Started Epclusa After Failed Sovaldi Geno 3

[sherfire]

I took Sovaldi with Riba about 16 months ago for geno-type 3a. It failed and I had horrible side effects that forced the doctors into making me stop treatment after 18 weeks. The first couple of weeks I felt great and then I couldn't sleep. I was losing my mind with anxiety and depression. My eyes, skin, and throat burned. Developed crazy hemorrhoids that had to be surgically fixed. Started having trouble breathing and began to get bad chest pain. This is about where I got really scared and wanted to stop the treatment at that point. There were a ton of other side effects. It was horrible.

But the virus had been beaten back enough to where I genuinely felt much better. At least, for a while. Then slowly month by month the disease kept chipping away at my energy until I was back to being mostly useless. I did manage to bang out another year towards my degree while I was feeling better.

Now I've started Epclusa with Riba for a 12 week course. I started it this morning and after about an hour I had to lay down. Tinnitus started going off in my ears and I felt really dizzy. I laid down for a couple of hours and drank a bunch of water. Felt better after that. Tonight I have to take my Ribavirin. Epclusa is only in the morning.

So, I'm not really all the excited about doing this all over again. I hate doctors. Doctors have given me more problems in my life than they have given solutions. Doctors are constantly misinformed about conditions, symptoms, and side-effects to where they seem to be unable to diagnose in many cases. I mean they sent me for a colonoscopy and many other procedures while in my 20's when I had a dairy allergy. I figured out the solution and when I told me DR then they tested me and voila. Allergic to milk. But had I not figured it out on my own then I would have maybe spent even more years bed ridden and sick.

Then for my epilepsy, they prescribed me probably 20 different pills over the years. Most of which didn't work. One of which nearly killed me. Many of which had intolerable side-effects. Then I found a solution outside of western medicine. No more seizures. No more 500 dollars a month in medication costs.

I hate doctors in this country. When I lived overseas I had faith in the medical system. I felt taken care of. I felt that I was in the care of a professional whose primary goal was care. My doctors here mostly feel like they finished medical school so they can claim status and coin. I've had doctors lie to me, misdiagnose me, run unnecessary procedures on me, and even threaten to have my drivers license taken away when the DR hadn't the power, reason, or method to do so.

Anyway, i digress.

I took Sovaldi the month it came out. I was a guinea pig. The drug failed. I failed with the drug. However you wanna look at it. I didn't have much chance at success with geno 3, anyway.

Now I'm gonna do this all over again. The guinea pig with Epclusa. Hopefully my testicles don't fall off or develop hot dog finger along the way. I'll keep this thread updated with my developments.

As of day 1, I felt sick. Dizzy, ringing ears, buzzing in my brain which felt like my seizure aura, slight pain in my liver area, and shooting nerve pain originating in my neck and running down my shoulder into my left arm. Most of this subsided after a couple of hours from onset. About 3 hours after taking the medicine. But I know this story. I know how it goes. I feel ok for a couple of weeks and then I can't sleep for months. etc.

Before starting this round of medicine I visited with a couple of GI's. They were both under the impression that the Ribavirin was the harder of the two drugs to deal with. One told me that the side effects of the Riba are WORSE than pegi. She told me that for years she suspected that many of the side effects her patients had were from the Riba and not the interferon. Turns out she was probably right.

Anyway, I'll keep you posted on any new developments.

[sherfire]

Hey folks. So, I managed to have a productive day in spite of feeling pretty ill for a few hours after taking my morning dose. I took my second Ribavirin dose this evening around 10pm. I was sleeping and my "take your dose alarm" went off. Got up and took the pill and drank a big glass of water. Went back to bed and just now woke up. I feel ok aside from a bit of feeling flush. I did pee a geyser when I woke up.

Anyway, things are going well so far about 20 hours into treatment. I'll update after I take my morning dose which includes Epclusa.

I hope people out there share their experiences as well because the DR's seem to be a little unaware of most of the potential side effects. All of our bodies react differently. In fact, just this year there was a big study published about the effects of Hep c on the brain. Most of that information was previously unknown. So, only a few months ago, researchers discovered the mechanism by which the virus passes through the BBB. They discovered different brain chemistries that are effected by the virus. There were a lot of previously unknown discoveries that led researchers to conclude that yes Hep C does live in the brain. The RNA of the virus is different than what they find in our livers.

My point is that please share your experiences so that the millions of people out there who don't know if the symptoms they have are being caused from the medicine can find some answers.

My other point. When we all get healthy again we should organize an march on Washington and force our gov. to regulate the medical industry so that we all have access to what shouldn't be considered a commodity - Good Health!

Here is a link to one of the studies I mentioned.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4840160/

[sherfire]

Just wanted to add this info as it is pertinent.

I'm in my late 30's. Not in the best of shape. I am physically active but I'm overweight by about 80 pounds. 6'2" at around 270 pounds. I have epilepsy and a chronic food allergy to a common food - cows milk. Both of those issues can wreak havoc on me if I do the wrong things.

Was a smoker for 20 years or so. Quit smoking only about 6 months ago. During my last treatment I was smoking. This treatment I am not.

I seem to have a delicate eco-balance in my body. I seem to have the worse reactions to most drugs. I am allergic to Lamictal and that drug nearly killed me.

I eat very well and take multi-vits, B complex, and probiotics. I do get exercise daily.

One thing quick. Vitamin B COMPLEX is your best friend while dealing with Hepatitis!!!!!!! I did the coffee thing for a decade and when you drink coffee you put your body through hell. Detox off the coffee and take Vit B Complex every day. After a few weeks you will likely see a huge improvement in your overall stamina and sleep much better! You'll also likely notice other significant improvements in your overall health.

[BillT]

Hi Sher,
           Sorry to hear about all your problems.A lot of people have had serious problems with the riba,and some have even had to come off of it.The Epclusa is fairly easy from everything I've been seeing.Anything is better than the interferon.That one damn near killed me.The tinnitus has been mentioned by several people.Hopefully you have a easier time on this treatment.Keep us posted and drink lots of water.These meds dehydrate you and it helps with some of the side effects. 

[sherfire]

Hi Sher,
           Sorry to hear about all your problems.A lot of people have had serious problems with the riba,and some have even had to come off of it.The Epclusa is fairly easy from everything I've been seeing.Anything is better than the interferon.That one damn near killed me.The tinnitus has been mentioned by several people.Hopefully you have a easier time on this treatment.Keep us posted and drink lots of water.These meds dehydrate you and it helps with some of the side effects.

Thanks for the support. The ringing ears really isn't a big deal at all. I spent my life working at music concerts and that sort of thing. Ringing ears is pretty normal for me. But the depression and feeling flush. And the shooting pains. I forget what that's called.

Took my morning dose about 50 minutes ago and already feeling miserable. Shooting pains again, ears ringing, sweating but I feel cold. Flu-like I suppose you'd say. Meh... at least on the sovaldi I had two weeks of feeling good before I became really sick. Seems like I'm picking up with Epclusa where I left off with Sovaldi.

I was reading about all of the ways in which this virus changes our bodies. It's possible that some of these symptoms aren't directly from the medicine but have something to do with the disease being killed. I kind of take solace in that idea.
Going to lay down. Will update tonight.

[BillT]

A lot of people seem to have the roughest time for about the first few weeks of treatment Sher.Keep at it and hopefully it will let up for you.

[Phoenix17]

Welcome sherfire!
I am 10 weeks into Epclusa. I had some headaches and fatigue for the first couple of weeks. The headaches have gone away. Drink about a gallon of water a day, it helps with the side effects! Other than that,Epclusa has been a easy ride.The first 2 weeks were the hardest, then it settled down. I am not on riba, but I have heard that it's not a fun medication to be on. You can ride it out though! It will be well worth it.
You are right when you said that a lot of the symptoms that you have are from the hep, not the drugs. I still take naps as the fatigue is still with me.You need to do things like that to heal your body! I had some lower belly pain prior to treatment and it's gone. I still have some joint pain, but its getting better.
Remember, you are on some very powerful drugs.It will take some time for your body to get used to them. Hang in there! Water, naps and knowing that you are being cured goes a long way!

[Mw2324]

Hi Sherfire,
    I am on week 11 of epclusa, no riba for me. It is tolerable but I also feel the shooting pains in my chest and back after taking the pill. I haven't found too many others who have felt this. It's not everyday but more often than not and sometimes carries over to the morning (I take my pill at night). The combo with riba may be a little different but I hope everything is easy for you. There are good days and bad days, but all worth it!

[sherfire]

Thanks for the support, folks. Glad to hear you guys are closing in on the end of your treatments. I hope my treatment goes as well as yours.

This morning I woke up around 5am. I took my medicine around 10am and I was out a couple hours later. Slept all day and just woke up about an hour ago. So, I slept another 8 hours. I'm sleeping a lot.

This morning when I took my medicine I started getting those feelings. Seizure aura, shooting pains, depressed feeling. After about 90 min though, those side-effects started to subside. They didn't feel nearly as bad as they did the day before. Then I passed out.

When I woke up this evening, I had some discomfort in my lower abdomen. Went to the potty and everything was very dark black colored. Figured this may be important to mention in case someone else is experiencing this and is wondering if it's normal.

I just took my second Ribavirin about 45 min ago. Too early to tell if it's going to make me feel bad.

So far so good. The first day it was a little hairy. Felt pretty awful. Today I was more tired than anything. I don't have any responsibilities right now outside of two kitties so luckily I can afford to sleep when I need to. If I had kids to take care of, however, it would be a real struggle right now.

Thanks again for all of the support. I've been reading these kinds of threads for ages and figured that I owe it to the community to give back.

[sherfire]

Quick update. On day 5 now. Side effects have been mild for the last couple of days. Been having trouble sleeping the last couple of days. That's not entirely abnormal for me so I can't yet attribute it to the medicine.

I feel ok. I do have a bunch of new energy and my brain fog is starting to lift. This happened last time with the Sovaldi. There was an immediate improvement in my energy and brain function. But Sovaldi and Riba made me very sick over time when I took that before. I hope this time it's different. This first 5 seems very much the same as my last treatment's first 5.

I'll keep you guys posted. Hope everyone is doing well and happy turkey day.

[sherfire]

Day 13 - Day by day I feel a little worse. A little more difficulty sleeping. A little more anxiety. Joints and muscles are sore. I ate something yesterday that got me a little sick. Lost a lot of water in the process and today I'm having trouble catching up on hydration. My skin on my lips is shriveled like a raisin and I notice on my face that my skin is looking more wrinkly.

This treatment has been very different than my last treatment. The only difference in what I'm taking this time around is the addition of the new drug in Epclusa. There is about 5 or 6 hours after taking the medicine that I feel really bad. Today it knocked me out and I just woke up.

All things considered, it's not been all that bad. My last treatment I felt great for the first 2 weeks. I can't say I've felt great but there are periods in the evening before my night dose where I feel pretty good. If the treatment keeps on like it has been then this will be fairly easy.

Thanks all. Hope everyone is well and had a good T-day. I had my parents come up from New Orleans for a week and I had a buddy over who's wife passed recently. It was a good dinner. We do oyster dressing and a bunch of other crazy cajun things. So good.

Take care \o

[sherfire]

I know it's been a really long time since I posted. I've not been doing well. I'm currently just under 9 weeks and the side effects have been overwhelming. Primarily I'm dealing with severe anxiety and insomnia. I'm not taking anything for either of those things although my doctor offered to prescribe something for sleep.

I have about 22 days remaining and this time around it's been not nearly as bad as my last treatment. However, my last treatment was for 24 weeks and I stopped at around 20 weeks if my memory is correct. If this treatment went on past 12 weeks I would probably need to stop this as well. At the rate that I'm seeing these symptoms progress I figure that I can make the 12 week mark.

A couple of things that I have learned this time around is

-Water is crucial. If I don't drink a ton of water then I don't feel well. If I don't drink enough water today then tomorrow I will be very much worse.
-Stay away from high sodium anything. Again, I think this has to do with the bodies handling of water when I eat a bunch of salty foods.
-Cut out any anxiety producing activities or people. I have anxiety issues without the meds. On the meds my anxiety is on a whole other planet. I've had to cut out anything that induces stress or anxiety including TV Dramas and video games. As well as communication with friends whoare dealing with their own tumultuous lives and want to communicate their issues with me.
-I have my mom staying with me right now and making sure I eat healthy. thanks mom

I know that some of you hep c treatment people have not experienced any kind of severe side effects. I'm happy for you. For the rest of us I just want to tell you that you have to set your own comfort and health as top priority to give yourself the best chance at completing treatment. Drink lots of water. Engage in relaxing activities. Stay off the scary, depressing, sad, and 'who done it' murder mysteries and watch happy and light-hearted stuff.

Thanks for reading. I have been undetectable since week 4. I'll report back with any new developments at some point. I hope everyone is doing well.

[sherfire]

Hi everyone. In my final week now with 5 days remaining. Over the last week I have become considerably more fatigued and slept about 36 hours over the course of 3 days. It seems maybe my body is going through a recovery process? It feels like that anyway. I have to get more blood work on Friday and then I'll have my post treatment test. I'll keep you all posted. I'm just glad to finally be getting some sleep.

[andrew j]

Wow.

Good on you for pulling through this far!
That Riba sounds like a beast of a thing.
I've never taken it - but I did 9 months of interferon years ago.
It was appalling.

Hoping you get the result(s) you're looking for (and by now, deserve!).

Best wishes,
A.

[sherfire]

Thanks Andrew. I'm not sure if it's the Riba or the Epclusa. When I take my Epclusa in the morning I feel very bad for about 6 - 10 hours and then symptoms start to subside. At night when I take my Riba only the effects are much less severe.

Thanks again for the support. I wish I could have kept a more detailed log for everyone.

[andrew j]

Some people have reported adverse reactions to Epclusa.
... Not many - but some.

It's a good sign that your sides back off every day?

Thank goodness you're almost home!

[sherfire]

I've taken my last Epclusa!!!!!! I have one dose of Ribavirin left which I have to take in about 5 hours. So, mini celebration!! Tomorrow I'll have to get some blood work and then my doc will want me to get the 3 or 6 month test. I'm not sure what they want me to do because they don't freaking communicate with me! They don't even check up on me. I swear, for you folks living in america that are told horror stories about Canada or England or any other country that has government managed medicine are being lied to. Our medical system is entirely broken.

If you remember, our last president promised to fix the system. He said the cost was being fueled by inefficiencies and lack of regulation. Well he did nothing about either of those issues and costs went up! This president we have now promised an awful lot of stuff just like our last president did. What is the first thing he does when he gets into office? Increases military spending and turns our attention to Iran. Again, feeding the problem and not addressing the cause. Just like our last president and the one before. He promised to tackle corruption in washington, right? Well, he's doing the opposite of that, imo.

All I'm saying is it's time for us to quit drowning in apathy and take action. Where do you draw the line? If you haven't drawn it yet then you need to quickly. We really do have all of the power here.

Hope everyone is doing well. Only talking about this cause I care about you folks, my family, my friends, my children, and my friends' children.

I'll update this thread with my post treatment test results. Fingers crossed! 

[KimInTheForest]

Congrats on taking your last Epclusa, sherfire!!! You've done the hard part. Now comes the wait. Wishing you good news in 3 months time!

kim

[sherfire]

Congrats on taking your last Epclusa, sherfire!!! You've done the hard part. Now comes the wait. Wishing you good news in 3 months time!

kim

Hey, thanks Kim.

I received my results from my end-of-treatment test - Everything still A-OK. I thought I'd take time to update what my last 10 days have been like since I quit taking this medicine.

The body/joint aches that I would get after taking Epclusa were gone the day I finished treatment. The anxiety and emotional issues took a few more days to dissolve. I'm still dealing with what feels like dysthymia, or a low grade depression, but I'm glad to be feeling sad instead of overcome by anxiety.

It took about 5 days before I really started sleeping well again. From day 5 or 6 post treatment up until today I've been sleeping about 12 hours a day, minimum. Like yesterday I got up at 5 am after sleeping 15 hours the day before. I was out by about 3pm and woke up at around 1130 pm. I can't even make it a full 12 hours before I'm falling asleep again. I think this is probably a good sign that my body has started healing. I've only been up for about 3 hours and I think I could fall asleep again if I let myself.

Overall, I feel better. Just tired and fatigued. The symptoms that I would get after taking my medicine have almost entirely dissipated.

The most interesting thing about all of this, which I experienced after my last treatment, is my ability to feel emotion in a way that I haven't in a long time. That's great for me as I'm a creative person and without the emotion I haven't any inspiration.

An interesting note that I'm not sure that I mentioned in any of my above posts. But I found a bit a research that was recently published about geno type 3. They found the mechanism by which the virus passes through the blood brain barrier. They also found several brain chemicals including neurotransmitters like glutamate to be spiked to levels many times normal base levels. So they concluded that this geno type is wreaking havoc on our brains.

What's more interesting about the fact that glutamate levels are spiked due to the presence of geno type 3 is that high levels if glutamate in the brain are associated with various different kinds of psychological disorders including schizophrenia. Not saying that we're schizo's but we may exhibit personality quirks that weren't present pre contraction.

Just some hope for you folks dealing with psychological impacts that may be inexplicable.

Hope every one is doing well.

[V.BiTheSea]

Thank you for sharing your Epclusa experience. It is appreciated! I started taking it on Feb 21, and thought it would be a breeze the first ten days or so ~ then I was hit with muscle and joint aches that are actually debilitating. Pain in spine, hips and flank. I called and spoke to a nurse this morning at Onward, and she told me that many suffer from these symptoms although I have never seen it listed anywhere as a side effect. The fact that yours stopped after treatment is very heartening to me! I have always had moderate osteoarthritis, but this is different and isn't really touched by aspirin or Norco. I am very fortunate to be retired and to have a hot tub which I have found is the only thing that really helps. Also will be looking into the G3 info that you talked about. Congrats on having come thru the other side, and best wishes for a complete recovery! Keep us posted!

[Mw2324]

V.BiTheSea,
  I was on epclusa in September and finished Dec. 1st. When I began taking it, there weren't too many other people who had been on it. I sort of went into it blind. I experienced crazy back pain after taking it, pain in my upper back and lower back that seemed to travel down my nerves or something.  It stopped for me after I was done the treatment.  I thought there was something wrong with me because no one else could relate. I think they should add this to the side effect list! Best of luck to you!

[V.BiTheSea]

I am so happy to hear the treatment worked for you. It also helps to know I'm not alone when it comes to the back pain and I really appreciate your sharing that experience, ESP the part where it quits when treatment ends. I'm wondering if there's a point during treatment at which you started to feel better in general, as with increased energy as maybe the virus has weakened somewhat? I have more than two entire months to go! Right now I am ping-ponging between feeling debilitated and depressed versus excitement and anticipation at how good I hope to feel once the HepC is gone! Best wishes and thx again.

[sherfire]

Thank you for sharing your Epclusa experience. It is appreciated! I started taking it on Feb 21, and thought it would be a breeze the first ten days or so ~ then I was hit with muscle and joint aches that are actually debilitating. Pain in spine, hips and flank. I called and spoke to a nurse this morning at Onward, and she told me that many suffer from these symptoms although I have never seen it listed anywhere as a side effect. The fact that yours stopped after treatment is very heartening to me! I have always had moderate osteoarthritis, but this is different and isn't really touched by aspirin or Norco. I am very fortunate to be retired and to have a hot tub which I have found is the only thing that really helps. Also will be looking into the G3 info that you talked about. Congrats on having come thru the other side, and best wishes for a complete recovery! Keep us posted!

Hey By The Seas,

That stinks that you have new pain that your current meds don't help. I think these pains are neurological dysfunction and in the ballpark of fibromyalgia. It's almost like I felt the pain shooting up and down the nerve. These attacks never lasted more than 30 minutes if I recall correctly. They were uncomfortable none the less and seemed to come out of no where.

I did notice that I had more energy starting a few weeks into treatment. That alone was a good motivator to stay regimented in my medicine taking and helped keep my mind thinking positive throughout the treatment. I think that it's important to note that a lot of my issues were psychological. Primarily I was dealing with generalized anxiety. And while some of these anxieties were not unfounded my response to them was out of control. I felt like I was in a fight-or-flight situation all day every day.

Currently I feel pretty darn good. I started doing a strict paleo diet and exercising each day. I'm dropping weight, feel energized, and have a positive outlook. I have taken a few steps forward followed by a step back. I seem to be in the cycle of 3 or 4 good days followed by a bad. There is a fairly steady improvement in my energy, cognitive function, and mood.

That's another thing that I want to mention here. If you read my thread starting at the beginning when I first went on the medication up until this point here - do you notice anything weird? Early in this thread I had a very difficult time communicating. There are several incoherent sentences across my early posts. I'm very emotional in some of those posts. I'm not articulating myself very well and I repeat several points multiple times.

Now look at how I'm writing here and in my previous post. I don't sound quite as dumb as I did in previous posts. I'm not nearly as emotional and my vocabulary has suddenly expanded. The point is that I feel the fog lifting. I'm already seeing an improvement in my cognitive function.

I hope that you stay positive and complete the treatment. I had to alter my lifestyle quite a bit to make it work. I had help from family and friends along the way. I'm probably a special case though. I'm sure that you'll be fine. Try to keep in mind how much better you are going to feel once this is complete. It's true what they say, we're as healthy as we feel.

V.BiTheSea,
  I was on epclusa in September and finished Dec. 1st. When I began taking it, there weren't too many other people who had been on it. I sort of went into it blind. I experienced crazy back pain after taking it, pain in my upper back and lower back that seemed to travel down my nerves or something.  It stopped for me after I was done the treatment.  I thought there was something wrong with me because no one else could relate. I think they should add this to the side effect list! Best of luck to you!

Hey Mw,

Glad to hear that your back pain improved after treatment. I remember you posting that you were having serious pain from the medicine. I did too but the flare ups were short lived and sporadic. I have had a few little shooting pains since finishing treatment but they don't last more than a few seconds and they're not too painful. Just enough to remind me that I'm still recovering. You'll have to update us once you have your last SVR check.

[Mw2324]

I had good days and bad days on treatment. One day I was feeling good and the next I was exhausted. I feel an increase of energy now, not a huge increase but a noticeable difference and also a lot less fatigue induced anxiety.  Luckily, I treated before I incurred any damage to my liver so being tired and sore was my only real side effect from the virus.  Epclusa really made me tired. The road to recovery is in sight and I'm sure you'll do great as long as you take it easy for 2 more months!
 Sherfire- I had my 12 week svr on March 3rd. It was undetected and I have one more in June at24 wks svr. Glad to see you are feeling better!

[elias]

Hi:

I completed 12 weeks of Epclusa January 13. So I'm now more than 8 weeks post-EOT.

If I had to briefly summarize my side-effects both on it and after completing it, it's along the following lines: Non-specific symptoms such as insomnia, fatigue and bodily aches and pains were greatly intensified during treatment. They do continue off the Epclusa as well. Most notably the severity of the insomnia and hypervigilance. In other words , no new symptoms from before the Epclusa. But dramatic worsening of pre-existing symptoms, a few weeks prior to start of Epclusa, with worsening both during and after completing Epclusa.

My GI did hazard a guess that I may have increased energy as a result of having cleared the virus (as per my UNDETECTED at EOT+4 week vl test) so I may simply be more alert and energetic. Thereby making the insomnia worse. I can't say I've really noticed increased energy yet. But there may be something to this hypothesis. Because while lying in bed for hours trying to sleep, I feel not one bit tired or sleepy.

Some of these symptoms worsened even before starting Epclusa. Upon learning I even had HCV last Fall. So possibly a psychological component is going on here. I know how I contracted this virus. And it was in context of childhood trauma, which i kept trying to push aside from memory. So I'm having flashbacks too..

However, most on this forum taking Epclusa are reporting minimal to no side effects. Seems even milder than Harvoni from what I'm reading. It has the highest success rate for all GTs of all the meds now approved. So I'm grateful for it. in another month. Ill be at EOT+12 weeks. Hopefully I'll have achieved SVR 12 by then

[elias]

Sherfire- I had my 12 week svr on March 3rd. It was undetected and I have one more in June at24 wks svr. Glad to see you are feeling better!

Mw: I just re-read your post and noticed the above

Well congratulations on being among the first Epclusa graduates in our little Epclusa family here

[Mw2324]

Thank you, Elias. Rooting for you guys!

[V.BiTheSea]

Hi MW, thanks for sharing what was happening for you, and congratulations on the good lab tests! Fantastic to hear you are getting your energy back! I was wondering if you know what caused a fail for you with the Sovaldi? I am also Geno 3. Actually, I asked that very question of the nurse I spoke to this morning at Onward; more specifically as to what were the factors in play for the 5% that did not respond to Epclusa treatment and she indicated it had to do with degree of existing liver damage. I have read that G3 has always been harder to treat. Feeling Anxious with a Capital 'A'. Hearing the good results you are having with the E. is very uplifting. xxx

[V.BiTheSea]

Whoopsie! Just noticed the 'failed Sovaldi Geno 3' is not specific to MW... Right now I am unsure just who that byline belongs to. Sorry! Am newbie at posting here and will go back and find out how to use this site correctly. Thx, guys.

[V.BiTheSea]

OK, now I see it was the very cogent sherfire who began this thread. I probably knew that once and then forgot. (Really makes me wonder what else I knew once and is now forgotten. Scary!) I have now seen more of sherfire's posts, from the beginning I think.

The side-effects you had from the Riba sound just plain awful, and I commend you for getting the strength and courage to try it all over again with the E. (While 'beginning again' may be at the very heart of many important practices, I personally get absolutely crazy sometimes when I have to 'begin again'. It is SO HARD!) Your bravery has led to what sounds to be a full recovery coming your way and your story is in fact inspirational to me.

We are allotted 20 minutes each from our healthcare providers for a routine office visit. I have twice been (correctly) self-diagnosed with an existing illness that the physician basically did not have time to discover on their own. Forums like this are invaluable!

As for the politics of healthcare, the way I see it we will never be able to provide healthcare to all as long as the Corporate Overlords of the Insurance Industry are the ones who are in charge. We may have the power, but they have all the money. And are about to be getting LOTS more!

[V.BiTheSea]

Elias, your symptoms as you described them seem close to what I am experiencing. Like, everything I had before and now magnified by 50! And BTW, the 'insomnia' that I was literally born with turned out to be something else altogether called Delayed Sleep Phase Disorder. So, I DO get sleepy... eventually, that is! Usually around 6:00 AM is when I'll finally get to a deep sleep state. As you can imagine, this circadian disorder has created many problems trying to live my life around a normal rhythm which is predicated on waking up with the light of morning and getting sleepy as darkness falls!Thought I'd throw that out there in case it could be of help to you! xxx

[elias]

Very interesting v. by the sea:

What I have had since age 12 is  in fact delayed sleep phase disorder-that very circadian rhythm disorder you have!!! It began for me with the childhood trauma events which caused hcv among other disasters. My mind keeps replaying all that decades later. I cant stop the rage from building up n it takes little to trigger it lately

I call it insomnia only as "short hand" . Ive learned to work around it. But it now seems that no matter what time sleep now comes, I can only sleep in 2-3 hour spurts and they havent been adding up even close to the needed 7-9 hours/night. So that now my reworking of schedule to accommodate the circadian rhythm disorder has gone out of whack. Its as if I barely have a circadian pattern left at all. Easiest now might be to just sleep when I feel sleepy. But ive been very sleep deprived now for months.

Also interesting is the amplification of symptoms pre-existing the  HCV medication-which youve found as well. Hoping it all subsides with time. Its been over 8 weeks since I finished  Epclusa though...

[elias]

Hi again, V Bi the Sea:

I spoke to this morning at Onward; more specifically as to what were the factors in play for the 5% that did not respond to Epclusa treatment and she indicated it had to do with degree of existing liver damage. I have read that G3 has always been harder to treat. Feeling Anxious with a Capital 'A'

I'm GT2b. None of those relapsed in Phase III studies. The  only one that didn't reach SVR 12 stopped treatment after only one dose.Due to side effects

However Onward did tell you correctly about GT3. Of those 11 that failed in the Phase III, one had reinfected himself during treatment with a GT1A. So not really a "relapse" but "reinfection" Seven others had chirrhosis (F4). Two other GT3's who relapsed were "treatment experienced" so they may have had RAV's (or RAS as its now called). Leaving only one viral relapse who was "treatment naive" without cirrhosis.

So if you consider rates among non-cirrhotics who had not treated for HCV before, the success rate for Epclusa is 99% or greater-even for GT3.

Source:

http://www.nejm.org/doi/full/10.1056/NEJMoa1512612?af=R&rss=currentIssue#t=articleTop

Then see Appendix to above:
Appendix to New England J. of Medicine:

www.natap.org/2015/AASLD/nejmoa1512612_appendix.pdf

Scroll down to Table S4 for profile of those 11 who failed after completing treatment out of the 275

Might be  a tad tricky to generalize  this way from clinical trials to real life, but so far theyve been matching up for the other antivirals

[sherfire]

Hey Mw,

Congrats on your SVR. Were you treatment naive to start or had you done a previous treatment? I'm concerned as I had taken Sovaldi in the past and failed with it.

I just wanted to update a couple of things that I noticed since I finished treatment.

-During treatment I had this awful funky smelly wax build up behind my ears where the ear connects to the head. That has vanished. I've never been a smelly person and during treatment I could actually smell this funky discharge while sitting still. It's gone.

-Another thing is I've been getting several "ice pick" headaches that are about in the center of my head and a little off to my left. They erupt for about 5 seconds with a sharp shooting pain that feels pinpointed to a specific location. I've had dozens and dozens of them. It's not too uncommon for me to have those kind of headaches but this one has persisted in the same spot and has been happening several times daily for about the past month. I'm starting to think it's from the medication.

Hope everyone is well. I've been feeling pretty fatigued these last couple of days. I'm trying to steer clear of the pessimism about my svr and focus on being productive each day. I'll keep you guys posted.

[Mw2324]

I had no previous treatment before epclusa. If It's any consolation, I also have days where I'm exhausted and I am still free of the virus. Look at any other contributors to your fatigue.

[V.BiTheSea]

Hello Elias ~ Thanks so much for the links; they were helpful to me.

The more I've thought about our (respective) plights, the less I believe it's purely random that we have been experiencing such acute and parallel side-effects. And it didn't take long to figure out the sleep-deprivation component. Did it?!

Your GI's guess that you may be experiencing more energy sounds pretty plausible. Still, I don't think anyone who hasn't experienced what it's like to move through life with intractable 'insomnia' can ever guess how deep are the pitfalls and how unforgiving the ramifications.

I hope to hear that you are feeling better, or at least there's been a positive shift in some direction, no matter how small. Alarm bells go off inside my head when I hear about sleeping in 2-3 hour spurts and a schedule gone whack! Especially in the context of everything else that's going on...  For me, the HCV diagnosis brought up so much stuff! Anxiety, self-recrimination, intrusive flashbacks, lots and lots of self-pity. Too tired to deal with any of it, yet never tired enough to sleep.

I've tried many different 'strategies' over the years to simply try and get some sleep! One of the scariest was just to 'give in' to the 'delay', and go for just sleeping when I 'got tired'. Well, sleep came later and later and I finally realized I was actually pushing myself over to the dreaded Non-24, which is a place nobody wants to go! Please be careful with what you are doing.

At the beginning of last year I was actually getting into rages after lying in bed every night with no sleep anywhere in sight. I decided I had to do something, as in ANYTHING, including meds. So I cycled through a dozen different things ~ Amytriptiline, the benzos, the -zepams, even Soma. For different reasons, nothing worked for me until by accident I came upon of all things a couple of antihistamines with relatively few side effects.  And now I find that Melatonin helps where it did not when I was younger. Another thing that I find really helps are downloads of podcasts and relaxation recordings I can bring to bed with me on my phone. Of course, exercise is KEY.

I am new here and I know this must be off-topic but I can say I do know some of what you have been going through, and that it's serious business. I have never been to one, but I know there are professionals out there who specialize in DSPD.

Hope you are doing okay...

[elias]

Thanks V. BiSea:

I had tried melatonin for this many years ago. It only helped temporarily. It put me to sleep earlier. But I woke too early and I was in a fog all the day and much more tired. This is similar to how sleeping meds work on me most of the time

I might give it another try. I remember hating its effects. but that was way back.

It's not really off-topic, because many with HCV have sleep disorders of all sorts. i guess you can start here:

https://www.ncbi.nlm.nih.gov/pubmed/24308991

and

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2829649/

So:  At some point, might be worth starting another thread on this. Maybe in research section of Forum. Maybe in new section on liver health . Which they might create here..

My deranged sleep phase happened to begin exactly same time as I  was infected with HCV at age 12. But so much else was going on in that horrid time frame that I cant really be sure. I only learned I was HCV+ in September 2016. Exact  causality is a bit iffy here. I think most of the studies on sleep and HCV were on those with cirrhotics.

Now, instead of a delayed sleep pattern, I seem to have lost all pattern. Which can be quite a mess. is that the non-24 hour pattern you mentioned? It's very very slowly returning. But stress will throw it badly off again. I'm stressing over another impending medical test now (unrelated to HCV) , but everything is  now overshadowed by cataclysmic thinking which this whole scenario has intensified.

Benzos do help on occasion. But I'm sparing with those. Gonna try my "breathing machine"  thingy soon. Hadn't helped much with sleep before, but worth another shot

[V.BiTheSea]

HELLO DEAR EPCLUSA PEEPS
MY DR WANTS ME TO STOP TAKING THE EPCLUSA.

I have had severe muscle and joint pain since one week after starting 2/21. Here is the message I sent him this morning that prompted him to call and tell me to stop taking it. It just about says it all in the less than 1000 characters allotted:

 *The nurse I spoke with at ‘Onward!’ last week urged me to contact you re body pain after Epclusa. I have waited until now because I was hoping things would improve, which they have not. *Advising of severe joint and muscle pain appearing Week 2 after beginning med on 2/21. Areas affected are neck, spine, shoulders, pelvic region (esp hip joints and quadriceps), knees and ankles. Pain rated as unrelenting 6-9, and experienced as aching, throbbing, sharp and shooting.*To illustrate ~ I’ve had to move a table by my bed for assistance in getting up. Stepping down off a stair sends jolts throughout entire spine. Last night while trying to change direction I was unable to pivot as I normally would, and had to instead take many teeny tiny little steps around in a circle to accomplish a 180. I am unable to cross my legs. In general I feel every morning as though I’ve bounced down off a very high craggy rocky cliff during the night.*

I told him I definitely did not want to stop taking it, that I have a long history of osteoarthritis and fibromyalgia which may just be being exacerbated,(but then again who knows?) He says my symptoms are unusual and he doesn't want to leave me worse off than how he found me. He ordered some additional blood work for me, which I already did today along with 28-day lab work.

I FEEL LIKE I'M IN PANIC MODE NOW. I don't know what to think!!! When he told me to stop taking it my heart just started beating really fast and felt like somebody punched me square in the solar plexus.

I am also now rueful because I actually feel a lot better today, and did mention to him that I had 2 days last week that I was asymptomatic.

Please post here if you have had any similar problems. Thank you so much.

***Here is a weird little thing that happened a couple of months before I started E. I took one and ONLY one L-Tryptophan 500 mg capsule (Lidtke Technologies, which has an excellent reputation) and woke up with the same severe symptoms as described above.***

[elias]

Hiya V. by Sea:

I can only tell you what I'd do in your situation. Not knowing medicine.

I'd do my best to keep taking it!!!

***Here is a weird little thing that happened a couple of months before I started E. I took one and ONLY one L-Tryptophan 500 mg capsule (Lidtke Technologies, which has an excellent reputation) and woke up with the same severe symptoms as described above.***

Means you've had such symptoms before . Not on Epclusa

I seem to have something akin to fibromyalgia. Where symptoms can appear erratic and seemingly with poorly understood medical causes. But i never sought medical help with it , because mostly they offer only a dazzling array of palliatives for it. Things just get intensified out of he blue, and its a poorly understood syndrome.

I assume the Gastro or Hepatologist prescribing the Epclusa is not the one treating your osteoarthritis and or fibro. Right? Perhaps results of those tests he took today should be sent to the physician treating that. He may've seen such patterns before. If theres no pressing reason based on labworks just done to stop taking it, maybe best just to keep going on, especially since theres been improvement.

I havent had exact same symptoms. But definitely things that felt minor pre-Epclusa were worsened at times while on it.  And i survived. Adequate sleep help  almost magically with those. Good luck. Try to relax from the panic and take it from there

[V.BiTheSea]

Well, Elias I told him flat-out no, I was not going to stop taking it. I already have in my possession another 28-day course of meds that I start tonight. I'm going to message him another 1.000 characters tomorrow and fill the picture in. I have a long and well-documented hx of everything including the 'insomnia' with an Internist in his same group. Plus, just since January I've had a series of MAJOR life stressors which can - and do -  act as catalysts to fibro flares. Maybe it's been so long since I had a really bad one that I forgot how disabling they can be.

I realize now I should have waited for an office visit to speak with him but I am a little scared and hella worn down as well. I want to be in compliance in every way with the E., and don't see much point in hiding anything. I was shocked when he told me I needed to stop taking it as the first sentence out of his mouth. He said he could be in trouble because my symptoms are so extreme and because it is still experimental.

It is actually your story about the (parallel) symptoms not having abated weeks after finishing the treatment that scares me more than anything I've come across. (The possible exception being that the virus could very well be living - and replicating - in my brain, which totally skeeves me out.)

I appreciated the links you posted ~ I believe it's the first one that talks about one of the antihistamines I mentioned that helps with the insomnia for me. I found it from an oblique angle, as help for a 'sensitive' bladder. It turns out that hydroxyzine (Atarax), besides being the only word in the English language that contains the letters 'x', 'y', and 'z' consecutively, is also used as an anxiolytic. It seems to slow down the racing and intrusive thoughts for me, which is helpful and welcome especially right about now!

It really helps to have your input. Thanks.

[elias]

Sounds  like he might be trying  to cover himself.

Pain can often intensify with a lowered threshold (the gateway thing..) and there's feedback loop whereby it amplifies. So if nothing bizarre is found on those tests, it might be down to that. Might be good idea to have consult with your regular doctor.  I did have to take Aleve (Naproxen) a few times while on it.  Something I generally like to avoid.

It is actually your story about the (parallel) symptoms not having abated weeks after finishing the treatment that scares me more than anything I've come across. (The possible exception being that the virus could very well be living - and replicating - in my brain, which totally skeeves me out.)

I wouldn't place  much on this, because that symptom pattern of mine began in earnest a few weeks before my first Epclusa. And my sleep disorder is a decades long one. Unless time vectors here are surreal, causality can hardly be inferred. There's much more going on for me here than the Epclusa. Though no doubt that medicine is playing some role  in it. The prescribing doctor is probably not assessing all that in your case.

There have been a few posts here about intense musculoskeletal pains. I think mostly with Harvoni. The usual panacea of lots of water water water was offered. Eventually it subsided. Maybe it was the water, maybe just time..

Wishing you all the best. Keep us posted

[elias]

I'm going to message him another 1.000 characters tomorrow and fill the picture in. I have a long and well-documented hx of everything including the 'insomnia' with an Internist in his same group

Just a little note to add. If u havent yet messaged him, I'd downplay your current symptoms a bit. Just to be on safe side. Then consult with  your internist if things continue to be bad. Just trying to protect that "third bottle" youll need in another month.