Author Topic: My time has come, its Epclusa (Read 36826 times)

rk · « **on:** October 03, 2016, 02:23:48 pm »

I was approved for Epclusa plus I received a 15k grant to cover the cost. I feel very fortunate and blessed. My doctor and especially his staff really come through with outstanding results. The grant was totally unexpected.

My start date will be 9/5/16 or 9/6/16 which is 1 month after my first visit.

I read some of you are taking epclusa. How is the morning or evening dose effect your day? By that I mean side effects related to day or evening doses. I may fall asleep fairly quick but wake for a trip or three to the restroom and not sleep as long as I should. I am all ears for any advice but especially in that area.

Other than that I feel blessed and excited to make the best out of my situation.
Thanks, Rod

Mw2324 · « **Reply #1 on:** October 03, 2016, 03:43:53 pm »

Rod,
I chose to take my pill at night due to my work schedule. I feel tired after I take it. Sometimes I fall asleep easily, sometimes I don't. It definitely causes me to wake up 5 or 6 times throughout the night. You'll have to drink a lot of water so plan on waking up to use the bathroom frequently. Some nights I'll take benadryl or melatonin at night but still wake up frequently. Hope everything works out for you.

rk · « **Reply #2 on:** October 03, 2016, 10:34:27 pm »

Thanks Mw, it sounds like I may want to take it at night. If I have to go fairly often I may as well take it at night also. It appears a good nights sleep will seldom happen. If anyone wants to chime in their day or night usage please do. My scheduled start day will be by Tursday evening 9/6 or on Friday morning 9/7. Thanks, Rod

rk · « **Reply #3 on:** October 07, 2016, 03:05:54 pm »

OK, I took my first dose today!. Some brain fog is setting in but other than that all seems normal. Getting started was my first goal, the time and the prep seemed much longer than it really was. Now that is in the past and being cured is the goal. I find it interesting how hep-c effects everyone, their daily lives, the courage it takes etc. so I plan to update fairly often as well. Good luck to all, those just starting and all the veterans. Rod

Mw2324 · « **Reply #4 on:** October 07, 2016, 03:17:51 pm »

Congratulations Rod! Yes it is interesting how everyone is affected differently. Keep us updated on your progress and best of luck to you!

Phoenix17 · « **Reply #5 on:** October 07, 2016, 10:57:20 pm »

Yay to the first dose! Congrats. i take mine around 7pm. I also get up a few times at night due to all the water I drink. Drink about a gallon a day. It helps! Let us know how you are doing!

rk · « **Reply #6 on:** October 08, 2016, 12:01:31 pm »

Yep-per first day is over. I got shall I say somewhat mentally impaired otherwise a good and productive day. I drank a gallon plus before 8 pm and just a few sips after.
Once I felt a very minute head ache but it passed very quick. I got a decent nights sleep with my usual two or three bathroom trips. My brain feels somewhat buzzed today, I guess I'll have to treat that as my new normal > whatever that is. lol
Ok my best to all. Phoenix I took to measuring my water volume because of you - thanks Rod

rk · « **Reply #7 on:** October 09, 2016, 04:24:30 pm »

Day three, doing well and brain fog is fairly mild. It is more intense in the first three or 4 hrs then not very noticeable. I think if I was working it may be a problem. Fortunately being retired its not a problem or its not a necessary function! lol
So far so good, my best to everyone.

Rod

Mw2324 · « **Reply #8 on:** October 09, 2016, 05:50:18 pm »

Hey Rod,
Glad to hear things are tolerable. The brain fog comes and goes for me and yes, sometimes it is a problem at work. Fortunately, my boss is aware I am taking new medication and allows me to leave early if need be. I have good days and bad days. I envy you, sometimes I wish I didn't have to work during treatment, I think it would be better for me. So keep on taking it easy!

MommaT · « **Reply #9 on:** October 09, 2016, 07:34:47 pm »

Good luck rod-
Keep posting I need to feel connected to others since my family does not understand
me, my fears and my disease.
You are right Epclusa effects all differently. Since I have brain fog but, really more like dementia and cry very easily. I wish I had tried it at night first! I never have headache or stomach. Thank you all here!

Mw2324 · « **Reply #10 on:** October 09, 2016, 07:41:02 pm »

Momma T,
Keep on pushing, hopefully it gets better. I also cry very easily. This is unlike me, so it's funny that you said that. When my brain fog comes, it's scary. I've had a stressful week, my fiancee tells me I've been all over the map lately and I agree. One day I'm energized and the next I'm tired and crying. But overall, am still grateful. I also feel as if no one understands me. Just know I am here for you. It will get better.

rk · « **Reply #11 on:** October 10, 2016, 01:44:43 am »

Hey Mw, we all have a plus side, I envy you. Your best years are in front of you and in a little over two months you will be virus free. That's hard to beat, wish I had that deal.

Rod

rk · « **Reply #12 on:** October 10, 2016, 02:18:19 am »

MommaT,

No problem I will my intention is to keep a running log every day or two. Its funny (not funny ha ah ) how everyone differs. An hour or so after taking my first dose I noticed inside my head it was different. It got stronger then I realized this is the fog I read about. Knowing that I just let it happen. My thought process was not clear but I felt I could adapt to its terms - so to speak. It may alter my thought process but its under my control.

You know I asked my case nurse if I could alter my dose time. I asked by an hour or two should I want to take it later. She said no problem. I have done that with other meds when the timing was off. Just saying, you might inquire if you like. At an hour or two a day in a week you could switch. Try to keep a positive attitude, you will get there.

Rod

MommaT · « **Reply #13 on:** October 10, 2016, 07:16:13 am »

Hello Mw-
Just hearing that I am not the only woman on Epclusa that is so befuddled which literally...... leads to tears-well THANK YOU!

Thank you Rod-I will look into changing time slowly as you can adjust maybe night is better.

I have the 4 week on 10/14 VL test and trying not to get bogged down and loose zeal of a cure by this confusion!

Thank you for your support again I have no other support system. I think husband and adult children just do not understand me at all!

I am in the shadows with an Unpopular disease. Someday things have got to change!

Mw2324 · « **Reply #14 on:** October 10, 2016, 08:05:39 am »

Momma T just keep your eye on the prize. Yes, it may be uncomfortable at times, it may be upsetting at times, but this is all temporary and the odds are absolutely in your favor. These are powerful drugs and our bodies are trying to get accustomed to them still. Keep up the hope for a better way of life soon.

MommaT · « **Reply #15 on:** October 10, 2016, 08:22:50 am »

Thank you Mw!

I will read your last post-in particular.. when I'm down. Yes, this is Temporary and it Will get better. You absolutely made me smile just now. I cannot loose track of my success to this point!

I think other problems like my husband Heart attack and upcoming daughter Wedding well- I am all over the place. It makes sense.

You see these are difficult things without fighting a Hep c Cirrhosis diagnosis. People young and old rely.... on the Bar scene-not that I was ever a big drinker-but, it stings a little!
I do feel I will always be 'out of the loop" as I will never touch a drop of alcohol again.
Weird and adjusting to this life!

MommaT · « **Reply #16 on:** October 10, 2016, 08:55:30 am »

Hi Everyone!
I just read this post so it is real! Especially on anti Hep C meds for cirrhosis peeps! I am here but, at the same time I am not here. Diet can effect for the better!

http://www.ihelpc.com/brain-fog-with-hepatitis-c-and-cirrhosis/

Mw2324 · « **Reply #17 on:** October 10, 2016, 09:06:28 am »

Thank you for the useful information! Just remember this is good brain fog, this is disease killing brain fog!

Lemonade · « **Reply #18 on:** October 10, 2016, 10:58:09 am »

Hi MommaT and the rest of you on Epclusa,

Just wanted to throw in my two cents about changing dosage time, and experiencing brain fog. I took Harvoni, but it looks like both Epclusa and Harvoni share similar side effects.

I started out taking Harvoni in the mornings, but the brain fog was too much. I am a sign language interpreter, and it is crucial that I am 100% mentally present, and in the moment, while working. In my 4th week of treatment, I started moving the time I took my pill, back one hour everyday, setting my alarm to wake up during the night. I did this until I got the dosing time to 8:00 PM. My doctor said many of her patients changed dosing from mornings to night, because of the side effects. Around the end of the 5th week of treatment, my brain fog was gone.

Congratulations to all of you on your journey to being cured:)

rk · « **Reply #19 on:** October 10, 2016, 12:35:45 pm »

Hi Lemonade,

That is good information and yes after asking my nurse I considered that option. After I take it I get kinda of buzzed and would probably have sleep issues. I had sleep issues without epclusa. However I would like to say anyone thinking about a change should discuss it with their doctor.

Its good to hear your fog has lifted. For some reason my mind just went back to the LA area. I use to drive in the fog and could not see squat. To pull over and go slow on an LA freeway is not an ideal situation. So when it lifted it was a big relief. Anyway I took my med two hours ago, and I think my mind got off track. lol
Good luck to all and yes it is journey.

rk · « **Reply #20 on:** October 12, 2016, 12:13:28 am »

Five days no change, yes some fog but tolerable. I go in for labs next week. They prefer 1st week numbers then again at 1 month, then every two weeks.
If anyone is interested my insurance company shows they spent roughly $25,000 to cover epclusa. On my end about $5000 but the free grant paid for that. I seriously doubt they are out 25k most likely far less.

MommaT
Don't feel to bad about being out of the loop, I've noticed that as well. I use to have a few but even before hep c I pretty much quit. I don't miss it. When your thought process is all over the place you should try to focus on 1 thing only. Easier said than done but you complete one task. It feels good to get first one out of the way. Wish you luck, things will improve.

Best wishes to all, Rod

MommaT · « **Reply #21 on:** October 12, 2016, 12:02:01 pm »

Hi Rod,

I don't feel out of the loop- on this site! Thank you and Cheers that worked out for you and that is amazing, 5K grant! I will try the 1 task at a time. I find myself talking out loud OK then list what I have done and wear a fitbit n wrist for any walking to show progress. I must say exercise temporarily helps to clear my head! I will see my Dr for 4 wk follow up and will ask how to do the time change to night.

rk · « **Reply #22 on:** October 12, 2016, 01:42:43 pm »

Hi MommaT,

I read the link you mentioned on diet. Small portions makes sense so it does not tax the liver. That organ goes through hell especially with hep c! That grant was for 15k but what is not used is passed on. Whats more amazing is I never asked for it, it was offered. My intention is to get more details, it may help others on the forum.

To continue my log, today I feel fairly normal. I have a slight buzz, the first 3 or 4 days I was hyper. Brain fog is minimal, I kind of wonder if viral load plays part mentally. Mine is very low at 2940, its never been high since being diagnosed a few years ago. Well it was a thought, viral load and liver function are different things. That's all today, I am going to take my near normal self out for a little fun time. Rod

rk · « **Reply #23 on:** October 14, 2016, 12:18:12 am »

Today things are not going as well. Starting yesterday late afternoon brain fog increased quite a lot. I can deal with that but my blood pressure is elevated. I take BP meds however they not sufficient. I am curious if anyone else has experienced similar?

Rod

bluebird · « **Reply #24 on:** October 14, 2016, 08:14:53 am »

Good morning to everybody, I am new on this site and I am glad that it is exist. I feel I can find more answers here than at the doc office. For last several months I was under the stress after I found out I have hep c (genotype3) through the blood transfusion back in 90s. Simple blood test on yearly check up showed a big elevation of Alt and Ast( aproximately 200/100), and dr requested more blood test and etc. i skipped my dr appt last year( wish I didn't), maybe it would make some difference, but now I have to deal with hep c and comp cirrhosis. Yesterday I received my first bottle of epclusa and will start my treatment today, 10/14/16. I was wondering if anyone took this during the first part of day? I was thinking to take it around 10am, but at the same time afraid to get my brain foggy since my job required a strong attention to details and I work 10 hours a day. Any advice from the people who already takes this magic pill? How soon after taking a pill you get buzzed? How long does it last? Would you recommend to tak it with food or without ( on empty stomach?) I am going to fight to kill this stupid virus! Good luck to everyone, I know we all going to win! Have a fantastic day!

Mw2324 · « **Reply #25 on:** October 14, 2016, 08:38:52 am »

Hey Bluebird,
Glad to have you here. I definitely get more answers from the forums than my doctor to be honest. I am going on my 6th week of Epclusa. Congratulations on your treatment. I will try to help you based off of my experience and what I've heard from others. I would recommend taking it at night. I have taken it at night from my first dose. About a half hour after I take it, I get tired for a few hours. I also sometimes get body aches and pains for about 2 hours after I take it. It may make you tired and groggy so that's why I'd recommend it at night. I've seen other people regret taking it in the morning, although you can adjust your dose time with your doctor's approval. I usually take it right after dinner but have taken it without food and have been fine. Best of luck to you and keep us updated on your progress!

Mw2324 · « **Reply #26 on:** October 14, 2016, 08:42:34 am »

Oh and p.s.- drink lots of water. My first 3 weeks I was drinking about 4 bottles a day. I am now up to 6 bottles. Drink as much as you can, it will help with side effects. My doctor never told me any of this!

MommaT · « **Reply #27 on:** October 14, 2016, 09:07:41 am »

Hello Epclusa Adventurers!

I just went in for 4 week labwork! It says HCV RNA Quantitative PCR? I am excited to see Dr 10/20 I so hope to show lowering of my Viral Load? Could it show non detected? Then it would be worth this crazy brain fog! Anyone ahead of me come back from this test with results

? Thanks for all your Support! Water is my friend. I am up dressed and.... brushed my teeth lol

Hi Rod- I tale BP meds, too and have noticed my blood pressure getting higher! I am seeing dr and asking why and calling Gilead to report. It is like the BP med is doing nothing!

Welcome Bluebird-
I feel the same as you I also got the Compensated Cirrhosis shock-if you see my numbers below. ALT/AST Crazy High and 1.7 VL Funny Dr. said my liver is finctioning quite well.
I think your question of timing is a good one. I started mine in the morning concerned about having no stomach issues or any medication in me. Yes when I take my Epclusa it does give me brain fog. I have to admit it has not been easy. I have no other symptoms, which is great!

You are starting and you are not alone!

Hoping for a better Hep C free life!

Mw2324 · « **Reply #28 on:** October 14, 2016, 09:26:31 am »

Hey Momma T,
I've been wondering how you are! Yes, that blood test is your viral load test. Yes, it could be undetected and I'm willing to bet it is. I had mine last Friday and mine came back Wednesday as undetected. I'm very excited to hear your results, please remember to share! Take care. Hope you are feeling better!

rk · « **Reply #29 on:** October 14, 2016, 05:19:29 pm »

Quote from: bluebird on October 14, 2016, 08:14:53 am

Yesterday I received my first bottle of epclusa and will start my treatment today, 10/14/16. I was wondering if anyone took this during the first part of day? I was thinking to take it around 10am, but at the same time afraid to get my brain foggy since my job required a strong attention to details and I work 10 hours a day.

Hi bluebird,

I started last Friday 10/7, were both newby's. I take mine at 8am and the buzz starts about an hour later. I chose morning in part because if it makes others sleepy it may keep me awake. I was right the fog or buzz as I call it seems to make me hyper. With that going on its doubtful I would sleep. I am not qualified to give an assessment on work, I don't do that. I will say if I did at times it could be a problem. Lack of sleep can be a problem as well. Good luck on whatever you decide, keep us informed.
Rod

rk · « **Reply #30 on:** October 14, 2016, 05:44:57 pm »

MommaT,

I called Gilead and they were not aware of any BP problems. I told them taking epclusa was my only change. I'll need to get back to them because I feel it does. I checked out my drug interactions and failed to find anything. I am going to run it by my Hep doctor. One reason I think it does it because it tends to make me hyper. Nothing conclusive but I know my body. I have increased my BP med. If it is epclusa when I am done I will reduce my BP med if it is to low. Best to you on those labs. Rod

rk · « **Reply #31 on:** October 16, 2016, 07:40:58 pm »

My 10 day update. Now I'm thinking my elevated BP was pilot error. I won't get into it but its normal now. Since I started epclusa my thought process tends to wonder and I had to regroup. Today I felt a slight brain buzz but it disappeared and I feel more focused. This Tuesday 10/18 I get my first blood test. Its going to be a CBC,CMP, HCV viral load. My VL has always been low so will see how its effected. I have online access to my labs so I should know fairly quick. That's all for now I am excited to see the results. Rod

rk · « **Reply #32 on:** October 25, 2016, 02:55:24 pm »

Hello fellow eppers - my nickname for peeps on epclusa

My day started by oversleeping. That was great I am not so good in that department. That means I took epclusa 20 min late. Aside from that I got my labs at 12 days. This is the best news yet. It came back as, HCV Not Detected! Wow that was quick, I felt like break dancing

Now in my third week the finish line appears much closer. My VL was always low, my immune system must like overtime. lol So there it is, its good for me all my epper pals just starting or soon to finish.

MommaT · « **Reply #33 on:** October 25, 2016, 03:11:00 pm »

Hi Rod,
Congrats great news! I can see you must be on top of the world - so quick and just 12 days. Enjoy your day- I think it is like a miracle and you are F3! Must have set some record! So happy for you

Mw2324 · « **Reply #34 on:** October 25, 2016, 04:44:39 pm »

Rod,
Great news! Congratulations!

rk · « **Reply #35 on:** October 25, 2016, 07:47:35 pm »

MommaT & Mw

I guess it does not matter but what I fail to understand is the relationship between everyone's stats. Meaning vl's range from low to extreme, some are high in a short time vs some are low in a long time. I tend to think our immune system has some control. Then being at F3 I feel near normal and I felt normal before treatment but some of my friends may not agree. ha Then again maybe I think to much, although my second thought was to reconsider break dancing. I think I saved some bruises & twisted limbs! have a good day & thanks

elias · « **Reply #36 on:** October 25, 2016, 10:48:12 pm »

Congratulations Rod!!!!!

Amazing how quickly that happened for you!!!Gonna be hard act to follow with my high starting viral load.. I'm curious though why they took vl so early on? My dr said after 4 weeks

Nonetheless. Awesome news

rk · « **Reply #37 on:** October 26, 2016, 12:54:27 am »

Elias they have me scheduled for labs every two weeks. Why I am not sure but I signed an agreement to comply with treatment and my physician agreed to monitor my treatment and process. The first was an early two weeks, next one will be at a full four weeks. They promised me epclusa even if it was denied, which it was. The RN always returns my calls and is very knowledgeable. So for a little inconvenience and a few dollars more (my labs have coinsurance) I comply. Yes my viral load was only 2940 as I recall after untold years. I think the highest was around 10,000, I imagine they bit the dust in the first few days. Yours will to, we are fortunate. Thanks Rod

rk · « **Reply #38 on:** November 03, 2016, 01:15:39 pm »

Today my Hep c friends is my 1 month anniversary. I took the last pill in my first bottle. I feel pretty good with a better than average nights sleep. My one month follow up is scheduled for next Tuesday. It should be fairly routine since I cleared the virus at 12 days. I wish you all, from the pioneers that led the way to those just starting a very pleasant day.

Thank you all for your help & support, Rod

Mw2324 · « **Reply #39 on:** November 03, 2016, 07:05:12 pm »

Awesome Rod, 1/3 of the way down!

rk · « **Reply #40 on:** November 15, 2016, 09:10:26 pm »

MW, Now I am half way there. I feel fine no issues other than sleep on occasion. No aches or pain other than the usual for an older guy. Its been fairly uneventful, no complaints here. I had sleep issues before treatment and Epclusa did not help or hinder it that regard.

I read earlier that seniors used about 5 billion in Harvoni. It appears us old folks was hit the hardest. Many including me have no clue where it come from. It could have been by a Dentist or Doctor, blood transfusions etc. In the old days syringes was reused. Supposedly sanitized but perhaps not so well. Then it may have been passed to sonny boy or daughter. Anyway just some thoughts to leave you with.

Be good all and get cured. Rod

rk · « **Reply #41 on:** December 01, 2016, 03:34:41 pm »

Today marks the end of my 8th week & tomorrow starts the last 4 weeks! What I thought may begin a nightmare has been a fairly smooth ride. The only thing I question might be my thought process. It may be slightly altered but I am not sure, or it may be my new normal. I'll find out after my last pill on Dec 29. I am hoping for a happy new year. Thanks everyone

Rod

Av8tor737 · « **Reply #42 on:** December 04, 2016, 08:03:53 pm »

RK,

Just about to cross the 7 week mark myself. My side effects have been mostly minimal, I do get minor back pain and nausea now and again, and experience tenderness in my abdominal area. But as you said, a lot I'm sure is age. And working has not really posed any challenges for me. I've been reading others who seem to be on a strict timetable. Can anyone confirm their doctor ordered this? Mine didn't. In fact, I'm finding that my research is providing more information then her quick 5 minute visits. Basically, here's Epclusa, see you in four weeks. If it hadn't been for the great pharmacist on the phone (in California I might add), I'd have no clue as to what this drug does or does not interact with. I have a head cold and ear block and was trying to get info on Amoxycillin interaction. Good luck getting my doctors office to call back. Anyway, good luck to you "Eppers" (I like that). It's been a fairly smooth ride for me so far...

rk · « **Reply #43 on:** December 04, 2016, 11:36:19 pm »

Av8tor,

It seems some doctors are understaffed. There are a number of reasons including they are in it for the buck. Who knows but my doc is at a hospital and has at least a staff of three. I always get a return call to my questions. My doc said up front he was going to get Epclusa, it has the best success rate.

If you need an answer quicker you can call your pharmacy or call Gilead. Gilead's program is called onward. You go through a series of questions then they answer your question or try.

It really has been a smooth ride. My priority is nothing and I mean nothing interferes to complete my treatment without interruption. I have 25 days left.
We actually have it easy compared to earlier treatments. rk

elias · « **Reply #44 on:** December 05, 2016, 12:25:54 am »

Gilead's Onward program is ok. But seems they're only allowed to read what's in their printed material. Which u probably already have

Specialty Pharmacy answers me more directly, so far...

rk · « **Reply #45 on:** December 11, 2016, 01:45:11 am »

Update, 19 days until Eot. My blood count, especially platelets has improved. I asked my doc if taking beet root powder was ok and he said it was. It lowers BP and I read recently it also increases platelets. I use to use it and stopped around the time I started treatment. Been back on it for two weeks and my platelets increased from 93 to 142 so it seems to be working. Anyone with a low platelet count may want to consider beet root powder as well. I did it because mine was below normal. Have to be cautious though and know what your buying. That all for now. rk

elias · « **Reply #46 on:** December 11, 2016, 03:14:55 pm »

Hi there, Rod:

Youre bout two weeks ahead of me with the Epclusa. I finish ~January 13

Interesting bout the beet root. My GP thinks I dont really have high bp, because it goes into normal range when im relaxed. But "white coat" hypertension is quite a nuisance. My heart is very fast as well when stressed. So i might look into the beet root. I'll wait till done with Epclusa. But thanks for idea

My platelets are on the low side too. This summer they were all over the place ranging from 147 to 194. Is it possible that the clearance of the HCV, rather than the beet root, is what caused the platelet rise for you?

Glad its going smoothly for you

rk · « **Reply #47 on:** December 11, 2016, 09:14:37 pm »

Hi Elias,

While its possible I doubt its probable. I get two blood tests per month. Test before last I just started back on beet root. That test was up from 90 to 115. Then two weeks later, my most recent test, it was 142. I was undetected in 12 days. I doubt all of a sudden my body/liver started repairing itself. If you google how to increase platelets their are a number of ways. Beets also increase Nitric Oxide which relaxes blood vessels and increases blood flow. I take BP med's and what I notice most is beets extend my medication time.

Time has passed rather quick. I remember my first pill and the effect. I got kind of a high and my brain was in kind of a fog. After the first week or so things seemed fairly normal. Now were near the finish. I look forward to experiencing a new normal while my body heals and recovers from any side effects. We all will have varied outcomes and I hope its all good.

Lynn K · « **Reply #48 on:** December 12, 2016, 02:19:00 am »

The problem with platelet count for those of us with F4 cirrhosis is the structural damage to the liver. Even when we have a transfusion of platelets as is done when numbers fall very low like below 50 or even 30 this is only a temporary fix as platelet levels will return to the previous levels after a while.

The problem is because advanced liver damage causes portal hypertension which results in spleen enlargement and causes the spleen to sequester platelets. For those like myself if our livers do begin to improve with time that will best be indicated by rising platelet test results. The cause of my low platelet count is my cirrhosis and enlarged spleen.

My hope with cure my platelet count will improve. My platelet tests before treatment were around 80 to 90. One year after treatment it was 110. I haven't seen a result over 100 since I first became aware this was a problem back in 2008. Hopefully this spring when I am tested 2 years post I will see further improvements.

rk · « **Reply #49 on:** December 12, 2016, 11:46:52 am »

Thanks for sharing that Lynn. You have been down a long road and still dealing with the aftermath. Hopefully you will see some improvement.

At F3 I am not sure what to make of my low platelets. My doc has not mentioned my spleen but I have been curious if some sequestration is going on as well. I'll ask my doc for some details if possible. If increasing platelets might enlarge my spleen then its a wasted effort.

elias · « **Reply #50 on:** December 12, 2016, 01:50:42 pm »

Hi:

Portal hypertension and enlarged spleen may not the only mechansim for lowered platelets in HCV.In fact, that may not be the most decisive factor.Have a look at this recent research paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4414791/

Quote

HIGHLIGHTS

Patients with chronic hepatitis C often have thrombocytopenia, but its etiology is incompletely understood.
This study tested stored serum samples for thrombopoietin, glycocalicin, and von Willebrand Factor.
Multivariable regression modeling was used to gain insight into the factors associated with the platelet count.
This cross-sectional analysis determined that fibrosis, thrombopoietin level, immature platelet fraction, and spleen size are independently associated with the platelet count in patients with chronic hepatitis C.

Also from same write up:

Quote

One objective of the study was to determine if there are unknown factors influencing the platelet count in CHC. The R2 of our multivariable regression model was 0.51, suggesting that indeed there are other contributing factors which were not included in the model. We did not include antiplatelet antibodies in our study because of prior evidence that they are not responsible for thrombocytopenia in CHC, but there is conflicting evidence on this point.11, 18 One possible mechanism affecting the platelet count in CHC is that HCV infects the bone marrow. Another potential mechanism is that platelets are increasingly sequestered in a fibrotic liver, though this was not apparent in our examination of liver biopsies stained for platelets. This study demonstrates that while several mechanisms are known, they do not provide a full explanation for the observed phenomenon of thrombocytopenia in CHC patients.

Fibrosis in itself may be an important factor--among several others-- in lowered platelets in HCV independent of enlarged spleen and portal hypertension.

I have to admit I dont fully understand everything in that paper.But I think I get the gist of it.

I do not have an enlarged spleen nor portal hypertension, yet my platelets are lower than average. They range from 147-194. I cant say for certain if that's HCV related since I've had HCV my entire adult life. So I have little to compare it to

MommaT · « **Reply #51 on:** December 12, 2016, 06:33:10 pm »

Hello Everyone!

I am checking in and hope you are all continuing Meds and keeping a good humor!

I finished my last Epclusa Dec. 9 YEAH! and need to get VL bloodwork. It is a strange road and My humor comes and goes! I continue to battle other health issues. Which has made it hard to say .....OH I Feel GREAT NOW!

I am finishing a month of Physical Therapy and have always had Migraines, Neck CS with bone spur and now feet Tarsal Tunnel but, at least that.... going is away.

I go from laughing to being a crying hot mess! No lie mood swings like a pendulum!
I am trying to express glass full thinking from a wise Physical Therapist who has made me aware of my breathing and forced to use deep breathing and how stressed I am!

I believe we were talking about methods used to pull out of negative or time it-how much you will focus and leave it be. I do wish we all had an Expert Liver Dr. Sometime if you say something really listen to yourself because you are wise. Then write it down!

Note to self see a good Liver Dr at a transplant hospital! It can't hurt for a good Consultation! Please don't get too caught up in trivial stuff! I know I am easily sucked in with a computer-TV and get down.

Remember to pat yourself on the back every day! You are trying and that is everything! Also you are unique so comparing yourself to others well that may hurt you!

My Best and hang in there! And as my Mom always said, when she saw me sad- Tomorrow is a New Day and things never stay the same!
Terry

Mw2324 · « **Reply #52 on:** December 12, 2016, 06:38:45 pm »

Thanks for the uplifting words, Terry. I hope you continue to stay positive and hope everything works out perfectly for you!

lnw402s · « **Reply #53 on:** December 13, 2016, 04:06:09 pm »

I just started Epclusa and my husband is starting Harvoni today and I was wondering if anyone could tell me what the side effects are like. I know what I've read online, but I'd like to hear from people's actual experience. So far, I've only taken my first pill and I feel pretty good!

Mw2324 · « **Reply #54 on:** December 13, 2016, 04:33:59 pm »

Hi Inw402s,
Welcome and congratulations on starting treatment. I finished 12 weeks of epclusa on Dec 1st. Side effects vary from person to person. The treatment itself is manageable and I was still able to work 60 hours a week but did have some rough days. For me, I had occasional brain fog in the beginning. I had back and chest pain after taking the pill at night that carried over in the morning sometimes. I was tired a lot. I was always thirsty. I had minimal headaches probably only about 5 during treatment. Overall, it was OK. Some people have no side effects. I hope everything goes smoothly for you!

lnw402s · « **Reply #55 on:** December 13, 2016, 04:56:29 pm »

Wow! That's good to know! Are the headaches terrible? Like migraine-types? It sounds like the treatment overall is pretty manageable, especially comparing it to interferon!! The side effects seem less than some antibiotics! By the way, I'm a 34 year old female and Genotype 3 contracted it in 2013; my VL is 1,500,000.

Mw2324 · « **Reply #56 on:** December 13, 2016, 05:04:13 pm »

My headaches weren't like migraines. I typically don't get a lot of headaches so these were just an annoyance. Don't think I've ever had a migraine. Also you are young so I think you'll bounce back easily. I am 30, genotype 2b. I've had it for about ten years. My end of treatment labs have also come back undetected. Be sure to drink lots of water. It helps with side effects and also helps to flush the dead virus out. I'm still drinking a lot of water, not by choice.

lnw402s · « **Reply #57 on:** December 13, 2016, 05:10:18 pm »

LOL yes I HATE water!!!

Lynn K · « **Reply #58 on:** December 14, 2016, 03:39:09 am »

I had a few mild headaches on harvoni and my undersatanding is it is all fairly similar especially as both Epclusa and harvoni both contain Sovaldi.

Really I was looking for headaches because that was an expected side but whether the headache was from treatment or just a headache I couldn't say.

About the platelet discussion, my platelets were normal until after I was diagnosed with cirrhosis and enlarged spleen so in my case I am assuming that is the cause. I assume for those without cirrhosis who have slightly lowered platelet levels there should have to be a different cause. But in very advanced cirrhosis I have seen people reporting platelet counts as low as 30 requiring transfusion to raise levels if only temporally

There are many reasons for low platelet counts other than liver cirrhosis

http://www.mayoclinic.org/diseases-conditions/thrombocytopenia/basics/causes/con-20027170

"Decreased production of platelets

Platelets are produced in your bone marrow. If production is low, you may develop thrombocytopenia. Factors that can decrease platelet production include:

Leukemia
Some types of anemia
Viral infections, such as hepatitis C or HIV
Chemotherapy drugs
Heavy alcohol consumption
Increased breakdown of platelets

Some conditions can cause your body to use up or destroy platelets more rapidly than they're produced. This leads to a shortage of platelets in your bloodstream. Examples of such conditions include:

Pregnancy. Thrombocytopenia caused by pregnancy is usually mild and improves soon after childbirth.
Immune thrombocytopenia. This type is caused by autoimmune diseases, such as lupus and rheumatoid arthritis. The body's immune system mistakenly attacks and destroys platelets. If the exact cause of this condition isn't known, it's called idiopathic thrombocytopenic purpura. This type more often affects children.
Bacteria in the blood. Severe bacterial infections involving the blood (bacteremia) may lead to destruction of platelets.
Thrombotic thrombocytopenic purpura. This is a rare condition that occurs when small blood clots suddenly form throughout your body, using up large numbers of platelets.
Hemolytic uremic syndrome. This rare disorder causes a sharp drop in platelets, destruction of red blood cells and impairment of kidney function. Sometimes it can occur in association with a bacterial Escherichia coli (E. coli) infection, such as may be acquired from eating raw or undercooked meat.
Medications. Certain medications can reduce the number of platelets in your blood. Sometimes a drug confuses the immune system and causes it to destroy platelets. Examples include heparin, quinine, sulfa-containing antibiotics and anticonvulsants."

elias · « **Reply #59 on:** December 14, 2016, 02:40:47 pm »

MommaT wrote:

Quote

I go from laughing to being a crying hot mess! No lie mood swings like a pendulum!
I am trying to express glass full thinking from a wise Physical Therapist who has made me aware of my breathing and forced to use deep breathing and how stressed I am!

Hiya there Terri. And congratulations on finishing the Epclusa. Will you be getting another vl test 4 weeks after EOT? Some give that, others dont

I have a third bottle to go starting Saturday. Should be done January 13. My side effects like yours have been mostly emotional with mood swings , obsessive thinking and sleep deprivation. Magnified 10-fold on the epclusa

I do have this gadget called "Resperate" which retrains your breathing. It was marketed essentially to lower BP but there are claims that it can help with stress. So i bought it. I've been too lazy or too tired to use it lately. It is overpriced (~$300). But if deep breathing really helps you and u want to make it more habitual maybe try getting it cheaper on ebay.

Please continue to keep us posted especially when u get more UNDETECTs. Always an inspiration.

Would definitely be good to find specialist to keep on top of things and importantly to suggest lifestyle improvements to help as your liver recovers from long term illness. I believe there r many things we can do to help the process along. In my case, regular sleep is high on this list

rk · « **Reply #60 on:** December 19, 2016, 09:15:19 pm »

Hi All,

There are apps that focus on breathing. I have one on my phone and it works very well. I use it on occasion to fall asleep which is 8 respiration's per minute. I get into following the pace and forget about everything else.

On another note as of today I am 10 days until EOT. I get blood work tomorrow and another a few days after EOT which will be my EOT test. I also get one 4 weeks after EOT then again 12 weeks after. The Doc thinks I am a pin cushion! lol
The time has passed fairly quick considering its my main focus. I will continue to check in and hopefully give ya all a thumbs up.

elias · « **Reply #61 on:** December 19, 2016, 10:08:04 pm »

Hi Rod:

I just came across those apps too. They're different approach from Resperate. In some ways better. And free!! I use "Paced Breathing" app and "Breathing Zone" Hasn't helped my sleep yet..But i just discovered those on my phone..so I'm glad u didnt go out and spend all that money. Glad those apps help you

I have viral load test scheduled a few days after EOT. (Which is Friday the 13th

of Jan..) But I might just cancel that and re-schedule to 4 week post EOT. Most relapsers do so in those early weeks. So it would give me some measure of confidence, if i pass that. No idea what they now do with those who fail Epclusa. There are "salvage meds" which will be used eventually, but those havent been FDA approved yet.

They sure been poking u a lot. What is they're trying to learn with all those viral loads?

andrew j · « **Reply #62 on:** December 19, 2016, 11:03:37 pm »

I still need an afternoon nap (= I am still having one, whether I actually need it or not) - and the other day, for the first time in A LOT of years, I actually dozed off to sleep.
.. After all those years of anxiety brought about by Hep C.
That's - what - 6 months after finishing Tx?

Don't know if it's relevant to your sleeping issues or not?

rk · « **Reply #63 on:** December 20, 2016, 12:01:09 am »

Hi Elias,

Its a VL test every 4 weeks and reg labs in between. I agreed to follow their program before treatment. They gave me a list of lab dates when treatment began. At EOT I will get the paperwork for last two. One could say they are thorough.

rk · « **Reply #64 on:** December 29, 2016, 02:36:01 pm »

When I started "My time has come" meant years of waiting and the time for a cure is here with Epclusa. As of today I may cured, only time will tell. No results back yet as I took a blood test two days ago. All tests before this showed negative, the first being 12 days into treatment. I took the last pill this morning. Whew what a relief, timing it at the same time every can be a challenge as you all know.

Scheduled is a 4 week test then hopefully a final one at 12 weeks.

Now its time to see if I have a new normal from any effects of Epclusa. The only thing I noticed was my mental process. At first like many the usual noted "brain fog". Then I become aware or self conscious of more jabber while getting to the point. Sort of like this post

; Hopefully that improves or my age finally caught up! I'll keep checking in and give 4 and 12 week results. If I feel my mental has improved I will note that as well.

Most of all I want to thank everyone here. I basically knew what to expect but everyone's story's, help and advice made it a pleasant journey. Here's to ya! May the new year be kind to everyone effected by Hep C.

Thanks, Rod

Mw2324 · « **Reply #65 on:** December 29, 2016, 02:46:59 pm »

Glad to hear Rod. Best wishes!

elias · « **Reply #66 on:** December 29, 2016, 02:54:32 pm »

Thanks for keeping us updated, Rod

Youre exactly 2 weeks ahead of me. We both have same GT and fibrosis score as well. Placing lots of hope on that Epclusa to clear the HCV and later on lower the fibrosis level. Maybe some of that brain fog as well

From what I've read, the 4-week viral load test after EOT is a pretty good indication of how the post-EOT 12 week will go. So in 4 weeks you'll have much clearer idea.

I've read the Phase III reports on Epclusa. I hope I understood it correctly. There were very few relapses. However. not one of the GT 2 participants had relapsed!!! So thus far we're scoring 100%

Have a blessed new year

Elias

rk · « **Reply #67 on:** February 06, 2017, 10:23:06 pm »

The results come in today. At 4 weeks post EOT my viral load was undetected! Since I was undetected at 12 days anything positive would of been a great concern. My 12 week and final test is in 7 weeks.

After treatment I had some unusual problems. I did not feel very well, thought it may have been a cold sinuses and aches. It was that time of year but it appears sinuses was my big problem. I did little during that time and put on several pounds. Its warming up now and its time to burn off a few lbs.

My platelets got low at 88 but the latest test come it at 125. Other numbers are not that far out of range so it appears my liver is mending. After treatment I had sleep problems. I did not feel well plus lack of sleep made it worst. I managed an occasional nap but that interfered with my night sleep. I just worked with it best I could and now I feel its near normal. Its not great but a lot better than feeling constantly burnt out. That's all for now, wish you all the best. Rod

elias · « **Reply #68 on:** February 06, 2017, 10:31:50 pm »

Congratulation, Rod.

I'm likely to take my EOT+4weeks viral load test next week too.
I've been very on edge about that

My insomnia and a few other emotional disturbances have gotten worse, not better , since i completed the Epclusa. Sleep deprivation is driving many lingering symptoms. Lots of painful childhood flashbacks I wish would stop

Mw2324 · « **Reply #69 on:** February 07, 2017, 07:37:35 am »

Great news rod

rk · « **Reply #70 on:** February 07, 2017, 04:20:28 pm »

Thanks Elias,

I got a script today for anxiety and sleep issues when needed. I gave it to the pharmacy today so I do not have the name handy. My doc looked it up and said its easier on the liver instead of diazepam. I'll have it tomorrow and give you the name if you like. He said its slower acting.

Mw, I just noticed you are cured. Great news, congrats!

elias · « **Reply #71 on:** February 08, 2017, 06:57:42 pm »

Yes rod . Would appreciate name of anti-anxiety med. though docs all too often wont prescribe those for me. Maybe that one has better effect on insomnia. Diazepam doesnt do much lately. Though it does help some

rk · « **Reply #72 on:** February 09, 2017, 02:41:02 pm »

Hi Elias,

I asked my doc for one that was better or easier on the liver than diazepam. He did a search then wrote me a script for buspirone, generic for buspar. It is not in the same family as diazepam which is a benzodiazepine or benzo type drug.

Of course everyone's reaction differs. I tried one 5 mg tab. I was not anxious but had slept poor the night before. I went to sleep but woke early so i am not sure. Next time I feel overly anxious I will give it a try.

elias · « **Reply #73 on:** February 09, 2017, 08:19:46 pm »

Was told Buspar is non habit forming. Unlike benzos and many sleeping meds

rk · « **Reply #74 on:** April 03, 2017, 11:31:03 pm »

My journey started here and now the first phase is over.
My labs come back today and I am HCV undetected.
Now on to the long term healing stage.
Thanks to everyone! I'll be back

Rod

elias · « **Reply #75 on:** April 03, 2017, 11:50:51 pm »

Congratulation, Rod !!!

So happy for you.

And yes, the real healing does begin after HCV is cleared. I'm kinda making list of things I need to change in my life to achieve that

This might be a good thread for people to check in when they reach SVR on Epclusa, given how the thread is titled

Mw2324 · « **Reply #76 on:** April 04, 2017, 08:03:53 am »

Congrats rod

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