Hep C Discussion Forum

Tig · Admin

RE: Epclusa treatment

Observer · Guru

Im also glad youre both on antibiotics and getting over those nasty coughs.

Tig, have you heard much about prebiotics?

We all have such individualized bacterias in our guts the prebiotics assist our body to produce them (rather than get them from a capsule, which may or may not contain the ones we individually need)

Its basically just pickled veg (kimchi) and ideally we should eat a different colour of home pickled veg each day.

my sister has been learning all about it and we were just talking about it today.

Ive always taken acidophilus when on antibiotics but havent always felt it improved my digestive reaction and this prebiotic information might be why...

im going to try it (although Im not on antibiotics ) my digestion could usually use help. smile

5-1-18 · Guru

so glad you two are on the antibios and heading toward wellness

Tig · Admin

Hey Harry,

I’m glad you got some help. I had to do the same thing, it wasn’t improving like I hoped it would. You won’t have any problems with your VL as a result. Yogurt and probiotics will help keep your gut bacteria replenished while on AB’s. That’s what I’m using, too. Just get healthy and stay on course! Get well soon!

Harry · Senior Member

Wishing everybody out there a peaceful time ,and to have great happy healthy new year ,very grateful for all info.oh by the way iv only about 7weeks to wait for vl results fingers crossed. My cough didnt really improve much so my dr gave me anti biotics 3days ago seem to b clearing chest up hopefully not coughing as much ,i rang liver nurse to check if ok for me to take anti biotics she said all ok..i dont like takeing them but dont need chest infection over xmas..does any body know if they might interfere with my new VL results or my immune system seeing iv been on epclusa tx anti virals,any thoughts be appreciated iv been eating yoghurt try to keep some bacteria happening in stomach i hope. Have noticed anti biotics can increase constipation a bit.anyway best wishes all...

Cheddy · Moderator

Good looking ALT and AST, Harry. Yeah, we all worry while we are waiting for results. I think all of the side effects encourage that, too. However, with the power of these new DAAs, you can take the high road on your thinking. It's better up there.

Glad you got some relief from the heat.

Hoodietree · Senior Member

Yay Harry!! Sounds like youre feeling a little better and that blasted heat wave has subsided. That is AWESOME!

And as Canuck says your ALT and AST are normal! WOOHOO!! Im doing a happy dance for you. Now we wait for a while and then when your good news comes in we will all celebrate!

Super happy for you Harry and glad youre feeling better. Hugs!

Harry · Senior Member

Hi Canuck ,it had to be 3...

Canuck · Guru

Harry,

I alluded to this before, but I don't know if you caught my drift ... I had (prior) been trying to tell you WHY it was a VERY, VERY good thing that your doc did that ALT and AST at EOT - being that you got a VERY GOOD NORMAL ALT/AST result, THAT normal ALT is EXTREMELY meaningful (even without being able to have the test to know that your VL is undetected at this point), I would bet my bottom dollar (many times over) that when your ALT first crashed down to normal, your VL also plummeted down to be undetectable. With these new powerful DAA's, one's VL number carries much less consequence as far as getting cured nowadays, just look at the cure rates that are happening now, up in the stupendously-high 95% mark!! One consideration still seems to be, that if your VL is over 6 million you might not be offered a short 8 week course of Harvoni, it's in the books (for now) that if your VL is over 6 million then you would get 12 weeks of Harvoni.

It should be very soothing and reassuring for you to know your EOT ALT and AST's are normal, that means you have had the outcome the drugs were intended for - right now your liver is telling us it is NOT in an inflamed/active state! VERY, VERY good news! Just too bad they make you wait until 12 weeks after EOT for your VL, but, that's just the way it is, you'll have to be patient (yes, again and always it seems, eh!?). Actually we ALL have to wait for the VL test that happens at EOT+12 weeks (your SVR12) as that will deem your "official" cure, although any of us who have been lucky enough to witness the crashing of our VL's and ALT during treatment get to have happy news earlier than other folk. "Technically" we are ALL required to wait until SVR12 to claim our "official" victory.

Your doc selected a very good and powerful drug therapy for you, you were lucky to get epclusa.

What GT are you! C.

Harry · Senior Member

Hi Hoodietree.thanks for your reply not only do i have epclusa dramas really hope it works on my very hi VL over 20 mill my ast alt s showed up fine on last LFT but wwont know about VL till feb. always waiting shud be use to it ,went to see my liver nurse on fri but guess what.......they were at there xmas party..ha ha weathers nice atm about 29 or 85 i think not looking foreward to hot weather when it comes ,im in new south wales..take care Hoodie hope your symptoms start to improve ,

Harry · Senior Member

Thanks Canuck ,yep i use a puffer think its my best friend lol getting a few nice days atm about 28 deg wish it would stay that way .the rash must have been from the heat maybe becourse epclusa been having a battle with my liver its fadeing a bit now one of the books i have tells you to stay out of heat !! Im really thankful that my alt ast are in normal range finally wont know about VL for 2 mths im pretty worried about that seeing my VL was so high !have you heard of many hi VL s being cured ? If for some reason it doesnt work thats the way it goes , i just dont want it not to work and have complications ect that i didnt have before i started tx ,this waiting around drives me nuts.thanks for your reply hard to get any info down here and yes heat an fire smoke doesnt do much for lungs.lol

Harry · Senior Member

Hi Canuck ,no cant seem to shake this cough think ive just too many dramas going on with health will just wait it out fingers crossed.see my dr tomorro she doesnt know anything about epclusa tx. doesnt really help much..thanx

Cheddy · Moderator

Harry, I was looking at the weather map in Australia. Ouch! Which area are you in? Is there any way you can get that window air conditioner?

Canuck · Guru

How is that "chesty cough" going (that you picked up since your A/C motel visit)? That was a really unkind, unwanted extra to add to your regular chronic chest condition. Is it getting worse, better, or is it the same, do you think it is letting up or going to let up soon? I hope so. Do you use "puffers"?

Are you still in midst of that heat spell, at 103!

Do you think you will ever get an A/C, of any kind (vented portable or window hung) for your abode?

Try to keep that face rash out of the sun if you can, is the rash getting any worse?

Do you think the "water pills" have helped your swollen feet, or helped in any way? C.

Harry · Senior Member

Thanks Shemp sounds like the same nurse lol,sometimes i think they are told to say "never heard of that before "any way mate hang in there ,im a mth past treatment still feel exhausted your right every one different.

Shemp · Senior Member

Hi Harry,sounds like you're getting the standard answers from your doc.Abbvie the makers of Mavyret gave me a nurse advocate.She calls me about every 2 weeks to ask how I'm doing.When I tell he about my side effect,she tells me she never heard of those before but she will make a note.I've had a bunch that are not listed on the prescribing info.Everyone is different,Hang in there Harry.You're on your way to hep c free.

Harry · Senior Member

Thanks Cheddy

Harry · Senior Member

Thanks 5 ,Lam Hood Canuck everybody sorry bout my typing im a bit of a dinasaur ,when i was a kid no calculaters allowed in exams they were considered a computer.lol .thanks everyone ,great talking to people in similar situation.

lamassu · Senior Member

Harry if hanging a window mount A/C is not an option there are good single room A/C units that are portable and just vent through the window using a hose. I bought one once at Home Depot for about $350. Here is a link to what a similar unit looks like on Amazon.

5-1-18 · Guru

harry don't every worry about voicing your concerns here; together we can get thru this.

Harry · Senior Member

Thanks Canook ,i really appreciate yours and everybody elses advice ,unfortunatley i must sound like an old whinger ,i looked in mirror today usually avoid mirrors but i seem to have a birthmark type skin rash on my forehead ,that doest seem to be fadeing atm i rang liver clinic said never heard of skin problems ..sorry for my constant whinging thanks all.

Canuck · Guru

It is unfortunate Harry, how it has been going for you and how you are feeling. I just don't what else we can add to what your doc thinks. I am glad you DID go to the doc tho.

That was a good thought, in theory, to seek some relief at an A/C'd motel, but, it did not seem to work out well in the end.

One thing that comes to mind, is that your child and grandchild will understand that you have been under the weather, if you are sick when they come to visit, they will understand (just like if they were sick, you would understand). Unless they want to cancel coming over, then during their visit they will just have to accept that you will not be in tiptop shape, you could forewarn them of this.

Another thing that comes to mind, is that in locales that have hot spells (places having natural weather events/weather disasters, smoke from fires, things like that), seniors (often being much more easily negatively affected/impacted by these things), municipalities will often try to watch out for seniors or offer some kind of respite during things like hot spells.

The powers that be, if they do not have pre-set-up places of respite/help (halls/rec centres/hospitals), they most often will understand and be attentive (to some degree) to seniors who are too hot and present themselves at hospitals, or other such public places (rec centres, halls, libraries) etc. A/C'd places (cooling stations) and such, of some form should be available somewhere for seniors, especially those with chronic health conditions, they should be offered some kinds of cooling places/respite at hospitals/similar public places if a senior were to show up there.

In a pinch, if there are more hard-to-tolerate heat waves to come for you, please look for these kind of places, if you cannot easily cool any other way. If you go to a hospital when you are too hot, and they deem you have gotten yourself into a complicated "bad way" with your chronic health conditions and all, from the added heat, a hospital might even admit you to stay there.

Can you not buy one window-type A/C'ing unit, and put it in one room of your abode? And spend more time in that cooler room during these hot spells? C.

Harry · Senior Member

Thanks for all the concern everybody really means a lot atm . Take care.

Hoodietree · Senior Member

Oh Harry Im sorry you got sick with a cold. Thats sucks after all youve been through. Im praying for you and hope you can relax a little and try to take it easy. Please hang in there a little while longer. I think once the cold symptoms abate you will notice a big improvement. Are you getting enough sleep and proper nutrition? Hang in there sweetie.

5-1-18 · Guru

harry i'm so sorry that you are having such a rough time.

i had terrible troubles after i stopped the harvoni but now i'm cured [UND] ;and getting better from the troubles.

no cure is easy but this one was easier than some

Cheddy · Moderator

Argh - air conditioning. It dries me out and my lungs don't appreciate it. Drying out might be good in your case. What a good idea it was to go somewhere where you could cool down. It's just bad that it wasn't clean.

Follow your doctor's advice and wait out the cold symptoms using OTC treatments or home remedies.

I suggest again, cold wet towel and sheets. Keep some ice water in a cooler to keep it up.

When is it supposed to cool down there? You're already in recovery and this is taxing. Hang in there, Harry. Sometimes that"s all we can do. hmm

Harry · Senior Member

Hi everybody ,dont know if u can advise me ,we are having heatwaves here in Aust ,think it was monday so dam hot 103 ,i felt completly wiped out plus nausea ect. so tues we decided to book into a motel with air con just to try an get energy levels up ,we noticed bit of a strange odour in motel room,any way next morning after having air con going all night ,i woke up to.the worse chest cold ever ,went to dr an tolde to try keeping fluids up no anti biotics needed temp bl pres ect ok ,does anybody know if this is iust part of poste tx after epclusa combined with air con not being clean ?im starting to freak out as my son an grandaughter are spending few days with us over xmas i really want to feel ok for them an not freak them out hopefully this chesty cough will only last few days.any ideas appreciated thanks all...

Canuck · Guru

Harry,

I'm so glad you have finished your hep c treatment, and soon, after a period of recovery from your treatment, and a period of time for your body to re-adjust to it's new cured hepc-free state, you will start to note some overall improvements by not having the hepc anymore.

No matter how this difficult this period was for you, i think you ARE going to end up feeling better and very grateful that you got rid of that hepc. It will all be worth it, what you have gone through.

Good you are asking your other docs for assistance with the breathing problems and the pedal edema problems, keep trying to resolve these as best you can, with them.

Keep on it for your constipation tendency as well, that too needs to be watched and attended to, keep thing open. Constipation will always impact how good or bad you feel, and contribute to bloated feelings. Did you find a regime that keeps you regular?

You are trying all the right things, staying calm, trying to be positive, trying meds for edema, seeing the doc for advice. Stay regular, keep as cool as you can in the bad heat, keep elevating legs, and keep really well hydrated - hydration is such a good thing to do, all these things are ... for everything, from your leg swelling to your breathing to your constipation to the bloating.

You already know you had some very excellent liver labs (from your last set taken, when they showed normal) so, I expect the same at your next EOT+12 week blood draw - I am positive you will see ONLY more good liver labs and a nice SVR12 VL UND!

Just take as good care of yourself as you possibly can until your hep doc calls you back in for your SVR12 bloodwork.

Still no sig. line, but, i estimate, roughly, from your recent EOT, that your SVR12 labs will be around first week of Feb? Rest, coast, recover and treat yourself real good in the interim. Enjoy the kids as well as you are able while they are there for the holidays. You just might start feeling a little break and a little better here and there. C.

Harry · Senior Member

Thanks 5-1-18 .im into coconut water plus frutesmide 20 mg iv gotta learn to b patient. thanks

Harry · Senior Member

Thanks Tig .i know im stressing too much thanks..

Tig · Admin

Harry,

If your AST and ALT are in normal ranges, there is zero possibility of liver failure. They would be the first to go in a situation like that, not to mention you’d be terribly ill. With normal LFT’s, it’s not your liver!

5-1-18 · Guru

have you cut back on wheat or bloaty foods? just for now.

Harry · Senior Member

Thanks for all the info ,been few weeks since finished tx feel fine !!just this stupid edema puffy stomach ect i think my dr shud have me on 40mg not 20mg fusemide im sure hot weather makes it worse plus pain meds dont help .just waiting till i can get results back.i seem to be having bit of trouble sending any replies probley just me !anyway hope all happy an feeling ok. I read a thing on net saying that edema on abdomen sign of liver failure i really hope there not right as my lft test showed my alt ast were in normal range first time in yrs.take care all

5-1-18 · Guru

harry, in this case you might be able to break the water pill down to a fourth to get some relief without strong sides.

thats what i did

SeeTheLight · Senior Member

Great you have finished treatment Harry, SVR12 will be here before you know it. We are so lucky to have been provided with this wonderful drug, simply and cheaply. Here's hoping that in time some of your other medical woes will ease, once your liver begins to heal. It has had such a workload with this darn virus constantly attacking it for so many years.

All the best with the edema. Hope the elevation and medication help. Fluid retention is annoying, my dad also suffered. The pills do mean you need to be close to the toilet, but dad decided it was a small price to pay as he didn't want to start retaining fluid around the heart and lungs as well as his feet.

Harry · Senior Member

Thanks Cheddy ,really good to read your message ,its so hard to get any info here in Aust .I think Grand Canyon sounds great ,great to read your advice now its the waiting game 12 weeks .aaah..thanks.

Harry · Senior Member

Thanks so much Tig so good to here about that med being ok ,im just sitting here atm legs elevated wondering if i shud take one there only 20 mg so shud be ok,i think its the hot weather making it worse,its not evan that bad swelling just annoying.thanks again stay well take care.

Harry · Senior Member

Thanks Hoodietree ,i really appreciate your thoughts ,it really makes a difference knowing that somebody really cares im in Australia the weather here is just warming up ,i hope u are safe from thr fires over there , please stay safe suppose to be bad year for fires also ,just waiting now for the 12 week VL test.thanx again...

Hoodietree · Senior Member

Wow Harry! Youre all done with treatment? And you are undetected? That is such terrific news! Im so happy for you

Congratulations, way to go. Good job hanging in there and getting it DONE. Now the healing can occur. You have to be gentle with yourself while you are healing and check in here often please so we can celebrate your progress with you and lift your spirits ever so slightly in tough times.

Tig · Admin

Hi Harry,

Sorry you had a rough night. I’m glad you got to see your doctor the next day. Furosemide, or Lasix (brand name) is a very good diuretic. My father has congestive heart failure and was prescribed that to keep him from developing fluid around his heart and lungs. It also controls the edema (swelling) in his feet and ankles, very well. It doesn’t really have many pitfalls or side effects, except it will make you urinate more than usual. Now that my father has been on it for a month, the trips to the bathroom have really decreased and he is doing much better. I think it might be well worth trying. Just my opinion...

Cheddy · Moderator

I feel that way after I read about almost any drug.

I suggest you lay low on the salt. On the other hand, if you are drinking as much water as I hope you are, you may want to add small amounts of electrolytes. Somewhere in there is your own balance.

When I was in the Grand Canyon, I got puffier by the day. My river guide said he's always puffy and the end of a trip, and that the body just wants to hang onto water in prolonged dehydrating situations. Mind you, that's the advice of a river guide, but he's also a paramedic and has had 27 years extensive experience. I hope you are not hanging on to more water in your lung

Things will change as your body readjusts.

Harry · Senior Member

Hi everybody had rough night yesterday coughing breathing ect glad when morning came around ,saw my dr thismorning about puffy feet ankles she prescibed me pills called fusemide for edema ,i looked it up and didnt really like the sound of them so im just doing the elevating thing as its probley like a side effect of the epclusa as iv been told .i thought i would ring the liver clinic just to tell them id finished the epclusa but guess what my liver nurse has gone on holidays for 6 weeks !i thought maybe she would have rang me to see how all was going before she went away oh well..cheers everyone.

Canuck · Guru

Congrats harry,

Finally, all done your 12 weeks of epclusa!

So glad you are finished the pills now.

Great you got those labs done, thus giving you that "very telling" positive feedback (that your ALT/AST are now nice and low and within limits).

Also, very good you went to doc to check up on the pedal edema, or any of your conditions, and got those kidney lab tests done as well. We can assume if your doc found anything significantly out of wack in your kidney tests or chol levels he would discuss these results further with you. You can ask him about your kidney function and chol levels next time you see him, but until then, good that you present yourself to the doc for any new health developments, or any exacerbation of your chronic health things.

You are doing all the right things. Good for you. EOT and no more of those pills is a very nice thing. smile C.

Harry · Senior Member

Thanks Cheddy ,nice cool day today such a relief ,thanks for advice i will be taking it easy in the heat ,just have to wait 12 weeks see what VL is doing ,seems like ages but time seems to go fast i hope. Take care.

Cheddy · Moderator

Harry,

You did it! What a challenge. You will be stronger and healthier for having done it. I know it hasn't been easy. We have all had experience with that, but when it's happening to you, it's something mightily invasive.

I'm glad you are continuing with your doctor regarding symptoms. It's easy to think it's all HCV and treatment (and it may be) but it's good to solve your problems whenever you can.

You probably know more about beating the heat than I do, but I remember my grandmother used to put wet sheets on us to bring the heat down. Try a cold wet towel over you feet and ankles when you elevate your feet. Maybe you could keep a cooer of ice water nearby to refresh the towel.

Just a thought.

Mostly I wanted to congratulate you on finishing treatment. Now the real healing can begin.

Best to you, Harry.

Cheddy

Harry · Senior Member

Thanx Tig an 5-1-18 i appreciate your kind thoughts ,its 2am here in aust hope you are going ok !!thanx again. mite try and get few zzz

5-1-18 · Guru

congrats to you Harrry!!

things in your bod will align to more health by and by.

and yep, keep the feet up when you can

Tig · Admin

Hey Harry,

Congratulations on finishing treatment! That’s good news on your ALT and AST. It’s a clear indication of healing going on. Stay in touch and let us know how you progress. Week +12 tests will be exciting!

Harry · Senior Member

Thanks everyone for advice finished pills last week.my feet got bit puffy so my dr had blood tezt done to check kidneys.got results back alt an ast had halved now in normal range. Just got to wait 12 weeks now for VL results fingers crossed...also iv always had low cholestral 2.4 now its 5.0 dont know if good or bad.

Canuck · Guru

Many of us will understand what you have been going through, these ups and downs (both physically and psychologically) not easy stuff handling what life throws at us. We can only do the best we can do with what we got, with what we get, and with what we have been given. You were very lucky to have been able to be treated with epclusa versus some of the older harder-to-take drugs - I am very glad for you that you were able to get epclusa - my long term hope for you is that over some time (time for recovery from getting yourself all cured up from the hepc), that you may feel some physical improvements in the near future, i hope you do not have to wait too long before you do notice something is starting to improve for you.

For instance (like me and my puffy ankles) that pedal edema problem for me all but went away. Maybe this might occur for you too, ya never know! Now, you and I may have had some very different reasons for why we had pedal edema, but still, just to show you that getting cured of this nasty hepc should help you feel better (in still to be determined ways). Feeling depressed and unwell in MANY ways can very often be blamed on having chronic hep c, and when it has been cured, your body now has a MUCH better opportunity to perform better.

Wait and see.

You have done really well to have hung in there with little support and tough your treatment time out - you should be feeling quite proud of yourself for that!

Keep drinking lots of water, and try to keep cool. Elevate those feet periodically through the day (they say for swollen feet, when you elevate them, your feet should be at a height that is higher than the level of your heart! Take it easy with the work in the heat, and if you happen to be bruising right now, try to leave some of these harder work physical things alone for a bit if possible. Ask you doc about the bruising, if it continues, he probably has/is already monitoring your blood clotting performances (tests called INR's, for one).

If you had a list of lab results, we could help you go over them and decipher them a bit, if you wanted. Later, C.

Harry, lay just like this good lookin gal is doing.

Image result for elevate and cool feet

Except ... turn on your telly, and watch a fav show while you've got those feet up, or grab a good book and read a spell, and have a nice tall cool drink of H2O while your doing it.

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