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Post Info TOPIC: pain under ribs on the right


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iris, i had the bad shingles on the side of my head. i had one week realllllly bad, and slowly over the next 3 months it calmed down. [ that feeling of electricity going thru the nerve].

i'd say over the year i felt spots now and then but nothing ever again... 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Oh my gosh Sailing shoes and Lamont! Your stories are frightening, thank goodness you guys are on the mend it, does take time. Are either of you still having post herpetic nerve pain?

I wanted to give an update, I'm feeing a bit better so yesterday I went out and got a Yule bush, and started to set it up, may have overdone it a bit. Back to sitting down.

Bb, Iris



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Iris, I have had recurring shingles for years - I keep a 10-day Rx for valacyclovir 1g on hand. It's most effective if started within 72 hours of the first symptom. I start immediately. My blister always appeared in the RUQ right above the liver. Sometimes it wouldn't show up for a couple of years, sometimes three times a year. The symptoms evolved. Sometimes the nerve would itch and tingle before a flare, sometimes there was pain. sometimes nothing at all until the itty bitty blister appeared. I start the full 10 day dose of Valacyclovir, 3X a day, and the blister never never develops, it dies on the vine. If I start late, it develops into a mean angry blister that can itch and burn for weeks after the blister dries up.

Over the years, the nerve the virus travelled on became damaged - neuralgia - and I had these intense stabbing pains on along the path of the nerve, which ran right above the liver in the RUQ. When I had my liver transplant, all the nerves and muscles were severed, which changes everything. I asked the doc (hopefully) if that mean't no more shingles. He assured me it would find a way back. I now have an incision scar right next to the blister area and I get random stabbing pains from that. And I have had one outbreak in the two years since the transplant and it was in the same spot. So the transplant did not interfere with the virus's routine.  cry A tiny pimple right above the liver in the RUQ. No change from before the transplant. The pain I get now, same spot,  but now along the incision scar, is less intense.

I got the first generation shingles vaccine when I was first listed for the transplant. The new vaccine, Shingrex (?), something like that, was not recommended for transplant recipients when it first came out because there was no data. When I got the okay a few months ago from the transplant team, there was a nationwide shortage so I haven't gotten it yet. The first vaccine was supposed to lessen the severity and frequency of the outbreaks. I've had just the one breakout in the three years since the vaccine and it was routine.

Shingles can show up anywhere, form your eyes to your toes - usually on the same side of the body or, like mine, in the same place. Weird that mine - and your's - shows up in the liver-centric RUQ. I think it it's often a one-time thing - that it doesn't become recurring unless the immune system is compromised.

That's really all I know about it. I need to get some updated research. Good luck to you. Good that you are UND because you sure aren't stress free right now. I always thought stress was a trigger.



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70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016



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Hi Iris (and Lamont! and everybody),

While I was out of town I did get my laptop to work with the motel wifi, so I peeked in to see how you were doing just before I went to bed, but you had not reported back about your visit to the hep doc. So, late last night  (when I got home again) - that's when my computer decided it was now not wanting to stay connected to the internet!! Go figure - but today, my buddy got me all sorted computer-wise and i can now catch up on your hep doc visit.

Well, small victories, at least the hep doc is not worried (per say) about your liver. 

Keep taking whatever they gave you, the antiviral and the flexeril, if this is what they have all agreed on, or whatever else they said you could take, even if that just be regular OTC pain pills. Until this condition improves you just have to find some ways to get bits of relief - maybe your primary should be asked again about what best to take for discomfort/pain control.  I am sure you are already trying to soothe and heal and help yourslef by every other means, heat applications, pads/bottles/baths, small careful "hands-on" things that help relieve it, even if it is only for short periods. Are you able to get enough sleep with this? I would ask the primary again, especially if your pain control is really poor and this condition is affecting everything in your life (from sleep to moving about and getting out), then you two should be chatting about what else to do/take.

I sure hope it starts to decrease soon! 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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I had some dull, aching pain in my upper right quadrant (of torso). Not a specific sharp pain, but regional. I ascribed it to my liver being unhappy about the HepC and then the treatment.
A year or so past SVR, no pain.

Before you stop any treatment, make sure it is not a side effect, and something else.



-- Edited by LamontCranston on Thursday 13th of December 2018 01:03:54 PM

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Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT



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You can crack a rib from coughing super hard.

 



-- Edited by Observer on Thursday 13th of December 2018 04:56:05 AM

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

3 years...post tx... successful dragon slayer 



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Hey there...just wanted to add a quick update. Saw the liver dr. on Tuesday, they ruled out my liver as a source of pain. They will add an AFP marker to my final blood work which I need to get just after Christmas. One relief down.

My friend insists I have a cracked rib, but I didn't do anything that would warrant that, unless it can crack sitting in a car. 

Primary said I could benefit from a round of this antiviral either way. I get outbreaks down my sciatica on my right leg under my butt, and that is so painful when it flairs I can barely walk, (or push down the gas pedal, thank goodness for cruise control!!)

Bet (hope) this will boil down to back pain, tomorrow will be two weeks. I would say is doesn't hurt as much to cough, but is still gets worse as the day goes on, and I would Not say it is much better, unfortunately. 

Hey Cheddy so... patient is really something we have to be? yawn arrrg. 

Hoodie your artwork is great, I love it. Congrats on the job!! You gonna be the boss lady biggrin Welcome in ceo Hoodster.

Say 5, you know they even gave me a page at the ER explaining that they don't give pain drugs, although I did hear the guy next to me get valium and morphine, so what about me??? if this is truly muscle don't ya think I would benefit from some valium? sheeze, The problem I would have is hiding it from Mr. &*%#$@

Have a safe trip C ! Your journeys are making me consider hard about the property I've been looking at that is a good 5 hours or more from any major airport and about a 1 hour drive to the grocery and gas. 

so much for quick !, BB, Iris

 



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Iris,

It's something alright! But what!, that seems to be the question. This is awful for you, but I am betting and hoping it falls into a category that has no really bad outcome, something that IS going to resolve and then just go away!

You are in a prolonged and taxing and painful state, and the worry of it all caps it all off, one can only take so much, everyone has their limit, it is good you and all your docs are doing everything you can all think of - that IS all you and they can do - to  keep trying to get it figured out.

Do whatever you can to get some comfort, and relief for yourself, keep seeking continued attention and consultation to the problem.

Something is going to give (I mean that only in the right way), it will turn, and it will be such a relief.

I just have an instinct that is will be so, that it IS going to resolve and get better, until then you have my concern and sympathy (everyone else does too) we are all willing this beastly things to let up on you! Hang in there. Good you get the hep doc consult.

I am on the road for a day or so, so will try to check in on you, if the wifi works at the motel. 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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sadly, shingle pain can last for months... it does lessen but the nerves have to go back to normal.

and the shingle virus acts like the flu on the body.... same aches,pains ,fatigue and foggy brain 

they often give real pain meds for it...... or they did before the government declared everybody a drug abuser.

i had never heard of inner shingles cos i had the blisters.. but the pain is along the nerves which are inside. ... hence inner.

if you got a liver scan and the afp marer [tumor marker blood test], then they are on top of any changes in your liver that might be cancer.

what about a mamogram? sometimes back pain can be related to that i'm also sad to say... but since you are searching , please don't over look that.

5



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Iris,  I don't think you are either impatient or a wimp.  If, in fact, this is really shingles, that's some real pain, and it thrives on stress. It could last a while but let's hope not.  I think you are doing the right thing to keep pursuing certainty from your doctor.  It is a profession and all.

We'll be waiting with you.  



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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I would say I do not have a definitive diagnosis. I don't know if I'm impatient or a wimp, can't  really take this pain much longer, the felexeril doesnt seem to help. Called the primary dr. this am, they're texted him a message.

Can one have normal LFT's with liver cancer? I'm a blubbering mess this morning



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Very best wishes to you Iris in hopes that when this current issue resolves you will feel SO MUCH BETTER. Youll experience all the benefits of being cured and you will feel the peace and love you deserve.  

                       



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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So is that the diagnosis?  Shingles?  That's some serious and direct  nerve pain. Drat, another obstacle.  You do know how to hang in there.

For all over 50: The new shingles vaccine is hard to find but is much more effective than the one of a few years ago.  I think the old one was 30-40 percent effective and the new one more like 70-80 percent effective.  I'll be getting it ASAP.

Let's make a pact to keep the stress down.  I don't care what the calendar says.



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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iris, wow, internal shingles. and yea, that nerve pain is like little electrick shocks starting and stopping over and over again. 

i'm so proud of you and admire you so much for managing all of this for so many months

soon you will all new all over.



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Yea, C that was Thursday evening (the 5th) before I got the ok from the hepatologist. (what an ordeal that was getting a call back, you'd think they would at least be curious why I was calling, I told the receptionist that I had been to the ER) by then 5 days had passed since the onset. If I had been swinging from the chandeliers I might understand a pulled muscle, ON my back, not under my ribs. I don't recall feeling brain foggy and lethargic with any other pulled muscle. I'm beginning to think fibromyalgia or some kind of acute arthritis attack, cept for the burning fire sensation in the liver area. Though Pain does have a way of bi locating.

So the treatment is for 10 days, I should be done by the 15th in the am.  

I forgot what else I was going to say, BB, Iris

Found this for Polo,  I love how they mention the word "safe" or "safely" so many times in the clip. now to see if I can find a vid. of what it looks like after the fire. I've seen one on the dismantling of the Canoga Park plant by drone, I'll look for that too.

someone captured the inside of that giant building within the Canoga Park plant.

https://www.youtube.com/watch?v=mRwwUeIPZ6s

They were very secretive when dismantling that portion, had it blocked from street view, here is one of the videos of the demolition, You can see at the very end across Vanowen that Mission Burrito was already raised, Aaannd they have already built a 5 story apartment on that site! the guy that did this flick also did one of Sierra dismantle

I must be feeling a little better, I wasn't looking much at the computer, nor did I even look at my pictures from my trip until last night!



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Ah, that was not clear to me, that you HAD started taking the anti-viral, I thought maybe when you referred to taking something, it might have been the flexeril.

So, when did you take your first dose of the anti-viral, and how many days have been prescribed?  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)



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I am taking the antiviral Valacyclovir, his (dr.) best guess was internal shingles, and after that major blowout at my mom's on my B-day with my bro, I'm wouldn't be surprised at all that this is what is going on. The only test they haven't done is an MRI. The pain seems to be slightly less this am maybe 5% percent more better than yesterday (for a total of 10% now) aww The pain does not come to the front, only my back right where kidney lung and liver are, and it gets worse as the day progresses. I went and got a back support which seems to help a wee bit when I am standing. It's best when I am lying down. (So far I can describe this pain as a pinched nerve, that is much worse when exerting any kind of movement, Or like the liver biopsy, or broken rib.) The fact that I have been so tired and brain foggy makes me wonder. I've done so many brainless things in the last several days, like writing the wrong dates on checks, thinking it was Friday when it was Saturday, stood up with a glass in my lap and it broke all over the place...that was fun cleaning up when I hurt so much. Sheeze

From what I can find on internal shingles I really don't have all the symptoms of that either. Waiting on Monday. Thanks for the input folks I appreciate being heard.

Blessings, Iris



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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bruised ribs. torn cartilage can also occur if you pick something up wrong and that is sooooo painful.

if there are no shingle sores by now i can't imagine that is it, unless you did  take the antiviral?  i can't remember.

i get brain fog from sinusitis and life

i think that is a very sane idea to rest iris. if it's muskuloskeletal it needs to heal up.

5



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Not likely, but I heard of a thing that happened (to a couple people I know, on dif occasions) one lady (after she had had already gone through a flu), then, unfortunately, she had to get this additional thing across her ribline once her flu was done - it IS a weird affliction! (this rib thing she had) - and I have absolutely NO idea if that is what you might have, it's just sheer guessing on my part, which we should NOT be doing around here - you on the other hand ARE doing the right things and are bumping heads with knowledgeable docs who have seen a thing or two to help rule stuff out. There will be about a million websites, all about unexplained "right upper quadrant" pain and all the things that might cause it - look up RUQ pain caused by costochondritis, and you'll see what my friend had, hers went along her lowest ribline from spine to sternum but the worst discomfort was right on her side versus her front or back, it was quite a mystery for her for a while and uncomfortable! Eventually she found a person (a doc) who was sure that's what she had. I recall she was off work, took pain meds, and she just got better.

Frustrating, but that is all one can do sometimes, just keep seeing the docs, get tested for this and that, rule out the worst things, and be happy you don't have those! 

Hang in there, keep presenting yourself as required, until this gets figured out, or goes away. As far as sheer guessing goes, that is not an outrageous guess Dr. 5 made either. 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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Still hurting, and at this point I'm not sure if I'm getting used to it or if it is 5% better.  I called the dr. today, the nurse said the additional tests they took revealed nothing out of the ordinary. Then the nurse said if I wasn't feeling better to go back to the ER. I really don't want to back to that place with all those folks with the flu. Think I'll give it until Monday. I had to cancel an event tomorrow, and wish to get the Yule decor down from the shelves but cannot risk it. Back really hurts if I cough or sneeze, feels like a broken rib, but there this MAJOR brain fog and my ears are ringing louder then they have for some time. No fever, my appetite is fine, have had more heartburn than usual. But then I ate wheat on a couple occations. 

I'll give these meds another day, I've been in bed mostly and wish to get stuff done but just can't.

Thanks for checking in on me,



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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So, Iris, how goes it today?? What the news or update. Fingers crossed that things are quietening or there has been some improvement/respite? 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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ok, not gallbladder or kidney

ulcer?

so sorry  you are going thru this iris



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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As I and Iris have said before, she doesn't have a GB. 

We are all agreed, have to get to the bottom of this, but nothing helps Iris feel any better in the interim.

Keep presenting yourself to the docs you can get to iris, are there not ANY other symptoms that go along with this discomfort?? Nothing at all, no GI symptoms of any kind?? Could you say that this discomfort is roughly following a "rib"-line? Do some gentle palpating of your own, if you can, or get someone else to, and try to physically identify exactly where the pain is located, see if it is confined to running along a rib-line. You have not mentioned whether you tried taking any of the flexeril/or any meds for this (like last night) - have you? You said one doc did find a tender spot to palpation, where was that, and is it still there, exactly the same in the same spot? Or has the painful area changed, grown, morphed, moved, spread at all?

Just curious, how many days of bactrim did they give you and how many days of it did you take before you stopped it.

Keep sleuthing this pain symptom with your docs. 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)



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Back to the doc with you. They haven't gotten to the bottom of this.

 



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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did they absolutely rule out gallbladder ? do you have emergency or urgent care near by?



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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As this somewhat of a journal, I'm taking note that I have now been up for 2 hours, its after 3 am. The pain is worse, it's excruciating to move or roll over. 

 



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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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There is no doubt in my mind that the DAAs that I was on, messed up my nervous system... I had had the occasional minor twinge of nerve pain in my feet before but after, it became much worse, much more constant and frequent. I tell myself its still better than actively dying of HCV.

I sure hope your Drs get your pain diagnosed quickly.



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

3 years...post tx... successful dragon slayer 



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We can do this!  I doubt that the added antivirals are a bad thing.  They are for you body, not against it. Your immune system in taxed and may need the help.  

Also, this may not have anything to do with your HCV treatment.  

Iris, I applaud you for pursuing this with your doctors.  You'll get to the bottom of it.  You know how even if it's just waiting it out.

I agree that any possible reductions in stress are good.  You've had plenty of that. It's time for a break and new horizons.  

REST well.

Ch



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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iris, you have been  thru a lot of stress lately; but yea i got the migraine after tx

i agree, my nervous system was shot after tx cry



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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I dont know iris, but to be honest with you my nervous system is shot. And I wonder the same thing about Epclusa. Will my stress tolerance improve? Was it damaged by Epclusa? I just have to go on faith that Im going to get well and my anxiety will recede. Doing everything in our power (getting into action as Cheddy said) to ensure continued good health is the best we can do. That includes eating well, sleeping well, and taking the best possible care of ourselves by managing our stress. Calling Giead for info and reassurance is also a good idea. Its something that is within your power in an otherwise seemingly powerless situation.  Hugs and blessings to you dear. 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 

Tig


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Iris,

The information I’ve been able to find doesn’t indicate a relationship between any of the DAA’s and the occurrence of Shingles. Matter of fact, the incidence of it in thousands of Harvoni patients alone, showed a rate of 0.16% that experienced an outbreak. There was no indication of viral mutation related to either anti viral medication when taken together or alone. No interactions noted. 

If your GP thinks this would be a wise course of action and your Hepa isn’t responding fast enough, I would consider the GP’s advice. If this is a Shingles outbreak, starting Acyclovir or similar will greatly diminish or prevent it from developing. A full blown outbreak can be awfully uncomfortable and long term. 



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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!

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The Hepatologist still hasn't called back. I'm really frustrated, and sore, if I sit or lie still my pain is a 1, but if I have to move, stabbing twisting knife with dull ache overtones 6-8. I just want to know if this Valacyclovir is ok to take...I mean another anti-viral? How much more can my system tolerate? The primary said the virus might not even reach the surface. Then I saw a report about this form of shingle being mistaken for heart, kidney, and lung issues, all of which I was checked for.

I'm really afraid to take more medicine. Do you think the Harvoni caused this? seems I am having extra issues with nerve related things since. I'm thinking of calling the Gilead people.

Iris



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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omg, not shingles ! i had shingles on my head when i quit drinking and drugging cry back in the mid 80's. 

i was in bed for a week with my head cramping and no pain pills.

iris, let us all unite in concert and pray away anything harmful to you.... let the goodness take over and release any sickness.

i had my vinegar today

i'm so glad you are making the rounds to all the dr's. ; let us know if the blisters appear.



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Iris,

I like your home remedy.  Thanks for posting it again.

I had pre-shingles once.  Big does of Acyclovir stopped it.  Anyone who has had Chicken Pox carries the Shingles virus.  The prior vaccine was only about 60% effective.  The new one is is far more effective but on back order everywhere.  It is highly recommended for "seniors" in particular.  

Is one side of your ribs more prickly?  Nerve pain is direct and intense.  I'm glad you continue pursuing the facts, and I'm glad your docs are being so thorough.  As much as I want to send prayers and positive thoughts, there is nothing like action.  Perhaps they are coupled.

Good on you.  Let us know, please.

Cheddy



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Im praying for you Iris. Lets have faith ok? Lets try not to freak out just yet. Your self care is so excellent, along with doctors care, youre in really good hands. Chances are we wont need to freak out at all and well be glad we didnt stress out unnecessarily. Easier said than done I know. Hang in there sweetie and continue keeping us in the loop please. Take it easy. 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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You sick folks really gotta try my remedy, In a latge glass of water MIX-1tbs honey, 1tbs cider vinegar, a squeeze of lemon or lime, pinch of salt, and as much as you can stand of powdered cayenne and powdered ginger. Stir it up, and Down the hatch!!bleh no...it's actually pretty tasty.

So went to the primary dr. today, he ran some more tests but was a little elusive about what he was testing, seemd to be a different kidney function, and then he seems to think my pain is a pre shingles outburst.  He hit one spot and YEOW! I continue to freak out...now he wants me to check with the Hepatologist to see if there is any conflict in taking Valcyclovir. I called Hepatologist, he did not return my call.

I know what this pain is reminding me of, and that's the liver biopsy test, had two in the early days when I was   non-a, non-b. One in 1978 and again in 1979. The second one they broke the specimen and had to do it again...in the same hole. YeeeeOOOOOWWwww And man, did that hurt and for some time after as I recall they gave me codine for the pain. 

I pray for a pulled muscle, but this feels really bad. (I'm scared) Tried the flexeril last night with a CBD capsule and 2 asprin and I could not get any relief. It even hurts to walk, and it's like the wind is kicked out of me, kinda hard to explain.

Thanks for listening, your favorite dweeby whiner, Iris



__________________

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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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i'm thankful this came during my days off from the job, i'm sitting here all snuggly in bed watching tv, blowing my nose and hoping it goes quickly. i go back on thursday nite so should be better-ish by then.

be well friends

 

 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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uh oh 5, that doesn't sound so good - after all this time and trouble!

A lament for Tig too, it was really too bad that your lungs could not have received a good stethoscope-listen-to with a pair of objective knowledgeable ears attached to the equip, and a chest xray as well, those 2 things were certainly justifiable and would not have hurt (about a week ago!).

Hoping for the best (only and always!). : ) 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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Iris,

I really like that, that the ER doc was so thorough with you - he did his due diligence, covered all liabilities, and protected you by being so thorough in checking you out on many fronts.

Good you had so many health factors checked out all at once - good stuff.

You have a lot of info for your family doc to go on now. 

So, I am assuming that (maybe) the urine R&M (possibly) showed little or nothing at your initial ER visit, but, in an abundance of good caution he started you on the bactrim anyway, just based on your complaints of this discomfort - (perhaps), now, he can further see that your urine C&S is turning up with no growth, thus far, which may be why he is saying it is not a UTI problem.

ER doc said for you to keep taking the bactrim?? Well then, I would, being that you can ask your family doc about discontinuing it as soon as tomorrow. Your ER doc may have had some reason to tell you to finish the bactrim?? - I have no idea - but when in doubt do what he instructed, at least until your other family doc tells you do not have to take the bactrim anymore. How many days-worth of the bactrim were prescribed to you in all?

Good you have had all that testing done and have the results.

You can have the GFR and creatinine repeated in future to see if those remain the same or better. What were the creatinine and GFR levels BTW?

Hope the discomfort is starting to decrease? Take it real easy. Do the things you think will help. 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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i'm def feeling a bit dweeby, i fee.ls like a cold is trying to happen

yes hoodie , sobriety is so much better for me.

tig, sounds like you are slowly on the mend.... imagine that, a doctor giving you less than 24hr notice;don't they owe you some money?

well iris, i'm glad you checked out well with all the tests. and after all you've been thru that is a relief. no doubt your body has taken on some of that stress and decided to reward you with a back ache cry

good idea to call the dr or nurse and tell them what you found out.

get out the heating pad and take it easy.;heart:



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Iris GFR is glomerular filtration rate aka kidney function. Thats great news that you dont have a kidney infection! Not sure how to advise you on completing the round of factor in or not. Good call talking to the doc about that. And dont ever worry about bringing your worries here. You are NOT a dweeb. Well ok if youre a dweeb then Im a dweeb. Were all a bunch of dweebs!!

5, Congrats on 26 years of Sobriety!! Hope the allergies clear up pronto. Please dont take any Benadryl, that stuff causes more harm than good. But maybe you knew that already. 

Tig, Im glad youre seeing signs of improvement. Its really nice that you can be there for your dad. 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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I feel like a complete dweeb. (Where's the bend over and kick me in the butt emoji  when you need it?) The folks at the hospital diagnosed me with ....wait for it..............................................Back pain!, confuse huh, that's some back pain that resided where the liver is.  anyhoo, he said finish with the meds though he didn't see any signs of kidney or other UTI. The urgent care had given me flexeril but I didn't take any, ... guess I will give it a try. They did x-ray for possible blood clot, because it did happen right after my long drive,  he asked if I had a family history of it (don't know much being an adopted person) also an ultra sound of liver, kidneys and pancreas  (the latter wasn't clear, or well veiwable.) They all looked great except a slightly fatty liver. (That hadn't changed) Had urine test, CBC, coagulation, general chemistry, cardiac  (troponin 1) and an Ekg, which showed some arrhythmia (already been seeing cardiologist about that)  tests all came back normal (YEA!) Slightly elevated Creatinine, and slightly low eGFR NonAfr/Am. Whatever eGFR is. At this point I am unsure if I should complete the Bactrim. I do have a follow up with my primary care people tomorrow. 

Sorry to have wasted all you'alls time I was awfully scared there for awhile. The thought of a blod clot got me going to the ER because it does hurt to take a deep breath and I'm so tired . .....Told the Mr @#% $! When he walked in the door..........bad news, I'm gonna live!!!biggrinbiggrinbiggrin

Thank you so much, Iris



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

Tig


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No, he didn’t... Had plans to go in today with my Dad, he had an appointment. The doctor‘s office called to reschedule. He went on vacation. Next week at the earliest. That’s my excuse and I’m sticking to it. I sense improvement...

Iris, I know the frustration of insurance acceptance. I have a Medicare Advantage plan through Blue Cross HMO. It’s amazing how many practices and labs don’t take it. I could go to urgent care or the hospital, but they kill you with deductibles, copays and percentages. I hope you get the imaging you need to determine the cause or extent of trouble. Are you getting any relief from the Bactrim? Good luck!



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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!

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did tig go to the doctor yet?

iris, good luck with getting those images 

i'm still mildly uncomfortable with sinus meds and allergies, trying not to get the cold that's going around work , tis the season. i have no fever and just have to wait it out. i know when to see the doc for this cos i have so much experience with it cry . i try to save the antibios till i know for sure

5



-- Edited by 5-1-18 on Monday 3rd of December 2018 04:31:53 PM

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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Ok so the imaging center doesn't take my insurance, I called my primary and they said go the hospital.

So off I go...Iris



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

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

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Hello Iris -- glad you got to the doc...kidney infection and issues can be mighty uncomfortable and serious. Take good care of you...pills, water, rest,,,relax, hang here with friends..

ps to Iris:

Yes, the Santa Susana place was amazing up in the hills and all the canyons around. It was back in the day before I became more environmentally conscious...we would hotfire the booster engines up there as part of testing..and we would burn magnesium and watch it glow when we had to work late...back in the day it was. The engines had hundreds of tubes that would fill with liquid nitrogen, and the engines were manufactured at the Rocketdyne site in Canoga Park and then taken to Santa Susana for the testing. Its hard to imagine testing engines up there now with all the dangers. This was back in the mid-80's to early 90's. 



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HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks and 6 months!

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Awwww Iris,

a kidney infection can really sap your energy and make you feel weepy. I hope the antibiotics kick in quickly and you feel better soon (and no stones)

hoodie , good decision   

only thing I occasionally use booze for is saki in sauce (cook off the alcohol) 

had one dram of scotch when my brother died, one when my mom died and thats it in 35 years.

Tig,go to the Dr!!! please



-- Edited by Observer on Sunday 2nd of December 2018 05:01:53 AM

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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
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3 years...post tx... successful dragon slayer 



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oh iris, you've been thru so much

i'm so glad you are on top of this.

doubt the beer did much to you at f1/2...  of course i think it's better for your liver to heal up awhile before having beers on a regular basis.... no telling how quickly it will affect a sad liver over time tho.cry

i quit drinking  in 86'cos i had to due to drug and alcohol abuse and feeling crazy [i'm sure my liver was hoping i'd feel crazy enough to quit]. i have  mid f3 so quitting prob saved my life ]

that must be scary to have nuke melt down near by... 

do they treat kidney stones or wait? i pray the antibios do the trick.

5 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Glad you went to the doc for his decision.

We can guess he did a R&M (routine and microscopic) urine test while you were there, and (as well) collected a C&S (culture and sensitivity) test, for which there would soon be a result.

I assume the ER doc used his good judgement, perhaps basing treating you for a UTI on the signs shown via the preliminary R&M (a R&M might show things like protein/blood,WBC's/nitrates/turbidity/ph, etc.), and the further C&S would show the specific organism and what antibiotics it may be resistant to. A C&S usually does not take too long to return from the lab, maybe 24-48 hours somebody should be able to find the C&S result. 

If it were me, I would follow up on getting the results of the C&S, to know for sure what organism it shows, and to make sure they will not be wanting to change your bactrim rx. I would also want to know what they found in the R&M.

Can you get an appointment to go see your regular doc and get the C&S result via him? Before your bactrim runs out (bactrim course tend to be short) it would be good to bumps heads with your regualr doc on the test results and whether you need any rx change, before you are finished the bactrim.

Should they ever mention again they wish to pursue looking for stones, do so, it hurts nothing to know you don't own any.

I hope the discomfort goes away quickly

You are good example for Tig - tell Tig he too should seek the advice/consult of a doc regarding his chest! mm, maybe 5 too with her sinuses! Never hurts to get an objective opinion, exam, tests or images as and if required. : )  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)



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Way to go getting to the doc and getting treated so quickly Iris! Im really proud of you and hope you feel better soon. Praying for no kidney stones!!



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 

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