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Post Info TOPIC: Started Epclusa 1 May 2018


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RE: Started Epclusa 1 May 2018
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clap.gifYes Iris it sure is. I have a new pic ready for Monday when I swallow my last lovely  little Magic Bean toolmao.gif



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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Wooo Hooo!! the light at the end of the tunnel must be getting brighter

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in the silence of the woods, you will not be alone- Chief Seattle

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naďve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)



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Yes it certainly gets me that so many of us seem to suffer with the same type of thing, and it is only us realising to late that it connects, to this blasted dragon. My foot thing has been so bad at times I could not even bear the Doc, Physio or Ciro to touch them without screaming and yet they see nothing wrong. As Observer said, even a sheet at times can be excruciating. Who would believe that a virus running rampant in out blood and damaging our liver could have this effect on our feet/nerves. The things this darn virus does besides killing our liver. angered.gif I wonder in this day and age if the Medical Profession will realise it is not in our head - the pain we suffer is real and extreme. We are not bunging it on for drugs. Certainly not one of my problems that I would have ever put down to the Hep, and clearly the medical profession do not associate it either.

5 more beans to go!



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23

Tig


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Hey Ya’ll,  wink

If I didn’t know we were all getting better and just read our histories, I’d be the first to wonder how we made it this far! Good grief, we’ve all had quite a journey, haven’t we? It is encouraging to see that we’re not alone with so many of these issues. Even more so when we read of the improvements. The pizzer is it took so many years to figure it out... 

I’ve got the added joy of a serious spinal injury and it has taken front seat to many of the lingering hepatic manifestions related to long term HCV. Arthritis and nerve damage seems to be getting worse, but as STL mentioned, you learn to live with it. Doctors all think we’re seeking pain meds, so the standard answer is physical therapy, OTC anti inflammatory drugs and repeat visits that accomplish absolutely nothing. Oh well, they say “bite the bullet”, so I‘m looking for a flavored bullet to bite on. That seems to be working as well as anything.

6 Beans, STL? Wow! You’ll be done and that Dragon will be a thing of the past, in no time. I must agree, Year of the Dragon, is a good sign. 

FA66D93F-9DC1-4DE9-8681-4A157D3CF325.jpeg 



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Tig

61 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!

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the tops of my feet hurt too :( . so do the bottoms and sides a lot too... i too am hoping a lot of this stuff eases off when we recover as time goes by. i use a topical gel with ibuprophen in it that i order from the UK. i only use a little but it seems to help.... have you tried various aspirin lotions and other potions?

and neck pain- and i hear ya about the doctors; it is almost like they are just shooting darts at a dart board.

i'm so thankful the magic beans came our way

i get to go to the dentist and eye doctor on the 25th...... oh lucky mebiggrin

maybe even sinus doctor tomorrow if my ears are still all messed up. , i always wonder if they can really see anything by shining the light up my nose and in my ears.hahaha

have a good sleep stl, and a good magic bean morning as the count down continues 5



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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Wow Observer and Canuck,

It just amazes me how many people who's stories I have read who suffer similar things to me. All these years I just thought I was a weirdo. I have had the medical profession look on me as either crazy or a druggie trying to get my hands on some good meds. I think they realised pretty quick I was not chasing drugs when after they initially insisted on prescribing stronger and stronger drugs patches etc and they were doing absolutely nothing for my pain so I said no thanks and left them to it and and learnt to ignore the pain. My cross to bar and all that. Pain is only a state of mind. Guess I just learnt to ignore it. The downside is I have been known to ignore the pain of broken bones also which has caused another set of problems as in things like bones knitting wrong...ohoh. I just gave up on doctors in general, since there was never anything real wrong with me. I didn't want any antidepressants etc. All the years of funny blood results yet noone ever thought I may have this virus. It was only discovered when I asked to be checked after a call from my old friend telling me she had learned she was positive and felt given our hep story of 20 years previously I should be checked. then another 16/18 years of knowing the truth yet noone cared. You have it but it wont kill you, easy on the booze and protect others from your blood rarara. It took a locum to suggest treatment last year when he saw my odd blood results and I told him I had Hep C. Guess it is never anywhere visible in our notes since I have always had to point it out. I tell you what when I got referred for treatment last year and got the standard - you are on a waiting list, dont call us, we will call you thing I really never thought it would happen. My most recent journeys into the system had not been very fruitful in treatment to get wrongly aligned bones fixed. I even had a lovely Indian Registrar who was going to do a bone graft go off to speak with the head honcho and came back saying ...he feels because of your age and you no longer work it will be best to leave it - my interpretation - you are too old and useless for us to worry about - left me feeling this hep referral would go the same way...My name would never come up so when it did I couldn't believe it. Then everything went so quickly and I was actually going to get treatment. Only then did I really start reading up on the treatment and others experiences etc on and after treatment here and realised I was not alone. I was so pleased to have found you lot. So many others have suffered the same things as me. I was just gobsmacked when I found this forum and starting reading your stories. I was notalone - I was not  just a weirdo.

Now Observer as to the magnesium. I did try that some years ago. I think initially I bought the wrong one, then I bought three or four lots of what I thought was a good magnesium. Cant actually remember which one glycinte I don't think sounds like it - maybe chelate or similar. I know I studied up on it at the time. Its getting late here, Ill have to think about it in the morning but I didn't find any benefit from it and it wasn't cheap so I stopped buying it. I kept up the calcium and vit D for the osteoporosis and mega b for the nerve problem in my hand the hand surgeon had recommended but left it at that. I have been really hoping the feet thing would improve with treatment but seeing yours is still pretty bad and mine particularly in my left foot is getting worse the last few weeks, maybe my cure wont help, the damage is already done. Who could have known that this virus I was led to believe wouldnt kill me, was probably causing so many other issues in my body which never ever entered my mind were likely connected. Having these nerve things so many years guess I can't dare to hope my magic beans will really bring about that much magic.

Don't think I will be seeing the nurse either. She will ring me re bloods. I already have the paperwork. Had it since my treatment began. Next weeks bloods are CBE and MBA20.....SVR12 are for HCV, RNA PCR (qualitative) Anything else will be back with my GP for future normal bloods. As I said apart from the LFT's none of the other odd results have been ongoing, just something different each time, so yes I will be curious to see any future abnormalities for sure.

Clearly we have different names for drugs here. I read you talking about different meds, I have no idea what they are, so don't comment. You always mention Tylenol for one...Never heard of it - no idea, but clearly it was common. thought it is clearly common mild pain med. Here we have as our common over the counter headache pill type things are Panadol/Panamax. Thought in my mind it must be something like that. The packet only lists 500 m paracetamol , where when I looked up tylenol it lists a different ingredient but following on told me that this ingredient(Too late to google again but you know what I mean)  is paracetamol so bingo...penny drops....finally got that one sorted... laughing.gif

I do have confidence that I will be cured come SVR12. I was even born in the year of the dragon....lol - hope its a good omen. I look forward to getting those liver function numbers from next weeks test and as my nurse has said many times if those numbers look good she is confident a cure will be mine, but we can't be sure until October. I certainly will be asking if I will be having any further fibroscans in the future. We shall see.



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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Ah, I see, just the clinic nurse handles you versus the doc having to handle you - works.

That's right, (I forgot) you DID previously clarify that (that of course) they will be giving you all the other routine bloods (except VL) at EOT. I hope that they repeat the tests (as before) which included the CBC and MBA20. I would ask for a ferritin (as they had mentioned at one time that they had found a high serum iron?). Good she will arrange U/S following for you, you could also ask for repeat ongoing periodic fibroscans. Any of your labs, that have ever been out of wack in the past, should be done again at some point, just to prove that they are indeed still funny or remain normal. 

When you do go back to see the nurse, and to get your labs done at EOT, do list all your bodily complaints to her that have been chronic, ongoing (just so that they are foremost in her mind), give her a written list even, hopefully she keeps good notes and will keep inquiring of you, as you progress, as to what SHE believes is of interest to follow - you can also impress apon her which of your items of distress, dysfunction YOU find most important and wish to be followed, in the hope that somehow/someday we are going to get this stuff to disappear. Just make sure she knows where you are at (as far as complaints).

I had different feet things going on than you. In the recent years before treatment I got more and more pedal edema, not appeased with any control measure i could create, seemingly it would come, go, reappear, or just stay ... all of a mind of it's own! with no real causative association with diet, salt, water intake, exercise, elevating feet or having them dependant, it was a mystery to me (of course not knowing I had hep c!). I would get foot cramps too, out of a dead sleep in the middle of the night was bad enough, but those that happened during the middle of exercise class, while in the dentists chair, or while driving on the freeway were very inconvenient! I'm not much of any kind of swimmer, but in the pool I had to have the edge of the pool always safely within grasp or I could embarrassingly drown with my leg cramps! Never in a million years did I ever think anything like my foot and leg cramps/pedal edema was being caused by anything more than ... an unlucky out of shape mysteriously aging unhealthy bod, old kidneys, maybe a little dehydration, electrolyte imbalance, just needed a tad of magnesium etc., blah, blah, blah. It has stopped!, no more pedal edema, only occasion foot cramps, rarely leg cramps - much MUCH better than I used to be, and I did NOTHING dif (except for that my hepc was found and cured!) I am very pleased with this change for the good since my cure. The edema stopped fairly quickly after cure, and I am still, just now, noticing how much less frequent the cramping is now, as compared to the past ... biggrin. I express this example hoping you too will see changes like these. I lost a long time pain too, it simply just up and vanished!, and some other mystery items disappeared too, but that's another story.

Now, with all this talk about being "in the dark" until SVR12. Nonsense - I am of the FIRM belief you were (like almost 100% of us) set up/positioned/destined to be cured from the second that first pill past your lips, and that you WERE already UND at the time your LFT's crashed at week 4! When your LFT's crashed like that at 4 weeks, that is when (or, probably VERY close to when) you went undetected! The rest is just simply sustaining it. It's as rare as hens teeth that people don't get cured nowadays. You are exhibiting the very evidence of an early crashed und at 4 weeks.

I do a lot of reading for fun, scads of studies, i wish I could find the one for you I was re-reading just the other day, but I can't seem to scurry it up again - it was just highlighting what has come to be well-known, with the likes of these new DAA's ... how VERY profoundly, how VERY importantly these early LFT "crashes" ARE - they are VERY significant, VERY telling . I consider you a done deal girl.

You'll get a glimpse of your lovely crashed LFT's, again, at EOT, nice milestones, but that early crashing week 4 one should be cherished. wink C.

 

 



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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)



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Omg StL ...

that pain on the top of your feet is probably/ possibly peripheral neuropathy. furious I had it a bit very randomly from the HCV but the Drs always thought I was crazy when I *complained* ....then during treatment it got so bad I couldnt even let the sheets or blankets touch the top of my foot. It comes and goes now but is still pretty bad, its worse on days that my tinnitus is worse and thats nervous system caused too.... Ive heard apparently some people get it from chemo, so it doesnt surprise me that our powerful treatments might just be amplifying the damage that the HCV did to our nervous systems.

 

oh and about the leg cramps/restless legs at night thingy... I suffered with both those for years and years...and now I take magnesium glycinate (not citrate) every night before bed and I do not get them at all anymore, unless I forget for a few nights in a row. 

Hopefully the proper bed was the answer for you, but if they start again I recommend the magnesium 

6 beans yay. Thats exciting 

 



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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 



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Hi 5, Lovely to see you. Yes I have been reading but I really haven't had anything of interest to report. Basically things have been going a bit too smoothly. OhOh shh.gif 6 beans left in the beanbag..... shoutbox.gifNext week I will velieve I am moving into the light....Had a great nights sleep last night even.... rofl.gifWhats the world coming to!!!! LOL Most of my things I don't feel are medication issues ....just me issues..... as Marvin said in hitchhikers guide.... LIFE - loathe it or ignore it - you can't possible like it.....

Windy as today, I think the roof is going to blow away......walking in one direction would be great but the other way Whoops.... lmao.gif Typical.....Feel good this morning



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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Hey Canuck,

LOL No no Dr appointment. I don't even know if I see her again. (Prob not if I am cured) That appointment was just to organise some tests to get the treatment prescribed. We have liver health nurses who deal with the ongoing treatment, blood tests, ultrasounds etc. I believe from what she said I will have ongoing ultrasounds for a few years, I think that will be six monthly initially so guess there will be one of those invites come my way perhaps a little before SVR 12. I do have a blood test scheduled for next weeks EOT. But its not VL as I have been told again and again it is irrelevant  as we wont know for sure if I am cured until October. Any results prior to that my be false negative so we dont test. I realise things are different in your part of the world but ehh thats how it is here and I will go with the flow. Thats fine with me. I do get where shes at. It would be worse to think I am cured for three months and then find out I'm not. I will get my LFT results so they should tell the story adequately.

Don't think I can blame all my aches and pains on my magic beans. I live with these things all the time. The only time my foot thing disturbs me at night is when I am overtired and get the restless leg thing where I may have to get up and walk for a while and then hope I fall asleep quickly before it starts again. They used to cramp a lot at night but touch wood haven't had any of that for ages. I changed my bed to a normal bed bout a year ago (from a water bed I had had for 30 years) I was sorry to see it go but being so low and moving it was getting too hard for an old girl to get out in a hurry (perish the thought at mo with all the extra toilet breaks...lol.)lmao.gif  and I actually think as much as I hate to admit it that a normal bed does appear to have improved that. My left foot was very painful on my walk yesterday. I only did 3 K. Its the top of my feet that are the problem and nothing works for the pain. Over the years I have been given stronger and stronger meds but they don't even touch the pain all they do is get me flying so high I no longer care about the pain, so I won't take em. I think most of them think its in my head as they do with fibromialgia - unexplained pain - no swelling etc. With my feet I find as much as they hurt something chronic when i first start a walk but ehh I can walk it off.

As to the excessive phlegm thing thing we will see next week if it goes, normally that is something that only happens when I am getting a cold/flu, though I am a very allergic person.

Thanks for caring smile.gif

 



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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woohoo! we are starting the 7 day countdown with STL , i was wondering where you were at on your thread, i do see you around the board posting to others so that was cool.

i feel for you and all the pains, seriously i do know how that goes. i'm so glad you didn't have to go off to daily work during that last month. after 2 months i was done in.

i hope you have a good heating pad for your body; i live by mine.

i think the whole sinus was designed for another creature and added onto us humans at the last minute , cos i know too many ppl [and me] who suffer so much with this model.

i hope you get to take it easy and rest as much as possible on this last week

5



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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There you are STL! Been wondering how you were. 

Wow, only one week to go, I am glad - I will be so glad to see you finished this work - and it has been work, you deserved a smoother ride, but ... you did it and are doing it VERY well. I always wish there was a magic sleep wand handy around here, if we could fix nothing else, it would be nice if folk could get a few extra winks of sleep when they wished for it. Now snot gets in the way of zzzz's! Too cruel. Ya, please do not let the pup in his well-intentioned ways try to fix your sinus thing for you - eww. 

I was always mostly a cat person growing up, eventually when we got our dog, I had formerly been grossed out to think of slobby dogs licking the leftovers off the same plates as their humans and then it all going into the sink for a quick washup - horrors, I thought - hmph, didn't seem to take me long at all before I was sharing dog saliva, dog kisses, wearing 11 years worth of dog hair. 

I had an allergist tell me I should try an experiment for a month, snorting some steroid in saline wash up my nose into my sinuses and back out again - ho-li crud yuck, i failed miserably at it - the doc then let me try a much more poilte nasal "spray" much closer to my skill level, maybe it helped, maybe it didn't, I don't know, i just kinda gave up on all of the spraying and mucking about. I never had "post-nasal drip" before (as far as I know) and yes, it did bother me at night, and generally I sleep like a rock, man, this would be too much if you are already of the light to non-existant variety of sleeper. Always clearing my throat during day. I do try to gargle with hot, hot salt water when it is bad - normally that does work pretty good for me anyway for things like sore throats.  

Ya, you have your fair share of discomforts alright - hard to say what's up with your bad neck and all this post-nasal drip thing added to your other things that might "normally" plague you - your feet bothering you too - does that keep you awake the most? - I sure do hope these things let up as soon as possible for you after cure. We'll just let this drug crud (sorry Gilead and epclusa- I really DO love you!) get outta your system, clear you out, clean you out and wait for "the good" to start to show, in it's delightful fits and starts. Won't be long now, EOT is a VERY good milestone. wink C. 

PS - I know you said are not getting VL labs until SVR12, but do you get a doctors appointment at the end of treatment? If you do, you should list and tally all the things you have been experiencing, just to see if he is motivated to do some kinds of blood work on you before your SVR12.



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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)



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Well here I sit with one week to go. Put the last 7 magic beans in the pillbox this morn. Really thankful for the magic beans and the friendship and help received here. Thankful to have managed so well, with few nasty side effects, especially considering I live a pretty isolated life here, the majority of the time, with just my pup for help. She does give lots of love but can't make me a cuppa tea or get my din-din. She does say oh mumma you don't feel good ill kiss it better a tad too much for me....yuk

Still having this mucous thing going on - definitely not a cold so will see if it goes away when I finish treatment. Like Iris my neck has been killing me but I suspect that and most of my other aches and pains are likely Arthritis/fibromialgia/neuropathy type issues rather than my treatment. My feet have been killing me I know that. I think most of them are my age and these other issues. Was hoping some of these issues would improve after treatment. Guess I shall see. I really haven't had much to report. Have a bit of the lingering headache type thing a lot of the time but its only mild. I would say no fatigue at all. I do feel a bit dohey still at times, and can be a tad lazy no-b- bo'd, but actual fatigue I would say I haven't suffered.

All the best to my on-treatment friends and recovering from treatment friends along with my long time cured friends. Its been a joy to know you are here for me. Thank You. worship.gif



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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ohh Canuck, how sweet - we are on par. My town is small, so most things we have to travel for. There is a larger town 40K (25M away) which has most things but for a bit of variety we do need to hit the big smoke. My kids are down there so I go down fairly often. The country here is quite dry. The hills are only now getting a little green tinge to them. Its been getting cold, but not much rain as yet. We had a few days of rain a couple of weeks ago which has just started to tinge the dry ground. Rain is predicted for the next few days so I washed the linen yesterday. Just did a load of dark clothes and have put it out but will keep an eye out. Its windy as so shouldn't take long, if the rain holds off. Nowhere near as cold this morning so water flows freely. I'm pretty lucky I rarely can't get anything out the pipes whereas my friends regularly cant till about 9.30AM. Doesn't usually cause damage, we just have to be patient. We just make sure to fill the kettle and make sure we have a few bottles in store just in case. It always cracked me up when I worked in pubs, when the tourists from Canada and UK would mention how cold it is. I'd always say but you get it a lot colder than we do. They tell me it feels colder here. We don't get snow, just frigid heavy frosts. They tell me its to cold to snow. LOL.

I agree water is an amazing thing. We could not survive without it! Even most of out motor cars can't run without it so its not just living being who rely on it.

I didn't drink much early yesterday and I think I paid the price with pain in both sides most of the day. I'm on it this morn. Just gone nine and I have a litre down and two cuppas.



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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gee i didn't think about pipes bursting

yep, i'd have jugs of water everywhere.

i'm a bit worn out today too, no beans but coming back from all that and plus allergy sinus woes; i've always had those blankstare

it's def a good day to rest



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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STL,

I almost live in the bush (sticks, timbuctoo, rural, country)  "out there" and WILL travel - (well, ... it's really just a small town ... so I HAVE to travel actually) when I'm needing something from the big city that is!

Funny the parallels we have STL, I was out of town on an "away" too (U/S). I too left my "pet" behind (as he is a downright liability when his shop til ya drop gene is lacking and I have to seriously restrain my shopping time/quota, mind you ... James IS the better driver!). 

That water freezing thing ... sounds not only inconvenient, but a bit worrisome, depending on the water system you sport where you live. Hope the pipes/well/supply (whatever) is going to be alright. I live in a place, where at the extremes, we can get to 40 above in summer and 40 below in winter, know all about pipes freezing, about it being too hot, and the goldilocks paradox! heehee

Don't run out of water - stock pile if you think you are going to have another freeze, boil it up and drink liberally (hot and cold), try that for your aches and pains AND for that post-nasal drip thing you mentioned - another weirdness we share I guess (I've never really have that before, post-nasal drip) but i have been having that weirdness of late too! Maybe a hot salt water gargles for your post-nasal? Stay warm. Amazing how many things water cures! Hot water,  salt water, cold water, soaks, drinks, teas, gargles, compresses, ice, etc ... it's one of my all-time fav medicines and treatments. 

And speaking of water, we live across the big pond from one another but we step in each other footprints - I'd follow you anywhere, you and your world sound nice. winksmile 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.

 

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Yes 5 it was a good easy day. Just vegged in front of teli when I got back. Had a good nights sleep. Water consumption is becoming a bit of a problem these cold days, particularly mornings. I had only had a half my big glass earlier when I have to take my magic bomb. Must admit I wasn't keen on getting out of bed this morn. Its now nearly 9 and I have only had 1 and a bit glasses and a cuppa. Feeling a bit achy this morn too...wonder if that's why.



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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awesome STL, it sounds like you made a very fun day of it and that all the alarms went off for the magic bean

i took my easy 20 min. walk today and we made a small dinner. it's so nice to have the tummy back to normal.

then i parked in front of the tv for some mindless movies.

i hope you and doggo get to sleep in on your next morning yawn

5



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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Yeah 5, wasn't sure if the alarm would sound when ph connected to car stereo since music just pauses briefly when text comes in, so had my eye on the clock on dash just to be sure, but it alarmed me too so alls good. Quick easy trip really. Got straight through xray and down to specialist sector 1/2 hour or so early and amazingly got straight in to see him too. Sometimes you sit for hours. I was out of hospital in a bit over an hour. Fueled up, did a bit of shopping and back here just after one. Never expected that. Some days are diamonds...lol...Feeling bit tired but understandable given the early start and road trip. Guess us country folk are used to doing the miles....lol

Sun is shining and doggo pleased I'm home.

 



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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wow stl, taking the magic bean on the roadtrip.hahaha

i hope it got warmer for you today and that little doggo found the wam bed to sleep while you and magic bean went on the road trip.

 



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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Well 6.15AM and I'm out of bed, (have been for over an hour) its freezing - no water coming out taps, so good job I showered last night. All of me is dressed already - case of have to. Big day - off to town again. Xrays at 8.45 then specialist (Hand not liver) Expecting I will be cleared today, so sure it will be one of those why did I bother type days. God knows why the give someone who lives so far away such an early appointment. Was going to go down yesterday and stay, but decided to just make it a day trip - silly me - already regretting it. Doggo wont be at all happy when she twigs I'm off and shes not. She doesn't think we should be up this early. Thinks mummas crazy. Might leave her ladder up to bed so she can go back to bed if she gets too cold - if she realises Ive left her ladder there....lol. Set the alarm just in case I slept in but woke up way too early anyway. Typical. Will have to take my magic bean with so I can take on road. Bit out of order, just had breaky and cuppa but not time for my pill. Have had a bit of the mucous running down back of throat lately. Heard peeps talk about flu like symptoms as a side so think that is what it is as I'm sure I don't actually have a cold. Only odd thing I've noticed of late. Been making sleep a little difficult last few nights. Have a good day/night everybody. Ive got my road cuppa and a few water bots for trip.



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23

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SeeTheLight wrote:

You wont be too far ahead then for the SVR. I just checked my paperwork and the note says this test is done no earlier than 15 Oct. Hope you feel a bit better in a few days.  clap.gifooohhh aaahhhhh got it never been able to get those extra emo's you often use as they not clickable....just tried c&p and he's clapping right here......now there will no stopping me... nana.gif

Looks like the sun.gifis thinking of sticking his head out. - 0C - 32F earlier, might even consider dressing my top half soon ready for a walk. Very hard to motivate taking warm dressing gown and jammy top off too early these cold mornings, so I spend first few hours in the land of half dressed. (5 to 9 am now)


If you copy and paste the text version of the emoji you want, they will post to your message. There is a link to “more emoticons” under the emoji list when you post a reply. Here’s the list if you want to print it. I did that so I had a quick reference. 

Emoji List



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yay for the emoji's ...they do add fun to a post.biggrin

oh yea, i'm a jammy person... got all sorts for all sorts of weather , cute so i can run about the house feeling like i'm already dressed.hahaha

in a case to walk the doggie, pulling a sweatshirt over the jammies would work too..... the undress to dress always gets me too

yea, i'll prob wait till you do your labs to do mine, sounds about the right timing to know.



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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You wont be too far ahead then for the SVR. I just checked my paperwork and the note says this test is done no earlier than 15 Oct. Hope you feel a bit better in a few days.  clap.gifooohhh aaahhhhh got it never been able to get those extra emo's you often use as they not clickable....just tried c&p and he's clapping right here......now there will no stopping me... nana.gif

Looks like the sun.gifis thinking of sticking his head out. - 0C - 32F earlier, might even consider dressing my top half soon ready for a walk. Very hard to motivate taking warm dressing gown and jammy top off too early these cold mornings, so I spend first few hours in the land of half dressed. (5 to 9 am now)



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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i agree stl, reading tig's story and some others def gave me strength for the journey

i test early october rather than now and that works for me

have a wonderful evening , i'll chat with you soon 5



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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Tig wrote:

2/3rds down, one to go!   smile   Exciting times for sure and youve been doing a marvelous job of handling all things treatment! It has been fun to have this nice group of Warriors from all corners of the planet. It really makes it easier and helps to know exactly how its going for all on the journey. Doing it together makes a positive difference! Im happy for you. 

Keep doing what youre doing and start planning your own EOT party. I know from multiple experiences, the time passes quickly. Youre almost there!  


 Why thank You Tig, number 1 of the new batch down the hatch along with a slice of avocado on toast and a cuppa. 2 glasses of water already down the hatch.

The journey so far really has been pretty easy. I am very fortunate for sure. I read your profile again yesterday more knowledgeable than last time I read it and oh wow. What an amazing man you are, going through such an awful treatment for so long and still able to come through it with so much gratitude and willingness to do it all over again if you had to.



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23

Tig


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2/3rd’s down, one to go!   smile   Exciting times for sure and you’ve been doing a marvelous job of handling all things “treatment”! It has been fun to have this nice group of Warriors from all corners of the planet. It really makes it easier and helps to know exactly how it‘s going for all on the journey. Doing it together makes a positive difference! I’m happy for you. 

Keep doing what you’re doing and start planning your own EOT party. I know from multiple experiences, the time passes quickly. You’re almost there!  



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61 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!

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how wonderful a time you had. i'm so glad you are doing so well on epclusa.

i like to stay in as much as possible in the winter also; but i can do a long stretch of tv any time of year

i hope you get a few more sunny days as a nice surprise for you.

5



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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Yes its been lovely having someone else going through it all at the same time, for sure.

I really don't have much to post since the journey has not been a difficult one.

Have been a little lax this morning, had a big day yesterday. Went to a big function in town. Didn't get home till after 1 this morn and still on a high, so only had 4 hours sleep. (not that 4 hours is unusual in itself for me...lol) But add in the long drive to town and back (bout 5 hours on the road) and a big noisy function, with oodles of laughing and clapping in the middle......Picture me between 1 and 2 am trying to get a good pic of my last magic bean, in poor light....eventually I gave up and went to bed but still too much of a high to get to sleep for ages.

Doggo and me haven't been for a walk yet, the sun is shining so we should just do it.... Wont be too many sunny days for a while so hate to miss one.....I vegetate in front of teli in winter. Late season this year. The ground is just starting to go a little green from the rainy week last week when we didnt venture far, so this bit of sunshine wont last long.



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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 biggrinbiggrinbiggrinbiggrin 

yes, they must use the same mold for the gold [golden ticket magic beans]

i've enjoyed sharing our journey together and i will continue to be on your thread with you till eot also

are you going for a walk today? i haven't decided yet; i did a few things in the kitchen but resting feels so good today

i will work one day after my medical days and then have my regular 3 days off so will walk then [also, or instead]

 



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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well here i Sit. Bottle number 2 is empty. New bottle cracked.....first 7 in pillbox.......1 month to go and counting!



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canuck, i am so rotflmao..... tears are streaming from laughing .hahahahaahhahahahahahahahahahahaha.. i love the pictures 

 

we need a jumping for joy emoticon



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 

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Okay, I have to be clear, I’ll wear the boots, but the thong is out of the question! 

I’m glad things are going good, STL, woot! It helps to have a nice nurse in which you can confide in. There are many folks out there that won’t give you the time of day. They’re coming around regarding the ins and outs of this disease. It took a concerted effort for a lot of circles to even care about learning the small nuances of it or the treatments to destroy it. I still think there’s a lot to learn, for everyone involved, but we’re getting there.

One more month will go by fast. I remember when you were just getting ready to start. Hard to believe you’re nearly finished. You go girl!



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61 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!

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STL, 

Oh good, happy for your updates. biggrin Almost 2/3 of the way home! Down to the last stretch - coasting, all easier downhill now. smile 

I have to say ... as a GT3 you WILL be successful, (you ARE already being successful, right now) - nothing will stop you now! 3's (on epclusa) get cured left, right and centre, there is no doubt about it. Gilead came along with epclusa and vosvei and has taken good care of us 3's now.

Nice your nurse is nice! I didn't always have a pleasant or relaxed visit with all of the staff at my facility during the trial and/or after. It's good when the people are people you can really "click" with and like, and importantly if they are kind and helpful.

Speaking of GT's and VL's, IF you had been... say .... a GT1 (not a 3), and they were trying to decide if they would give you 8 weeks or 12 weeks of Harvoni, then you probably would have had a pre-treatment VL drawn, to see if you were over 6 million IU/mL, that (over 6 mil, or being black) is still in some regulatory books as being a no-go for doing 8 weeks of Harvoni. Some docs, some places still rely on VL's for feedback in addition to other markers, but you are right, the regs and thinking can be ever-changing, evolving.

You are right about the load(s) changing (something I was completely ignorant about when I first got here!), I soon got it figured out, with amazement, learning about the viral war phenomenom (fluctuations while on treatment, or, when not on treatment)! The VL blood draw simply being a pinprick point in time. What "trend" we have seen with the new DAA treatments, quite consistently tho, are the "early LFT crashes", and where the LFT's go, so often does the VL follow. Your VL load likely plummeted along with your falling LFT's.

It IS a valid argument, the "uselessness" of, or "the stress" caused by watching every tweek, blip, fluctuation/movement of a lab or VL while on treatment (as your nurse pointed out), so too is it a valid argument to do VL's for certain cirmcumstances tho, if not just based on compassionate feedback grounds, to know (show) the treatment is working (by using both VL in addition to LFT's). Waiting until SVR12, if it is hard for a patient, can be stressful too. C.

Hey, I'm tellin ya, I have learned more from this site and from you guys than from the whole wide world!!! ... had to look up "uggs", as you said you might have to wear them instead of tongs to the party?? I thought uggs was some kinda underwear. hahahhah 

Tongs .... or?, "uggs" , um, why not wear both for this party, more coverage! wink heehee wheeeeeeeeee

Image result for wearing a thong bikini and australian boots

 Image result for wearing a thong bikini and australian boots

 



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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.

 

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Hardly any sides so alls good here.

hi STL, it's good to read your update of hardly any sides and just a few more pills till the last bottle

it's hard to believe that 8 weeks is nearly up isn't it?

it was nice to read your post and i'm glad all is well your way



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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Nothing much to report here. Still hanging in there doing fine. Hardly any sides so alls good here. Havent spoken on my thread for a while so thought I probs should. Currently halfway through week 7, ready to crack my last bottle of magic beans next week. Have still had no tiredness, and doing everything I need to do without issue, so can't ask for more.

Spoke with my nurse yesterday. Had a good chat. Lovely Lady. They don't deem Viral Load to have any bearing on the treatment plan here. Not prior to treatment nor during, so will never know what I was or what I am during treatment. Liver Function tests gives a good indication of likely standing. They will leave it till SVR and then check it. She tells me VL has no bearing on treatment these days. (did with the older treatments but irrelevant with these new DAA's) It doesn't matter if I have 50 of the little blighters or 5,000,000. What is relevant is that I have the virus, my genotype and fibrosis/cirrhosis levels. That is what is used to  determine my treatment. It doesn't matter how many bugs are roaming around in me, I have the virus and its being treated and that is the important thing. The load changes constantly and they don't want to give any false negatives during treatment but leave it the 12 weeks after to be sure treatment has been successful. Imagine I will have a little nail biting as the time goes on and SVR is nearing, but shall try to contain all of my what ifs.  I have to believe I will be successful, even gen 3's have a good success rate these days.

Anyway my friends thanks for caring and sharing.



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Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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LOL,

Yep they say we talk bit diffrent in "Staya" I recall mentioning to some English Folk one day that i'd been mia cas I was in bed with with a wog. Think I nearly got banned - who would have known it didn't mean Iv'e been layed up with the flu...rofl.

As to the CBE that is what the test series was called but as Canuck says it is the same thing by many different names. Dunno why.

I wasn't concerned bout those results either. I think if everything was within normal range they would be no reason to issue your "come back pills" - when they call and wish to see you about your results hence they get another $37 bucks.

Sorry Yeah it was folate as in folic acid. thought I spelt it wrong when your spell check didnt like it [says she who can't spell] The lead one I was asked if I had been removing lead based paint but I hadnt and next test it was fine again but my Iron was very high....Told her Inhadn't been chewing on Iron droppers either......who nose!



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

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But don't ya wish the labs would have one universal language eh? FBC,CBC,FBP, CBP, FBE, CBE! All the same ting”

Huh, what? Don't start confusing my already fossilized hippocampus... 

 



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STL,

We could figure what CBE and MBA were, but I definitely had to look up some of these other things (kippy, arvo, a tired roll) heehee,  I love the terms you use ... tea time, heaps of things, sleepers. smile

But don't ya wish the labs would have one universal language eh? FBC,CBC,FBP, CBP, FBE, CBE! All the same ting!

Thanks for sharing the rest of your labs, they don't seem too far out of wack. Your doc is not too overly-concerned about any particular one, right? Then, you should not be either, they will likely improve all on their own as you cure and after your cure. They and you will be sure to keep following them until they are within normal limits again. I too had lab oddities pre-treatment, some quite marked, and they ALL miraculously normalized post-treatment and over time - I am betting the same will happen for you - and, as well, that's a good sign, maybe, (the slight improvement in sleep of late) maybe it IS just heralding the sleep improvements to come for you, or ... maybe it was just our sleepytime wishes for both you and 5, but regardless, I do believe you WILL see changes for the good in many areas once you are finished being cured up. I did. And the things that did improve first or fastest kind of surprised me (in the nicest ways). 

Back to the old VL importance topic ... it is quite correct, what they say about VL being of less (or little-r) consequence nowadays with the likes of our tried and true new powerful DAA's, whether you or I are packing a 100,000 load or have a 10 million count, it is all the same as far as epclusa is concerned. Any VL "detected" is "infected", period, and treatment is required. As it stands in the books, anyone, including treatment-naive (TN) 3's, when we get epclusa, we will always get 12 weeks, period. There are only a few caveats (as long as they remain in practise) affecting "length of treatment", if we need to "add drugs or time", or if a certain double or triple be best to choose instead. Caveats, such as for Harvoni - if you are TN and black - then it is suggested you get 12 weeks of harvoni, not 8 weeks, and that would be regardless to the VL. Another Harvoni caveat they have been going by is the 6 million VL cut-off (under 6 million 8 weeks can be considered, over 6 million 12 weeks should be considered), but this then DOES require that a pre-treatment VL assessment be done to chose the right regime for you. For all the DAA's there are caveats regarding being treatment experienced, RAV testing, levels of cirrhosis, kidney disease ... but as far as I can recall it is only for harvoni who would require this pre-treatment VL testing, to see if you are over or under the 6 million cut-off.

Um, I am not up on "lead" levels. I didn't even think it was an "usual" thing they would be looking for in screening. Still, it's good to know all blips you own, so you can watch them resolve again through following and re-testing. 

This "foliate" being high that you mention .... I am not sure if perhaps you speak of folate or folic acid, "foliate" I don't know. Maybe if it was high folates, then that screening would have likely been in part to rule in or out certain kinds of anemias, B/iron, did they do "ferritin" levels on you?  Some people (like me) accumulated iron (probably in part because my body was just not being able to funtion properly having HCV), I obviously had been accumulating iron, for maybe quite some time (unbeknownst to me or anyone) pre-treatment - my pre-treatment ferritin was high, (and some of my other related labs were as well) and they ALL resolved to be normal again, post-treatment. My ferritin level and iron saturation improved after my HCV was gone, and just kept improving, until it was normal again.

How is recovery going from your bleach tumble of late? Too old for break dancing, but can do a mean bleach twist? Hope the joints and parts heal up quick from that fall. wink C.



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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.

 

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CBE huh? I looked for something like that and kept coming up blank. Thanks for the explanation, I'll never forget now. If I struggle with something, it seems to store in a part of my brain rarely accessed lately. I think it's called memory, lol! I struggle with that, too!

It's hard to figure out the way some of these docs think. One will freak out over the smallest thing and the next says ”big deal”. I say as long as they’re close and the Big one's are accurate, then we're good. Call it my simplistic approach to blood test results. It seems to work for me though. Some call it ball park figuring....

I do believe you'll experience some increased energy once your liver is on a glide path to normality. When it can't filter the toxins properly, they just stay in us for a longer period of time. It affects everything adversely, especially muscle tissue. Fatigue follows and so does discomfort. I have lingering joint pain and that's chocked up to age and two rounds of Interferon. There are many benefits to SVR and we get some and hopefully all of them. Took time but I firmly believe SVR gives us more time to discover them. Your ”One Day” will happen. Believe! wink



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Tig

61 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!

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Yeah Tig,

Thats what I figured, when that didn't even work, I just took the attitude -  Don't worry about it - nothing works .....Just try to grab some sleep when I get a tired roll. Def one thing I pray improves when I am cured, and actually for me its been a good week so who knows.

Thats the same thing CBE "Complete Blood Examination"

One of these days I might have one where all readings are normal. As I have said before - every blood test I have as well as the Liver ones being high there is always something weird shows up as well Calcium, Urea, phosphate, Lead. High Rheumatoid factor but Rheumatologist deems I don't have Rheumatoid Arthritis but I have fibromialgia.  Foliate extremely high "you don't need to take supplements" I don't but I eat a lot of greens. Yet next test no change in eating habits but no mention of Foliate but we are now concerned about lead.....Always something odd shows up. One Day !!!!



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23

Tig


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I don't think you've got anything to be concerned about with the very slight abnormal results listed. These things fluctuate often during treatment and yours aren't off by much. I think the one test you listed as CBE to likely be a CBC. I haven't heard of a CBE before. I described the two tests below.

You mentioned being prescribed Temazepam for sleep and it didn't work for you. Wow! That's a benzodiazepine and usually knocks most people out! I took it for awhile and it blasted me! I now have 50mg of Trazadone that works nicely without the next day woozies, when needed. I try and avoid anything if possible. Benadryl OTC works okay, too.

MBA20-Another common analysis is the MBA20 which tests for 20 different chemicals or compounds in your blood including cholesterol, glucose, urea, creatinine, electrolytes and liver function.

CBC-Complete Blood Count which tests several items like red blood cells (RBC), white blood cells (WBC), platelets (PLT) and about a dozen other things as ordered. It primarily tests the blood cell makeup and shows anemia, possible infection, etc.



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Tig

61 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!

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Hi 5,

Been good for nearly a week now - worst night was 5 hours so all is looking up. My prob is I am either awake or asleep and I go instantly between. There is no waking up. I open my eyes and its instant wide awake whether its been 10 mins or 5 hours. I do hope my cure will help in this department as well as making my liver happy.

I am certainly doing well feeling pretty normal most of the time now, so thats great. I am blessed.



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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Hey Canuck,

Guess my sleep is just **** lol. I am a light sleeper, very little deep or rem. Been getting worse for years. Restless legs too. I have to go to sleep when the tired roll hits or I just dont sleep. Many nights I have no sleep at all or maybe a quick 1/2 hour or so. (In saying that I don't feel tired after a quick kippy. Even a little 1/2 hour shut eye in the arvo will prob mean I wont get to sleep till 3 am or so and then only another little shut eye is any at all. Seems to work in  cycles. when I nearly fall asleep tea time or earlier and manage to fight it it may take a few hours to fight it off so come 9 or 10 pm I am wide eyed and bushy tailed and nothing will make me sleep (although I could not keep my eyes open at 6) now I will not get another tired roll till maybe 5 or 6 am when I am thinking of getting up if at all. Tried heaps of natural things years ago to no avail. The doc even gave me some sleepers once Temazapan and they did ab nothing - not even make me a little tired. I'm a weirdo. My friend says 1/4 tab will knock him out....Think I could take the whole darn packet.  lol. So I just don't bother. The most annoying thing is when I get a really bad tired roll late arvo. I hate that.

Bloods were I guess most of the general stuff. The series were called CBE and MBA20 if that means anything to you.

The five that were out of normal range were

Chloride 94 Low <95-110>

Anion Gap 20 High <7-17>

RDW 11.4 Low <<12-15>

Mean Platelet Volume 9.30 Low <9.50-13>

Lymphocytes 4.39 High <1.50-3.50>



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65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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SeeTheLight wrote:

Thank you 5. All is going well here. I have even had a few very good nights sleep in a row. (around 6 hours or so)  Hope that continues. I have had the young grandson (8) for the long weekend, so the days were quite full. I am suffering next to none sides so am very pleased indeed. Took the youngun back yesterday and wasn't even tired so all is good. My halfway mark yesterday - couldn't help but think The $37,500 worth of Magic Beans I have consumed so far only cost me under 10 Bucks. That is the thing that most amazes me with this treatment. I believe they are doing their thing. Guess it will be a long wait to October to know for sure, but I shall have to be patient.



 

i hope you are getting some good rest after the youngun, how awesome that you were able to enjoy that time
i love "magic beans" so much......that's exactly what they are.
i'm so happy we got our magic beans for free, after all we got the virus for free too blankstare
i won't know my finals till about October also, and i agree....those enzymes tell a good story about how the liver is doing under the beans.
there are times i can't believe how good i feel  , and other times how awful i feel..... thankfully it's not constant; and when it's over i'll be saying it really wasn't that bad for a cure.


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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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STL, 

Halfway done! Yay! How time flys. The uphill part is all done now, it's easy-coasting downhill to EOT for you. We will be cheering 5 on to her soon EOT and another UND for her. BTW, I bet ya a million bucks you've been sitting on an UND (for quite some time yourself). biggrin 

I feel for both you and 5 about the added sleep difficulites - good 5 found the valium and unisom as a way to help - what kind of things have you tried?

I got my partner (who is of that sleepless breed too) to experiment with melatonin, so he has been for quite a while now, it HAS worked to a fairly good degree for him, he IS better (on it) than he used to be, but as well, he has had some past physical afflictions become less troublesome at the same time, so, credit for less disturbed sleep may lie there (in part) as well.

Currently, after being on melatonin for quite some time now, and it working for him, he is experimenting in being "off" of it for a while, to see if old patterns re-emerge. I think he will always have a natural tendency and inclination to have eyes pop open and stay open way too early in the AM just cause a thought passed through his brain, no rolling over for him - gotta get up!, but that's just what A personalities go through (I think), have to answer the phone, ya know? But ... being that he noticed sleep improvement being on melatonin, have you tried that? Being that he noticed improvement just by having a lessening of his other afflication, perhaps then after the miracle of your HCV's cures, maybe that will also help in your sleep department? - ya never know!

We know your listed LFT's are good, and that we won't look for a VL until EOT+12 weeks, but what were some of the other kinds of bloods they drew on you, or will draw on you, until then?

Here's hoping the sleeping cupid cradles your noggins in a dreamy pillow all night. zzzzzzzzzzz. winksmile C.



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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.

 

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Tig


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Hey, as long as that ALT stays like that, you’re golden! The liver profile is always a key indicator of how things are doing. I consider it my favorite cheat sheet!



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Tig

61 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!

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i hear ya about the cost... cost me nothing for the cure. neither did the interferon on the short testing period.

it's all so worth it knowing my liver is getting some relief right now



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 



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Thank you 5. All is going well here. I have even had a few very good nights sleep in a row. (around 6 hours or so)  Hope that continues. I have had the young grandson (8) for the long weekend, so the days were quite full. I am suffering next to none sides so am very pleased indeed. Took the youngun back yesterday and wasn't even tired so all is good. My halfway mark yesterday - couldn't help but think The $37,500 worth of Magic Beans I have consumed so far only cost me under 10 Bucks. That is the thing that most amazes me with this treatment. I believe they are doing their thing. Guess it will be a long wait to October to know for sure, but I shall have to be patient.



__________________

65/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23



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i'm glad you are hanging in there and doing well on the path to svr, happy half way to you



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Gt:1a for 36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:Alpha 2-Macroglobs, Qn=400/high. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3,933,000

sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL now. 

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