Author Topic: Starting Epclusa on Tuesday (Read 210625 times)

Lynn K · « **Reply #300 on:** December 14, 2016, 03:11:05 am »

There are many causes of mildly elevated liver enzymes other than hepatitis c. Have you asked your doctor for their thoughts about the reason you liver enzymes continue to be still somewhat elevated?

http://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/causes/sym-20050830

"Causes
By Mayo Clinic Staff
Many diseases and conditions can contribute to elevated liver enzymes. Your doctor determines the specific cause of your elevated liver enzymes by reviewing your medications, your signs and symptoms and, in some cases, other tests and procedures.

More common causes of elevated liver enzymes include:

Certain prescription medications, including statin drugs used to control cholesterol
Drinking alcohol
Heart failure
Hepatitis A
Hepatitis B
Hepatitis C
Nonalcoholic fatty liver disease
Obesity
Over-the-counter pain medications, particularly acetaminophen (Tylenol, others)

Other causes of elevated liver enzymes may include:

Alcoholic hepatitis (severe liver inflammation caused by excessive alcohol consumption)
Autoimmune hepatitis (liver inflammation caused by an autoimmune disorder)
Celiac disease (small intestine damage caused by gluten)
Cirrhosis (early stages of liver scarring)
Cytomegalovirus (CMV) infection
Dermatomyositis (inflammatory disease that causes muscle weakness and skin rash)
Epstein-Barr virus
Gallbladder inflammation (cholecystitis)
Hiatal hernia
Hemochromatosis (too much iron stored in your body)
Hypothyroidism (underactive thyroid)
Liver cancer
Mononucleosis
Pancreatitis (pancreas inflammation)
Polymyositis (inflammatory disease that causes muscle weakness)
Toxic hepatitis (liver inflammation caused by drugs or toxins)
Wilson's disease (too much copper stored in your body)

Causes shown here are commonly associated with this symptom. Work with your doctor or other health care professional for an accurate diagnosis."

elias · « **Reply #301 on:** December 15, 2016, 06:02:07 am »

By my calculations, the first wave of patients taking Epclusa--outside of the clinical trials-- should be reaching SVR 12 about this time!!!

It was first approved here in USA by the FDA on June 28, 2016.

Wish there were a clearinghouse which records how many of those prescribed did reach SVR 12. So we can know if "real world" results matches up with those in the clinical trials. The success rate in those clinical trials were amazingly high. Lets hope its the same afterwards

Rich1957 · « **Reply #302 on:** December 15, 2016, 06:31:49 am »

Well it's been a minute since I 've been on here . Finished my tx of Epclusa / ribavirin on 10/12. Got my Nov results and everything is great. Going back on 12/21 for my next round of bloodwork. That will be 10 wks after tx. Seems like all I want to do is eat since I finished treatment. But I am feeling fantastic. Hope everyone has the same results as I have. Best wishes to all and a Merry Christmas.

elias · « **Reply #303 on:** December 15, 2016, 07:32:04 am »

Awesome Rich!

Seems you're riding in on that "first wave" i spoke of above...

Strike5223 · « **Reply #304 on:** December 15, 2016, 07:42:05 pm »

Will be done next week

I'll let you know!

Karmarain78 · « **Reply #305 on:** December 29, 2016, 03:44:00 pm »

Glad I found you guys I have been reading the comments and have a little different situation I started took one pill 3 days ago and of all time went to jail for a very old traffic ticket just got out and have been freaking out about missing all I can do is pick up where I left off. Does anyone think this will effect the treatment?

Mw2324 · « **Reply #306 on:** December 29, 2016, 03:55:54 pm »

Karmarain,
If you only took one and are now going to resume after 3 days I think you'll be fine. If it was the middle of your treatment it would be a different story. I wouldn't worry about it too much. One pill isn't going to make a huge impact on the outcome, in my opinion. Best of luck to you!

Karmarain78 · « **Reply #307 on:** December 29, 2016, 04:48:13 pm »

Thank you so much for replying I don't really understand all teams yet, but under your comment on your status is it saying after 4 weeks you were undetected?

Mw2324 · « **Reply #308 on:** December 29, 2016, 04:52:02 pm »

Yes, I need to update it. I was undetected at 4 weeks. I finished treatment on 12/1. I was undetected at 12 weeks with normal liver panel. I'll take the 12 week svr test March 1st.

Strike5223 · « **Reply #309 on:** December 29, 2016, 07:17:14 pm »

Finished 12/21 - got lab draw 12/27. Anticipation!

Karmarain78 · « **Reply #310 on:** December 29, 2016, 09:42:40 pm »

Awesome thank you for explaining that to me and congratulations to both of you

sammantha55 · « **Reply #311 on:** December 30, 2016, 12:47:56 am »

How is everyone feeling post epclusa tx ,any residual side effects .Congrats MW and strike for making it to the finish line .) hope you're doing well and good health continuing into 2017..

Mw2324 · « **Reply #312 on:** December 30, 2016, 09:25:34 am »

Sammantha,
I feel good, no side effects after treatment for me. I sleep better and I'm still tired often but that may be caused by other things. I feel more energy overall, but no problems caused by Epclusa. Did you start treatment yet?

Ineedsleep · « **Reply #313 on:** December 30, 2016, 12:31:06 pm »

Hi I have been on epclusa for almost 4 weeks and I am having horrible side effects I can't figure out how to work this site can someone help me get started with this group is really need to talk about this with other who are going through this to.

Mw2324 · « **Reply #314 on:** December 30, 2016, 12:40:12 pm »

Ineedsleep,
Sorry to hear about your side effects. You can start your own thread by clicking on new topic on the main page, once you select the "on treatment" forum. Then other people can comment. You can receive email notifications when someone responds. And to reply you just respond like you just did.

Ineedsleep · « **Reply #315 on:** December 30, 2016, 12:51:01 pm »

Hello my name is christina. I am almost 4 weeks through my epclusa. At first I was fine. Then I got bronchitis and was really sick. Ever since I got that cold my side effects got bad. I can't sleep. I am having horrible anxiety and a always feel like I'm going to have a panic attack. I went 5 days with no sleep and since I am having such bad anxiety my hair is falling out. I lost 10 pounds and am only 100 pounds. I am scared and need support to finish this medicine. I want to be cured so bad. My gastroenterologist is away till Tuesday. I spoke to the doctor on call about my side effect and they were not helpful at all . He told me I should not be feeling like this and to stop the epclusa. I do not want to stop it so I am trying to get through it. I need a buddy here that I can talk to , so I can get through this. Can someone help me. Also I am having trouble figuring out how to use this forum. I have never been in any forums before.

Mw2324 · « **Reply #316 on:** December 30, 2016, 01:11:04 pm »

Christina,
I completed 12 weeks of epclusa on 12/1. Welcome to the forum. I think possibly your anxiety can be causing your sleepless nights. I've been there. Your sleep is very important right now. I would suggest you talk to your doctor about taking benadryl or another sedative he can prescribe that will be safe for your liver and treatment. I took melatonin and benadryl on treatment and I slept because of those medications. However, there are medications that can mess with the effectiveness of Epclusa so check with your doctor or pharmacist. About the doctor who told you to stop taking it, I wouldn't do that. Unless it's medically necessary for you to stop treatment, I think you should try to control the effects first with something for sleep or anxiety that your doctor approves. Call your pharmacy and see what they recommend. My pharmacy gave me more guidance than my doctor. Try some benadryl before bed. What time are you taking the pill? Have you had any blood work done to see if you are detected or undetected? What condition is your liver in? Feel free to private message me on the forum if you need someone to talk to.

Ineedsleep · « **Reply #317 on:** December 30, 2016, 02:50:10 pm »

Thank you so much for getting back to me. Yes I have anxiety medication and prescribed sleeping meds but it seems they are not as effective as they were prior to starting. I was totally fine for the first 3 weeks and slowly started to feel worse. My anxiety is so bad my hair is falling out. My skin is very dry and I lost about 10 pounds in a month . I don't want to give up. I am just scared. This all started around the holidays. My doctor is away till Tuesday so I am trying. Yeah they have not asked me to come in or anything. I am going in January 3rd to give blood so they can check my levels . I want to find out my viral load and get all the information I see on here. My doctor never gave me any information about my levels. I am only 31 and would like to put this past me . I hope the side effectso don't get worse. Also I have no appetite, I am trying to gain the weight back that I lost. This is just very hard for me. I am so thankful to have been given the medicine. I need to get through it. I find the pharmacy helpful also. I have been getting strange feelings in my stomach almost like butterflies or nervousness. I'm scared to call the doctor again because I think they will tell me to stop the medication. Did you have any side effects like mine.

skpp930 · « **Reply #318 on:** December 30, 2016, 02:58:00 pm »

This medicine has about killed me, I've had every side effect you can think of. Don't let people tell you it's in your head. I've been on it nine weeks. The epclusa will not let anything help me as far as getting through the side effects. I feel been taking clonzapam and now when I take it, it just makes it worse. Everything is reacting bad to it. I'm about done with it. It has started doing things to my brain now. I've been to the ER twice, 2 emergency clinics. One doctor told me all my mucus organs in my body are inflamed. Urinary tract burning, bladder and stomach burning, now my brain is messing with me. My doctor thinks I'm crazy. I'm about done. I don't know if I can be cured in 9 weeks, I've been none detected both times, normal blood. I'm just fixing to take my chance. I dread the withdrawals and pain I'm gonna be n from what this medicine has done to my body

Mw2324 · « **Reply #319 on:** December 30, 2016, 03:01:19 pm »

Well maybe see if the pharmacist can recommend anything for your stomach. My side effects were mainly, chest and back pain, being tired and I had insomnia in the very beginning. I've struggled with anxiety and insomnia before treatment, not so much now. I actually haven't taken a sleeping pill in weeks. Your doctor had to do bloodwork on you in order for you to get the meds so ask him next time you speak with him. It would be good for you to know. On Jan 3rd, I'd ask your doctor to run some extra tests to check everything, since you are feeling this way. I think if you could get your anxiety level down, you'd feel better. Again, I highly recommend you call the pharmacy that gave you the medicine.

sammantha55 · « **Reply #320 on:** December 30, 2016, 03:04:36 pm »

Hi MW, not yet, still training in my new job and it's stressful at the moment but am planning to get going around April, that's my plan, I'm getting a full health work up before starting including cardiac which will follow through after new year, so glad to hear you're doing well, you'll sail into the new year hep free , what a great way to start 2017.. thanks for checking in , your posts are helpful..

elias · « **Reply #321 on:** December 30, 2016, 03:10:38 pm »

Hi Christina:

I am almost finished my 10th week of Epclusa. I have severe insomnia too. And panic attacks as well

It actually began before the Epclusa when I found out I had HCV and the bizarre way i got it. But it worsened on the Epclusa. Sometimes better, sometimes worse. So its been variable.The doctor prescribed diazepam. It does help some but not as much as it used to. So what you're experiencing isn't only you. It's likely a combination of real side effect of med and anxiety about the treatment.

I looked at the journal articles of the large scale Phase III studies on Epclusa. Seems about 10% do report insomnia. But the placebo group report about same. So it is listed as a side effect, but a bit unclear..

It is not grounds for discontinuing the medication!

I joined a gym and vigorous exercise helps some too. But sometimes I'm even too tired to get there.

In terms of appetite, if you feel you can't eat, try soups and healthy juices. Until that settles down some.

I got my 4 week on treatment viral load results a month ago. I was undetected, and the doctor was happy for me. My sleep got better some after that. And a bit less panic too. You're supposed to get the 4 week on-treatment test , to make sure youre taking the medication properly. So maybe ask for that test. You might get an emotional lift when you learn your viral load has gone down dramatically, if not gone altogether

-elias

andrew j · « **Reply #322 on:** December 30, 2016, 03:14:16 pm »

Skpp and Ineedsleep (and Christina),

Are you drinking plenty of water - and eating a bit of something (preferably healthy)?

Exercise can help, too, as Elias says.

skpp930 · « **Reply #323 on:** December 30, 2016, 03:16:36 pm »

I'd have to put a water hose in my mouth to drink anymore, not everyone is lucky with these side effects

skpp930 · « **Reply #324 on:** December 30, 2016, 03:18:25 pm »

Who can exercise this sick? I use to walk everyday, ride my bike, now I've been stuck in this bed for 9 weeks

elias · « **Reply #325 on:** December 30, 2016, 03:22:08 pm »

Can you get a buddy to take long walks with you? Or go to the gym?

skpp930 · « **Reply #326 on:** December 30, 2016, 03:22:58 pm »

I had to take a sick leave, my co. Don't do paid either. Healthy, Im a material handler for a construction Co. 2x4, plywood, everything you can imagine for bridge building. I was in good health except for having Hep c. Now I feel like I'm dying from this epclusa

Mw2324 · « **Reply #327 on:** December 30, 2016, 03:27:18 pm »

Skpp930,
How are you sleeping? I found that when I didn't get at least 9 hours of sleep, my side effects intensified. Just a thought.

elias · « **Reply #328 on:** December 30, 2016, 03:37:40 pm »

Quote from: Mw2324 on December 30, 2016, 03:27:18 pm

Skpp930,
How are you sleeping? I found that when I didn't get at least 9 hours of sleep, my side effects intensified. Just a thought.

Exactly same here, MW!!! With little sleep, everything hurts. With enough sleep, all is well

elias · « **Reply #329 on:** December 30, 2016, 04:40:37 pm »

Quote from: skpp930 on December 30, 2016, 03:18:25 pm

Who can exercise this sick? I use to walk everyday, ride my bike, now I've been stuck in this bed for 9 weeks

There are exercises one can do even while bed-ridden until u get better. I'm thinking of Qi-gong and things like that. they have modifications such that those can be done while infirm..

As far as drinking lots of water. I found too much of that disrupted my sleep, as Id need to go pee all night long. I changed to hot spiced cider. I think its just as hydrating (not sure but i hope so..) and its much easier to do.

I do have sense of burning or dryness of my skin. And especially burning eyes sensations. Might be hydration issue, sleep deprivation, or some side effect. Not sure..

andrew j · « **Reply #330 on:** December 30, 2016, 05:59:27 pm »

Apologies Skpp. I hadn't quite realised that your side effects were so bad.

Your body is going through a huge transformation.

We are hoping that you can hang in there - but you don't want to be actually harming yourself.
You've got - what - three weeks to go?

Some people had a similarly bad time on Harvoni.
These drugs cause - or can cause 'mitochondrial' damage, apparently.
It's just a newly emerging field of inquiry [because these drugs haven't been around for long].

The Harvoni sufferers contacted Gilead, and the FDA, to let them know what was going on.
To be sure - they will be looking into it.

That's hardly of much comfort to you now, of course.

I'm really sorry you are suffering like this.

Hopefully others will chime in soon who know more about this stuff than I do.

Ineedsleep · « **Reply #331 on:** December 30, 2016, 08:14:41 pm »

Drinking lots of water can't drink more I can't pee all day long non stop. Exercise is hard when I can't even leave the house I am in pain and can barely take care of myself right now. I just need to sleep and make the anxiety stop . Taking all kinds of anxiety meds medication to sleep. Nothing is really helping. I'm scared I will end up dedicated to all thee pills while trying to fix this. I don't know what to do . Almost half way through. If I continue to feel this way i can not go on and it bothers me so bad as I feel I am not being strong enough. I just need someone to talk to . It helps to know it's not just me.

andrew j · « **Reply #332 on:** December 30, 2016, 09:05:43 pm »

It's not - or shouldn't be, a matter of how strong (or not) you are.

Lots of people are scanning these boards, and thinking about what you have written - even if they haven't posted yet.

We are with you.

rk · « **Reply #333 on:** December 31, 2016, 12:21:44 am »

Quote from: Ineedsleep on December 30, 2016, 08:14:41 pm

I just need to sleep and make the anxiety stop . Taking all kinds of anxiety meds medication to sleep. Nothing is really helping. I'm scared I will end up dedicated to all thee pills while trying to fix this. I don't know what to do . Almost half way through. If I continue to feel this way i can not go on and it bothers me so bad as I feel I am not being strong enough. I just need someone to talk to . It helps to know it's not just me.

I would not want to see you or anyone give up on treatment. Only then if its medically necessary. Obviously you'd have to start again and maybe with a combination of drugs.

I would try to be creative. Review with your pharmacy & or doctor everything you are taking. Gilead has a 24 hour help line called Onward as well. Its possible there is an interaction with the anxiety med's. I'm familiar with with lack of sleep and the effects. I read a lot on the subject and the most useful was to have a daily routine. From a wake up time, no naps and a set bedtime. Things like diet and exercise all play a roll.

It took time but it kept getting better. Now its OK, not good or poor. Something you might consider is behavioral health or Hypnotherapy. I saw a hypnotherapist for something unrelated and he worked with Lupus patients. They need all the help and will power they can get.

Just trying to throw a few things in your direction. Its sort of a detour, if you will. Your mind is so engaged with issues you seem to be at a stand still. Stay strong and finish.

Before I started I imagined some bad circumstances. I also enforced that clearing the virus was my number one priority. Fortunately for me it was smooth ride. I expected the worst and got near the best.

I wish you good luck, its in your corner. Rod

skpp930 · « **Reply #334 on:** December 31, 2016, 05:35:37 am »

I'm so tired of people playing down what I'm going through. Do you think I want to die? I've called Gilead 4 times, the speciality pharmacy 10 times. I've done everything possible. Did you ever think maybe people's bodys have different reactions. I'm glad you are getting through with yours, and no it's not the anxiety meds. I stopped them, the epclusa wouldn't let them work anymore. I've tried everything. I just hope I get my mind back. This has been a nightmare. You know also, if people had a doctor that tried to help them and listen, that would help alot

skpp930 · « **Reply #335 on:** December 31, 2016, 05:38:40 am »

This epclusa wouldn't let anything else work that I took with it. When you come to the conclusion that your rather deal with Hep c than take a drug to save your life, that should tell you how bad the side effects are

andrew j · « **Reply #336 on:** December 31, 2016, 03:13:01 pm »

It may help if one of you folks experiencing unpleasant side-effects from Epclusa starts a new thread (for example, in the 'On Treatment' section).
That way you will attract in other sufferers (including those that are, or have experienced adverse reactions to Harvoni) ... and people who may have helpful advise or resources to share.

Only a limited number of people will be following this thread.

P.S. I'm so sorry you guys have to deal with this shite.

KimInTheForest · « **Reply #337 on:** December 31, 2016, 09:58:17 pm »

Very sorry to hear about all the problems & side effects you are having from Epclusa, Christina and Skpp. I believe you. I know it is not "all in your head." It's true that everyone does react differently, and some people seem to have loads of problems on drugs that others tolerate with few to no problems.

Christina: regarding weight loss and no appetite, I had the same problem on Harvoni+ribavirin. I lost a lot of weight and was skinny to begin with. My advice: even if you can't get the calories in you that you need, be sure to get good nutrition. Smoothies are a good and easy thing to chuck down you several times a day when meals don't appeal. My smoothies have banana, carrot, berries (if I have them), a little kale, 1 tbsp flax seed, a raw egg (free range), good quality yogurt, and some kind of good organic fruit juice for extra liquid. Other people here were recommending store-bought protein drinks. I didn't like those because label had lots of chemicals. I'd rather just eat real food.

ativan/lorazepam can help with anxiety and is pretty benign for short term use.

lots of people here used benadryl as sleep aid during treatment. i did not find it helped me much. but gravol (for motion sickness) did help put me to sleep.

in general, most people's side effects with these drugs disappear shortly after they finish treatment. so hold that thought in your head and let it pull you through the finish line. do everything you can to make it to the end because at least you will then be free of Hep C.

good luck!
kim

Pepperann · « **Reply #338 on:** January 03, 2017, 02:20:54 pm »

Wow on the intense side effects of the epclusa!
It sounds like Skip & Ineedsleep you are severely allergic to something in the epclusa. Also wonder if something else is going on in your body that you are not aware of! They just came out with a better version of treatment that is suppose to be released soon that you may fair better. I am allergic to everything and would be seriously freaking out if I was having close to anxiety attacks, hair loss or not being able to sleep after one day let alone 5. If you have insurance you may see if you cannot get some answers through a blood panel work up. This is not normal! I hope you two feel better and get some answers and piece of mind! I have 20 days to go and not one negative side effect. My Dr. is PO'd at me because I have not gone in for my 30day blood test. Having the genotype 3a and hearing of people not clearing it out of their system in the first 30, I put out of my mind. I feel in hindsight though, I should of made that a priority for others that are genotype 3a. Going to get my blood drawn now! I will keep all of you posted with my results & Happy New Year to everyone!

Ineedsleep · « **Reply #339 on:** January 03, 2017, 02:29:56 pm »

I went for my 6 week blood today and don't know the results yet. I am so mad at myself for starting this. I was healthy other than the hep c. I have prescribed medso for anxiety and sleep. It's just so hard. I can't even run my business. I don't know what to do. This is crazy.

skpp930 · « **Reply #340 on:** January 03, 2017, 04:40:33 pm »

Yeah, I just got back from the crazy gastro Dr. I've been seeing. He still doesn't believe anything I tell him about how sick I am and is sending me back to work tomorrow. I'm still so mixed up I don't know how I'm gonna do it and keep my job. That medicine messed up my mind.

Strike5223 · « **Reply #341 on:** January 03, 2017, 07:57:39 pm »

Well, I made it through. Last pill 12/21. Results are in for 12 week labs:
HepC - undetectable
AST - 30
ALT - 23
Alkaline Phosphatase - 252
Bilirubin - only slightly above normal

I believe there may be a gallbladder issue, although I have had no problems

However, we seem to have a problem...Serum Glucose - 279(i even fasted) I was prediabetic before treatment (125) What now?!?

And any hair loss issues went away immediately after starting Hair, Skin and Nails(Biotin)

Pepperann · « **Reply #342 on:** January 04, 2017, 07:40:00 pm »

Yay congratulations Strike!!
I am right behind you. Went through my pills and must of ate 2 pills in one night. Dang anybody else do this?Looking back I think I remember the night. I had a slight headache the next morning and contributed it to not enough water! Should I worry about it? Its past tense now. Anyone know? Last day 1/22/16

andrew j · « **Reply #343 on:** January 04, 2017, 08:41:53 pm »

You're doing 12 weeks, aren't you Pepperann?

Pepperann · « **Reply #344 on:** January 04, 2017, 08:54:48 pm »

Hi Andrew, Yes I am on the 12 week plan. I Started October 30th and my end date is Jan 22nd, 2017.

andrew j · « **Reply #345 on:** January 04, 2017, 08:59:08 pm »

You have nothing to worry about, then.

... You wouldn't have if you were on 8 weeks, either - but 12 is of course safer.

Have a nice day!

Pepperann · « **Reply #346 on:** January 04, 2017, 09:05:29 pm »

Hi Andrew,
Are you talking about taking 2 pills in one night? are you thinking it would shorten my treatment thus maybe not being effective. I was thinking taking 2 pills in one night might be toxic and might hurt an organ or something.Do you know anything about that?

elias · « **Reply #347 on:** January 04, 2017, 09:16:56 pm »

Hi Pepperann:

I wouldn't worry about that double dose. It was some time back, and you were ok, except for some mild headache next day. I have fear of doing same thing or forgetting so I put check mark next to list of days on index card

As for shortening treatment, I agree with Andrew here. Its one day less than 84.

In official medical report I've read "non-compliance" was defined as missing 7 or more doses. It's of course best to not miss any or double-up. But I'm sure it's not all that uncommon

andrew j · « **Reply #348 on:** January 04, 2017, 09:18:38 pm »

I agree.

Meds are designed to have a bit of slack in them.
The pharma co's know that people forget doses, inadvertently take two at once, or are late etc. sometimes.

Pepperann · « **Reply #349 on:** January 04, 2017, 09:37:40 pm »

That is good news and makes sense. Thanks you two!

andrew j · « **Reply #350 on:** January 05, 2017, 01:13:54 am »

Skpp,

How did you get on at work?

bluebird · « **Reply #351 on:** January 05, 2017, 06:22:52 am »

Hello! I haven't posted for a while since there was not much going on to report. Today is my last day of taking epclusa, my last pill is in the empty bottle, in the middle of the table as a reminder of a long journey. Actually, three months were not bad at all- the only thing I issued was do not forget to take a pill. Despite I was taking it at the same time and set an alarm on my phone, I had delays in time twice. But it is over now! I hope it is! Yesterday I had my 12 weeks blood test and have another week to wait till I will know the results! I am pretty nervous and anaxious to see the results, but no matter what is ahead of me, I know the first step is over, and without your help and support, dear people from all over the world, it would be more stressful, and more sad and painful road to take. Thank you for being a great support! I wish everyone and each of you do not give up, do not stop taking medication. I will post results next Monday.

Pepperann · « **Reply #352 on:** January 05, 2017, 10:45:17 am »

Congratulations Bluebird!
I am curious as well but it looks like your 8 week check you were clear? Nice! Right behind you!

andrew j · « **Reply #353 on:** January 05, 2017, 02:08:41 pm »

Pepperann,

Just rounding out the above:
I found some material from Gilead ('Epclusa Product Monograph') which seems to take a pretty laid-back approach to overdose.
i.e. essentially watch patient, and check vital signs.
Some patients during trials were exposed to 1200 mg of sofosbuvir, and [others to] 500 mg of velpatasvir - and they were all fine.

Bluebird,

What a sweet message. Thank you!
... and best of luck with your results!

bluebird · « **Reply #354 on:** January 05, 2017, 03:24:42 pm »

Pepperann, for some reason my Dr. didn't order test for viral load and virus count with my 8 weeks blood test, so I don't know what my numbers could be back then. I need to reduce my ast and alt. If they won't drop to a needed range, I am in a big trouble, whichmeans that Drs. need to find another cause... Oh, well. Right now I want to believe that this is over! And everything is fine! And I wish you and everyone good luck and speedy recovery! What a journey...

Strike5223 · « **Reply #355 on:** January 05, 2017, 07:28:18 pm »

Hi Bluebird,

My doctor did not do labs at 8 wks. week 12 results were pretty much the same as 4 wks;
hepc undetected

Strike5223 · « **Reply #356 on:** January 05, 2017, 07:55:58 pm »

Has any one else had a problem with Glucose?

elias · « **Reply #357 on:** January 05, 2017, 08:57:47 pm »

I didn't have problem with glucose. Actually, my glucose level was way lower- 78
after 4-weeks since starting Epclusa. I was pleasantly surprised, but I will ask to retake the basic metabolic panel after this is all over. To make this isn't a fluke.

It is strange coincidence that my glucose level prior was about same as you report here ~101--105. If i were you, I'd ask to repeat that after some time has passed since Epclusa because the jump to the 395 reading in so short a period seems odd.

Could it have been that the 105 reading was a fasting level. And those 2 higher readings while on Epclusa were after a meal or sugar drink? I know vl testing does not require fasting

Might be worth reporting to FDA if this is a side-effect of Epclusa. Not been reported so far as far as I know

HCV viral clearance is often associated with improvements in glucose tolerance

Strike5223 · « **Reply #358 on:** January 05, 2017, 11:24:21 pm »

Thanks, Elias! I hope I don't end up diabetic after all this :}
Will get a fasting glucose as soon as I get my new insurance in place.

bluebird · « **Reply #359 on:** January 05, 2017, 11:34:31 pm »

My glucose serum before treatment was 106, but dropped to 95 while taking epclusa. Let see where it is now next Monday...

elias · « **Reply #360 on:** January 05, 2017, 11:42:07 pm »

Quote

Thanks, Elias! I hope I don't end up diabetic after all this :}
Will get a fasting glucose as soon as I get my new insurance in place.

I doubt it. clearing the HCV generally improves insulin resistance, hence glucose readings. I'm still curious if those 200--300s readings were fasting levels? My hunch is that no

Bluebird wrote:

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My glucose serum before treatment was 106, but dropped to 95 while taking epclusa. Let see where it is now next Monday..

I'm curious how it holds up next week. I'm concerned bout insulin resistance and glucose, because of family history. Quite possible those 100+ levels (just bit borderline..) we had were driven by HCV and with luck may go down and stay down after it clears

rk · « **Reply #361 on:** January 06, 2017, 01:12:24 am »

Quote from: bluebird on January 05, 2017, 06:22:52 am

Today is my last day of taking epclusa, my last pill is in the empty bottle, in the middle of the table as a reminder of a long journey.

Hello Bluebird, congratulations! I did similar except I set all 3 bottles out. Not sure why but I kept them. I kept track on a calendar and checked off each day at 8 am. That way if I thought I may have missed a dose I could count days and pills. In the three months I was late one day by 80 minutes and another by an hour. My 12 week test was negative as expected, its been that way since day 12. Yes its great to have others here for support. It means a lot, for some here options are/was limited.

Its funny how this thread attracts Epclusa users. It was started by Phoenix 17, then Mw2324 started & chimed in. Then MommaT chimed in I believe she started earlier. Then Andrew j, then I come in after about a month. If memory serves me Bluebird you was a week later , then Elias etc. If I missed someone sorry but we are among the first to take Epclusa on this forum. I did not think I was going to qualify for epclusa. But I have a good doc with an excellent staff.

Anyway good luck, its more of a formality, the real test comes in another 12 weeks.

elias · « **Reply #362 on:** January 06, 2017, 01:37:46 am »

Quote

If I missed someone sorry but we are among the first to take Epclusa on this forum.

We're actually among the first to take Epclusa on this planet!! Outside of those clinical trials, of course. .. Phase IV as it's often called. Or "Out in the wild"

A new wave of SVR's should start rolling in quite soon

janice973 · « **Reply #363 on:** January 06, 2017, 05:08:43 pm »

Christina/skipp-- I took sovaldi/riba and came off treatment because of the panic attacks it gave me.... I think the sides I was really having were dizziness, racing heartbeat, and this would send me to the re in a full blown attack. Do you think you're looking into that stuff like I was? And being super aware of everything? I regret stopping treatment because now I have to do it all over again with epclusa. Once I stopped, my viral load went crazy into the millions. I hope if I take xanax everyday I won't have those issues.

bluebird · « **Reply #364 on:** January 10, 2017, 05:17:24 pm »

Hello my friends,

As you remember I finished treatment (3 months of Epclusa) on January 5, and just got my blood results. NOT DETECTED!!! The drug really works!!! Thanks to Gilead, but special Thanks to you, my friends, for support, for being always available and ready to give an advise at any time of a day, for being compassionate and kind to each other. Having an opportunity to share your problem with others and get a support worth more than money could buy. I haven't told to any of my friends or relatives of sickness, my problems and pills I was taking for last several months. I just didn't want to... It was hard to keep it to yourself and only here I was getting all answers without being judged. You were my friends, my family for last three months and I really wish you to slave the dragon asap and back to your routines. I still have elevated ast and alt, but these numbers are not as scary as used to be and it is a matter of a time. My liver was "boiling"under a virus target for a long time (~27 years since my blood transfusion), now it needs time to "cool down". I will post my 3 months "after treatment" results, hopefully I am done with one problem for now! For now, everyone stay positive, magic drug plus your diet and healthy life style will bring you to a rose field again:)
Yours, Bluebird( bird of happiness).

Mw2324 · « **Reply #365 on:** January 10, 2017, 05:31:42 pm »

Right back at ya Bluebird! Wishing you a healthy, virus free life of blessings! Keep us updated!

andrew j · « **Reply #366 on:** January 10, 2017, 08:29:32 pm »

This is good news, Bluebird!
We're rooting for you. You know that!

bluebird · « **Reply #367 on:** January 10, 2017, 10:57:55 pm »

Thank you, MW and Andrew!!!

Pepperann · « **Reply #368 on:** January 11, 2017, 01:40:23 am »

Congratulations Bluebird & Mw!!!! This treatment is amazing and even if you don't clear the virus in the first 30 days it eventually clears! It seems to take longer with the genotype 3a. I'm so glad to hear you are viral load 0!!!! This is most awesome news and thanks for sharing your experience and journey so others have something to Guage and look forward to! I wish all of you many healthy years!!!!

bluebird · « **Reply #369 on:** January 11, 2017, 08:15:04 am »

Thank you, Pepperann !

You are just two weeks behind me, please, let me know your final results! We are both gene 3a... Wish you the best!!!

andrew90 · « **Reply #370 on:** January 11, 2017, 09:29:19 am »

i have about 15 more days till EOT! Genotype 3a was still detected at 5 weeks! hoping my 12 is undetected. awesome guys!

Pepperann · « **Reply #371 on:** January 11, 2017, 10:25:31 am »

I finally went yesterday to get my first blood draw. I dread having my blood drawn. They call me a humming bird. Have to use a child's needle, heat pack, and tourniquet etc. can be up to 5 try's yesterday was only 2. Where I'm going with this is the excuse why I have not gone in to get a blood draw so late in treatment. Really no excuse but hoping for a good out come! Felt physically good during treatment except was sick with the typical flu and colds going around. Unusual for me. I will post my my results as soon as I get them!! The other reason is with Andrew, Bluebird, & Strike all 3a like me, not clearing in 4 weeks I put it out of my mind to my Dr's dismay. I feel physically great and have been to tired in the past to excersize! Looking forward to being more physically active! 10 days to go!

bluebird · « **Reply #372 on:** January 11, 2017, 06:29:39 pm »

Pepperann,

10 day is nothing! it feels so good to get stress away from remembering of taking a pill. I am pretty sure you will be undetected at the end of treatment just like me, but I had 8 mil to start with.. I have tiny veins like you and I always ask them to use a "butterfly", and it goes painless and "spotless". I think because 3a is uncommon genotype in the USA ( most common is 1a) they didn't do a lot of research on people with this type of gene, because they didn't have them available. I am a Caucasian woman, but I got this Asian type 3a through a blood transfusion. (go figure...). Anyway, good luck to you!

Pepperann · « **Reply #373 on:** January 12, 2017, 12:36:15 am »

Thanks Bluebird!
I'm hoping I'm undetected! Blood transfusion for me to. I ask for the butterfly but my veins are deeper. I just have to drink tons of water! Looking forward to being more active. Use to enjoy hiking, tennis and skiing. Haven't had the energy last couple of years. Been healthy but the virus was escalating starting liver damage. So grateful to to be on the forefront of treatment! My energy level is so much better than before treatment. I am so looking forward to putting this sadness behind me. When I first found out I had hcv I was devastated, and isolated myself. I went from social to partial recluse! It stole a little bit of my thunder and I was tired! I changed my diet to support my liver and that seemed to help with the inflammation but not stereotype. I told very few people close to me. As time went on I healed emotionally and this treatment is just the icing on the cake!

Pepperann · « **Reply #374 on:** January 12, 2017, 12:56:53 am »

Andrew , Bluebird, Strike, MW, I will post my blood test as soon as I get it.

Strike5223 · « **Reply #375 on:** January 12, 2017, 01:00:20 am »

Fingers crossed

Pepperann · « **Reply #376 on:** January 25, 2017, 01:22:48 am »

Wow finally got my blood work back today! Non-detected! Hallelujah! Just finished last day of treatment on the 1/22/17. My alt and ast liver functions are normal! Great to finally have this monkey off my back!

Pepperann · « **Reply #377 on:** January 25, 2017, 01:46:36 am »

I am grateful for my health today and also for everyone who shared on this thread!

elias · « **Reply #378 on:** January 25, 2017, 01:55:41 am »

Congratulations Pepperann on finishing treatment n being undetected!

I finished over a week ago. I have appointment for viral load at EOT+4 weeks.

Strike5223 · « **Reply #379 on:** January 25, 2017, 09:11:26 am »

Congrats, Pepperann!

My doctor does not do 12 EOT, he does 6 months. He wants to be certain it is really cured. In the meantime, my sugar remained at 395 even 10 hours fasting,

Going to doctor today for insulin - I hope this is a temp side effect of Epclusa that will go away.

Pepperann · « **Reply #380 on:** January 25, 2017, 06:13:23 pm »

Well that sucks! I hope it passes soon. On the upside there are amazing articles on the metformin (used for insulin resistance) and how it adds years to your life for other reasons.

andrew90 · « **Reply #381 on:** January 25, 2017, 06:36:18 pm »

Quote from: Pepperann on January 25, 2017, 01:22:48 am

Wow finally got my blood work back today! Non-detected! Hallelujah! Just finished last day of treatment on the 1/22/17. My alt and ast liver functions are normal! Great to finally have this monkey off my back!

Great news! i just finished and had my blood drawn today hoping for UnDetected!

bluebird · « **Reply #382 on:** January 26, 2017, 11:03:48 am »

Congratulations, Pepperann! I am happy for you! Stay healthy and happy!))))))

bluebird · « **Reply #383 on:** January 26, 2017, 11:07:16 am »

Andrew, congratulation on finishing your treatment!!! I am pretty sure your blood test will show " undetected" like mine and pepperann - we all gene 3a, and first 4 weeks test showed "detected". Good luck and will be waiting for your posted results!

curlygirl · « **Reply #384 on:** April 12, 2017, 12:41:27 am »

Hello,

I am starting Epclusa on Thursday. If anyone still writes on this forum, because it said no one has written on this for 60 days....but if people still write on this, any idea what time of day would be good for me to start taking my dose?

Thanks so much!

elias · « **Reply #385 on:** April 12, 2017, 12:56:42 am »

Hi curlygirl

I finished Epclusa. Was told it didn't much matter the time, as long as you take it same time every day--more or less.

A few do get insomnia as a side effect. So some of those shifted the schedule to take it earlier in the day. it isn't hard to do that shift, as long as you do it gradually.

Seems most didnt get insomnia from it.

Best wishes with this

andrew j · « **Reply #386 on:** April 12, 2017, 01:26:03 am »

Hi Curlygirl - and Welcome!

Most people seem to prefer taking these meds. earlier in the day - either with breakfast or with lunch, because they can boost energy (as Elias indicates by making reference to insomnia).
The meds. have a dehydrating effect - so it's a good idea to drink plenty of water while you are on treatment.

Best of luck!

A.

rk · « **Reply #387 on:** April 12, 2017, 02:35:19 am »

Quote from: curlygirl on April 12, 2017, 12:41:27 am

Hello,

I am starting Epclusa on Thursday. If anyone still writes on this forum, because it said no one has written on this for 60 days....but if people still write on this, any idea what time of day would be good for me to start taking my dose?

Thanks so much!

curlygirl, I started taking it at 8 am for that reason. I had some sleep issues but I think its more of an individual thing. If you have sleep issues I would suggest taking it in the am. When I started I was a bundle of energy, it clearly was better for me to take in the am. Another side effect is brain fog, for me it was in the first two weeks. That happened more after taking it and less as the day went on. It effected a clear train of thought. For me it basically went away. I did not have any other side effects.

Mw2324 · « **Reply #388 on:** April 12, 2017, 06:23:32 am »

Curlygirl,
I work alot so I chose to take it at 5pm. It did not give me energy. It was like a sedative for me and put me to sleep. So it's best to decide what works best for your schedule.

curlygirl · « **Reply #389 on:** April 12, 2017, 01:21:36 pm »

Thank you all SO MUCH! I'm still not sure if I should start when I wake up or maybe 4:00pm, 5:00pm or 7:00pm? I'm a vegetarian, try to work out several times a week and try to be healthy. If I pick a time, for example 5:00 pm and I don't like it, am I allowed to switch to the morning?

I don't usually have problems sleeping. Some people say it makes them SO tired and some say they get energized. I understand everyone is different but it's so confusing (and scary).

My blood pressure has always been 110/60 or 80. Recently it's been between 155 - 169/110. Guess I'm freaking out inside.

I keep telling myself it's going to be fine. I'm trying not to live in fear.

Thank you Andrew, Elias, rk and anyone else I missed for your support. Very comforting and much appreciated! Tomorrow's the day - YIKES!

curlygirl · « **Reply #390 on:** April 12, 2017, 01:28:01 pm »

Sorry I missed you Mw2324. It was like a sedative for you - interesting. I wonder if I should take it before bed? I have no clue when to take this. I can't change the time at all? Ugh

rk · « **Reply #391 on:** April 12, 2017, 02:17:24 pm »

I have read on this forum that a person or two changed the dosage time by an hour each day. They did so to change their dosage time. I doubt an hour or so makes a difference. Epclusa has a program called onward to help. Also the pharmacy or doctor should be able to answer those type questions. So relax try not to get so worked up. Think positive, you know what is best for you. If its not you'll cross that bridge later.
The positive is you are going to be cured and get on with your life.

Mw2324 · « **Reply #392 on:** April 12, 2017, 02:24:51 pm »

Yes, you are able to change your time by moving it forward or backwards an hour each day. So if you pick one and don't like it, you can just change it.

andrew j · « **Reply #393 on:** April 12, 2017, 05:43:05 pm »

... It really doesn't seem to matter.
What matters is that you remember to take it at the same time each day (and try not to move it in the latter part of the treatment).

... Maybe 5 p.m would be good ... or lunchtime? - so you can easily move it backwards or forwards if you want or need to?

Anyway - I was taking Harvoni, not Epclusa - so I should probably just tune out of this!

There's nothing to be afraid of - really there isn't ... and there's lots of support here if you need it, as you can see!

Florida67 · « **Reply #394 on:** April 14, 2017, 02:11:49 pm »

Hi I am also getting ready to start with the Epclusa treatment.
But curious to know if any of you have had Hep B in the pass?

As in 1973 I was diagnosis with B and if you read the paperwork in the envelope it states...........WARNING.....if you have had Hep B or carry the virus, talk with your doctor. The risk of the hep B virus becoming active is raised with this drug. A few times, this has led to very bad liver problems or and here comes the punch line.....death............bingo........

Talk about scare to start..........

I would appreciate any and all input as it is Holy Friday and no doctors in sight....

I like some of you am learning how to navigate around this forum.

Thank you all and good luck to us............

elias · « **Reply #395 on:** April 14, 2017, 04:12:47 pm »

Of course its wise to talk bout this with your prescribing physician.

But since you're panicking bout it, have a look at this symposium podcast . Just to help put that in perspective. The participants are top level researchers in the field:

http://hosted.medipix.com/aasld2016/

The part dealing with Hepatitis B co-infection is I think towards the end of the podcast. ~58:10 . It goes on for a while there..

curlygirl · « **Reply #396 on:** April 14, 2017, 05:57:23 pm »

Hi Everyone - I tried to log on yesterday but was having difficulty. Anyway, I took my first Epclusa pill last night at 7:00pm. I felt a little heaviness in my head and started yawning around 8:30. I figured great, no problem sleeping tonight. However, I went to bed around 10:00pm and could NOT sleep at all.

This morning I called my doctor and my pharmacist. I asked if I could take my pill today at 10:00 am since I've only taken one pill so far. They both said YES. So I took my second pill this morning at 10. I've been feeling great. No pains, no brain fog - it's been a great day. Hopefully it will continue like this.

Good luck to each and every one of you! Thank you ALL for your support and kind words. Talk soon ( if this let's me log in - lol) XO

Gaj · « **Reply #397 on:** April 14, 2017, 08:09:46 pm »

Hi Florida67,

Here are a couple of blogs from Lucinda Porter regarding HBV reactivation to add to your reading as well.

https://www.hepmag.com/blog/hepatitis-c-treatment-put-risk-hepatitis-b-reactivation

https://www.hepmag.com/blog/hepatitis-c-treatment-and-risk-of-hepatitis-b-reactivation

A basic summmary is that you will need HBV antigen/antibody tests to determine whether you are currently at risk of reactivation. Should that apply in your case then you will need regular monitoring (or possibly HBV suppressing medication) during HCV treatment to ensure early detection should it occur. It is important that you discuss this with the doctor who prescribed you Epclusa before commencing treatment.

While I understand this may be worrying for you, please keep in mind that the number of occurrences that triggered the FDA warning was relatively small in proportion to the numbers treated and now we are aware of it appropriate measures can be put in place to avoid the risk of this happening in your case.

elias · « **Reply #398 on:** April 27, 2017, 04:21:41 pm »

Hi Epclusa Family:

I am Not Detected at 12 weeks after completing Epclusa. So I have achieved SVR-12

I'm mostly concerned now with lowering my high fibrosis score. Even if only by one level...

Sleep remains a serious issue as well. Insomnia is chronic thing with me. But was much exacerbated when I learned I had HCV. Went through the roof during the Epclusa treatment. And seems to be dragging on months after completion of the treatment.

Mw2324 · « **Reply #399 on:** April 27, 2017, 05:22:18 pm »

So awesome Elias! I'm so happy to read this. I hope you find a balance with your insomnia. I know how that feels.

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