Hep C Discussion Forum

polosilver · Senior Member

RE: Annie and Epclusa May 10/19 SOT

lamassu · Senior Member

Hi Annie,

Glad you are doing well feeling fine! Please do let us know when you get the undetected lab results, enjoy the rest of the summer!

Cheddy · Moderator

Annie,

I'm so glad to hear you are doing well. Thanks for stopping by and filling us in.

There are so many adjustments coming along with this treatment. It's a nice step when you can quick revolving around the pills.

I'm looking forward to hearing your results after August 29. Those viral load tests are huge.

Keep up the good energy.

Cheddy

5-1-18 · Guru

hi annie, life without getting the pill down in time , yep it's a bit weird after relying on it for the tx time but we all know it did the job it was meant to do

Tig · Admin

Hi Annie,

It’s good to hear from you. It sounds like you’ve had an active August already! I’m glad you’re feeling well enough to entertain the entire family! I know that chasing grandkids around for days and weeks at a time leads to exhaustion. Fun but tiring!

Let us know how your next bloodwork goes. Maybe at week EOT +4 and 12. Some docs don’t run them until week 12. Insurance or plan usually dictates the schedule. Either way will do, because I’m sure you’ve been successful. Waiting to get the final results is hard, but sweet. It’s one of those moments that makes you feel pleasantly numb

Iris Dragonfly · Guru

There you are Annie! so glad to hear that you've been out having a good time :) Congratulations on reaching the end of treatment, I know you must be very anxious to see what the final outcome is, we'll all be here rooting you on. many blessings, Iris

Annie · Member

Hi Everyone! I'm still here. Thanks for asking about me.

I finished my last pill Aug. 1 then went on vacation for a week. My sister, Mom and I rented a cottage and all the kids and most of the grandkids came for a day to celebrate my Mom's 85th birthday. She was really surprised!

I've been feeling good. Did lots of walking this past week and getting out in the sun. Now that I'm back home, I'll get into my routine without the pills, which seems strange after everything revolving around them for 12 weeks. Tomorrow I'm going to ask my doctor if I can get blood work for liver/kidney functions and also get the shingles vaccine. I've ready so many have had shingles after treatment. I go to the specialist for viral load Aug. 29 but I'm sure it will be undetected. Can't wait to hear those words.

Canuck · Guru

Annie,

Well, very good on your GP then - credit to her for following you with a bit of bloodwork, I had just assumed the hepc doc drew something for labs (as you know i am all for bloodwork and having lots of data!).

But good your GP did some labs, I still think some labs should be done at about the 4 week mark, just cuz, just to keep an eye on things. So, you had a CBC (and got an ALT and an AST done again), was there anything else (liver-wise) that your GP tested for? - maybe she did a liver "panel" on you maybe? - bilirubin/GGT? Was there an ALP maybe?

You can ask both docs (your GP AND the liver doc) what they think about your GFR. If you read the epclusa monograph, even folk with really quite low GFR's do epclusa. I do not think you will find your docs excited.

Ya, it can almost be considered your "job" (your duty to yourself), to be doing your own "due diligence", to question everything while your undergoing treatment - even if it is not very required. Your doc do their due diligence as well.

You are going to be fine and everything will turn out good, just like it has for the rest of us who have received our cures on these wonderful, new, modern DAA's. We got it made (compared to the ole days, and what folk used to have to do and go through)!

Keep pullin'! I am glad you are feeling pretty good, and drinking lots. You are doing good work! : ) C.

5-1-18 · Guru

annie, so your epclusa tx was for 8 weeks ?you are half way thru! yaya

Cheddy · Moderator

Hi Annie,

I know what you mean about questioning everything that happens while on treatment. I see it happen quite a lot after treatment, too. Having HCV does sometimes hijack our perspective. It's so alarming and so big.

Many changes are occurring. You are slaying a virus. Your body is adjusting to that big change, and it's adjusting to the medication itself. Later it adjusts to the lack of medication. Then, things start to readjust and level out.

In my case, just about everything went back to normal over a few month's time. After that, I started working on my overall fitness to get back to a level I hadn't seen in a long time. That's a good cure.

However, just because our HCV perspective magnifies everything, doesn't mean it's the source of everything. I think you are doing the right thing to follow up on your kidney functions just to rule out additional maladies. I would do the same in the future.

That said, I think Tig has hit the nail on the head. Your'e halfway through and will get your answers soon. I just bet you go back to normal.

I'm so glad that you are feeling well! Keep up the good work.

Cheddy

Iris Dragonfly · Guru

Hi Annie,

Congratulation on making that first bottle toast! You sound like you are doing quite well. that's awesome. I wanted to tell you my creatinine went up slightly during treatment but has since returned to normal. I'm sure it's has to do with the meds and the filtering through the kidneys. My biggest problem now is getting my back pain straightened out.

Keep up the good work! you'll get there before you know it!

BB, Iris

Annie · Member

Thanks, everyone.

Tig, you're probably right. The frustrating thing about being on this med is that I question everything that happens. Is it the med or should I be worrying that it's something else? :)

Canuck, it was my family doctor I saw. I was due for my cervical cancer screening so she decided to throw in some blood work, just CBC and liver functions, which are still good.

My kidney results from Oct/2018 were

Creatinine

74

50-100

umol/L

Glomerular Filtration Rate (eGFR)

74

An eGFR from 60-89 ml/min/1.73 m2 is consistent
with mildly decreased kidney function. However,
in the absence of other evidence of kidney
disease, eGFR values in this range do not fulfill
the KDIGO criteria for chronic kidney disease.

Now they are

Creatinine		95	50-100	umol/L
Glomerular Filtration Rate (eGFR)		54
	An eGFR result of 45-59 ml/min/1.73 m2 is consistent with mild to moderately decreased kidney function.

I'm feeling good and drinking lots of water. I haven't had any headaches and have only taken maybe 5 or 6 regular strength tylenol in the last month. I'm still taking all my supplements, d3, Omega-3, B12, magnesium, probiotics and Vitamin K2. They were all okayed by my doctor and pharmacist.

5-1-18 · Guru

annie, it's good to hear you are doing well after 1 bottle..... are you drinking all the water?

Canuck · Guru

Hey Annie,

Congrats on starting bottle #2! :)

With your SOT being May 10, then the bloodwork you just had was roughly at the 4 week mark as well - so, aside from kidney function, what all else did this draw test for?

How different are the numbers for the current kidney function test(s), as compared to last Octobers?

Good you are keeping an eye on your blood results, don't worry, your doc is too! C.

Tig · Admin

Hi Annie,

Congrats on your graduation to bottle number 2! WOOHOO!

The kidney function could well be medication related. It would help to know what tests you're referring to, the GFR and or Creatinine tests are likely to be what you're questioning. Epclusa is primarily excreted via the kidneys (80%), so it could easily be affecting both the function and test results. We have had others here that had low GFR's (Glomular filtration rate) and higher than normal creatinine levels. In each case I remember, all function returned to normal following the end of treatment. Occasionally, other medications will cause additional impacts on the test results as well. NSAIDS are very well known for causing creatinine elevations, even in non HCV patients.

I would discuss this with your doctor and get his or her opinions. If your doctor has the same thoughts I do and there is no other reason or concerns about this common treatment reaction, I would concentrate on finishing treatment and paying attention to healthy eating, hydration and avoiding regular use of OTC medications, such as NSAIDS and Tylenol. Of course there are prescriptive meds to avoid, but that's something your doctor will be well aware of. My wife recently went through a bit of a scare after a bout of pneumonia and joint discomfort at the same time. She was hitting the Ibuprofen like it was candy, bad move. The stuff can be harsh if used daily. Once she stopped, it resolved on it's own.

Lastly, HCV can cause a myriad of extra hepatic manifestations and kidney function can be affected by it. It sounds to me and of course it's just my opinion, that you are experiencing what many have in the past. Even people with end stage kidney disease can safely and effectively take Epclusa, with stellar results. Let us know what you find out and stay the course. All of this should resolve on it's own once you finish treatment.

Annie · Member

Just checking in. I'll be done my first bottle of Epclusa tomorrow. The time really is going fast.

The first week I had super energy/anxiety but then it started settling down and now I'm feeling good. I had blood work done yesterday that shows my kidney function is lower than normal. I'm not sure if that's part of the Hep C or the treatment. It has gone down quite a bit since the last blood work Oct/2018. I expect to get a call from my doctor by tomorrow. If she doesn't call me, I'll definitely be calling her :) Is this a fairly normal thing?

Canuck · Guru

Well... (Annie and all) - over in the UK they are still! (or maybe more accurate to say) they are "again" talking about their blood scandals, or "continuing" to talk about them (in a renewed fashion) - but talk is talk, wonder where it will lead as far a tangible help for anyone. confuse C.

5-1-18 · Guru

that is so sad that they used blood with elevated LFT's . wow cry

Observer · Guru

Actually Annie, we fought very hard for and finally won a second class action lawsuit for compensation for people infected outside of the arbitrarily chosen window of 86-90...

(that was just to try to cover their behinds about when they knew the blood was compromised with HCV despite years of knowing elevated LFTs were showing up in some the blood)

however the hoops to jump through and criteria expectations were pretty strict and frustrating. I had the actual batch numbers of my tainted blood on a letter from the Red Cross informing me that I had been given tainted blood, was at stage 3 fibrosis and still had to provide 25 years of all medical records, get biopsies again and fill in thick application forms , get my Drs to document my whole history and on other forms etc etc etc...

I think unfortunately there was a time limit to apply..but you could check the Klein Lyons site and see if hopefully I am incorrect.

Annie · Member

Canuck, I am very grateful to be in Canada with our health care system. I know in Ontario, when the government first took it over, it was very good and we had lots of doctors here and we were admitted to hospital when we needed to be. Over time, the costs grew and the cutbacks came and now we don't have enough doctors and not enough hospital rooms. People spend days sleeping in the ER because they don't have an available bed for them or they get sent home only to get worse and end up back at ER. It's definitely not the panacea the rest of the world thinks it is but, it is much better than most.

The class action for tainted blood is only from 1986 to 1990.

-- Edited by Annie on Sunday 19th of May 2019 03:27:15 PM

Canuck · Guru

Hey Annie,

You touch on the good and bad of our Canadian "system" - so many from other countries envy us, but it is always best to live in a country and experience what health care here is really like, for yourself - the Canadian system(s), is not always as stellar as it appears to others. Now, given - some poor people, in some poor countries would see this place as unheard-of dream-care. But the reality is that for some of us here, we still just can't get what we need, for some of us here, we can't afford what we need, for some of us the outlets and options just don't exist, to enable us to get what we need.

That is why I thank my lucky stars (every day) that i was successful in getting into my Vosevi trial - never in a million years would i have got those good drugs or the primo care I received otherwise, at the time I needed to be treated. in 2015/2016 I had very limited choices if I had not been successful in winning a seat in my trial. As well, I got into a "follow-up study" post-treatment. Both of these trials provided me very good care, good and frequent labs and testings, and close following - I was/am very lucky - it would have been such a different story for my health care, had it not been for these trials.

Things are improving in Canada (when we speak about standard HCV treatment), altho slow as usual, it is better than even a few years ago. Every Province is like a world of it's own! when it comes to health care, some provinces doing things a bit better than others.

I am glad you did not have to wait too long to get to treatment, that they did not keep you waiting longer, and, that you were diagnosed and treated in an era when it was likely you would be able to get primo drugs such as epclusa - you are lucky you got the good drugs of today like epclusa. Had you been diagnosed prior to 2015, you too might have been facing some less savory treatment choices back then.

You and I should be very grateful for what we have received. : ) C.

Oh, BTW - have you ever received any advice or council on possible assistance or compensation regarding transfusion-acquired HCV from the 70's - just wondering? We have had a number of folk from this continent and from abroad who acquired their HCV via blood products and some who I think gained some forms of assistance/compensation.

Annie · Member

I know there are problems with the medical system everywhere but where I am we're having big cutbacks right now and it's close to impossible to get any extra tests run if they're not absolutely necessary and, if you don't like your doctor, well, good luck in finding another one. Wait times can be way too long and every government that gets elected runs on cutting down wait times but it never seems to happen. Health care spending has been crazy. I'm thankful to be able to not worry about having to pay every time I see a doctor but the downside to having it run by the government as "free" means too many people are at their doctor or local ER for every cut or runny nose.

All that to say I think my family doctor and Hepatologist are both running all the tests they can and I've been able to be treated a lot faster than I thought. No matter what, this dragon is going down!!

Canuck · Guru

I agree Lam, PCR's best show relapse, BUT none of us are relapsing much at ALL these days! : ) I am not interesting in following my ALT and AST so much, because it might hint a relapse is occurring, my ALT and AST might also show me other things, more general info and perhaps even things going awry aside from liver per say, so having good thorough labs done (enzymes and much more), all along, and continued, as part and parcel of our long term following is a good thing in my book.

Your SVR24 is a lovely thing Lam. Annie will be there too one day. : ) C.

lamassu · Senior Member

During my 20+ year history of living with Hep C, once discovered back in 1990 my liver enzymes were never elevated, even when I was feeling worst just before I started Epclusa last year. IMO I don't think you can rely on just monitoring liver enzymes to chart the course of Hep C or monitor for relapse. You need the viral load. Of course I might just be an edge case at the tail of the bell curve. I'll insist on yearly viral load tests even though I reached SVR24.

Canuck · Guru

I like it when they spend money on frequent labs - constant feedback is good (in my book), but that's just me. I am still a big advocate of 4 week LFT's and PCRs. I also like both LFT's and PCR's done at EOT and then of course again at EOT+12. I am also big on them doing lots of careful pre-treatment assessment labs, routine bloods/kidney function tests and having a some of these repeated if required at least once during treatment, like at the 4 week mark, just to make sure all our systems are being cooperative in the programme.

That's good (for whatever particular liking or reasoning your doc has) that he will do PCR at EOT+4 weeks and then do a PCR again at EOT+12 weeks - it's just a little different than what others do, likely just his preference - other have a preference to do the PCR at EOT and then again at EOT+12 weeks (your doc choosing EOT+4weeks is just a little dif) - doesn't matter much either way, at least you are getting 2 PCR's done after EOT.

You could always just ask your doc nicely if he would "please" (to provide you with some possibly comforting feedback) let you have your LFT's and PCR done at week 4 (as well as at EOT+4 week and your SVR12), and see if he doesn't just give you that extra one.

I am glad you're not feeling too bad! : ) C.

5-1-18 · Guru

i got tested at 4 weeks, then not again till 3 months after tx.

they are that confident in these new daa's

if the other liver tests come out better that is good news

-- Edited by 5-1-18 on Friday 17th of May 2019 07:13:54 PM

Tig · Admin

Your doctor is correct, testing after the first four weeks is unnecessary, but has been practiced by many over the years. When I was on treatment, (back when most of today’s Dragons were still infants), complete testing and I mean everything was done, including the PCR on a 2 week interval. Of course the rates of success were very low across most treatment protocols. Nowadays, it’s rare that success isn’t achieved, so the doctors aren’t as aggressive with testing. We had what was known as “Response Guided Treatment”. If we didn't meet a specific testing criteria, treatment was often stopped for response failures.

Your doctor’s PCR testing protocol is sound. Many refuse to even do an EOT PCR and wait until the EOT+12 timeframe. My thought finds that difficult to accept, because it leaves the patient wondering anxiously for results. We have enough anxiety! One thing of note and it’s a good one, if you are undetected at EOT+4, the odds you will achieve SVR12 are nearly identical. While SVR12 is the goal, knowing you’re undetected at EOT+4 provides you with a huge morale boost and the knowledge that things are golden!

Annie · Member

I'm already on number 8 tonight! It is going fast. The last few days have been really good. If I didn't know I was taking anything, I wouldn't know I was taking anything. If that makes sense :)

I talked to the nurse at my doctor's office about the bloodwork and she said that checking the VL 4 weeks into treatment doesn't really mean anything because almost everyone shows UND while they're on treatment. Apparently the guidelines in Ontario, Canada are to wait for EOT + 12 but Dr. Marotta likes to check EOT + 4 and EOT + 12 so that, in the unlikely event it doesn't show UND at 4, he can start planning other treatment options. I have a lot of confidence is this doctor and in Epclusa so I have no problems with his methods. On Aug. 29, I will show UND and SVR12 in October/November.

Observer · Guru

I agree with the others...treatment isnt a one size fits all situation..silly pharmacist...

She must not have known any people with hepC ...fatigue and insomnia together are kinda symptoms of HCV

If you like drinking coffee and miss being able to..make sure to only drink organic coffee and maybe have it in the a.m...... the chemicals used in growing coffee can be hard on your nervous system.

Its great that you have some energy and channeling it with a workout is brilliant .

youre doing great Annie Dragon Slayer

Canuck · Guru

Your pharmacist might have/should have qualified her comment a bit better, as yes, quite a few people can (and do) experience "fatigue" as a so-called "side" of being on a DAA, but fatigue is not necessarily "a given" as a side. 5 is quite right in saying it is a different ride for each and everyone of us - your pharmacist should know that - but she is probably limiting her comment to being a little too short by saying what she most "commonly" sees or hears about. We have had others here on DAA's, mostly I seem to recall on Harvoni, who had "vivid" dreams, and also Harvoni folk (mostly) but as well Zep and Mav who experienced some "high energy" - some called it the Harvoni high. Some people have experienced both (fatigue and energy periods) while on their DAA's. Others, hardly experience much of anything at all - it seems to vary a fair bit. I am glad you are riding the waves that come, using good common sense in how to cope, take comfort in knowing that every day that passes and every pill down the hatch you are getting the very best help there is to knock this virus out of your body forever. Yay for epclusa and for your cure that is happening as we speak! : ) C.

Annie · Member

I'm keeping a journal, just jotting things down. Today was much better than yesterday, maybe because I worked out and/or because I didn't have a big coffee in the afternoon.

I appreciate you all!!

5-1-18 · Guru

i agree with the others, it's a roller coaster ride of ups and downs and feelings and everything while on tx; and not everyone has the same ride.

keep noting how you are feeling and when; i couldn't have made it without our forum friends here

Cheddy · Moderator

This is good news, Annie. I'm so glad you are getting your treatment. There are a lot of weird steps in this journey and taking that first pill is one of them. It will be over in no time, well, it looks that way when it's over. For now it's one day at a time and one glass of water at a time.

Silly pharmacist. I agree that it is helpful to communicate with people who have this experience in common. I always said that nobody else get's it, but then, I wouldn't want them to have to. I very glad you have support. Chances are with Epclusa you will make it through with minimal side effects. All that energy could come in handy though.

All the best to you, Annie.

Tig · Admin

Hi Annie,

You describe many of the same symptoms as others on these new DAA’s. Doctors and pharmacists don’t know the finer elements of these treatments. I don’t think they listen to their patients during the 5 minute checkup they bless us with. The increased energy and insomnia are well known side effects. You’re right though, they will settle down after 2-3 weeks. There are a lot of metabolic changes going on right now and what you’re feeling is your body adjusting to these awesome medications.

Annie · Member

Just checking in. 5 pills down and things are going well overall. I'm drinking lots of water so no headaches. I'm sleeping well but not as long as I would like. I have a lot of energy that I need to learn to put to good use. I'm going to workout this morning to see if that helps. I'm keeping down on the caffeine but yesterday bought a coffee while I was out and thought I was going to climb walls. Lesson learned :)

I asked my Pharmacist what she would suggest if I have insomnia and she laughed and said "Oh no. Epclusa will cause fatigue, if anything. You don't have to worry about insomnia." Haha I had to start taking half of a gravol before bed to settle down. Very vivid dreams too. All in all, it really is going better than I expected and I'm sure these side effects will work themselves out.

Iris Dragonfly · Guru

You go Girl!

Kudos and best wishes on your journey!

Bb, Iris

Tig · Admin

Well done, Annie! Congratulations on finally getting started and a successful gulping down of your first “Magic Bean”. The anxiety can be heavy at first, but gets much easier as you learn how they make you feel. It all levels out fairly quickly and you’ll barely know you’re taking something.

Keep the water flowing (both ends). That tends to get much easier, too. Anytime you feel sluggish, drink a glass of water, mix in some electrolytes and chances are high you will feel better. Water is golden! smile

Annie · Member

Thank you to everyone for all the support. It feels kind of lonely when nobody in my friends and family circle really understands. They are all supportive though and I'm thankful for that.

Annie · Member

Canuck, I was so scared when I took that first pill. My hands were shaking. Felt kind of silly when I thought about it and the fact that the pills will save my life :)

I found out I made a mistake by taking it after a large meal and with lots of water. Apparently it's much more effective to take it with a little food and water and then drink lots of water the rest of the day.

I went to bed about 1 1/2 hours after taking it and slept really well with the exception of having to use the washroom a couple of times. That's new for me but I'll get used to it. Woke up at 5 and feeling really good but might have a nap later. It's going to be a cool(ish) but sunny day here, about 13C but good enough for me and my cat(Spot) to sit on the porch. He needs a good brushing anyway.

5-1-18 · Guru

Annie wrote:
Pill #1 is down, along with a big glass of water. Will keep you all updated.

,

so awesome annie , thanks for letting us share your journey with you

Observer · Guru

Yay Annie

so glad you have started...that dragon of yours is in for a shock.

Its pretty darn exciting and believe it or not, treatment will feel quick (specially compared to years of packing the virus)

Canuck · Guru

Big congrats Annie! : )

I left you a word on the other thread (where we were last posting), but SO nice to see us writing on your new, long-awaited "on treatment" thread. :) C.

Annie · Member

Pill #1 is down, along with a big glass of water. Will keep you all updated.

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