Harry,

Keep drinking lots of water! (to help those headaches, and especially because of the increase in heat you are experiencing now) - lots of water is good for everything. Dehydration (even slight) can compound and complicate many things, like making chronic conditions worse, good hydration helps people with COPD with keeping their lung secretions from being too thick and makes breathing/coughing easier, hydration helps constipation.

That would be good, if you can find those old VL's and LFT's from pre-treatment (and ANY blood results they may have taken on you while you were on-treatment).  

LFT's, and all your labs are useful and telling info to have, for comparative purposes. They can give you a very good idea if you have had a good response to the DAA's, so, if you have those labs or find them, please do post them. 

I guess it is possible your hep doc did not take ANY labs on you through treatment, but i would be surprised if he did not, in my book he should have taken at least one set of LFT's (at minimum) during your treatment (and maybe likely more than just LFT's), and often the first set of LFT's and other labs are done at about week 4 of treatment.

If you have received NO labs whatsoever from your hep doc through treatment, and you point this out to your hep doc, and he still refuses to take any on you (even just LFT's) even though you have pointed this out to him (that you have had NO labs through treatment) .... then go to your GP and ask him to give you a lab requisition to at least check on your LFT's. Your GP should be able to assist you with checking your LFT's even if your hep doc is not.

You mentioned, from memory I guess, that you thought your VL was high (pre-treatment) good info to know, and that maybe you thought this was because you had HCV for so many years? - just to let you know, high or low VL's have less to do with how long you have had HCV and more to do with how your body is always trying to fight the infection down on it's own when you are carrying an untreated hep infection. Know that the VL does and can fluctuate up and down all by itself the whole time one has HCV, it can be high or low, or, some people do tend to remain fairly constant at the same VL level every time their VL is tested while they are untreated. One just never knows when a VL may fluctuate up or down when you are untreated. VL fluctuation was something I had never really understood when i first found out i had HCV.

Try to keep cool. C.

Harry, I do remember the heat knocking me out, too.  In fact, it still does. I can't imagine that it helps with your breathing, either.

I'm so glad you are hanging in there.  No, this treatment is not going to make you worse.

As for the stigma. It's too ridiculous to even listen too.  Everybody has a history.  What do they care how you got it, really. They need to stick to the business of healthcare. 

We're counting down with you, Harry.

Home Made Ginger Ale: ... GOOD ... GOOD!

Ingredients:

1 cup peeled, finely chopped ginger
2 cups purified water
raw honey (optional) - (Less is better here, Fructose in Honey is not as bad as High Fructose but still not good in large quanties)
sparkling water
1 lemon, juiced

Harry,

Hang in there.This journey is a little different for everyone.I made the same mistake as you.About 4 weeks into TX I decided to go work in 90 + degree heat.It knocked me down for days.It also showed me my limitations.10 more days Harry and you'll be free of this beast you've been dragging around for decades. Stay Strong.

Harry,  

I refer to my specialist as Dr. Liver..... Its like he thinks Im just a carrying case for a liver... I saw him for 5 -10 minutes then got the team from then on....

Like 5 and her hubby, I relied on my family Dr for my real life stuff...

Whoever told you the side last for years is probably mixing their info with the interferon days... these DAAs that we are getting do not cause years of sides...

I was pretty much dying...I was allergic to everything and swollen and weepy and in pain and puking and emotional and couldnt function at all...the treatment was hell for me because of the ribivaron...but I feel great now.  And you will too

Dear Harry please hang in there and don't stop taking your pills!! It can definitely feel overwhelming especially if you over exert yourself, I think I have been doing that as well and I'm going to return to taking it easy on myself for a little while. I hope you will please do the same? Please take it easy on yourself!

Please don't stop taking your pills.  I love the suggestion of reading through these messages again when you start to feel down. You can even post a new thread If you start to feel depressed again or physically ill, and we will respond quickly I promise! I don't know if you saw the thread that I created yesterday but I got so much support and caring that it made me cry. The people here are so wonderful and they will support you no matter what and they know what they're talking about because they have been through it themselves!!

harry, it seems these meds work so well that the liver docs just hand them out and don't worry about side effects.

they told my hubs to go to emergency room if he was having problems. that's when we decided to go to our family doctor for sides and labs.

even tho it feels bad, the tx is only 8-16 weeks long compared to the old days of  up to 18months.

becos of this i think the liver docs have become lax in the "during treatment" care. 

just my opinion.

if it weren't for our fam doc both of us would have lost it.

hang in there, you are def on the road to cured and feeling better soon after

Harry,

You've gotten some very good advice here.  Don't you wish your medical team would do the same.  

We've all know here how grueling this can be and with your other issues acting up it's got to be really tough.  I can't tell you how depressed I was on an earlier treatment than the current options.  The idea of it continuing that way was horrifying.  I mean, I was sooo weak, and sad, and lonely, and unreasonably angry.  At some points, minutes and seconds seem like twisted weeks. I didn't like myself much and the future seemed truly bleak.

But it wan't true.  Instead, I became my old self and since then, an even better self.  It's hard to believe what a toll just having HepC takes.  I thought I felt okay before, then horrible during treatment.  Now I'm doing so well.  

Here's what I want you to do in addition to all of the excellent advice below. Every very time you fall into the pit of despair, read these messages over and over. They come from people who have been on this road before.  Trust them.  Put your head down and put one foot in front of the other. Find a single momentary pleasure.  

And, Harry,  TAKE YOUR PILLS!!!

Most sincerely,

Cheddy

Oh Harry, please hang in there, the finish line is so very close. EOT and then the wonderful news you can expect to hear at SVR 12 will make it all worthwhile. It is just a short blink in time in the big picture when you think about how long you have carried this disease. To finally have the chance to be free of this plague is oh so close to you. I so want you to achieve it. Wont it be marvelous when such a huge health issue as the Hep is no longer a huge focal point. You can concentrate more on your other health problems. Being Hep Free will not make all your problems go away, but it will sure be a big weight off your shoulders. By reading from those who went before us here, we read so many inspiring stories from so many members who have had improvement with other health issues, once their liver can finally relax a little. Try to relax and ride the train. Beating yourself up for your past sins will achieve nothing. I can tell you are very depressed and not in a good place right now. Our Hep treatment peeps only focus on that. It does sound to me that a lot of your problems are not related to your treatment. With your Emphysema combined with the heat and overdoing it a bit has added to your woes. (but at least you painted the steps so they wont cause you any more problems with your lungs, so that is good) You achieved something positive yesterday. Feel good about that. I have a good friend and my neighbor with Emphysema and I know that their feet will certainly swell in summer without being on them, Just a short walk into the supermarket can wipe my friend out.

You had a big day yesterday, although you are not feeling good, you achieved something. I hope you have a good nights sleep and as others have suggested, please talk to your local doctor. I hope you have one you have a rapport with not just a big clinic where you see whoever.

Sit back and listen to some good music and chill mate.

Stay the course, Harry! You’re almost down to a week, it will go by quickly and the successful completion of treatment will benefit you for a lifetime. 

Sounds like you could use some compassion and understanding from your healthcare team. I believe many of these clinics look at their patients as a file, instead of a person. It’s cookie cutter medicine. That’s where a good family practice doctor that knows you, is often the best source for help. I don’t know what it is with some specialists, they only give you 10-15  minutes to meet, diagnose and treat you. There is barely time to fit in a question. Stick it out and you won’t have to deal with them again, because you’ll be Hep C free!

Harry,

Iris is right - keep cool, keep strong, you are almost done now.

Contrary to stories you hear - any sides you felt from getting your hepc cured WILL go away.

You are far, far better off without this horrid hepc hitchhiker on your back - quite an accomplishment!

You will reap reward for persevering and getting rid of this virus.

You need this virus and the harm it can and has been causing you out of your body and your life, and you are nearly there.

Yes, in Aus they are more and more not doing end of treatment labs on people there. They keep people waiting until EOT+12 weeks for their LFT's and VL.

But, you can still ask your family doc (or any of your other docs - aside from your hep doc) to do some standard LFT's alone on you (skipping the EOT VL) - if those EOT LFT results are nice and normal you will find that reassuring and rewarding to know, and this info may make you feel  bit better to know and tide you over until your EOT+12 week labs are done and you know those results. (This is why I was asking you if you knew what any of your lab test results were during treatment and/or before treatment so you would have something to compare against.)

I did not feel well at all during treatment, but believe me, it does get better - try to gauge how much energy to expend (especially given the heat and your lung condition) until you have had a good period of recovery from treatment and your body has had a chance to recover from this virus that has been robbing you of some of your health for so long. This i am betting things ARE going to improve for you because you have decided to get rid of this hep c.

I think you have done really, really well under quite trying circumstances - if I were you, I would allow myself to be feeling quite proud of my efforts.

Concentrate on that, being proud of what you are accomplishing, there is now so much more room for your future health improvements - look forward to feeling better as they come. C.

You're almost there! Don't give up.

I would ring different dr.  Perhaps you have something else going on that is not related to treatment.

I feel for you and the heat, I did all my tx during the hottest part of summer and we only have a a small ac for the whole house, (for best results sit in room with ac!, other end of house not so much!) I use like a wet wash cloth around the neck, that helps me bunches. 

10 days, that's less than 2 weeks!

Bb, Iris

Hi Harry,

Good to hear from you again. Nice, only 2 weeks of treatment left to go!  I'm glad you are trying to be out and about. Sorry about the lung ability bothering you. Increasingly, for a few years (prior to treatment) I used to get pedal edema, especially the last year before treatment, no rhyme or reason to it, just happened more and more, nothing really seemed to relieve it, lowering salt intake, massaging my feet, keeping them elevated, exercise ... none of that really seemed to help very much at all. BUT, after I got cured up from my hep c - that edema has almost completely gone away - all of it's own accord! (or maybe in part because of my hepc cure - I will never really know for sure) but this i hope will be the same for you too - that some of your chronic or not so chronic things that you have been putting up with may improve after cure. Many people do notice something change (if not in chronic health conditions then perhaps subtle or quite noticeable things) in how they feel, sleep, digest, etc.

Do you routinely use puffers for your lungs, and have they ever put you on water pills?

I do hope things will improve for you post-cure.

How are you making out with your constipation - have you got things mostly moving again??

Harry, did they do any 4 week blood tests on you (or ANY blood tests during treatment)?? Viral load and liver function tests? What were the results of those blood tests? C.

Harry,

My treatment was at a very busy far away place that did trials, overall we got good care, lots of labs and frequent visits so they could look at us and check up on us, they watched us very closely - but as far as nursing staff and touchy/feely kindnesses and good talks and communications, that part of it was very difficult, frustrating to say the least. I could have really used a more tender, time-consuming attention, and time to talk to those people at length, but that never happened. I had no choice but to take any bad along with the very good that happened, and I was extremely grateful for that place and the care i got, I would have NEVER got my state of the art Vosevi DAA unless i had qualified for that trial - so, all in all, I am still pleased I went to his place despite the communications.

You too, as a GT3 (just like i was), are very lucky to be getting Epclusa (sof/vel), and not even by trial but to get it via the regular system now - such excellent drugs Gilead invented with Epclusa and Vosevi! Perfect for us GT3's.  

It sounds as though you are getting the minimum time and physical attention allotted to you via your hep people throughout treatment - so, you will have to make do, avail yourself on other docs, your primary care doc or family doc (GP's - general practitioners we call them here) for things they may be able to assist you with, when you are not getting the time and attention from your hep people. And do not hesitate to TRY to get extra time and attention from your hep people, by making requests of them for what you think you need. The worst they can do is ignore your requests or say no. So, nothing ventured, nothing gained - you can try to get some more attention from them. With your extra infirmities (lung issues, bowel issues) you warrant extra attention just on a physical level, but on a personal level you deserve more attention - I think we all deserve to feel we are given enough attention by our docs during times like these.

At least you know you can always come here, for whatever help or company we can offer.

I have a question for you - did you not get some blood tests done at about 4 weeks into your treatment?? Can you ask your hep doc what tests were done then and to give you a copy of those results? Also, if you could please share with us any old or recent lab test results you have, from before your treatment started?

It does seem (more in Aus) that they do pre-treatment bloods and some 4 week on-treatment blood tests, and then many docs are making people wait until 12 weeks after end of treatment (EOT) for further blood tests. I think someone here suggested to you that you could still try to ask for an additional (interim) blood  draw to be done at your end of treatment (in addition to your EOT+12 week blood draw). If your hep doc refuses you an EOT draw, you can always ask your GP for same - maybe they will, maybe they won't, and you may well have to wait until EOT+12 weeks for your blood draw then. But ya never know, they might, if you ask - if not a viral load (VL) AND LFT's, they might even just do LFT's for you - any positive feedback at this point would be welcome news and may help you feel better about things until you get your official good news at EOT+12 weeks.

What do you think? C.

Hi Harry,

I was glad to see a post from you today on another thread (about constipation) and it kinda helped answer my earlier queries to you (below) where I was asking what other meds you might be on (aside from the epclusa).

So, with your chronic lung condition I am guessing you might be using some forms of broncodilators to help ease your breathing, and, you had mentioned (elsewhere) about taking something that kills pain - but from your other post of today it is very good to know for sure that you are on methadone x's 4 years, and are now taking "Coloxyl" (or ducosate sodium - similar to "Colace" and it goes by other names as well) and prune juice for your constipation troubles.

I would not be surprised to hear if you had some constipation troubles in the past what with being on methadone for the last 4 years, or just being someone who had HCV, nor would I be surprised if the constipation became worse while additionally on DAA's.

It's very, very good you are trying the Coloxyl (if you have not tried this before) - stool softeners like coloxyl should help constipation (as long as your doc has given you the OK to use it, although it appears there are no contraindications to taking coloxyl while you are on DAA's)  - it is really quite important to correct constipation and try to keep the bowel movements softer and moving more easily/freely. It is also very, very good that you are trying the prune juice as well - and please DO MAKE SURE you are drinking LOTS and lots of water - water intake is critical to help reverse constipation even if you are taking coloxyl. The coloxyl works with and requires the component of ample water to resolve the constipation.

Keep it up, with the regular dosing of WATER, coloxyl, and prune juice, until you get things moving easily again, and then once you are able to get things going with some regularity - don't let up! - keep on and keep it up, with the drinking of LOTS and lots of water, regular maintenance dosing of the coloxyl and prune juice as required.

DO NOT let yourself get dehydrated (by NOT drinking lots and lots of water), worst thing you could do, especially if you are pre-disposed to constipation. You may well be pre-disposed to constipation for many reasons, even being just a little dehydrated can end up being a number 1 reason for constipation, just having HCV, being on methadone, being on DAA's additionally, many reasons (including diet) can all help to make you very constipated.

Good you are trying to undo that constipation, keep trying and DO up the water intake.  

I too was plagued by constipation before and during treatment, and I had to make very concerted efforts to stay ahead of dehydration and constipation. I learned WATER IS VERY IMPORTANT.

So, your doc had you on a short course of steroids?? And (it sounded like you said) that the steroids were for ringing ears?? - are you sure about that? - that the sole reason for the steroids was for ringing ears? Just curious.

I really hope by drinking more water, and relieving the constipation, that this will make these last few weeks a bit easier for you. 

Hoo-ray the end is near - you are nearly done!! C. 

hi harry, it's good to see your thread

we are here to cheer you on and answer what ever questions we can.

you are on the cure, be sure of that.

the cure isn't too comfortable but it's reliable and the side effects will leave at eot as well as other things start feeling better when the little varmit is outta your liver

hang in there, water and pil is our main focus and managing the side effects with rest and your family doctor.

5

I developed a deep cough (agh, forgot to put that on my list) that seemed to go away by the time I was done with treatment...but then I was on Harvoni. Hang in there you will near the finish line before you know it.

BB, Iris

Hi Harry,

Hey, really good you started a thread for yourself in the new members section, so easy for all of us to meet you here to chat with you about things further! : )

Your first 2 months on the epclusa seems not to have been too easy for you, that's too bad, your lung condition certainly does not make anything easier. 

But considering ALL the complaints you have shared with us, ALL the bodily discomforts you have mentioned - many of them might actually be helped by increasing your water intake - TRY it! - it is not too late to increase your water intake to see if that might just help minimize some of the negative things you have been feeling. 

We can't stress enough how important it is to drink lots of water when you are on these DAA's.

On a normal day (if you did not have HCV and were not on DAA's), ample water in your system is needed to prevent and manage conditions such as constipation and COPD, your body needs to be FULLY hydrated, every tissue and cell, productive coughing is easier when you are well hydrated, constipation cannot be managed without being hydrated.

Try it - start increasing your water intake. Worst thing you can do is to be be dehydrated while on DAA's - almost guaranteed you will not feel very well if you are dehydrated. Dehydration affects your ability to cough productively, and would make constipation worse. 

Have you been having any headaches? How much sleep are you able to get every night? What meds are you on (aside from some painkillers you mentioned)? C.

Ditto that, Harry.  Don't mess with the cure. You're dealing with a lot, I know, but some of us just have had to gut it out.  Your immune system is bound to get better by curing this virus. Get all the help you need.

I know how hard this can be.  Sometimes I wondered if it was worth it.  I sometimes had the hardest time getting through the day.  Just put your head down and cure yourself!  You'll be better for it.

Having said that, I think you should see your doctor to be sure this is the cause of the increased breathlessness.  

Don't stop the Epclusa!

Hi Harry,

Yes please listen to Tig, finish the Epclusa and get yourself cured. My viral load dropped from over 11,000,000 to 50 in just two weeks of Epclusa but that DAA hit me like a ton of bricks. As bad as I felt before treatment while taking the Epclusa I felt worse with aches and pains and fatigue so bad some weeks I had to have friends do grocery shopping for me as I had no energy to leave the house. Then on week 10 like magic the fatigue went away. Now I feel better than I have in ten years. No fatigue or brain fog, and I exercise every day as much as my bum right knee will allow (knee replacement probably next year.)

Hello Harry,

Welcome to our forum! Sorry you’re having to worry about all the other issues while on Epclusa treatment. It can cause increased fatigue and other side effects, but they aren‘t long term in nature. Hoodie is right, you absolutely must stay hydrated or these problems tend to increase. With your COPD, you need to balance the fluids. If you’re on a diuretic, you really need to working in concert with your doctor. The Hep C doctor should know how important increased fluid intake is with these new HCV medications and work with you on an adequate hydration program.

DO NOT stop taking Epclusa. Doing so will simply develop a resistant strain of the HCV virus. Then it will require starting over again, with something else. With one month to go, my recommendation is an easy one, don’t stop.

Your high viral load has no bearing whatsoever on treatment success. Viral loads are constantly changing. High loads are indicative of a spike, but your immune system attacks it and then it drops. They can fluctuate wildly sometimes. In the old days, the viral load mattered when they treated you based on the response. The new DAA’s don‘t work the same way. They are far more effective than any of the poisons of years past. 

Did you get your Flu and Pneumonia vaccinations? You should if you haven’t had them. The Flu vac doesn’t protect you from every strain, just the worst variant this year. I would recommend staying away from crowds and avoid the situations where sick people might congregate. If you have to go somewhere that concerns you, wear a face mask and wash your hands at every opportunity. 

The old clichè, “Hang in There”, applies! You’re almost done, stay the course and you will find that once the virus is gone, you’ll notice improvements in many areas. Often people think the reason they have been feeling poorly was related to something other than HCV, only to discover it was responsible for much of it. Don’t quit...

Please hang in there Harry -- and don't stop taking your pills. 

I know you'll get a lot of support on this forum, people will tell you to try to sleep 12 hours a day if you need to. Are you able to sleep that much? My mom always told me that all the healing takes place when you're sleeping I've always been a good sleeper anyway so it's easy for me but I understand some people have trouble sleeping. How about you?

It's also good to try drinking a gallon a day of water. That's also challenging but if you have strategies it can be easier. Have you tried drinking a gallon a day of water?

Maybe with your COPD it might be better to try for a half gallon? Other people will know better than me.

All I know for sure is that once you're no longer battling the virus things will start getting better and more healing will be possible, in terms of your immune system being able to handle things without having to fight off the dragon. 

Only 28 pills left right? Hang in there and please continue taking them religiously, I will pray for you every day Harry. Hang in there

Hi im 65 yts old geno 3 , 21000000 VL copd emphasemia 26 pills left to go then finished i wanted to have VL checked At 4weeks to see if tx is working and im not damaging my immune system as i dont need a flu or cold atm breathlessmes is common with phasemia epclusa seems to make me exhausted ,depresion ,constipation,i kinda feel like stopping tx iv heard some scary things poste tx flu cold symptoms other people say they felt fine because of my age and hi VL im concerned dont get much support ftom liver nurse any thoughts ideas greatly appreciated im in Australia grew up in 70s mm