Hep C Discussion Forum

Observer · Guru

RE: Need advice on epclusa

5-1-18 · Guru

congratulations Mike on your UNDETECTED status...woohoo

Tig · Admin

Congratulations, Mike!! That’s the kind of update we love to hear about. Fantastic!

Continue to hydrate and remember, recovery takes time. Don’t over-do it. You’ll be back on track soon enough, and that brain fog will improve as well. Good job!

Mike2127 · Member

And yes observer slowly but surely its not as painful or tiresome to do things before its painful to work go out and do things was becoming a serious struggle. Im so happy. I finally got the courage to get on this treatment. And I feel. Like I did it just in time before it got a lot more Serious, the past 2 years my energy level dropped a lot that was a big wake up call for me, glad u can make up the stairs now and go for walks!

Mike2127 · Member

Hello everyone! Update my labs from December were borderline. Still detectable, my labs from last. Week, one week off of epclusa, all 3 bottles down, show undetected :), still feeling this brain fog, not as intense as a month ago. But still here. Hopefully it fades with time! I hope everyone is doing well, With there healing journeys, its also been 3 months sense Ive had any alcohol probably. Going to keep the sober thing going health is wealth. Thanks again for helping me through this first part of the journey, glad. I didnt stop after one bottle!

Observer · Guru

Yay mike. Super proud of you for being consistent, drinking lots of water (interesting discovery about the alkaline water..yay) and finishing your first bottle

please pop in and let us know when you get your bloodwork done.

im so glad you are already feeling a bit more energyyou are going to be amazed at the difference when you are all done. The changes can be subtle but they are very welcome. For instance, I found I would realizewow, I walked an hour and actually dont have to recover from it.. or omg I walked up the stairs!! haha I was so sick I had been crawling up for years most of the time.

anyhoo have a great weekend with your kids

5-1-18 · Guru

Hi Mike,

I'm glad to hear you are getting through this well enough and that you notice a bit more energy for your weekends.

I'm excited for you to get your labs this Saturday and hope you let us know how it's going.

5

Mike2127 · Member

Thank you all for your advice, your knowledge and experience on this is whats keeping me going, nice to meet all of you as well! 1 bottle down :), as for side affects the head aches are very mild at this point and dont last long, the fog stil comes and randomly goes, its more of a delayed reaction time with random situations I kind of space out and for a few seconds, not a thing I have ever done before this, and I stop and drink some water it definitely helps I have even noticed the alkaline water helps how I feel even more then drinking like Poland spring bottle water. I have. Been trying different ones and notice a positive difference with the alkaline, random chest pains sometimes not extreme more like heartburn, but that also doesnt last. My skin and eyes a little bit of jaundice this past week. I think I go for blood work this coming Saturday but over all I still feel more motivated to do things on the weekend with the family now. Even with the fog. My energy level has increased:).

Iris Dragonfly · Guru

Hi Mike!

Good to meet you.

The water thing is important on many levels, found out it is recommended to consume sufficient water each day can prevent a stroke, being dehydrated is dangerous.

Keep on taking the Rx, I believe the extended treatment is to be sure it will not relapse, like with antibiotics, you can't do them just until you feel better, the full course is needed to really knock it down for good.

Looking forward to your post that this dragon has been slayed!

blessings Iris

Observer · Guru

I second tigs advice you very likely will get und after a month but as tempting as it might be don't stop treatment early.. HCV is a tricky determined mutating virus and you want to destroy it completely. You are slaying a dragon

the brain fog sucks , sorry youre getting it still. taking a 10 minute rest to redirect and rest your brain is a good idea. Walnuts are good brain food, maybe eat 2 or 3 when youre pulled over for your brain break.

Mike2127 · Member

Thanks tig, I will continue to troop it out, just having a moment of doubt I guess, and I definitely dont want this thing coming back stronger if I stop early thinking that Ive got it beat early, and yes observer the water does make a big difference, almost like before all this I was probably dehydrated a lot of the time just didnt realize it.

Tig · Admin

Hi Mike,

No matter how you’re feeling right now, don’t entertain stopping treatment early. If you do, you will cause the virus to develop mutations making it even harder to destroy it. You may have an undetectable viral load after 4 weeks, but you need all 12 to destroy it. It takes time to reach all the nooks and crannies your body hides the virus. Most insurance companies will deny you treatment if you stop prematurely. It’s a BAD idea, please don’t do it. People think it’s a good idea, only to be sadly disappointed. It takes 12 weeks of exposure to kill it. Stay the course, it’s not that long, and your life is worth it…

Mike2127 · Member

I am pretty sure I do blood work at the 1 month marker, so in 2 more weeks, Ill have week 2 done this Sunday, the Brain fog hits hard randomly, sometimes I question myself if I should be driving, Ill pull over take a 10 min break, the head aches still coming and going. No new bumps at the moment, a little pain in my left lower abdomen feels like a pulse feeling randomly, random thought about this, and has anyone taken this drug just for a month and dropped there viral load to UD, and it stayed that way? I dont know if I see myself doing this for. 10 more weeks, just random worries about long term side effects, and maybe taking the drug that long is not needed in my case?

Observer · Guru

Yay mike,

1 week done Im glad the healing powers of water are helping you so effectively. Its pretty awesome when a glass of water gets rid of a headache almost immediately like that. its a good habit I still drink a lot of water.

The brain fog is not fun to deal with, I hope it is brief for you..

I found many of the side effects would evolve, as soon as one thing lessened , another would start but seeing that UND blood test is the best feeling.

when do you have bloodwork done?

Tig · Admin

Hey Mike,

One down and 11 to go! You got this my friend, I have no doubt. Trust me, the "haze" you speak of is normal. In the Hep C treatment world, we call that "brain fog". It affects almost everyone I know. For some reason these medications, new and old, causes it. Now I have to be honest, I still have issues with it, but that could be my age talking. I find myself walking from room to room wondering why I walked in there, lol! My best advice is to be conscious of it, and take notes if it becomes an issue. I had post-it notes everywhere!

You work a long day and while it's good for the paycheck, it's a tough thing to deal with every day. If the paycheck can handle the loss, let me suggest taking time off when you can. I know UPS is coming into crunch time for package delivery, so I'm sure time off is a tough thing to request. Just take care of yourself as best you can, and drink water like there's no tomorrow. Water is the single most important requirement you have right now. The fact that you can relieve the headaches by increasing consumption tells me you will benefit greatly by bumping up your intake.

The bumps on your arm and side sound like a common rash that pops up occasionally during treatment. Some treatments, especially those that include Ribavirin are notorious for it. If it starts to become a problem, by all means, call your health care provider. Hydrocortisone and Calamine lotion were my go-to treatments. I also found Caladryl lotion worked well when it got itchy.

Hang in there man, this will be over before you know it.

Mike2127 · Member

1 week down of epclusa treatment, its going better then I thought it would, I still have the feeling of being in a haze, not as strong as the first few days, still getting head aches they hit hard the first 2 hours after taking the epclusa and slowly dissipate through out the day, my body energy is about the same but I have noticed my mind feels more awake like I have more motivation to do things. Still working 530am to 640pm 5 days a week the water definitely helps get me through the work days, Friday around 3 I had a head ache and then slight chest pains, drank a bunch of water and it went away, a few large. Pimples popped up out of nowhere 1 on my arm and one on my side and leg Ill keep an eye on those. I put some aloe hydrocortisone on it. Hopefully that. Goes away. -mike

Observer · Guru

I can relate to the feeling odd .specially the first few weeks.
I was on different meds and schedule then you are on. I had to take them exactly 12 hours apart so the level of meds never went down and that included ribivaron which had a host of side effects of its own. I swear I could feel the drugs coursing through my body sometimes,

are you able to get some rest? 4 kids and a driving job is probably pretty demanding of your time, I really hope you can balance your busyness with some healing time.
Driving/delivery must be very draining you have to be so constantly alert and aware. I sure couldnt do it but am very grateful to people who can.

cheers

Mike2127 · Member

Yes 12 weeks does seem like a ways away from where iam at now, still drinking a lot of water. Head aches coming and going a little bit of the Brain fog. Vision a little blurry at times up close, as far as energy goes I feel awake and fine even at work today. Just a weird feeling as well kind of like iam in a dream feeling, I dont really know how to explain it, And wow thats scary about the tumor thank god you were on top of the blood work!

Observer · Guru

mike,

12 weeks does seem daunting but you really will be glad you did it

getting rid of the dragon while your fibro score is at 0 is such a great opportunity

I was level 4 with cirrhosis (a very sick puppy) I did 12 weeks of treatment got my first undetected after 1st month unfortunately I did get a tumour about 6 months after treatment but theres no saying I wouldnt have gotten the tumour without having had the treatment (and probably more aggressive ) and. because they were monitoring me through frequent bloodwork for the first year of they caught it and zapped it PDQ.

Im glad you can enjoy your coffee.. not sure about the brand of water but as long as it can hydrate you and flush stuff out its great that you are acting on the water advice. When I did get headaches , I always drank extra water and often I didnt even need pain relief

Tig · Admin

I’m not familiar with your brand of water, just be sure to get all the essential nutrients that quality sources provide. You can achieve your recommended intake in a number of ways, juices, coffee, tea, etc. Just remember to do it, every single day!

The first few days you may experience some mild side effects, many don’t, ymmv. Tylenol for any aches or pains should you have any, and always drink extra water if it happens. Consider the first week of treatment as a period of adjustment. Epclusa is destroying some serious Dragon ”Tail”, lol! Things will level off for you soon. Take care of yourself, eat well and hydrate, Epclusa will do the rest.

Mike2127 · Member

Well thats good news I do love the morning coffee, as for water does it matter what kind? iam currently drinking body armor alkaline ph9+ My tap water here is not good to say the least, and day 1 of 12 weeks started this morning, havent felt anything besides a slight head ache after the first 2 hours. Put down a liter and half of water so far so good!

Observer · Guru

Hey mike

great idea to get started, hopefully you wont feel overly tired with work.
drinking tons of water really makes a big difference to all the potential side effects.

many studies have said coffee is good for livers, so you dont have to give it up

Mike2127 · Member

Thanks tig, Ive been starring at this bottle for a week, iam going to take my first one in a few hours, now I just have to hope. I will still have energy for my job, very physically demanding , I am a package delivery driver for ups, I will definitely keep up with the water, and maybe switch to tea in the am instead of coffee. I will keep you posted, thanks -mike

Tig · Admin

Hey Mike,

Sorry for the delay. Many people here have been vaccinated for HBV and success is measured by antibody response. A positive antigen test indicates an active HBV infection. I have no knowledge of anyone here experiencing a HBV relapse after any oral DAA treatment. Anyone in question would be monitored during treatment. If you can sit down with your doc, and discuss your care plan, you’ll feel better about it. These new treatments are fast and very effective. Bad side effects are rare. The best way to minimize anything like that is to faithfully drink 3-4 liters of water everyday through treatment.

Mike2127 · Member

*hep b surface antibody ql, Not antigen and. Not core Anyone with experience or advice let me know!

Mike2127 · Member

Hey everyone, Ive had hep c 1A for 12 years. I currently have 0 fibro, I work a very physical job 14 hours a day. Four kids. Iam 35, iam here because I need advice about epclusa, Ive read good things and bad things, getting cancer post treatment is what scares me the most! In my blood work I have the hep b antibody, my doc said I was either vaxxed for it as a kid, or had it and got over it, what worries me is the big warning on epclusa is that it can reactivate hep b, so my question is has anyone els here done treatment with this hep b antibody non active infection, and how did treatment go? And post treatment? My worst fear is I do this. And become ill and cant support my family thanks -mike

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