% of his patients coming through his office being various types of GT2's - like plain ole GT2's with no sub-type identified, or a GT2 pt being a GT2a alone, or a GT pt being a GT2b alone (as examples), but as far as being a GT2 with two subtypes a and c, I would think this would be less common. (See!, I still think you are special-er than you think!) wink C.

This you will note below is only 2/3 full - please drink it and then fill it up again to overflowing, repeat.

Image result for glass of water 2/3 full

Tig · Admin

Half way, Brother! That’s a milestone we all cherish and celebration’s abound. I know what a special day it is to reach that point. That’s the day the treatment train reaches the crest and starts to coast toward the finish line, EOT Station.

Keep up a good hydration program and that will help the aches and pains. If your rheumatologist finds a reason for your discomfort, good. I encourage people to go after the relief that has evaded them for so many years. Hep C can cause so many issues and the medical community is finally coming around and realizing the complications it is responsible for. I’m doing my best to seek the healthcare solutions that will make me feel better. How many times have we all avoided the help we need to simply feel better? I hope you get some answers, John. I think you’re going to notice an improvement in many things, once you’re rid of this virus and have some time to recover and regenerate a healthy and happy liver. We’re all pulling for you!

I wish you continued luck and better health...

lamassu · Senior Member

Hi Canuck,

Thanks! Picked up my final bottle of Epclusa earlier this week cost $1250 so total cost of three months out of my pocket is $6100. Third month cost same as second month, first month was $3600. Medicare is getting charged $25,000 per bottle so they are paying 91.8% of the cost of treatment. Other than the arthritis I usually feel fine but have had some fatigue, headaches and insomnia lately though. Looking forward to EOT end of May and will have VL checked the day after I take the last pill. Still coping with the arthritis: had diagnostic x-rays of hips and knees taken at my primary and will be seeing a rheumatologist early in May.

-- Edited by lamassu on Saturday 28th of April 2018 07:47:05 PM

Canuck · Guru

Hey lamassu!

Big congrats on your right-shortly upcoming half-way home milestone!!

Image result for half-way

6 weeks of epclusa under your belt, 6 more to go, to freedom! Then, you never need look back at that nasty virus doing it's harm to you any further. Well, no looking back ... except in good following and health checks and celebrations for all your healthy days and years to follow!

I am so glad you got epclusa and that circumstance did not have to make you wait longer.

Good to get this done and finished now.

How does week 6 feel?

I see you got yersef a new toothbrush! The self-re-infection topic has come up A LOT over the years! But not much about the concept of self-re-infection while you are already on treatment for the very virus you fear you might re-innoculate yourself with! Hmm, just a thought ... if you have a strep throat and have to do antibiotics for it, if it was even possible that you could acquire a second identical bout of the organism to be introduced to you during treatment, would the antibiotic treatment not cover all bases? Ya, ya, I know, kind of a weak argument/comparison, but you git where i am going with this - just a way to point out that there are so many variables that come in to play for the circumstances to be right for such a rare/remote risk. I, like many others, ponder the remote, rare possibilities, the unlikely scenarios, worrying about "insurance" for all my hard investment. Like Tig mentioned some turf their old toothbrush with the first UND.

BTW - the lipid/statin thing? All depends on your docs assessments of you, of course, from risks, BMI's, labs, etc., lots of things for him to consider and take into account as to whether he thinks you should be on statins, but sounds reasonable to me to delay statins until after HCV treatment. I thought I would just offer up my lipid experience to you, I hardly had any lipid assessments done on me (maybe ... I don't know how many years ago, maybe many, perhaps a decade ago?, I can't just recall just right now off-hand, but a LONG time ago) ... so, I did have lipids drawn once in the past - they were veiwed with a deliberating eye by my doc, him mulling them and me over and my family hx of cardio-vascular things ... I got a ... "well, those are up some BUT in proportion to this, then, mm, the ratio is not too bad, we'll jes leave it alone" ... Many years pass, surprize!, they FINALLY stumble accidental-like over the HCV I had been packing for over 40++ years! I end up getting some more lipids done as a by-product of HCV work-ups, similar lip anomolies, not outrageous, just some-skewed. After cure they improved! My LDL (the so-thought "bad" one) is now really low! hm! Ya never know jes what can happen eh, was it the HCV contributing to some of my funny labs in the past (the few I ever had), I dunno. Am I just a better functioning person and package now?, now that I am HCV free, having improved liver function, with decreased or vanished steatotis?, that it is also reflected in this change in my lipid ratio? Good testing and following, when we are well or sick, is good thing. Comparatives over time have the potential to tell us quite a bit.

Are you coping OK with the joint discomfort? Hope so. Fill us in how life is going at week 6! smile C.

-- Edited by Canuck on Thursday 19th of April 2018 01:53:37 AM

lamassu · Senior Member

My cardiologist wants me on Crestor but he feels that should wait until EOT with Epclusa.

Canuck · Guru

Yep, always wise to suss things out as much as one is able to (when there is a question), and take the safest route based on gleaning best info available. It is a hard area to fathom (all the in's and out's of interactions) what are inducers and inhibitors, what can potentiate what, a science all in itself!, but interesting and important to have at least the basic's (monograph advice) adhered to - the monographs for these drugs are amazingly good in providing basic and more in-depth learning about these known or potential interactions, and how significant they might be.

Tig previously was quoting to you some of this same info, as will be shown in the epclusa mongraph (and thus in Gilead's further study references) similar to what you were posting here about the fellow who happened to be on dac. Sheesh you gotta be careful with even just simple everyday foods with some drugs!, what to eat or not eat with your epclusa (or dac ), like ... innocent little grapefruit being a no-no with dac (as far as I am concerned)! Amazing what things can affect drug absorption and how.

(When possible), I would always try to default to no "added" drugs to an already laboured liver to deal with, just on principal of how much work is required (of the body/kidneys/liver/gut) to sort the "extra" workload - never ideal to tax/make extra demands of a liver, or other organs, that are already perhaps disadvantaged and not working up to snuff. We try to avoid adding insult to injury, fuel to fire, and make work projects.

Riveting, about kratom - keep hearing about it, but not much. Should be interesting to see how it all pans out, scientifically, medicinally and politically. I cannot imagine it's journey will be easier (historically) than any other medicinal or chemical that comes into vogue such as pot, penicillin, cocaine, plastic or tobacco!

How's are your cholesterols? Any hints/imagings of fatty liver? Maybe (if we are lucky) aside from hoping for arthritic improvements if HCV in any way helps to contribute to joint discomfort/inflammation, then perhaps with resolution of the HCV, and a GI system freed to work unfettered, weight loss may be easier to attain/maintain too? - ya never know! smile C.

lamassu · Senior Member

Hi Canuck,

Osteoarthritis runs in my family, but not RA. I am working with my primary right now. OTC pain relievers are not effective at all. I am overweight and on a diet to bring weight down which my primary feels will impact my pain level from the arthritis. He feels tramadol is the least addictive analgesic and I respond well to it but once my 3 months of Epclusa is complete I may ask for a referral to a rheumatologist.

Before Epclusa along with multitudes of patients with arthritis I found a few grams of Kratom taken several times a day afforded very good pain relief better than tramadol. That is why Big Pharma in US is pushing DEA and FDA to either schedule Kratom (tried and failed due to massive push back from hundreds of thousands of users) or ban Kratom imports. Kratom is a direct threat to sales of hydrcodone, etc. However response to Kratom alkaloids varies among those who try it; some users get little pain relief.

There are no scientific studies showing that taking Kratom along with DAA is dangerous but Dr. James Freeman feels kratom use with DAA is not safe. I stopped Kratom a few weeks before starting Epclusa to be safe. There are many anecdotal reports online of patients continuing to use Kratom with DAA and still getting zero viral load though. It is a scientific grey area right now.

-- Edited by lamassu on Sunday 8th of April 2018 03:51:54 PM

Canuck · Guru

Assume you have already been presenting yourself to GP's, and maybe for a consult with osteo/rheumi and/or other boney-type specialists in the last 4 years for testings/assessments, firm diagnoses?, imagings?, advice?

What all did they come up with for you, as far as advice/assessments - where do they think you are at with your arthritic changes, and what have they had you try (aside from tramadol or the morphine you mentioned). Have you already been "trialed" by them on good long tests with various more-common very-soft OTC analgesia and anti-inflammatories first? They often first flog and graduate you through experimental courses of aspirin or tylenol and then on to more "potent" scripted anti-inflammatories - have you already been graduated through the standard OTC pharmacology, and then through "scripted" types of anti-infammatory courses with no respite? What have they had you try (other than the tramadol/morphine you mention now)?

Maybe you have just been taking care of yourself, and finding out what does or does not work for you?

Why do you think you became arthritic?, just because and luck of the draw?, or have you have a life-time of contributing factors such a sports/work injuries, wear and tear?

Do you employ other methods for relief such as hot tubbing, heat/icings/exercise-phisio type things, or other "body-work" modalities for pain relief? Are your joints, hot, red, swelling, creaking?? What kinda shape are you in, fitnness wise, are you still very mobile? Are you a health and diet nut, or the other way, or somewhere in between? What else have you been trying aside from the two drugs you mentioned, and the krantom you have stumbled across of late?

Has any doc suggested to you that your arthritic things "might" improve after HCV cure? Have you had testing done, just on a rule-out basis, by hep guy, or anyone, re: cryo-globulins, or tests to look for certain inflammatory reasons as to why your joints may be complaining?

My mind and memory is a-niggling - I am trying to recall who you are reminding me of, there are several I vaguely recall on this site who (I think) obtained some respite/relief from their arthritic-type and otherwise boney "body" pains after HCV cure. Maybe "jaggles" was one, you can search her looooooong threads up, to see how she felt before and during her epclusa treatment, she was suffering greatly before and during, for her it seemed morphine was the only drug du jour that helped - as far as I can recall, she was/is MUCH better after cure? - will have to ask her how she is doing of late, in the body-pain dept. Another fella with bad knees, delivering pizza ... didn't he get to feeling better Tig? I can't recall. I think pizza guy? and quite a few others here, have spoken about using cannabis derivatives/oils for various ailments, from joint problems to lymphomas!

I've never had any tramadol, don't know what it would be like for me, how effective it would be to disrupt/interrupt pain pathways, altho my partner has had it, and he found it "fairly" effective. For quite a number of years (prior to finally discovering my unknown state of packing HCV for so many decades), I found I just did not want to do ANY drugs, period, of any kind what-so-ever, more and more anything I ever took just had this extra mysterious effect of making me feel "worse" (in a way), sickish or hung-over like, or just something "extra" felt wrong when I took just about anything! To me the HCV revelation was some sort of explanation, I still refrain, but when I must take something, i do note (now) it is not quite so bad (the extra yuck feelings I would get before). Chaulk it up to poor ole liver I guess.

Here's tramadol info. I only read up on tramadol once before, when my partner was on it. https://online.epocrates.com/drugs/134601/tramadol/Adult-Dosing

I have certain ideas about the "fine-lines" that separate "use", "dependency" and "addiction". What IS "addiction" really, say ... compared to a unavoidable justified dependency on a drug. There is much room for thought on these subjects - "addiction" (just the word itself), conjures up very negative conotations, perhaps dependency some less so, use perhaps even less. The "re-training" of the brain in pain-mode via outside drugs/influences, this "alteration/message interference", science can coldly map what we experience as our drug blood levels rise and wane time and time again, it all depends on the ramifications experienced, on the drug, and without it, the ramificatons that can be very negative, or, can be very welcomed and positive as well - it all just depends on the drugs and circumstances doesn't it? - am I technically an addict if I could not possibly get through a day without the necessity of dosing myself up quite heavily with aspirin to get through the day? - mm, guess so! Jes rambling with some food for thought! smile C.

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