Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: Mavyret, trying to start treatment!!


Veteran Member

Status: Offline
Posts: 54
Date:
Mavyret, trying to start treatment!!
Permalink  
 


CanucK ~

Your understanding and compassion are deeply appreciated. You really get it. Thanks for thinking out loud! 

The fluctuations are dramatic and reflect exactly the FMS (fibromyalgia syndrome) description. I've been on active duty sleuthing all these conditions for a lifetime. At the time I was diagnosed with HCV, I also had CMV and EBV titers. Not surprising after so many blood transfusions. It's been uncanny the way the descriptions of hcv and fms are so similar. 

I really have a feeling that coveted SVR will relieve me of most if not all pain. Thank you!!

I haven't needed to see my endocrinologist for a couple of years. All labs were normal then. Harvoni actually helped some things. So strange as I relapsed.

Right. The head neuro thing is crazy. I take smallest dose of Clonazapam 1 hour before bedtime. It works like a miracle. My neuro wants me to take more of it, I probably should but I get so tired of lying down, even though the view is great.

Ahh yes C, well and long practiced arts. I'm so grateful for all the healing help I've had along the way, and this now, another chance at the cure. I want it bad-ly.!

Labs this Wed or Thurs. Practicing dis-engaging. Ho hum. Bigger fish to fry than some old lab tests! HA! It's a zen thing. 

Thank you for being there.

DL

 

 

 



-- Edited by Dandelion22 on Sunday 28th of January 2018 04:15:12 PM

__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

DL,

Ya, figured you been der done dat. But ... never hurts to think out loud from time to time, to see if we can rethink possibilities etc. even it does not end up changing anything - cuz ya jes never know. Your descript. of various types and fluctuations of "pain" make perfect sense.

I am VERY there in your comment "...I'm really a lot stronger than I sound..." , I can already TELL how strong a person you ARE, and you do sound strong! I would never doubt that for a second! So odd, and true ... what they say, about "what doesn't kill us" ... ! I can only imagine what living is like with having to try to avoid things, balance so many things in your life from foods, to pain, to conditions. I am really hoping the lack of HCV WILL ultimately show you demonstratable improvements, in various depts and conditions in the future, in delightfully surprising ways! 

How much thyroid function/dysfunction are you at?

Good other bloods are stable.

Huge understated "go away" (on my part) for this myclonic affliction - what scripted thing is it he gave you that you can take at night?

I hear ya about not wanting to rock the boat, having to keep vigil, as you have been expertly NOT capsizing for so long, just wish it was not so (less demanding). Exhaustion and pain got to be the worst, and these are the things I think just might improve for you in future after your Mav cure. Keep pulling. I like the sound of all the tactics you have been using to help yourself, practised arts.  

Sorry, I forget, tell me again, when did you say you get VL, LFT bloods done next (do you go this week)?, and when do you see doc next? C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

It could be my spleenlessness Angel. But because my digestion is so good I think it's fibromyalgia and hcv that's causing all the pain.
I did get a respite from most of the pain for a short while after Harvoni, so it could all be the hep. I don't know.

I just wish I didn't feel like I could fall down from exhaustion so much of the time as I'd definitely be on pain meds.... if I thought I could tolerate them that is.

Thanks for your caring.

Hugs back,
June



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Thanks once again for all your thoughts and ideas C. I wish I didn't have to tell you that I've thought of all of all your suggestions for the last 26yrs. As the pains, and there are dozens of different kinds of pain, come and go so much, it's hard to describe or pinpoint exacerbants or even relief..... If that makes sense.

I feel I need to be fully conscious of everything going on in my body all the time in order to stay on top of it, as well as take advantage of good spells. If the pain was localized, and predictable in any way, I'd be able to work with it better. But as it is, I never know when it's going to worsen. It's been hard to live with. Sometimes I can even get to the gym though. The unpredictability and moving targets of pain make it hard to treat. Epsom salt baths help. But lying down is usually what I do, as extreme fatigue usually goes with it.

I have had numerous fibromyalgia diagnoses that seem best to describe the pain. I've also had a Hashimoto's diagnosis for decades.  

I feel like a very bent but very well oiled machine. My labs and diagnostics have always been near pristine. It's crazy to have such great values and feel like I'm on deaths door so often. I'm really pretty sure it's hep c and fibromyalgia. How can you not fall 22' off an ocean cliff and not hurt like the devil decades later?

The pain is only in my muscles, joints, and soft tissue. I do not have pain viscerally thank God. In fact, because I've been fortunate enough to be under the care of a brilliant Dr., I have great digestion. My Dr's have all been good, and have tested for all the concerns you raise. Good ideas. They all come out clean, with nothing left to test. 

I don't do much housework, but am able to keep up with it all. Thank God it's almost a tiny house.

The only pain relief I found to work is Morphine, but as I'm already lying down most of the time, I'm reluctant to go there. Did I mention I have gazillion food and inhalent sensitivities? Besides lactose intolerance, I'm allergic to many foods, but wonderful to know what to avoid. I'd hate to upset that delicate internal balance, particularly as I'm treating now.

As an aside, my head injury resulted in "sleep onset myoclonis" in my brain. I have extreme shocks in my brain between sleep stages. Managing that during the day is rough. My neurologist prescribes something to take before bedtime, but it does make me sleepier so I don't take it during the day. I breathe. I do very long and deep breaths which manage it when I'm lying down during the day with my eyes closed. It's very scary and serious but I live with it like everything else.

My friends and neighbor list is short, but I do have a few wonderful people to call in emergencies. 

Oh Life!

Thanks for listening!

I'm really a lot stronger than I sound.  
June

 

 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

I am wondering if a lot of your problems could relate to the fact you do not have a spleen?!?  Hang in there Dandelion... I have no additional pain with the meds, I find them pretty easily tolerated... sorry you have to suffer!!

hugs,  connie



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

I am hoping (as you get further into your hep treatment) that this exacerbation in joint/body discomfort will lessen or at least even out to a level you feel is not an "increased" level, as compared to the "usual" level, but "the usual" is still not condusive to anything!

What (in the analgesic category) have you ever reacted to before, in the past?? We know you can tolerate these small amounts of aspirin you have been taking prophalactically, ask about increasing the asprin or about the addition of tylenol. I'm not necessarily talking narcotics, or even scripted anti-inflammatories, or scripted anything. Re-review what analgesics you might have reacted to in the past and re-assess if asprin or tylenol would even fall into a similar catagory of what you took in the past, weigh if aspirin or tylenol could cause you an untoward reaction now, other than some intended pain relief.

You and I both know having to deal with pain, our ability to deal with pain on a ongoing daily/minute to minute basis, has it's limits, and relief sometimes has to be orchestrated beyond what tactics you can normally employ and get by on. 

Inquire with your docs as to your INR/prothrombin time (clotting times), if you have ever had any RBC disparities, anemias or known kidney function problems, etc. - for ANY medical reason (prior bleeding/clotting disorders, gastric intolerance, etc.) why you could NOT take a couple full doses of asprin (from time to time) to knock the discomfort level down, when discomfort is shown to be consistantly remaining higher as it is doing now. (Or some other analgesic such as tylenol.)

Talk with ALL your docs about pain relief - your docs (with careful deliberation of ALL your conditions AND your blood values) may have no reason to think is unsafe for you to take some intermittent, or even ongoing, dosings of OTC analgesics for a while when your pain is not being quelled otherwise to a tolerable level. Suss it, then decide.

If you have tolerated asprin or tylenol in the past, consider it now, on your docs advice. Any decrease in the pain levels may make a fair bit of dif. for you.

I too am reluctant to take any kind of OTC or scripted analgesic, nothing is my prefered standby, it is a rare occurence for me to do pain pills, BUT ... when required, I DO and WILL. I have even taken prolonged courses of anti-infammatories/analgesics (scripted and/or OTC) meds for anti-inflammatory/pain treatment purposes, even if I did not feel entirely comfortable doing so, I knew it was something I needed to do/try.

You have every good reason to be afraid of what unknown events "pills" can bring to you, but on the other hand, we also know what the result of being in chronic intractable pain brings you at the status quo. Consider all, and then, with your docs, pick something safe and try it.

Energy - ya you and me both! Man I was soooo wasted prior to and on treatment, there were not enough hours in the day to sleep for me! 

If you can, get a shopper/helper/friend/family/driver/buddy ... anything to acheive having to do even one or two less demanding things. Screw the housework (I still haven't cleaned up around here since EOT!), just concentrate on YOU, ya cook and eat and sleep, and try to be more pain free. Only YOU and the HCV treatment are your priorties right now. See what you can come up with to break up this constant pain exacerbation you are experiencing right now. I am obviously leaning toward measures beyond your usual, ie some pill use. C.

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Thank you so much Canuck. Your compassion and understanding is appreciated. If I had the energy I'd be in tears from your kindness.  I was a single Mom back then and had to give compassion and kindness rather than receive. I'm just so grateful I survived.

I hear you on the pain relief. But frankly I'm pretty scared of going down that road again. I don't remember if I shared, but the last 3 RX's for pain my doctor gave me landed me in the ER, by ambulance. I think it's the combo of hcv, post head injury, and not having a spleen, that caused the reactions. I wish I could try something again, but I need any energy I can muster to shop for food, cook, and keep up my home. I'm afraid of getting really tired even if I don't have a reaction to it.

I'm in my 4th week on Mavyret, and that is almost a miracle to me. I would've bet I'd have problems like I did on Harvoni. I'm so grateful that I'm tolerating it. I've been sick since a flu vaccination at work (I was a social worker in a nursing home, and it was mandatory). That was in '92. I was literally bedridden 16mo from that. I've been crawling back from the abyss all my life it seems. I can't handle the thought of another reaction so will plug along as I am. If it gets really intolerable I'll ask for something I promise.

I am almost 1/4 the way thu now and practice mindfulness. I also am able to do stretching and breathing exercises that help. 

You're wonderful Canuck! Thank you for all your caring.

Dandy 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Oh my DL,

What a horrid event in 1980!!!! Poor you and skull/head, spleen and pelvis. Wow, out for 11 days! I've seen a gal recovering from a pelvis fracture (just a car accident) but that alone was really nasty enough to see her heal from - that was some serious tumble (and landing) you took! Quite an assortment of serious injuries sustained. Ya, I'd say you know ancient pain alright! - you had been set up for it since then, and the added 1992 diagnosis. Too bad (all of it) and the loss of spleen, they still do come in handy otherwise. Tough the crawl back from head injuries too - know a couple people who have had to do that work. I am always simply amazed how tough we can turn out to be, surviving blows like these, our "durability" and abilites to crawl back after being broken.

I am heartened to hear of your brief tantalizing pain decrease/respite noticed during Harvoni days, I too hope this is exactly what will occur for you in future after your Mav cure.

Now, I am still of the mind that you should NOT have to be guaging the good "powerful-ness" of Mav seeping into every nook and cell of you, by braving the increased body discomfort cold turkey - the joint/muscle pain sounds uncomfortable enough to justify seeking other means of relief. (More than just rest, hydration, more than just ability/sheer will to bear it, and any minute dif the baby aspirin doses can make, usual mag., etc.). I think you should ask/decide what additional occasional small dose(s) of something you can take to get more relief. Surely you have tried all kinds of things in the past (for pain control/relief) - how about splurging and get yourself some fully justifiable relief - perhaps even simple traditional fair, in the form of some run-of-the-mill analgesic piils. Please consider it.

So, bloods are due, but when do you get see the hep doc as well? If you are not "due" to see the hep doc, or your GP, then please do phone and ask what they they would recommend for you as far as analgesic (given your intake of Mav and baby aspirin) - if they have not already guided you on this issue of gaining some extra pain relief specifically.

Tig is quite right about the subtle and surprizing building improvements "creeping up on us" once we have ridded ourselves of this virus, mine surprised me too, still do, and the smallest ones can and do please me no end! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Thank you Tig! I'm in this for the long haul and know Mavyret is working. I'm patient. 

despite falling onto ocean rocks from a cliff, which is a sure recipe for arthritis and fibromyalgia, I think a good deal of the pain does come form the hep. When I cleared for a short while after the Harvoni, the pain was significantly less. I can't wait for that again.

Happy to hear you got a lot of improvement after clearing as well. Morphing minor improvements sounds great.

Thanks so much for your support and wisdom.

Hopalong Cassidy

aka DL

 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

We’ll be anxiously awaiting your lab results. I know you’ll be very pleased with the dramatic reductions across the board. Very often we see people undetected at week 4, but don’t be crushed if it’s not. It’s not uncommon to have a few stragglers that get picked up at week 4. If you aren’t undetected at week 4, ask for another viral load at weeks 6 or 8. That’s the typical course taken to confirm your response. I’m confident that you’re going to be successful. Hopefully a day will come when they can treat this with a single dose of some magic Dragon decimator. Until then these new DAA’s are the weapons of choice! 

I don’t know what it is, but regardless of treatment received, we all have expressed some type of muscle and joint pain. It seems to affect many with HCV and for whatever reason it exacerbates the inflammatory process. I suffered from it during and for a long time afterwards. My hips and shoulders were so painful. Crossing my legs in front of me was impossible! That’s how I sit and I was constantly yelling out in pain, because I’d forget and try. I’m the old dog that has trouble learning new tricks! Thankfully the arthritis has improved greatly and I hope you experience it as well. I venture to say you will. It all started with minor improvements that morphed slowly into big ones. I can deal with that. 

All in all, you sound upbeat and that pleases me greatly! Your commitment to treatment is clear and you have a caring team around you, which makes for good outcomes!



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Hi Canuck,

Great to be seen!

I will be starting 4th wk tomorrow.  Incredible muscle and joint pain still. Leg cramps pretty bad when I wake in morning too. I fell 22' off an ocean cliff in '80. I was uncon. 11 days, with fractured spleen, skull and pelvis. I was diag with fibromyalgia and hcv in '92. So I've had pain a long long time now, but yes Mavyret is making it worse.  

My feeling tho is that the Mavyret is getting into all the little cracks and crannies that Harvoni may have missed because I was on Curcumin at the time which is hepatoprotective. Thus, my liver on Harvoni was protected form the Harvoni with the Curcumin and didn't get full benefit of treatment. I really feel like that the exacerbated pain now is a sign of healing. I'm pretty used to it actually. I feel ancient.

In addition to my gastro Dr and primary Dr,  have been also under the care of an orthomolecular immunologist 25yrs. I believe he saved my life after I became bed-ridden from a mandatory vax in '92 at work.
He's like an allergist that can test for food sensitivities and also knows all about nutritional support.  He's not always perfect, as he had me on Curcumin during TX.... but he really did save my life with diet and supplement protocol all these long years.
He has tested me and prescribed 2 baby aspirin daily. One with brkfast and 1 with dinner. He is concerned about stroke as it is fairly common in my family, I've had major head trauma, I don't have a spleen, and am so symptomatic. I still deal with neuro brain issues form the accident...another story.

Yes indeed!! Lab slip arrived for next week. I'm ecstatic!! This is it I can tell. Mavyret is really working!!!!!!!  It's clear many breeze thru so many of the treatments which seem to slay me so I'm not surprised to be having some trouble with Mavyret. So so happy I'm bot suffering from the asthenia and huge brain fog I did on Harvoni. I don't think I could go thru that again. Seriously.

Thanks Canuck! Best to you!

DL



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

 

DL,

Great! We can see each other now! smile Tig knows how to fix everything!

So, you gotta be 3 weeks into your Mav now, how is it feeling/going this week?

You had been having some body discomfort, but, like you said, you have had that state for quite some time now, but noticed some more lately

I was asking if you and your doc had decided what you can take if required for pain, and you did mention the twice a day doses of baby aspirin ... but that really wouldn't be doing too much for discomfort, you said that those doses were more prophalactic, a kind of stroke "prevention" tactic.

I hate to see anyone with chronic discomfort, can you/or do you have something you can take for pain if and when required?

I was curious about the prophalactic aspirin ... do you have prior known risk factors for stroke? Any ongoing hi cholesterols, BP issues, arteries full of plaques, etc., something that puts you at high risk of stroke? Have they been treating you for, or watching you very carefully for stroke? I do recall you mentioned your BPs responded in not nice ways in past (to allergy type reactions and or while on prior DAA treatment) - but do you have an everyday kind of vascular problem, hi BP, etc., that is putting you at higher risk of stroke? Lots of people do just what you are doing with baby asprin (on the advice of their docs), after they have had a stroke or heart attack.

Last week you said you were glad the Mav was not slamming you - may-be MAV IS very good at being a slam-less DAA! It's so good to have you and others here on it now, to follow your blow by blows. But, even way back when, when we had a couple people here go through the earlier Mav trials, they too found the Mav did not affect them adversely, make them feel badly.

Won't be long now and you will be trundling off to get your first bloods! Just around the corner! biggrin C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Lights on now Canuck!! biggrin



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Ahh... there it is!! WooHoo!!! Nice job. Thank you Tig!! 

DL



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Can you? Now? Yet? Is it there? Who turned out the lights? heehee winkconfusesmile

Image result for can you see it pictures



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

Do you see it now? One of your profile settings had the signature turned off . We could see it, but you couldn’t. Hopefully we have solved that mystery!



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

That's beautiful Tig! Chrome browser here too. I can't figure out why I can't see it.  

Thanks so much for your help!!!

Dandy



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

Hey Dandy,

If you look at this photo attachment below, I have circled your signature information as I see it on my Chrome browser. It looks good on my side! What browser are you using? You only have room for 300 characters. If you go over, it won’t save. Let me know if you can see what I have circled in red in your browser window. We’ll get it!



Attachments
__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Hey Magic Canuck, I can't see my sig or anything at the bottom of my posts except this:

-- Edited by Dandelion22 on Wednesday 17th of January 2018 09:46:39 PM 

Sorry for the hassle. I don't know what I'm doing wrong.

Thank you for the work tho! It sounds pretty good!!

Blowin in the Wind

Dandy



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

You truly ARE magic! biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

Din do it...  but I will fix it wink



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

BTW Mr. like-magic fix-it - she's on 16 "weeks" of Mav, not Mav "was" - but hey, I'm not picky. wink

 

(insert pic of magic wand here) ... my pic won't stick!

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

It’s a fine signature, too! The sig disappears during replying because that action demands a different function from the forum software. I‘ve always wished it was visible during the reply back, because half my questions and remarks need to reference it. I have learned this little trick, if you open another tab or window in your browser, you can refer back and forth as your heart desires. Just be careful with that desire stuff, you know it can get you in trouble!



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Hey DL,

I can see it! smile Your sig. line IS there, in all it's glory.

As soon as you are in the "reply mode" your sig. line disappears (like magic) for some unknown reason to me! (Actually, when you are in the "reply" mode, everybody's sig. line disappears!) Don't know why it does that, but it's always been that way, since I started posting on the website - that "disappearing magic" muddled me up no end in the beginning (occasionally STILL does!), to find that as soon as I am replying to someone on a thread, my sig. line and all sig. lines becomes "not" visible, at least until after I have finished sending the reply. 

If you come onto to this thread, and scroll down to just look at one of your own last posts within it, (without being in the reply mode) you should see your lovely new sig. line, right there at the bottom of your last post. 

Tig, I am sure, got it posted for you!  biggrin Magic! C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Hi Tig .... As you can see I don't have a sig line yet....not sure how to do it.

I went to my profile and entered it but it's not saving to my sig line for some reason.

Thank you in advance!

June



-- Edited by Dandelion22 on Wednesday 17th of January 2018 09:46:39 PM

__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Of course you can/could! Not impossible, although you will feel you don't "need to", are not thirsty, and it is difficult to force yourself to drink more water than you want to or are used to doing, and of course it is not that fun (inconvenient in fact) having to go to the loo all the time. But when you are on these powerful anti-virals, water is your best friend (in so many ways). 

This topic comes up time and time again, why, how much water, etc - aim for dilute colored urine, very pale yellow, let that be your guide, not thirst or inconvenience - strive for that gal of water per day and judge by how you feel and dilute color of urine.

I can tell you, I could make myself feel better and could cure a headache on treatment, just with my water intake alone. (Of course, you have to be doing everything else correctly as well, keeping sufficient electrolytes going into you along with the increased water, treating yourself with TLC, good diet, enough sleep, less stressful demands of yourself). But these drugs need to be transported, and their aftermath needs to be excreted, in a non-dehydrated body. Especially so in the SOF based regimes in which the kidneys do a lions share of the work. But all the DAA's need your body to be in a non-dehydrated state.

We have found (anecdotally) many people do far better (as far as how they feel) if they are extremely well hydrated while on anti-virals. Strive to reach that gal per day when on meds, a gal a day spreadout/drawn out over a 24 hour period. I actually found I needed to keep on with the water for weeks after I had finished my meds. 

I was never a water drinker (prior to treatment), I was one of those blindly chroniclly dehydrated people, but the lesson of being on anti-virals finally helped me to learn how important water is to a body, for all of it's functions (on anti-virals, or not)! It made me practise what i already knew, but never did very well before.

To this day I can cure, improve or minimize a headache merely by increasing my water intake. 

You will find about a million dif opinions on-line about how much water a body should drink in a day, on a normal day - but these are not normal days when we are on anti-viral drugs. There are algorithms based on wgt/sex/etc., etc. Here is yet another one! ... a 120 lb. person is the example here (low intake would be .5 ounces per lb.) higher intake would be 1 ounce per lb. ... 120 lbs. X 1 ounce per lb. = 120 ounces per day. That is only 1 cup shy of (8 ounces less than) a full gal (128 ounces).

It is very hard to induce "water intoxication" or hurt yourself from simply and safely increasing your water intake - unless your doc had, for some odd "rare" good reason, expressly forbade you to drink lots of water while on these meds - otherwise I would definitely drink a lot of water! Just make sure you are well nourished and get sufficient electrolytes.

Image result for water by the gallon photos



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

i just dont think i can drink a gallon of water a day.....first of all , i will be sitting on the toilet all day long...... i am already upping my water intake..... I will try

connie

 



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Never thought I could actually need more water than half my weight in oz. Makes sense. I'll try it.

Thank you for the sig line help!

June



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Thank you Canuck. Your words pearls of wisdom on all levels. Inspiration. I need to remember again and again every day! And thank you for jumping ahead in time and seeing my new me after a life of sick! Your kindness appreciated.

Mavyret has really been doing all those things. I've turned chalk white for a few days, had a red rash on my palm for a week, and the typical DAA fatigue is all. So grateful it's not slamming me.

Water water everywhere and drinking every drop! You're so right!! I'm on it!!  biggrin

I didn't feel Harvoni on a deep molecular level like I do the Mavyret. It's strange. I take 2 baby aspirin a day (am/pm) for pain, and prophylactic protection from stroke during treatment.  All OK with med team.

There will be a 4wk viral load. I'm halfway there!

Thank you for the help.

June

 

 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

I agree, it sounds like water intake could be increased to see if it offers you some relief. Canuck is right, some people have to drink more than the gallon per day recommendation. It has been proven to help time and again! 

That‘s a mighty fine signature line. Well done!



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

DL,

Great to have an update from you. I am sure these new potent DAA's (that we are so lucky have in this wonderful all-new DAA world) ARE working very well for you indeed. I too believe it, you when you say you feel the MAV is working. Likely with the first pill past your lips, MAV started it's work, and you may well have been surprized to see what it had accomplished, even within the first few hours/days of being on it! Viruses are being thwarted and confounded at every turn, starved, strangled, self-destructing, imploding as we speak! If only we had minute to minute blood draws to be able to see how quickly the demise is happening to the viral scourge which has being playing havoc with our bodies for so long - but, you will get to see some of those rewards soon enough, when you start to get some of your LFT's and VL's back. So glad you are getting rid of this insidiously harmful vile hitchhiker forever. Best thing you could do for yourself and your future health. I am already jumping ahead  in time and cannot wait to see how being HCV-free may improve many things for you health-wise!

It is now a very lonely place your HCV is in!

Yes, that was very good, that you had already cleared with your doc any sups, meds, etc. you had wanted to take before you started - that, and taking MAV with a moderately to high fat content meal (which sets the correct acid/alkaline environment for your drugs to be in), as the mono outlines, is all that is really required to ensure solubility/absorbtion. Just keep taking it same time, every day, and do keep piling on sufficient water.

Dilution is the solution to the pollution. With the 5A/3/4A combos (no 5B SOF) the GI does the lions share of work, but there is some renal work as well, as far as dealing with the drugs, but water is still key in transport, for keeping every cell in your body (regardless of its job) in top-firing order, ensuring distribution, metabolization and excretion of the drugs.  

You may well find you need to drink more water than you anticipated, or feel thirsty for. Should you notice any brief period of bowel looseness, do not be alarmed, it can occur (I believe) sometimes early in treatment, and that should be very limited/transitory. Constipation (on the other hand) is something that you should avoid, if you notice either of these, water is and will always be your best friend. Constipation is telling you you need more water, just as feeling yucky is telling you you need more water, even if you are not thristy. Aim for seeing pale, quite pale, dilute urine in the toilet bowl. Just ensure you are keeping up on your electrolytes along with your increased water intake.

Helps to have that gal jug of water sitting on your counter to truly "see" how much water you ARE consuming in a day.

Did your doc "pre"-OK any kind of analgesic for you, should you decide you want some relief from body discomfort?

I too had trouble figuring out how to do my sig. line when i first arrived here - no worries, Tig to the rescue!

So, did you say it was week 4 you were going to have your first LFT's and VL drawn? For your sig. line, do you have any "pre-treatment" LFT's or VL's to share (to be able to compare back to)? 

Onward soldier. biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Thank you Canuck! Great resources.

Mavyret, according to my Specialty Pharmacists, and my gastroenterologist, does not require a PH gut environment to work. I believe there are Rx's to avoid though. 

Magnesium has been OK'd by my med team.   I take it and a couple of other supps as well.

Going by the way I feel Mavyret is working.

biggrin June 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Hey Canuck! I'm on my 13th day! Just slightly miserable to but hanging tough.

I followed your directions for sig line and sent it all of into cyberworld where it's disappeared. Tig has offered to take over and do it for me.

Thanks so much for your well wishes and interest! It's gets lonely out here in the jungle, but I'm working it. 

One foot in front of the other.

June

 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Thank you for the well wishes Tig! Wootwoot! I adore the thought of a "new brain"!!! 

I'm actually on my 12th day, and have that "saturated" feeling. I've had increased muscle joint pain. All over. Water helps a lot. Other than fatigue and some occs mood swings not bad. The pain is an issue tho, I'm hoping it eases up. Mavyret is subtle but pretty potent.

Thank you too for offering to do my sig line. I tried, thought I had it, and it disappeared. I'm still learning. 

Thanks so much Tig,

Best to you!

June

 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Hey Angel and DL,

I got back into to town tonight after an overnighter, and trying to catch up on some posts, but did notice you were both reading that link "About DAA Absorption" (acid/alklaine balance, baking soda use, etc.) ...

If you read the monographs for many of the DAA's, you will find similarities in them (whether it is Harvoni, Epclusa, Vosevi or Mav) in that various "acid reducers" PPI's can be contraindicated for their potential negative interaction with DAA's, while you are on the DAA's. H2 antagonists and many other things that affect/reduce acid (increase your gastic ph) have to be taken into careful consideration so as not to intefer with the DAA absorption - whether it be a simple as taking the DAA as recommended with a meal, or, not taking baking soda water dosing while you are on DAA's, all has to be taken into careful consideration. 

The Mav monograph (like Vosevi) directs you to take the dose with a meal for good reason. Starting off with the right acid/alkaline environment for the drugs to be able to be liberated and absorbed. That's my take on it anyway. 

The link was just trying to highlight how important it is to discuss with your doc all the other things you will be wanting to consume, before you start DAA's, that's all ...

 

Here are a couple more tidbits, "Catie" is a well known group who wish to advise folk to consider what things may affect DAA absorption ...

Excerpted from Catie:

When Harvoni is taken with the following medications it could potentially cause significant drug interactions:

·         antacids or buffered medications

·         medication to treat indigestion, heartburn or ulcers, such as nizatidine (Axid), famotidine (Pepcid AC, Peptic Guard), ranitidine (Zantac), esomeprazole (Nexium), lansoprazole (Prevacid), omeprazole (Losec) and pantoprazole (Pantoloc)

·          

 

Talk to your nurse, doctor and pharmacist if you are taking any of these medicines. One way to manage drug interactions is to make sure that your doctor and pharmacist know about everything you are taking, including prescription drugs, over-the-counter drugs, street drugs, herbal medications, supplements or anything else. If you have more than one doctor or pharmacist, it is possible for drug interactions to get missed. If more than one doctor is writing prescriptions for you, let each one know about everything you are taking. If possible, use the same pharmacy for all your prescriptions.

 

Harvoni monograph excerpt:

Acid Reducing Agents: Antacids (eg, aluminum and magnesium hydroxide)

H2-receptor antagonists: (eg, famotidine)

Proton-pump inhibitors: (eg, omeprazole)

Effect on Concentration - reduces ledipasvir

Ledipasvir solubility decreases as pH increases.

Drugs that increase gastric pH are expected to decrease concentration of ledipasvir.

 

It is recommended to separate antacid and HARVONI administration by 4 hours. H2-receptor antagonists may be administered simultaneously with or 12 hours apart from HARVONI at a dose that does not exceed doses comparable to famotidine 40 mg twice daily. Proton-pump inhibitor doses comparable to omeprazole 20 mg can be administered simultaneously with HARVONI. Proton-pump inhibitors should not be taken before HARVONI.

 

In the "About DAA Absorption" link that you both read, info from MAV was used, to highlight the importance of taking a (mod to high fat) meal with MAV dosings, and what effect the food has, when taken with the MAV dose. How you will absorb the dose of MAV (in the company of a meal and the right acid/alkaline condition that that meal sets up). That's my take on it anyway. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Hey DL,

Well, that's great! (how you are feeling your first week in). The start of your Mav is turning out better than what you had been anticipating. A real bonus, after all you have been through. No need for a shopper. 

We were expecting you were on a 16 week course, but good you clarified that. 

No, I did not see your sig. line yet. It was a learning curve for me when I did mine. 

Click on your own name, to take you to where you filled out your bio info so well. On that page, see the choices in the upper left hand corner - sig line creation toggle is up there, within the listed choices.

Here's a suggested sig line, and if you can't figure out how to post a sig line, Tig will always help ...

F, 67y, HCV since 1980, GT1b. Semi-annual LFT's, VL, ultrasounds. First treatment: Harvoni, SOT Jan 2015, relapsed Jul 2015. Fibroscan F0 - F1. (Mavyret pre-treatment LFT's) - ALT ___, AST ___, VL ___. Second treatment: Mavyret 16 weeks, SOT Jan 2, 2018, EOT Apr 24, 2018. 

Really looking forward to hearing every aspect of your good progress. This will be a good news journey this time! biggrin C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

Hello June!

Week one down and 15 to go, woot! So happy for you. It's going to get easier as you go along, too. It takes the body a few weeks to adjust to most of these medications, unless, like you experienced before, a sensitivity to the medication. It's uncommon but there's a certain percentage of people that do and clearly you and Connie had problems. Mav seems to be an answer for you and that's worth celebrating all by itself!! "Onward thru the Fog" I like your sense of humor and understand it completely. Just wait, it will improve once this is over and your brain will feel brand new! I remember it well wink

I noticed you mentioned your signature in your last post. You have to use your profile page to do that. There's a menu option for doing that. Once filled in, you will see it listed under your posted comments. I'm going to add mine here and you'll see what I'm speaking about. When I post this, you'll see it at the bottom again, that's where it lives and is part of each post. They have to be less than 300 characters. If you would like me to do it for you, I can. Just let me know.

Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR52:12/04/14

Hep C FAQ

Signature Line Set Up/Abbreviations   Payment Assistance

 

 



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Thank You Tig. I'm staying the course pretty well so far. I just finished the 1st wk without incident, nor has it gotten in the way of daily activities. What a contrast to Harvoni!

Thanks Canuk. I hope I did the sig line OK.  I'm on my 7th day of a 16wk RX, and aside from the usual fibromyalgia pain, I'm good to go. No asthenia or BP problems this time around is such a relief. I fully expected to be trying to find people to shop for me. 

I seem to be a little tired for a few hours after taking it, but no other problems. I especially like that an acidic gut environment is not necessary with Mavyret, as it was with Harvoni.

Hi Allison,  I think my Magnesium Threonate, aside from my D3 - K2 cocktail, is my favorite supp. It crosses the blood brain barrier and gives not only all my muscles some rest, but my brain as well. I really love that it's ok to take with Mavyret.
Thank you for the welcome! Water always by my side.

Onward Thru The Fog,

June

 

 



__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

Canuck, Thats some great information from that link.... thanks so much

connie/angelseven



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

Canuck thanks about the baking soda.... I only used it two times while on treatment about 8 hours ater m harvoni... i did call the pharmacist to check on it although i have to say that every speciality pharmacist tells me something different.... i will check out our link.... thanks,  

connie



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



Senior Member

Status: Offline
Posts: 419
Date:
Permalink  
 

Hi June aka Dandelion 

Its nice to meet you, so glad you are on your way to getting rid of the HCV.

I too have chemical sensitivities and food allergies (in my case, caused by many years of HCV). I am two years cured of HCV but had a wee liver tumour a year after treatment, so I kind of consider that Ive had one year of rebuilding my health. 

Although I am still pretty sensitive to everything, my symptoms are not as dire and frightening/confusing as they were...having a working liver really helps.

Glad you can take magnesium , it is soooooo important for immune and nervous systems.

(plus it fixes leg cramps and helps with insomnia)

Anyhoo, glad youre here

drink lottsa water 

Alison



__________________

60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer 



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Hi Angel,

Many of us try to do things that are good for our health, while we are waiting to be cured of our HCV (and after)! Exercise, good diets, sups we think will help, etc. Only because you mentioned taking a couple doses of baking soda water (way back when), it prompted me to write a little thing, just things I've read before about DAA absorption and acid/alkaline balance, etc. It's over here ... About DAA Absorption . Just thought you might be intersted as you have done Harvoni, and are next lined up for Mav now. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Hi Dandelion,

Glad to meet you, and glad you joined in here. Nice you already know Angel.

I liked hearing what you said, about hope having returned to your weary soul! Nicely put.

Good bio BTW! - all you would have to do is paste some of those details, add your new drug SOT and EOT, and voila, would make a great sig line!

So, 4 days in on your Mav, and you are "amazed at how you are feeling" - that's great! Do you mean you actually feel "better" (in that some of the things your felt before, prior to starting treatment), that some of your symptoms might have already lifted a bit?, or, do you mean more generally like you are amazed at how you are feeling because you were expecting Mav might make you feel bad? Either way, feeling amazed is good!

Thanks for sharing.

So, how many weeks did they decide your course of Mav was to be? smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)

Tig


Admin

Status: Offline
Posts: 8597
Date:
Permalink  
 

Hello June,

Thanks for checking in! I‘m very pleased to hear how easy Mav is and the improvements you’re already feeling. That must’ve been an awful experience when you had a reaction to Harvoni. This new treatment sounds like the real deal and such a big difference. Please keep us updated on everything. This is such a new treatment and the input we can get from you and others will really benefit those behind you. I sure like the good news so far!

Stay the course, treat yourself kindly and HYDRATE! smile



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



Veteran Member

Status: Offline
Posts: 54
Date:
Permalink  
 

Hi Connie, Thank you for the introduction here. Yes, Im a lurker, primarily because Im techno impaired. 

I had severe asthenia and blood pressure problems onHarvoni. Im pretty sure its related to multiple chemical sensitivities which Ive been diagnosed with. Ive had many food and chem sensitiv since I was an asthmatic child. Ambulance trips to the ER after taking prescribed meds have happened 3 times in the last decade.

On my 4th day of Mavyret now, and amazed at how good I feel.

I just had a long talk with another Specialty Pharmacist that provides my meds. Like the others on my med team he has given me the OK to take magnesium and a multi as well as D3 and K2. He said it is the plant based supplements that he advises against.

So hope has returned to my weary soul and Im starting to believe I can kill the beast thats ravaged so many decades of my life. 

I send you all my very best wishes for healing and new life in this new year.

June aka Dandelion22

 

 



-- Edited by Dandelion22 on Friday 5th of January 2018 01:05:40 PM



-- Edited by Dandelion22 on Friday 5th of January 2018 01:06:58 PM

__________________

F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

my friend is on here somewhere, and i dont know under what name.... LOL.. she says she feels great after a few days On mavyret...she was told by James freeman that mavyret is very clean, much cleaner than harvoni....i guess that relates to additives and such... any way she had a really hard time on harvoni and cant believe how fantastic she feels on mavyret!!  We are on facebook a lot, she has a relapser group... I always like you guys here because you had great technical information always!!



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Angel,

I think Tig is a grand master (of many things!) - but he is master of "fix-it" too. biggrin

Why don't you ask your friend (the one you mentioned that has been on Mav for a couple days to join us here?

We would sure appreciate hearing how her treatment goes for her, and it might really benefit her and/or everyone else here, especially people who are on or will  be doing Mav! The more the merrier!  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

I see you guys fixed my personal info on that scan... thanks!!



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



Senior Member

Status: Offline
Posts: 230
Date:
Permalink  
 

Ha, i was creating my own score , I figured it was between 0-1 so it was a .5,  LOL

I had to pay 300.00 for that fibroscan... he was trying to pay the machine off and refused to bill insurance although they would have paid.. that kind of ticked Me off as i got him about 1,000 he wasnt expecting for lab work as i appealed it... i should have written him a letter but never did... yes i thought about my personal info after i posted that, i may delete the post

the cardiologist did not recommend blood pressure meds... as i was averaging about 127 over 80 for two weeks.  I always had really low blood pressure for years and years so i thinking i may have to go on meds eventually...do you think the virus affects your blood pressure?

no diabetes or anything... i got a call from the pharmacist today and i may be getting my meds in a week and one half!!!  My friend started two days ago and feels fantastic!!



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



Guru

Status: Offline
Posts: 2956
Date:
Permalink  
 

Hi Tig, Oh good, I notice (after the fact), that you already replied here. Yay. :)  C.

 

Hey Angel!

Great idea to post the actual report - thnaks for doing that, it makes things so much clearer now.  ; )

So your 2015 fibroscan kPa is 5.1 kPpa's which puts you solidly in the Fscore area of F0-1 . With your 2011 biopsy in the F1-2? range, and without the benefit of any further repeated fibroscans or other kinds of blood tests that may help guage levels of fibrosis over time, we have all been guessing that indeed your fibrosis is low and not high, just as you have been saying along. 

Thanks again for clarifying what your kPa's actually were, by showing the actual fibroscan report. Your prior ref to your fibroscan being ".5", was really throwing me, as the machines do not go as low as .5 kPa's (as far as I have ever read). The numbers from your report now make perfect sense, and now add up nicely, 5.1 kPa's and F0-1.

Lucky you, you got tested on one of those new (er-ish) machines, that has the "CAP" capability that (additonally) guages steaotosis/fatty liver. The machine I keep using for my fibroscans is an older one and has no "CAP" capabilites, wish it did tho.

It is a bonus to have fibroscan tests (or any fibrosis indication test for that matter), when you have them done repeatedly over time - repetiton (over time) can make an individual approximation at one point of time, a little more compelling in their accuracy (as so many tests are just good approximations, at that moment). In my book ... an abd. U/S, coupled with a fibroscan, in tandem with fibrosis blood tests are good tests to have, all at the same time, paints a fuller picture, broader brush, in one stroke, perhaps more accurate. 

I am lucky, I will be followed with many further fibrosis tests, without having "pay" for them (well, save for my expensive trips to get there!), and without having to plead or fight for them - fibroscans, bloods and imaging - for quite some time, as it is a further sequel to my drug trial. I have found all my repeated testing, from pre-treatment right through to current, has been throrough, and very telling and reassuring.

If there are any privacy concerns, you might want to redact your personal identifying data or your docs info off the image.

So, you mentioned the old docs ... so, whats the scoop on your BP, have you said whether you are on any BP medsDo you have diabetes or any blood sugar problems

Fingers crossed, I'm sending good ESP vibes to your pharmacy to phone you! biggrin C.

 



-- Edited by Canuck on Tuesday 2nd of January 2018 10:50:54 PM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)

«First  <  1 2 3  >  Last»  | Page of 3  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.