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Post Info TOPIC: Health Updates - Among Friends
Tig


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Well, it sounds like a lot of running back and forth, but at least you got some answers and direction forward. That’s good news! I do hope things start flowing as designed soon. 

You should fill the Cipro and put it in your survival kit. It’s good if you’re ever attacked with Anthrax, lol! You never know these days wink  I’m glad you had the first script to fall back on. The relief typically follows fairly quickly, but you need to stay real hydrated and if you can, take a pro-biotic to keep your gut bacteria in balance while you take them. It really helps.

Give up sugar? OMG, that would kill me faster than eating it! I honestly need an intervention. I’m a snacking wreck... no



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Tig

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

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thanks cheddy,

yep, it will be nice when the pee time goes back to normal.

and yes, the terror of "what if" is gone

i have cut way back on sugar, i joke about white cake but only get a 3 x 3 inch square of it a cpl times a month; and don't eat candy or cookies or pastry etc.

 i think i was eating too much bread, that is my comfort food.... even if it is low sodium, i am only over by 7 points on the sugar but i will be even more careful. 

i never add sugar or honey or etc to anything and eat just the slightest smear of no sugar fruit spread ..... it has to be the bread

and that fake sugar ice cream i had a few weeks ago ended up giving me the worst gas so no more of that...i don't do fake sugar either.

my skin seems to have become hardier but i still can't eat most veggies or cheese......anyway..... as the diet turns 

and i took my pill almost 2 hours ago and no weird sides, i'm always happy when the first 2 hrs are 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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Good work, 5. I'm glad you are taking the pills just so that you can get this over with. If something else comes up with that, you'll solve it, too. That's what you do!

Getting off of the sugar might be good anyway.  It's kind of hard at first, but it really does get easier, and better too.  

I'm so glad you are on the right track. No "tinkle terror" for you!



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holy cow, i feel like i was on  the mr. toad ride at disneyland.

saw the doc and pee test was neg but my blood work showed something in the kindneys etc; i will get my own report tomorrow so i didn't see them today. they had misplaced my labs so had to wait some more while they found them.

i asked for the shortest time pills and she gave me cipro for 3 days, i drove to the pharmacy and panicked.... i don't want no stinkin' cipro... flouroquinines. wth , so i drove back to the docs and said i'd be happy to take the medawhattever.  

 

it's about 5min to the doc from my house, and 5min from doc to pharm, and 5 min from my house to the pharm. so it wasn't like C's long trips

the good thing is i was more than happy to try the new meds by the time it was all over

for now i have the pill down, feet up, ate something and watching tv; too wound up to go to sleep right now.

i was so happy when the pee test was good, then she went over the labs.cry

i had lots to laugh about on my weird trip today and now i just want the pills to work. 

i doubt this is harvoni related

thanks for all the support friends, this was scary for me.

i'm glad i got up and went cos i absolutely needed to.



-- Edited by 5-1-18 on Monday 26th of August 2019 02:34:36 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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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thnx tig, 

i go and sign in then sit for a cpl hrs, maybe i'll be one of the first today



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0

Tig


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Good luck, 5! 



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yay, i made it to get up time 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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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only one more hour to go till i can get up and start getting ready yawn



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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tig, it's cranberry tablets i think.. and i have those but just started the cranberry a cpl days ago and not sure if i caught it in time

i will talk to the doc and pick up the meds, if the sample comes back that i def need them then i will start the antibios. 

the worst part is staying up all nite to get in to see the doc. of course i couldn't fall asleep so here i am trying to entertain myself while i wait. only  2.5 hrs till i have to be there....

oh well, had a 5 day weekend this week so i can just veg out aftewards, and i normally go to bed around this time , so it's only gonna be 4 hrs past my bedtime when i'm done with it all and back home.

still, when the clock reads bedtime ..... oh well, health is wealth.

i need to tell the doc about my GB and refill my antihistamine so it will be good for me.



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0

Tig


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Have you ever tried that OTC medication for bladder woes called AZO? It has helped my wife and daughter in times of tinkle terror.



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Tig

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

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thank you so much obs.

i guess i just needed to hear from someone who took antibiotics for this , now i can move forward and start taking them as soon as i pick them up from the pharmacy.

drinking the cranberry at work helped me to get thru the 2 nites feeling good, but that sugar hangover today was no fun.  i did get the organic , unsweetened make your mouth pucker stuff after work last nite. hahaha

and i have the pills now too , i will just keep them in my diet now in case this uti wants to move back in after the antibios do there thing.

can i keep drinking the cranberry while on the meds?

i'm lucky to not be in much pain, but for sure that groin area is tender to the touch and my bladder always feels full, and was hurting a few days ago, i thot it was muscle strain from working out lightly.[ at the crease where the thigh meets the pelvic area ].....and omg , peeing so much! wow



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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The women in my family have been plagued by cystitis all our lives.doh I got my first one at 9.

Sugar is a big no no. Cranberry can help (unsweetened) and Vit C can help extra water can help, a heating pad can help but personally, I would do the antibiotics if I were you. You just feel so awful with a uti and the pain...yuck! poor you

I dont know anything about macrobid , sorry, I just always do whatever meds the tests recommend for that uti. I would just do anything to stop the pain.

Hope you feel better soon



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well i'm planning on going in the morning.....ugh. have to get there at 8:30 to be seen but it will put my mind at ease.

mainly i have to pee all the time and it's weird.

how in the world is harvoni easier to take than antibiotics? blankstareblankstareblankstare



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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thanks c,

the nurse said bladder and asked me if i had symptoms so i guess even they aren't sure; left it up to me to take the meds if i feel i need them.

being new to all of this i was sure iwas gonna die if i didn't take that awful stuff.hahaha

so yep, wed will be a week and i'll do a repeat, starting the meds if i have to. 

did you take antibiotics for yours?

how do they know it's kidneys"?

i do feel a bit crappy today after so much cran and sugar [from work], now i have the no sugar stuff and cran. pills so i don't od on sugar; i was running high on the glucose test too so i'm sure this didn't help.....but i am back on the healthier path now. no more cake for awhile

 

and not sure if the GB likes the cran either :hahhahahaaha:no:



-- Edited by 5-1-18 on Sunday 25th of August 2019 11:39:41 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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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5,

So, sounds like maybe you only had a R&M (routine and microscopic) lab test of your urine, a R&M is capable of indicating a high likelihood of a uti, but not necessarily indicate whether you had infected kidneys as well. If the kidneys were involved (along with the bladder) then you would likely be having some other more kidney-infection-like symptoms as well as bladder symptoms. But people can get all sorts of differing uti symptoms, some can have fairly "silent"infections or for some the symptoms are very noticable/clear - that's the way it was with me back in the old, old days when i had SO many uti's. Your doc would be asking you what all of your symptoms were. 

Often, they can (or will) do a further urine test, a  urine C&S (culture and sensitivity) if your R&M is indicating a uti.

I do not think one can count on "symptoms" (alone) to figure out whether the overpopulation of an organism has left your urine (or not) without further (repeat urine tests), if I get a positive R&M then I prefer to know exactly what i am growing and what antibiotics the organism might be resistant to by having a C&S done (as well as having the R&M).

Maybe if all your symptoms have come to a "complete dead stop" and you "feel perfect" again, AND a repeat R&M shows absolutely nothing, then maybe your body has cured itself - but maybe not. (In my book) the repeat R&M is a necessary minimum even if you think you are self-cured, (1) because you had indicative symptoms and (2) because your first R&M showed "something".

At minimum, it's good you planned on having another urine test, and I would talk all of it over with your doc. Good you are dousing yourself with cran.  : ) C.

PS - I read macrobid is not the first choice, if you have a kidney infection (macrobid is better for when one only has a bladder infection) - that's what the write-up said anywho.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

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hi c&mb,

i've been drinking cranberry juice for 2 days now and any symptoms i did have seem to be going away.

i had some lower ab discomfort and had to pee frequently, but seems like that is all easing up.

the urine showed something but not if it was in the kidney or bladder or tubes.

so.... i'm gonna keep on the juice a few days and go get another pee test and see if it cleared outta there on it's own; and i can talk to the doc about antibiotics.

i thin macrobid goes right thru the urinary tract, but i never had a uti before and this is a new med.

i'll go to the doc on wed. to give it a full week to change if it's going to.



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Well 5,

It's hard to say or guess how good macrobiD may work for you (as opposed to how it works for anyone else) - all i know is that when i looked it up it seems to be for simple uti's and is supposed to work fairly well and in short order - but they often say that about quite a few antibiotics for simple uti's, that there are quite a few antibiotics that will work quite quickly to subdue and kill a simple uti. All i read was that macrobid would NOT be the choice if one also had a further kidney infection involvement (not a just a simple uti/cystitis).

If you are reluctant to take the macrobid, for your varied reasons (and are not in uti distress), then i suppose you could delay and go back tomorrow and discuss any other available antibiotic choices with your doc - go over what antibiotics you have ever taken in the past that did work for you (go over which ones you have "reacted" badly to in the past, find out (if they did a urine C&S) what likely uti organism you have and what it would be sensitive to, and weigh whether you have kidney involvement symptoms or not, and come up with the same or a different antibiotic choice. If they did a urine C&S the report it should list all the antibiotics the organisms will be sensitive to or resistant to. But maybe you have been through all of this drill before with prior uti experience? I did read macrobid is excreted mostly via liver. I think sulfa's (that I have been known t to have trouble stomaching - just me) have more of a urinary excretion?

If you have never taken any macrobid family drug before then how do we know how you will react to it - (in theory) it should kill the bladder organisms quickly. But they say the same for sulfa drugs and quite a few other certain antibiotics!

Logic rules, that C&S results and any hx of a complete intolerance of some certain antibiotic in the past can have some say here.  Boo on uti's - hope those symptoms get treated easily and go away fast. C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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Good Morning 5....like you, Im pretty sensitive to antibiotics and avoid them unless absolutely necessary.  Have never heard of the one they prescribed for youbit did a little research...lots of info on drugs.com.



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hi friends, 

does anybody had experience or knowledge of the antibiotic Macrobid?

it was prescribed to me for a uti and it sounds just awful.

i've never had this problem before and i'm so sensitive to antibios ... yikes.

thanks for any info or input with this . 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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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update on hubby's medical news.

he was diagnosed with a high ck ..creatine kinise? that means muscle disease... prob not brought on by the harvoni is my guess, but a lifetime of athletics. 

but the ck factor is a good test to define more muscle disease.... now he'll be off to another rhumatologist soon  for further testing and advice



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hi 5!

This is good news, that you have a plan 5.  This health business is a full time job.  Hopefully evicting the GB will make you feel better.  It's remarkable that we actually give up a body part.  Our livers wouldn't put up with that!  

Now, if you can quit smacking stuff, you veins will thank you.  Weird one.  I'll have to look at the link Iris shared.

 

Lam,

Do you have any test reports?



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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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thnx obs and harry



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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All the very best wishes 5 , I'm sure a lot of people are on this ride with you, everything will be ok ,sounds like your in good hands .

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What a relief to have a plan 5! Hope that naughty GB behaves itself until October. I also hope the fibres havent interfered with getting it laperoscopied out. smile



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i saw the surgeon today and he recommends we move the GB outta there since it can only cause drama and trauma again, and again.

i'm looking at the end of october for the ceremony. 

i like my doctor who is also a vascular surgeon.

i told him my f3 status and he said that if the fibrosis has gathered up the GB then he might have to make an incision , otherwise the laproscopy will work. He will only know that once he's looking inside, and i would spend a cpl days in the hospital , but at least i'll have doctors and nurses making sure i'm ok

the best part is no more extra tests! just lab work and another visit a month before the surgery. 

i am as ready as i'll ever be and i'm sure i'll be sharing my journey here with everyone. 



-- Edited by 5-1-18 on Wednesday 17th of July 2019 03:00:37 AM



-- Edited by 5-1-18 on Wednesday 17th of July 2019 03:01:41 AM



-- Edited by 5-1-18 on Wednesday 17th of July 2019 03:02:38 AM

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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Thanks Iris for the link...they do look like that although never a whole finger...thank goodness...perhaps if thats what it is...its not too bad in my case.  Im glad Im not the only one (but sorry you have had them ) and Im glad it doesnt foretell something horrid. Now I think on it, my hand ones have sometimes been caused by using scissors or some other *trauma* no 

thanks Harry and 5... icing it does seem to help with the immediate burning pain (although I was at the park with my dog when it happened on my wrist yesterday so I had no ice hmm)

I figured it was vascular...I sure dont want my gut veins to ever do it wink



-- Edited by Observer on Tuesday 16th of July 2019 05:22:36 AM

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Observer wrote:

I have a weird thing that happens and am wondering if anyone else gets these..I get little areas of an extremely swollen vein usually in my fingers and/or feet that hurt like stink for about 20-30 minutes, then turn into a bruise. Ive had them come and go for years (pretreatment as well so not caused by DAAs, more likely cirrhosis related) 

Ihave showed them to all levels of Drs,from family doc to liver man and no one has been able to (or inclined to) explain them.

I got one on my inner wrist today...dogs leash was around wrist ..he pulled sharp/hardish but no harder then everyday... my vein swelled up to double size and burned  for over an hour...my hand was sensitive..now I have a sore bruise the whole inner wrist from one side to the other and my vein is still slightly enlarged.no


 Hey Observer, I get those. Incredibly painful then intense itching followed by bruising. It's very random and the slightest thing will trigger an attack, once I was removing a ring and yeioOOOWwie. I pressed the nozzle on the hose into my palm and it triggered one you could sorta see the vein turning in my hand. I found cold water or ice cube lessens the immediate attack and lessens the itching to.

It's called Achenbach syndrome but thus far they say they don't know what causes it and that it isn't know to be dangerous or a foreteller of some other weird health thing...yet. I had it before treatment rather rarely though it seems I have had about three attacks since completing Tx.

http://www.healthcaretip.com/2017/05/Achenbach-syndrome-Pictures-Symptoms-Causes-Treatmet.html

 

BB, Iris



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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 naďve....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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Yep I agree !! This cold weather here arm is bit much hard to believe it will be so hot soon..look after yourself.

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my veins react when i smack into something... the ortho says some ppl are just like that 

blankstare

the swelling goes down with ice and sometimes leaves a bruise.



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Observer, that's a strange one I guess you have tried a cold or hot pack on it sometimes can give you bit of relief,good luck with it .

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I have a weird thing that happens and am wondering if anyone else gets these..I get little areas of an extremely swollen vein usually in my fingers and/or feet that hurt like stink for about 20-30 minutes, then turn into a bruise. Ive had them come and go for years (pretreatment as well so not caused by DAAs, more likely cirrhosis related) 

Ihave showed them to all levels of Drs,from family doc to liver man and no one has been able to (or inclined to) explain them.

I got one on my inner wrist today...dogs leash was around wrist ..he pulled sharp/hardish but no harder then everyday... my vein swelled up to double size and burned  for over an hour...my hand was sensitive..now I have a sore bruise the whole inner wrist from one side to the other and my vein is still slightly enlarged.no



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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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Iris,hope your numbness is improving in feet ,IV been waiting to hear from neurogist specialist finally got letter ,they can fit me in 3 MTHS time ,( great ) even when see him dont know what he can do,my local Dr has left, now I have a new Dr looks about 20yrs old and knows very little about DAA s or nerve damage ,does anybody else get like body jerks where arms or legs jerk especially when relaxing or about to doze off?? I had one other night just about fell out of bed and my knee is now swollen from leg jerking ,told my Dr he had no idea why,just said mention it to neurologist when I finally see him,wish Gilead would let people who may be getting side effects poste treatment maybe some kind of explanation why some of these wierd things are happening and will they go away or get worse, I had so much more energy and no numbness before Epclusa tx,I'm hoping it goes away but it's been about 7mths now, pre treatment liver people used to ring me,but they haven't made contact in MTHS ,Idont know about other places but no one seems to have any answers here .

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Hey lam, 

What a lot of ka-fuffle trying to get all tested out, but ... you are doing a fine job at it! I am glad you have the where-for-all and the knowledgeable thorough stick-withed-ness to exhaust the avenues you should be, to get to the bottom of things.

Rule out stuff, that seems to be the way to go.

I am glad your cardiac and vessel status looks OK. I am glad you were able to get that testing done.

Nobody takes care of number one better than number one - you are doing a good job.  : ) 

 

5,

I am sorry for your 2 week delay, but you are right, sleep deprived was no way to present yourself to your doc appoint. Thnak goodness all is relatively quiet on the GB front for you for the moment?, i hope so anyway. I too wonder if a stone has moved or left home or is just giving you the silent treatment, either way, here is hoping for a forever well-behaved GB!  : )

 

Iris, 

Do we have 2 left feet! hee hee, (you said) ... " My left toes are in and out of numbness, some days worst than others " ...

- Me too, my "pedal" numbness affects my left foot, bottom of, (and weirdo icy cold shivery sensations down my leg!), it varies a fair bit. Between you and me and Harry and Obs and a bunch of us here we got some numby stuff going on, but, there can be some very common good reasons for this shat we have to experience, put up with and recover from! I cannot at all blame my neuro symptoms on Gilead's DAA cure of me.  : ) 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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Thanks Cheddy, every time I have to see a new specialist I spend half a day getting approval from my HMO and scheduling tests. All the work is done I have the CT scan scheduled next week and see the pulmonologist in two weeks so should have answers then. Thank God I am retired and have time to do all the running around to get the ball rolling. Have a safe and happy 4th all!



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Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.



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Wow, Lam.  They're sure covering the tests.  I never did see a pulmonary doc.  My GP has been able to treat me.

That's some very good news regarding your heart.  You got an A on your tests.  

I'm eager to hear the next findings

 



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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 had to reschedule with the GB Doc, i didn't get any sleep and couldn't see driving over there in that condition. They were real good about it and i go in 2 weeks with a little bit later appt.

i may call tomorrow to see if i can get it on a day that i don't have to work the nite before.

at least my GB is cooperating with me these days, bu i still want the evaluation in case it does decide to act up.

ok, chores and errands now after i finally slept about 5 hours after i called the docs.

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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Cheddy wrote:

Lam,

Somewhere in my adult life I was diagnosed with Exercise Induced Asthma.  No allergies, but sensitive bronchia.  Be sure to cover that possibility too. My shortness of breath is treated with inhalers - one for maintenance and one for emergencies. Just guessing.

I'm eager to hear what you find out.  I'm glad you din't need a stent, but as Tig says, it's one of the better/easier heart issues to deal with.

Please keep up posted.

 


 

Hi Cheddy,

Good call! I saw my cardiologist for a follow up today and he says no way is my shortness of breath related to my heart but must be my lungs instead. My ejection fraction is normal on echocardiogram and my coronary arteries are good, no blockage.  He set me up for a CT scan of my lungs and a consult with a pulmonologist. Finally getting closer to an answer after two months of waiting for tests to be approved by Medicare. He also ruled out my F3 status as a possible cause of dyspnea. No stents needed is great news, they are routine now but more meds are required and there is the increased chance of a stroke.



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Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.

Tig


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And you, my Sister! Spelling was the only class I excelled in, ha, ha! That and welding wink  Oh and partying...



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Tig

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

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You're right Tig.  I was being lazy.

Wellness wishes to yooo!

 

 



-- Edited by Cheddy on Tuesday 2nd of July 2019 04:03:22 PM

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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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Harry wrote:

Hi Lamassu,why are these problems happening,?Think it's about time gilliard maybe explained a few things regarding poste treatment side effects breathlessnes  especially with people over 50yrs old.


Hi Harry,

There is no indication that my shortness of breath is a post treatment side effect of Epclusa. I finished Epclusa over a year ago. I see my hepatologist for a one year post treatment Fibroscan and consult this month and will get his opinion on whether the dyspnea is in any way related to my liver function.



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Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.

Tig


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Tig

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

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Lam,

Somewhere in my adult life I was diagnosed with Exercise Induced Asthma.  No allergies, but sensitive bronchia.  Be sure to cover that possibility too. My shortness of breath is treated with inhalers - one for maintenance and one for emergencies. Just guessing.

I'm eager to hear what you find out.  I'm glad you din't need a stent, but as Tig says, it's one of the better/easier heart issues to deal with.

Please keep up posted.

 

Harry, 

Yes, it's confusing to discern what is treatment related and what is not.  I've heard more complaints from Harvoni users, but I don't know the facts or the causes.  Perhaps Gilliad has looked into it and maybe part of why treatment options keep changing. It's looking like the new treatments are more trouble free, even long term. I'm sure sorry to hear that you are still having these problems.

 

Canuck,

OMG!! You need a break!!!

 



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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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Also neuropathy and numbness I never had these symptoms pre treatment if gilliard could just explain,after all there the experts.



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Hi Lamassu,why are these problems happening,?Think it's about time gilliard maybe explained a few things regarding poste treatment side effects breathlessnes  especially with people over 50yrs old.



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No allergies non-smoker. Everything was fine until suddenly two months ago I started having shortness of breath on exertion. I'll ask my cardiologist if he is sure this problem is heart related or if I should see a pulmonologist.



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Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.

Tig


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Good news, Lam! Better they didn't find any pathology and no extra parts added to your pumper. If something had to be done, a stent is far easier than a bypass, and then another. They seem to come in two's and three's. Might be a good idea, after the Cardiologist visit, to see a Pulmonologist. Could be some underlying issues there, that aren't allowing you to ventilate properly. Have you ever smoked? My Dad smoked for 40 years and quit around 1980. It wasn't until the last 10 years of his life did he start having shortness of breath occasionally. They discovered he was developing emphysema. Environmental issues can sometimes be the culprit, too. I know you, you'll find out and get things right!



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

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lam, i'm glad to hear your procedure was easier than you imagined.....now to get the rest of this addressed.

do you have allergies?



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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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Thanks everyone for the kind words.

I just got back from my left heart cath. They have improved the procedure, there is a new way of closing the femoral puncture that only requires you to lay flat for 2 hours rather than 6 for a clot to form, called Suture Mediated Closure using Perclose ProGlide.

The cath lab I went to looks like something you would see on Star Trek Enterprise. All white and very high tech. Took a half hour. Good news is I have no coronary artery blockages, no need for stents. Bad news is the interventional cardiologist can't explain my shortness of breath. I have an appointment with my regular cardiologist tomorrow to explore next steps. At least I don't have a stent to worry about, that means more drugs to take and increased risk of stroke. To be continued ...



-- Edited by lamassu on Monday 1st of July 2019 04:07:45 PM

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Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.



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Geez you guys.  I get swamped for a few days and look all of these health updates.  So much going on.  When my current guests leave, I have a lot of questions about what's going on.  The one I know best is fatigue, seems to go with sleep issues.  I'm sooo sorry so many of us are in serious discomfort. We came here to get better, and we did, but still we stumble of the other landmines.  More later.  Please find your happy places where you can and take time for your own comforts.  

xoxo

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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Hey, will be sending you good energy Lammasu!!! hope all goes swiftly and with the best possible outcome! I was in cath lab in 2005, and it was pretty neat watching the procedure on the monitor. I didn't have a stint though, it was a radio ablation for an electrical haywire.

 

@5, I really glad to hear that you and hubs are feeling some improvements, as I am at about 9 months post and really ready and waiting for this too. Oh and thanks for the reminder on the magnet therapy :) I'm going to go dig my bracelet out and give it a go.

@Harry I've been trying to find info on the nerve disruptions and any correlation to Harvoni and so far nadda. My left toes are in and out of numbness, some days worst than others, it's really my back right now, just doesn't seem to have the strength to hold me up, and it's painful as ****!

Stay cool everyone, seems tolerating the heat is now the new challenge

html5[video=https://giphy.com/gifs/FzpNPTpiDpsmk/html5]

https://giphy.com/gifs/FzpNPTpiDpsmk/html5

<iframe src="https://giphy.com/embed/FzpNPTpiDpsmk" width="480" height="480" frameBorder="0" class="giphy-embed" allowFullScreen></iframe><p><a href="https://giphy.com/gifs/design-blog-FzpNPTpiDpsmk">via GIPHY</a></p>

LoL ok...I give up, I can't figure out how to embed a GIF cry

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 naďve....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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