Author Topic: Started Harvoni 2 weeks ago, anyone else having side effects (Read 51941 times)

Patty · « **on:** April 25, 2016, 07:07:25 pm »

Hi,
I'm new to the forum. I have Hep-C since 2003 , got it from a pt I was working on. Went through Interferon and ribiveron combo for almost a yr with success . I have just started on Harvoni about 2 weeks ago. This is so much better than the Interferon, however I'm still having some side effects that are increasing instead of getting better and was wondering is anyone else having trouble. I have headaches that I can manage, but the joint pain and body aches are giving me a fit. I do have diarrhea and nausea, but the vomitting has stopped. I'm what you call a complicated case since I have other health issues to deal with. I was in a car accident in 2012 where I sustained a brain injury which left me me with seizures that are triggered by pain, had to learn to talk and walk and had spinal fusion surgery, and I've lost my adrenal glands so I'm Adrenal Insuffecient and to cortisol to stay alive. I think my accident and all the Meds I've been on accelerated my liver worsening and now I'm at the point where after blood wrk and a Trans jugular liver biopsy I'm on Harvoni. Like I said the treatment is a lot better than Interferon combo but ...and I hate to complain but I'm in a lot of discomfort. I ach all over and I'm downing water and taking my pain Meds like I should. I've been thru a lot so I know I can take a lot, but the pain is causing my seizures to increase. And if a gran mall can wipe you out all on its own but add the side effects of Harvoni which were suppose to be minimal and I'm miserable. Anyone else having problems and will the symptoms improve with time or get worst

KimInTheForest · « **Reply #1 on:** April 26, 2016, 12:37:10 am »

Hi Patty. And welcome to the forums! Very sorry to hear about all your side effects. People on these forums have had a wide variety with Harvoni side effects, with some folks experiencing virtually none, and other people having great difficulty with treatment. It sounds like you are doing the right thing with drinking plenty of water. I drank about 1/2 a gallon a day of water. Water helps most people with headaches in particular.

As for diarrhea - I think most people who experience that on Harvoni only have it temporarily and briefly, not throughout treatment (from what I have seen posted here). I had diarrhea for about 7 days midway through, and then went on the BRAT diet, and the diarrhea stopped very quickly. BRAT = Bananas, Rice, Applesauce, Toast. Rice and toast must be white, apples must be peeled.

One thing I noticed is that side effects were constantly changing throughout my 12 weeks of treatment. Nothing lasted too long. It was as though the body figured out what it was dealing with each time and then adapted. Others have commented on that too. So let's hope it works that way for you too.

Good luck, and keep posting

kim

morab · « **Reply #2 on:** April 26, 2016, 12:21:17 pm »

Patti
So sorry to hear about your health problems and side effects. I started off taking Harvoni on an empty stomach, Now I take it after I eat breakfast and my symptoms are fewer every day.
I did learn to stay away from acidic foods and drinks, I am taking a really good magnesium product by MgBright, magnesium malate and it has really helped me with aches and pains. You can order it online and might consider it and it was ok with my physicians for me to continue vitamins and the magnesium.
Keep us posted on how you feel. I am on day 9 and so far feeling better each day.
I will keep you in my thoughts of sending you some good healing energy.
To you feeling better really soon.
Morab

Patty · « **Reply #3 on:** April 26, 2016, 02:51:10 pm »

Thank you morab and KiminTheForest... It was so nice of you to respond. I wasn't sure anyone would. Sometimes I feel all alone going thru this. It's nice to know there are other people out there going thru this to. I will definitely take your recommendation and try them. Last couple of days have been very hard so much pain ...like the flu. Which brought on a seizure. I've cried a lot today, but reading your post have lifted my spirits, thank you so much. I know this is only temp and I will be cured soon, I'm staying positive that side effects will get better. My mom is here taking care of me. I know most people keep working and carrying on with life, however with my brain injury life is still a struggle, and doctors thought it best to have someone around to keep me on track. I will keep you posted, my mom went and bought a bunch of bananas and white bread, I've increased my water and we are using distilled water. Praying you both have good results and we will all be cured soon !!
Thanks so much
Patty

morab · « **Reply #4 on:** April 26, 2016, 03:55:32 pm »

Patty
I am so glad you found this forum. I too felt totally alone in this journey until I found the wonderful people here to help me on a daily basis.
Hang in there. Also I found I have to eat before taking the medication or I feel awful, They had said it could be taken with or without food but on an empty stomach did not work for me.
Mint tea is something I am drinking to get more fluids as I tend to not drink enough and that is such a must.
We are all sending you positive energy for your side effects to subside very soon. I keep hearing about the Harvoni High where you get bursts of energy.
Let's hope we both reach that place very soon.
You are in my thoughts daily!
Morab

Patty · « **Reply #5 on:** May 05, 2016, 03:01:17 pm »

Hi guys,
Hope you are doing well. I feel awful for getting on here and complaining LOL, but where else would I go ? I'm getting ready to get my second bottle of Harvoni tomr, so that's a big Yea I've gotten through 1 bottle. I'm trying to drink plenty of water and my headaches have gotten better. But my body aches are increasing ;(
My doctors are struggling with my cortisol intake. Trying to fing that perfect amount. Too much and I don't sleep too little and I pass out. I got up the other night to go to the bathroom and was so weak my legs just gave out and down I went. My mom who is here helping came in and gave me some cortisol and helped me up and than a few hours later it was time for schedule med which put me in a great wonderful blissful period of feeling good. All that extra cortisol gave me energy and and an appetite and I walked outside and talked to people got on fb...but never went to sleep till 7am the next day, which is when I crashed. Coming down off a cortisol high is hard add how crappy you feel from side effects of the Harvoni (which is still so much better than interferon combo treatment) and well I've been struggling. Drs have decided I'm to increase my cortisol just a little to help me out of bed and keep me from passing out, but not enough to let me go through treatment feeling good. They said Harvoni will make you weak and fatigued and you will need to just ride it out. Oh it was a nice day while it lasted

So that is why I've been off line I've been to weak and throwing up to do much of anything. We are working on me trying to eat more.
Does anyone else have joint and leg pain???
Yes I did experience the Harvoni high for about a week everyday 2hours after taking the Harvoni I would get a burst of energy that would last for about 2hrs, but sadly it's gone...hope it comes back. I've noticed my seizures have increased some. Just remb I'm what they call a special case...I have many other health issues to deal with, so my experience will prob not be the norm. Thank you all who have sent me well wishes and asking how I'm doing. It's funny people who don't have a chronic illness just don't understand how hard it is to just live. Recently someone sent me the Spoon Theory story to read. It was an eye opener, if you have not heard of it than just google Spoon Theory. Congrats to you All for getting through another day of living with Hep-C and for those who are going through treatment !!! So proud of you and you inspire me. Got to go my alarm just went off time to take my Meds.
Patty

Philadelphia · « **Reply #6 on:** May 05, 2016, 05:38:05 pm »

Some people use ginger tea to help with nausea. I hated the stuff so I had mint if I was having anything. I got leg cramps which woke me at night. Haven't had one since I finished treatment. You're doing an awesome job of staying on treatment, keep your eyes fixed on the long game - being HCV free.

morab · « **Reply #7 on:** May 05, 2016, 05:48:01 pm »

Patty good to see you posting again,
I am on day 18 of Harvoni and today was a great day. I made sure to drink more water than usual.
I have back pain, feet pain, nausea etc,,,along with most nights a weird dream.
Hang in there Patty and drink some mint tea! It really does help.
We all wait to see what tomorrow brings!
Stay positive and keep us posted on how you are doing!
We are from all over the world here so it is a great way to connect with others is similar situation.
They just delivered my second bottle! A little early!
Morab

Patty · « **Reply #8 on:** May 06, 2016, 06:21:28 pm »

Thanks guys I will try the mint tea. Question though do you put any sugar or honey in it ?? Also next week I go for my 4wk blood wrk, fingers crossed. It feels as though I've been on it longer but I went back and ck the calander and next week will be 4weeks. Last night was awfull worst headache and today as well. It's 6pm and I'm just starting to move...OMG I ache and I have been so weak today I could not even lift my hands to brush my teeth.. My cousin came by to visit and I could not even get out of the bed so she just climbed up here with me and we chatted for just a little. Sorry lost my train of thought. Oh well I need to go my arms are hurting trying to type.
Till next time
Patty

morab · « **Reply #9 on:** May 06, 2016, 08:31:35 pm »

Patty
I use honey or agave nectar to sweeten my tea. Also I love chamomile tea and have been drinking it also! It really helps.
I am on day 18 of treatment and have had 2 really great days.
The other day? Not so good. Lot's of back and hip pain, gut issues, etc.
Hope you are feeling better.
I feel better when I drink a whole lot of water.
Morab

salpi · « **Reply #10 on:** May 27, 2016, 09:03:40 am »

Dears,

I joned the forum just now and I would to share with you my experience.
I'm 58 old and 1B vl 129.00 ALT 56 AST 90 Gamma gt 101 .
I started my 12weeks cure with a generic Harvoni (MYHEP L VIR By Mylan) just 4 day ago .Until now no side effects and at the end of the next week I will do my first test .
I will keep you informed .
I have a lot of hope that the generic works.

morab · « **Reply #11 on:** May 27, 2016, 10:33:20 am »

Welcome to the forum salpi !!!
From what I hear the generic works! Keep us posted on how you are doing, I am on day 41 of 12 weeks and the time is flying by.
Morab

FutureThinker · « **Reply #12 on:** May 31, 2016, 02:43:30 pm »

Morab, how are you feeling these days? Is it getting better as time goes on? FT

morab · « **Reply #13 on:** May 31, 2016, 03:24:04 pm »

My 4 week lab came in and I am Undetected!
My symptoms are much less dramatic now, it seems after that first 4 weeks I started feeling better.
Not to say that I am symptom free, but much more bearable.
Looking forward to EOT!
How about a detox plan for after treatment? Does anyone have a plan for that?
Morab

FutureThinker · « **Reply #14 on:** May 31, 2016, 03:41:58 pm »

I am still drinking a fair amount of water and am finding I do need more water than I had been drinking prior to the Harvoni. I've cut back only 1-2 cups/day, so the flushing effect is there, just more tolerable! That's all I've changed. FT

Patty · « **Reply #15 on:** June 12, 2016, 03:57:39 pm »

Hi, guys
Sorry been off for awhile I've been very sick, to tired to read or write, some bad side effects, than things got a little better. I enjoyed getting out than things fell apart. Headache nausea not wanting to eat tired beyond anything I can imagine, pain in joints and legs off the chart, lose stool, bad dreams, sad, and this all triggered my seizures coming on at alarming rate. I feel awful after a seizure but having 5 to 10 a day has worn me out, I would be so weak I get up in the night to go to bathroom because of all the water I'm drinking and my legs just gave right out from under me, I was walking thru the house and down I went...so out came the walker and helmet for safety reasons. Glad to say things have improved some and I'm not using walker or helmet anymore. But this medicine is reaking havoc with my seizures . I'm on the last 4 weeks Yeah !! My blood wrk has shown undetected. Insurance did not want to pay for last 4weeks, so had to get that wrk out. Here is to a Hep-C free world !!
Patty

KimInTheForest · « **Reply #16 on:** June 12, 2016, 04:08:18 pm »

Quote from: Patty on June 12, 2016, 03:57:39 pm

Hi, guys
Sorry been off for awhile I've been very sick, to tired to read or write, some bad side effects, than things got a little better. I enjoyed getting out than things fell apart. Headache nausea not wanting to eat tired beyond anything I can imagine, pain in joints and legs off the chart, lose stool, bad dreams, sad, and this all triggered my seizures coming on at alarming rate. I feel awful after a seizure but having 5 to 10 a day has worn me out, I would be so weak I get up in the night to go to bathroom because of all the water I'm drinking and my legs just gave right out from under me, I was walking thru the house and down I went...so out came the walker and helmet for safety reasons. Glad to say things have improved some and I'm not using walker or helmet anymore. But this medicine is reaking havoc with my seizures . I'm on the last 4 weeks Yeah !! My blood wrk has shown undetected. Insurance did not want to pay for last 4weeks, so had to get that wrk out. Here is to a Hep-C free world !!
Patty

So glad you only have 4 more weeks to go, Patty! It sounds like this treatment is really wreaking havoc with your body.

And CONGRATS on reaching undetected !!! Just hang onto the knowledge that you will come out of this cured of Hep C, and let that knowledge pull you through the remaining 4 weeks somehow. Can your doctor help in any way? The accelerated seizures sound like a really bad complication.

Stay strong,
kim

morab · « **Reply #17 on:** June 12, 2016, 05:24:37 pm »

Patty
So glad to see you back on the forum, yes these symptoms that most physicians deny having anything to do with the drugs we are on are real.
I to have had so many days like yours, except for the seizures that must be horrible.
Hang in there and sounds like we may be graduating together! I start my last bottle tomorrow on my 62nd Birthday!!! I have been undetected since week 4 on tx....so that is something to celebrate...
Keep in touch and may our next 4 weeks be easier.
Morab

Patty · « **Reply #18 on:** June 22, 2016, 06:14:20 am »

Hi guys, thanks for getting back with me. So sorry I've been too sick to get back on righ away. It's 6am I woke up in pain only slept a few hours. But something else was on my mind...my 8 week blood results. I've been avoiding looking at them because I just felt I was so sick I didn't think I would like what I saw. I was right. My 4 week blood results were good and promising, however my 8 week results have my ALT and AST going back up ! Calling Dr tomr to find out why and what do we do. Wondering did anyone else have great results at 4 week mark and than things go bad at 8 week mark with things finally getting better at 12 week mark

The side effects of this medicine has not been a walk in the park and certainly not as easy as they said it would be. I'm miserable !! Hope everyone else is doing better than me.
Prayers to you all and thanks for checking in on me, it's nice to know I'm not alone.
Much love and support to you All
Patty

morab · « **Reply #19 on:** June 22, 2016, 07:41:17 am »

Patty
You need to contact your Dr. right away! Did they do a Viral Load test? If not you may want to get that done again.
I only have about 3 weeks left on treatment, and finally having some good days, but some days I struggle with symptoms.
The weird dreams , nights of restless sleep, back,hip, and pain in my feet are no fun so you are not alone. Keep us posted on what your physician says!
I need to call and get my lab results from 8 weeks where they did my AST/ALT to make sure they are still at normal range!
Morab

KimInTheForest · « **Reply #20 on:** June 22, 2016, 02:53:39 pm »

Hi Patty. Sorry you are having such a rough go of it. As far as AST/ALT goes, how much did your numbers go up at Week 8? If it was only a little, I would not worry at all. If it was a huge spike, that's another matter. But it does not necessarily mean the virus has returned (if you had previously reached undetected). All kinds of stresses to your health and body can make those liver enzyme numbers increase.

My AST/ALT dropped down into the normal range (for first time in 20 years!) by Week 1 of treatment. It stayed in the normal range throughout treatment. But at 4 weeks post-treatment my ALT was double the upper limit of normal. However, I was still virus free.

Good luck, and hang in there!

kim

Patty · « **Reply #21 on:** June 24, 2016, 07:53:46 am »

Hi everyone

Patty · « **Reply #22 on:** June 24, 2016, 08:03:48 am »

Hi everyone,
Not sure what happen to my post, everything I typed vanished. My Drs said the ALT AST levels went up but not enough for them to be overly concerned , I've asked for a viral load to be done now even though I only have 2weeks left. My joint , back, and hip pain is off the chart. I think the drug is new and they want it to be the wonder drug and keep getting their funding. I don't think we will know the full effects of this drug for awhile, but it would be nice to hear a dr who does not seem to be reading the script that was handing out. Drs need to listen to their patients so they can provide the best care for all. I hope my symptoms improve after treatment, because right now I'm miserable . Hope everyone get cured and here is to a Free Hep-C world !!
Patty

morab · « **Reply #23 on:** June 24, 2016, 08:34:44 am »

Patty
You are not alone, I have 2 weeks left of tx. I still have back, hip, and pain in my feet is the worst. Swollen ankles! Remind your Dr. that you are not the only one experiencing this! Hang in there and keep us posted on your progress!
Morab

brie41 · « **Reply #24 on:** June 24, 2016, 07:40:28 pm »

Hi Patty,

I remember one night during my treatment my right leg and the outer thigh started hurting so bad. I had been relaxing on the couch and once it started I couldn't even sleep. It went away by the next day but acts up every now and then but not to that degree. I mentioned it to the PA and she said it had nothing to do with the Harvoni. Really?? I didn't argue, why bother. I do hope it gets better for you very soon. Take care. Brie

Myfly73 · « **Reply #25 on:** June 26, 2016, 07:02:33 pm »

I will start harvoni tomorrow. Genotype is 1a. I was told in the orientation that some tiredness may occur. I am ready to began my journey. I was afraid at first, but my faith has given me strength. Stay with it. Don't drink alcohol or use what is not allowed by your doctor. We will get through this. Support is the ante dote. Maybe one day there will be this big nationwide parade to celebrate We Made It!

KimInTheForest · « **Reply #26 on:** June 26, 2016, 07:25:07 pm »

Quote from: Myfly73 on June 26, 2016, 07:02:33 pm

I will start harvoni tomorrow. Genotype is 1a. I was told in the orientation that some tiredness may occur. I am ready to began my journey. I was afraid at first, but my faith has given me strength. Stay with it. Don't drink alcohol or use what is not allowed by your doctor. We will get through this. Support is the ante dote. Maybe one day there will be this big nationwide parade to celebrate We Made It!

That's great that you are starting treatment tomorrow, Myfly! I hope it goes smoothly. You will, in all likelihood, be cured.

kim

AussieRosa · « **Reply #27 on:** June 27, 2016, 05:09:35 am »

Hi there, Myfly. Glad to see another person here beginning treatment. Good on you for taking your health into your own hands by tackling this dragon we call Hep C. I wish you all the very best for a side effect free treatment and SVR. Please keep us updated on how you go with it.
Rosa

Mila · « **Reply #28 on:** June 29, 2016, 11:26:41 pm »

"One thing I noticed is that side effects were constantly changing throughout my 12 weeks of treatment. Nothing lasted too long. It was as though the body figured out what it was dealing with each time and then adapted. Others have commented on that too. So let's hope it works that way for you too."

I just joined the forum today.
I'm in the middle of my 4th week and I have to agree that while I have experienced side effects they have consistently changed. The only ones that have been ongoing have been light headaches, fatigue and an unbelievable insatiable craving for icy cold water pretty much by the gallon and the body pain which has been really bad. I haven't been nauseous with diahreah..in fact this week I'm all backed up. I've been eating so much veg and barely budging at all. Today I bought some magnesium and some dulcolax after asking my pharmacist if they will interact. I also got a bag of prunes. Hopefully this, like most of the other side effects will pass. Both figuratively and literally.

So far I've been doing what my body wants me to do. On the bad days I know I'm going through it for a good reason and that IT WILL COME TO AN END. 12 weeks in the bigger picture isn't even half a year. Time passes faster when you're older

you can do anything for 12 weeks.

We are not alone in this. It's good to read all there is to offer here.

AussieRosa · « **Reply #29 on:** June 30, 2016, 09:21:40 am »

Mila, you're right, time will fly by. You only need to hang in there for a short while more and it will be so very worth it. Hope the rest of your treatment goes well and you reach SVR.

brie41 · « **Reply #30 on:** June 30, 2016, 02:50:17 pm »

Hi Myfly,

Best of luck with your treatment. I totally agree with both Mila and AussieRosa that sides come and go and are not too troublesome for the most part and time really does fly!!! But as always it is one day at a time and I know my priority was to take my med at almost exactly the same time everyday and obviously not miss any doses. Good luck! Oh yeah, I am sure you know to drink plenty of water all day long. I know it was easy for me because I was so thirsty all the time. Brie

Ceecee · « **Reply #31 on:** July 03, 2016, 05:03:10 pm »

Hey everyone my name is Ceecee first time here but just wanted to share that the side effects for me are the same as everyone else fatigue nausea bones aching feeling down but it's just reassuring that there are other people out there going thru the same thing 16 days on Harv and sofo

good luck everyone ❤️

morab · « **Reply #32 on:** July 03, 2016, 05:47:35 pm »

Ceecee
Welcome to the forum! What genotype are you?
You are not alone, keep us posted on your progress! I am on my last week of Harvoni and really ready for my body to stop hurting so much. I have been undetected since week 4 into tx. Good luck with this adventure!
I look forward to this graduating class of SVR 2016!
Morab

AussieRosa · « **Reply #33 on:** July 03, 2016, 10:00:06 pm »

Hi, CeeCee. Welcome to the forum and good luck with the rest of your treatment.

KimInTheForest · « **Reply #34 on:** July 03, 2016, 10:00:24 pm »

Quote from: Ceecee on July 03, 2016, 05:03:10 pm

Hey everyone my name is Ceecee first time here but just wanted to share that the side effects for me are the same as everyone else fatigue nausea bones aching feeling down but it's just reassuring that there are other people out there going thru the same thing 16 days on Harv and sofo good luck everyone ❤️

Hi Ceecee, and welcome! Good luck with your treatment journey.

And Morab: So great that you are down to your last week!

kim

Ceecee · « **Reply #35 on:** July 03, 2016, 10:58:29 pm »

Hey guys I'm a genotype 1a 2wks ago alt 171 sat 137 now alt 49 sat 33 my viral load 5435617 now it's non detected

AussieRosa · « **Reply #36 on:** July 03, 2016, 11:03:29 pm »

It's great to see those early results showing just how well these new meds work, isn't it. It gives a real boost of hope and optimism.

folsom · « **Reply #37 on:** July 05, 2016, 06:57:09 pm »

I'm at the end of the 7th week of Harvoni - and I can barely walk from the joint, hip and leg pain. It sometimes radiates to the back and knee. It is so severe that I have to use a cane if i need to walk or stand for any length of time (like at a museum). Knowing that its temporary is the only thing keeping me from freaking out.
Bleeding of the mucous membranes as well - rather a sleeper of a side effect but VERY VERY real.

I am awaiting my results from the 6 week lab - the 4 week showed merely detectable and my Dr is asking for an additional 4 weeks even though I had 4 weeks to go at that time. Hopefully the 6 week labs will show NOT detectable and I won't need the extra 4 weeks. But if I do, so be it. I'll make it through. Because I know (devoutly hope anyway) that its temporary.

morab · « **Reply #38 on:** July 05, 2016, 09:21:04 pm »

folsom
I am also one of the few who have the symptoms of severe pain, my hips, low back, feet pain. You are not alone with these symptoms.
I am on my last week of 12 weeks Harvoni , have had about 6 good days and the rest have been full of symptoms like yours.
What is your genotype.
It seems that in the US they are prescribing 12 weeks of tx to reach success of SVR/ Undetected.
Hang in there, drink more water than you think you need.
Also a good magnesium supplement may help with cramping in the legs. I use MgBright monomagnesium malate and it really helps with cramping, yet not with the hip, back and feet pain. I am on my last week and so ready to get this drug out of my system.
I was undetected at 4 weeks in! Hopefully your next lab will show the same.
Please keep us posted on your progress and come here to complain as you are not alone.
This forum has been my saving grace when I thought I was loosing my mind from the symptoms.
Morab

folsom · « **Reply #39 on:** July 06, 2016, 12:24:31 pm »

Thank you so much! I'm sorry you're also experiencing this but it does help immensely to know that I'm not alone/losing my mind.
I'll increase the water - once the headaches were over I didn't think I needed quite so much but it makes sense to flush out the toxins.
I am 1a and my AST and ALT are back within range (26 and 20). I should hear about the 6 week labs today. After speaking with the nurse its likely that even if they come back undetected the Doc will want me to do the extra 4 weeks. Now that I have this forum I think those weeks will be easier to handle

morab · « **Reply #40 on:** July 06, 2016, 01:30:33 pm »

folsom
I was in such pain last week that I ended up taking a 20 minute really hot epsom salt bath/soak. It helped so much and I also sweated out alot of toxins.
You might consider trying this when the pain is really bad.
Also you have a much better chance of a cure with 12 weeks of tx than with 8 weeks.
Hang in there as the time flies even when I thought it would last forever.
Keep us posted.
Morab

Mila · « **Reply #41 on:** July 06, 2016, 04:32:54 pm »

folsum~
I have had severe body pain through most of this as well. I am in the middle of my 5th week and while all kinds of side effects come and go body pain, mild headache, fatigue and an unquenchable thirst for the iciest cold water I can get are the ones that have been constant. I just keep on drinking fluids trying to flush this nasty out.

morab is right, drink more water than you think you need. I think it cools your liver and helps with pain. I have been taking hot epsom salt baths and soaking which seem to help a bit. If you don't have an acid stomach issue pineapple really helps with muscle pain and since we have real restrictions on some of the things we can eat and drink meds included its just a yummy piece of fruit!

I'm sorry to hear this is so painful for you. My pain has been largely joint and that is a hepatits thing. I think when your body is really fighting you have more pain. I have no medical proof of this but it seems to be how it is for me. Hopefully all this pain will result in an undetectable for your blood tests.

Its only a matter of time before its over.
~Mila

Patty · « **Reply #42 on:** July 09, 2016, 02:37:04 pm »

Patty · « **Reply #43 on:** July 09, 2016, 03:09:50 pm »

Hi Everyone,
Guess who has finished her treatment??? Me

KimInTheForest · « **Reply #44 on:** July 09, 2016, 03:15:04 pm »

Quote from: Patty on July 09, 2016, 03:09:50 pm

Hi Everyone,
Guess who has finished her treatment??? Me

CONGRATS PATTY !!!

kim

Patty · « **Reply #45 on:** July 09, 2016, 03:30:23 pm »

Thanks Kimin TheForest

Patty · « **Reply #46 on:** July 09, 2016, 03:37:43 pm »

I've tried to post 2x today, but after I hit post its gone. So not sure why, but I had a lot to say, lol. Wanted to thank everyone for their support and tips to get through this and welcome are new comers. But I'm too tired now to type it all out again. I will keep in touch and please PM if you want some tips to get you through, because it's not as easy as they said it would be. Sometimes the pain was excruciating. Love to you All and may we soon have a hep-C FREE world

FutureThinker · « **Reply #47 on:** July 09, 2016, 03:49:26 pm »

Patty, so very glad you got thru this, I know it was difficult for you!!!!!!!!! Now on to SVR!!! FT

folsom · « **Reply #48 on:** July 09, 2016, 04:26:49 pm »

Patty - This is so much more than most of us anticipated, getting to the end is sweet indeed. Enjoy your success and the peace of mind it brings.

Mila · « **Reply #49 on:** July 10, 2016, 01:10:07 am »

Patty~
Tho I only just got here, Congratulations on your freedom!

~Mila

morab · « **Reply #50 on:** July 10, 2016, 08:09:22 am »

Congratulation Patty
I just reached the end, of treatment that is!
morab

brie41 · « **Reply #51 on:** July 10, 2016, 10:23:09 am »

Congrats to Patty and Morab on finishing up your treatment. Best of luck in the days ahead!! Brie

AuntieCanuck · « **Reply #52 on:** July 10, 2016, 08:14:58 pm »

Quote from: Patty on April 25, 2016, 07:07:25 pm

Patty - I too have health issues and am about to start Harvoni. I already have arthritis and pinched nerve pain, and IBD, and see so many complaining of body aches worsening on Harvoni, so I went hunting.

So far, I've found out that the body aches are most likely from the rise in creatinine that occurs with Harvoni. It's because Harvoni metabolizes thru the kidneys, making getting rid of creatinine a whole lot harder.

The treatment is a dietary change to lower protein and higher carbs (they mean GOOD carbs from veggies, not from refined starchy stuff!), as well as avoiding foods that increase the level of some minerals in our bloodstream that make the kidneys work harder. This eases the load on the kidneys so they can deal with the Harvoni.

Hang on - I'll grab a copy/paste of the notes I made:

Eating less protein will enable the kidneys to more easily filter creatinine out of the blood. With a reduced workload, the kidneys do not have to work as hard to maintain normal fluid and electrolyte balances. Eating less protein reduces the amount of creatinine the body produces. Both of these things make it easier for the kidneys to filter creatinine out of the blood and reduce creatinine levels. Following this type of diet may also slow the progression of kidney disease.

Here are the foods to eat and foods to LIMIT (that does not mean totally BAN them, right??!!)

- High-potassium foods to limit: tomatoes, oranges, bananas, potatoes, broccoli, chocolate and nuts.
- High sodium foods to limit: fast food, frozen meals, canned vegetables, pickled/cured meats, canned soups, cheese, salted pretzels, salted potato chips.
- High phosphorus foods to limit: include corn, chocolate, dairy products, fish. organ meats, beans, and eggs.
- High protein foods to limit: red meat, poultry, fish and nuts have highest levels of protein.

Instead eat:
- Low sodium foods: Fresh fruits and vegetables, meats and seafood prepared without salt, pasta, rice, and milk. (Get a supply of Mrs Dash - assorted spice blend with all kinds of good stuff but NO salt)
- Low-potassium foods: fruits and vegetables, such as apples, blueberries, corn and cucumbers (check it out: one place says corn is OK and the list above says to avoid - go figure!)

Note that is REDUCE but don't eliminate all those foods all the time! You need enough to be healthy.

Don't eliminate protein consumption either - just reduce the amount! Your diet should have 0.6 grams of protein for every kilogram of body weight each day. This means a 160 pound person would need to eat 43.6 grams of protein each day. The Institute of Medicine recommends 46 grams of protein per day for healthy females and 56 grams of protein per day for healthy males.

Patty · « **Reply #53 on:** July 10, 2016, 09:40:20 pm »

Thank you everyone for the well wishes, Morab CONGRATS !! I'm so happy and proud of you,
Patty

Patty · « **Reply #54 on:** July 10, 2016, 09:50:42 pm »

Hey guys,
I may be done with treatment but I still need your help. I'm in a lot of pain! Off the chart Pain, I'm pushing water and taking the pain Meds but they are not touching it. I asked Drs if I could do a detox or liver cleanse they said NO ! Why

Will it mess up the treatment ? I just feel I need to get this poison out of my system. My back and hips and feet and hands heck every joint in my body hurts. I suffer from seizures and pain is my trigger....so needless to say I have bruises everywhere from the seizures. If anyone else is having problems or had some how long did it take to feel good again. I was suppose to be planning my wedding...I've put it on hold, I just can't deal with that right now. Any advise would be helpful. And thank you All for your support and encouragement !!
Patty

KimInTheForest · « **Reply #55 on:** July 10, 2016, 10:02:59 pm »

Quote from: Patty on July 10, 2016, 09:50:42 pm

Hey guys,
I may be done with treatment but I still need your help. I'm in a lot of pain! Off the chart Pain, I'm pushing water and taking the pain Meds but they are not touching it. I asked Drs if I could do a detox or liver cleanse they said NO ! Why Will it mess up the treatment ? I just feel I need to get this poison out of my system. My back and hips and feet and hands heck every joint in my body hurts. I suffer from seizures and pain is my trigger....so needless to say I have bruises everywhere from the seizures. If anyone else is having problems or had some how long did it take to feel good again. I was suppose to be planning my wedding...I've put it on hold, I just can't deal with that right now. Any advise would be helpful. And thank you All for your support and encouragement !!
Patty

Hi Patty. I don't know that a liver cleanse would mess up the treatment (which is now over). But it does demand a lot of the liver itself, which has already had a lot demanded of it during treatment. So if it were me, I would let my liver rest and look at other ways to detox. Specifically, I would try epsom salt baths, sauna (or anything that makes you sweat), and lymphatic drainage self massage. Here is a link with good illustrated instructions on the lymphatic self massage: http://www.massagetoday.com/mpacms/mt/article.php?id=14639 . (I hope it is ok to post this link. It is not selling any kind of product.)

best,
kim

Patty · « **Reply #56 on:** July 10, 2016, 10:18:37 pm »

Thanks Kim,
I will check it out, my family said same thing take a week to let liver rest and than start, one thing my Mom has been doing is reflexology on my hands and feet, to help naturally detox. It's worth a try. I'm miserable. Will keep you in the loop. I hi labs drawn next week and will post.
Patty

morab · « **Reply #57 on:** July 11, 2016, 09:36:34 am »

Patty
Looks like we both finished tx together! Yes I am also having severe pain in my back, hips, legs and feet and am miserable. Also the lymph node swollen urggg.
My Dr. said wait 2 days and then detox. I am going to take food grade diatomacious earth to help get the toxins out of my body, a good quality curcumin for inflamation, and Ultra thistle by natural wellness to get my liver back in shape.
All these things were ok'd by my doc, but he is one of a very few who actually believe in herbal medications as a big plus!
Good luck and keep us posted.
morab

Mila · « **Reply #58 on:** July 11, 2016, 03:09:41 pm »

Congrats to morab too!

AuntieCanuck thank you for your notes. What stood out to me most was the Don't eat list. As I read I realized that everything I have been craving madly is on that list. I always have a chocolate craving and a bit of a sweet tooth but I have been MAD for all those things on the list. I've never liked salt but I can't get enough of it since I started Harvoni. Crunchy cold water, chocolate, anything really cold, broccoli...my list is comparable to your list. There have been days where my kidneys have be sore and now I know why.

Its so confusing to be on this drug. I feel right in the morning and then as the day goes it starts to come on. Then I take my pill at 2pm and after an hour its all downhill until I finally go to sleep in my bed vs my sofa. Then I wake up and begin again.

I look forward to the end of this. Good for you Patty and morab. Thanks for all you have shared!

Mila · « **Reply #59 on:** July 11, 2016, 03:11:48 pm »

On a different but same note...

Its hard enough to figure out what you can eat but after reading this
http://nyp.st/29w3NRJ

Eeeessssssh!

SomewhereinTX · « **Reply #60 on:** July 11, 2016, 07:21:13 pm »

Quote from: folsom on July 05, 2016, 06:57:09 pm

I'm at the end of the 7th week of Harvoni - and I can barely walk from the joint, hip and leg pain. It sometimes radiates to the back and knee. It is so severe that I have to use a cane if i need to walk or stand for any length of time (like at a museum). Knowing that its temporary is the only thing keeping me from freaking out.
Bleeding of the mucous membranes as well - rather a sleeper of a side effect but VERY VERY real.

I am awaiting my results from the 6 week lab - the 4 week showed merely detectable and my Dr is asking for an additional 4 weeks even though I had 4 weeks to go at that time. Hopefully the 6 week labs will show NOT detectable and I won't need the extra 4 weeks. But if I do, so be it. I'll make it through. Because I know (devoutly hope anyway) that its temporary.

Actually I hope my Dr. tries for another 4 weeks for me.
He told me I would have a 12 week tx. but the insurance made the decision for 8 weeks instead. Though I fit the criteria for 8 weeks my Nurse Practitioner told me that they prefer to put patients through 12 wks. of treatment but insurance overruled them.

Want to make sure I get entirely rid of this for good.

So far in the 4th day of week 3 I have only noticed a little more fatigue than usual but since my hours are unusual it's fairly normal for me and only when I first wake for a while.

Hope all goes well for you and side effects lessen with time.

morab · « **Reply #61 on:** July 11, 2016, 08:45:20 pm »

Somewherein TX
What is your geno type? Good to hear from folks having very few side effects.
Keep trying to get your insurance to pay, it seems that 12 weeks of tx is what they are really prescribing more often than 8.
Good luck with continued success and few side effects.
morab

SomewhereinTX · « **Reply #62 on:** July 11, 2016, 09:45:59 pm »

I'm type 1a and was diagnosed last November with a viral load of 1.1 million at that time.

At Stage 2-3 fibrosis but have not been told any thing else as ALT or AST.
Have an appointment next Tuesday for my 4 week blood work (albeit a 4 days short of 4 actual weeks) but will only see the girl that draws my blood.

It is like pulling teeth getting to get anyone in the Office to spend more than a minute or two informing me but I will inquire about it while there. I have a Patient Representative but she is the hardest to get with though she should be the easiest.

Had to take a picture with my phone of the screen when I had my Fibroscan and then get on the internet to find out what it meant and what stage I was at.

Anyway after taking supplements since December (which may or may not have helped) my viral load was down to 316k when I finally started treatment June 24th, a 68% drop.

Thanks for the good wishes and will see what transpires with the side effects as I see some go through different things throughout the course of their treatment.

Patty · « **Reply #63 on:** July 13, 2016, 04:37:40 pm »

Hi everyone,
Just an update, still hurting, still struggling ...but your tips have helped. Epsom salt bath, can't really take any supplements just yet have another test to do(blood wrk).
I've been doing some research and feel that are immune systems have thrown out of whack. With some developing auto immune diseases especially RA. With that being said I'm not a doctor just someone who learned a long time ago to be my own advocate. I'm sched to have some shots in my back to help with pain from auto accident. Will be glad for them because this treatment has intensified the pain. I'm drinking distilled water, it helps to detox your system. Anyone else still having tummy troubles...I've decided to just let it go...figured it is getting rid of toxins so don't want to stop it, but it is bothersome , LOL. I'm using bio freeze to rub on my sore muscles, it helps a little. Do it after the warm Epsom salt bath. Reflexology on hands and feet. And a lot of prayer !! Good luck everyone and yes I did call the company and told them about my symptoms and they were happy to hear about them and opened a file. Here is to a Hep-C FREE world one day
Patty

Rosie13 · « **Reply #64 on:** August 19, 2016, 10:23:18 pm »

Hi guys,I have been reading this thread all the way thru before posting & hope all is well with all the sides that you have been experiencing.I as going through treatment last Sept.& remember someone posting about the aches ...they pictured all the dead HepC cells floating around causing havoc.It doesn't want to leave quietly! Hang in there..we are all thriving after HepC!

Mila · « **Reply #65 on:** August 23, 2016, 01:17:53 am »

Hi Patty~
I'm sorry you're having such troubles. It does seem to make any injured area more painful...as if it knows exactly where to go right? I have no remedy for that. I stretch and bend as much as possible, but I do wake up in the night with pain I don't know where it comes from. I have had a little stomach trouble with it. I have 7 more days and the last few days are the first I've had the nausea. I've been taking 3 acidopholus capsules a day and it really has helped throughout the last 11 weeks. I started taking magnesium around week 5 because things just stopped up for a few days. That and a steady diet of dried prunes. Magnesium and copious amounts of water seem to help some with the pain as well.

Like I said before, I just keep telling myself its almost over its almost over. Because for me it is and it will be for you soon too.

And anyone else who is just starting or in the midst or almost done... This is temporary and the result will be freedom from a certain early and unpleasant demise. You can do anything for 12 weeks! Especially get rid of a deadly disease

~Mila

folsom · « **Reply #66 on:** August 23, 2016, 10:31:52 am »

I am 2 weeks post-treatment - undetected and all is well on the Hep C front.
I experienced numerous side-effects, many not common.
Here is the short list:

•   Headache – relieved by drinking several 12 oz glasses of water.
•   Rash on face and neck. Itchy red bumps. Referred to Folsom Dermatology who prescribed antibiotic lotion which cleared it up quickly.
•   Mucous Membrane bleeding due to taking NSAIDs (had to really dig for this one)
•   Within 1 week my previously injured tailbone hurt again, as much as it had within days of the bruising.
•   Within 2 weeks my hips, legs, and lower back began to ache severely.
My stride was severely shortened due to pain.
Pain with adduction or abduction of hips or legs.
Pain with any sudden movement with legs or hips.
Pain at night, unable to sleep through the night, had to move from bed to couch to chair etc.
Could not walk for long periods or very far.
Ileopsoas Bursitis got exponentially worse and all the symptoms along with it.
Lower Back went out twice, possibly due to odd gait caused by pain.
Whole pelvic girdle area was unable to stretch.

From the beginning of the treatment I had increased my water intake to 48 – 60 oz per day but during the last 4 weeks I increased it to 80-100 oz. per day. The joint and muscle pain seemed to benefit from the increased intake.

I am happy to say that I almost have my life back. During the 12 weeks I often thought I was losing my grip on reality. Could it all be Harvoni? YES. If you understand that and understand that it will go away after the treatment you can make it through.
I'd like to see the company make these side effects more well known but at least there is this forum to keep us sane.
Best of luck everyone - its worth it

morab · « **Reply #67 on:** August 23, 2016, 10:48:15 am »

folsom
You symptoms were exactly the same as mine! Yes why, when all other medication adds a long list of symptoms? Yet they are not listing all these for Harvoni?
It is just too common on the forum for those of us with all the same pains going!
I am about 6-7 weeks post Harvoni and beginning to feel like a human being again. Back to my normal pain issues and the brain fog is leaving.
I feel like the medication Harvoni is just now finally leaving my system.
morab

folsom · « **Reply #68 on:** August 23, 2016, 10:56:51 am »

SO glad to hear you're returning to normal as well. It was very kind of you to reach out when I was in the midst of it; it meant a lot and kept me going.
Very grateful to the very generous people on the forum.
I can only hope that someone from Gilead is reading this forum and makes the information on the less common but confirmed symptoms more readily available.

morab · « **Reply #69 on:** August 23, 2016, 11:06:43 am »

folsom
I agree but I sure do not see that happening. Many of us on the forum have reported to Gilead. I called them several times and seemed to always get someone who thought I was NUTS! It is time for Gilead to listen to those of us who have these symptoms. There are just way too many of us with the same symptoms for them to continue to ignore us.
I am so glad to see you feeling better.
I was undetected at 4 weeks in and all my liver enzymes are normal since then. I am 99% sure that I am cured and have no worries about that!
Glad I was a comfort to you in your time of need.
This forum kept me from loosing my mind during that 12 weeks of hell!
Good luck in your continued success of healing!
morab

Mila · « **Reply #70 on:** August 23, 2016, 05:09:57 pm »

Folsom~
Thank you for posting the way that you did. With the exception of the rash and bleeding, my list is exactly your list. Pretty much week by week.

I have also had
grand fatigue and strange weakness
This past week, week 11 the fatigue has started to go but now I'm kind of buzzing at all hours and I have a lot more pain in my low back, hips and iliopsoas especially in the mornings. Starts every day 90 minutes after I take my pill.

I'm in my last week now and I am certainly more awake and alert that during any of the previous 11 weeks. The pain is still quite bad so I'm taking it easy when my body tells me to do so. Stretching and incredible amounts of water do seem to lower the pain & headache factors. My spine feels twisted. I have a plate in my neck and have been having a lot of neck pain which I did not have pre-harvoni. It feels like the drug seeks out anything irregular in the body and attacks it.

Anyway...its great to hear that this does end after the harvoni does, and great to hear that people a year off are still HepC free. Very encouraging.

In the back of my mind every time I see a bad drug commercial I hope they're not going to say "If you or someone you know took Harvoni..." Its some powerful s***.

~mila

folsom · « **Reply #71 on:** August 23, 2016, 05:27:58 pm »

I think its really interesting that so many people came to the conclusion that it 'attacks' anything that is irregular or already an issue. That is such an important clue to Gilead and would be helpful for people beginning the treatment to know.
I do think we're the better for it but agree that its some strong ju-ju.

Nicola000 · « **Reply #72 on:** August 23, 2016, 07:48:07 pm »

Hi,
Yes, it is a strange drug thats for sure. I agree with what was said above.
I too, have cycled through many side effects, some of which resolved themselves.
I have no idea what each new day will bring. Oh the Joy !

This is my laundry list, which is so similar to you Morab, Folsom, Mila, Patty and others.

Week 1-2 Didnt start well. Crushing headache, nausea and cognitive impairment (BIG TIME) I chose that day to have the other school mothers over for lunch, which will be forever scorched into my memory as the Harvoni lunch from hell.

This lunch involved me entertaining five 8 year old children and their mothers whilst in the grip of brain fog, harvoni headache and my face going numb. The lunch was undercatered (couldnt read the shopping list at the supermarket), disorganised (left some of the shopping bags AT the supermarket) and I had to manipulate one of the guests into putting on the oven as I couldnt remember how to do it. Nor could I follow the conversation. Well, you get the picture. I didnt know whether to call it off or call an ambulance. I did neither and somehow got through it as a half zombie and half stresshead. Its pretty funny in hindsight. But sorry, I digress.....

Week 2 - Left foot and fingers went numb, and as I have described elsewhere, resulted in a fall down the stairs, 4 broken bones and a wheelchair which I remain in.
The came the rash, more headaches etc. Rash went after 2 weeks.

My favourite was week 5-6 when I had a dizzy spell where the room spun for 8 days, near fainting and high grade nausea.

Now in week 9. I actually had a good day 2 days ago, with no sides.
But hello, the headache retuned to greet me, as well as the nausea yesterday.
Anyone else gone off their food ? Even my favourite dishes are horrible to me now. Everything tastes awful. Even sugar.

Tomorrow I see my orthopedic surgeon to see how my foot bone has healed. This is a big moment for me as I get my cast taken off (hopefully) and I get to touch my foot to see if it is still numb or not. This has been my scariest thought, that the nerve damage is permanent.
I didnt have the joint pain that you all had, but I feel like that was relaced by numbness in my case. There is something going on with this, I agree there are too many of us.
I looked up antiviral induced miochondrial toxicity last night, but who knows ?

I am so heartended that some of you are feeling beter post treatment. I is so encouraging.
Thanks for reading my laundry list, it helped toget it out.
Nicola

morab · « **Reply #73 on:** August 23, 2016, 09:28:30 pm »

Nikola
The food thing you mentioned. I seemed to be allergic to food in general and have severe Gi gas and pain. I lived on nuts many walnuts and dried mango,,,,,,,a fresh egg from our chickens and a piece of toast with real butter
were many of my meals or I suffered,,,,, if I ate gluten or meat.? I suffered
The brain fog was so bad I had to keep notes just to remember the symptoms.
Now, I am regaining strength. Most pains were ones I already had!
There is hope and as Future Thinker says
Our future is Bright
Morab

Mila · « **Reply #74 on:** August 24, 2016, 06:01:39 pm »

Nicola~
WOW!
Because I have a neck injury I just assumed all the numbness in my hands was because it was failing again. I don't know whether to be relieved or not...Yes on the brain fog too, there have been days I've had to drive the smallest distances and thought while driving "I should not be driving a car" in fright and trying to get home both quickly and safely. I take my pill at 3pm so I have at least a few hours in the day that my brain mostly works and can get things done. Last week I was so weak I couldn't hold up a 3lb weight in my exercise class. Something I have been doing once to twice a week for 20+ years.

My chiropractor can't believe what I'm going through. He has some other patients that are having similar experiences and he can't figure out why Gilead doesn't say something. My bones are actually twisting themselves up because of all the pain my body is in. This is some crazy stuff. It will pass...it will pass...it will pass...

morab~
I agree about the foods. My diet has been so altered by Harvoni. Nothing tastes good. I think I've probably thrown away food I thought was bad because its tasted so awful. Not to mention that most things stop me up or bloat me up beyond comfort...I'm currently on a mostly sugar diet and even that is getting old. When fresh fudge starts tasting bad something is very wrong. I keep telling myself 6- more days and counting...

You are also right..
Our future is bright!

~mila

morab · « **Reply #75 on:** August 24, 2016, 06:15:15 pm »

Mila
When does your tx end? I am getting close to EOT 8 weeks and am getting better, still have severe fatigue some days, a little GI issues, but things are getting back to pre Harvoni pain issues.
I am doing a major detox with supplements and minerals. I do believe this is helping me go forward to less symptomatic of what I am calling The Havoni Effect.
We all need to continue to call Gilead and tell them to change their TV adds to include our symptoms!
Good Luck and keep us posted
Morab

Mila · « **Reply #76 on:** August 24, 2016, 06:28:55 pm »

morab~
My last pill is next Tuesday the 30th. I'm starting my detox with a mud bath the following day. Then lots of juicing after that. I worked in an organic juicebar years ago and still have some great recipes, one in particular called the Liver Lover chock full of all kinds of happy body making things. I am happy to share ingredients & recipes because they really help to detoxify the body if anyone wants them.

Yes...we do need to push Gilead to be more honest in the side effects. Its not as though they are being dishonest, but its really a lie of omission what they say. Headache, fatigue and weakness ARE true side effects, but those are the tolerable ones. My Dr. tells me its not the harvoni. Excuse me...but WTF does she know of it? She's reading the propaganda not her patients.

Do we start a petition? What would be the best way to get Gilead to own up? I mean the drug works but you should be able to have a paid leave of absence while on this drug. The brain fog alone is enough to keep someone from being properly productive. I have been out of work for this adventure. I thought that was going to be a terrible thing, but I'm glad. I wouldn't have been able to hold down a job through this.

~mila

KimInTheForest · « **Reply #77 on:** August 24, 2016, 06:53:43 pm »

I would like some of those detox juice recipes, Mila. I plan to get into juicing.

kim

morab · « **Reply #78 on:** August 24, 2016, 07:00:10 pm »

Mila
I would love to use your recipes!
How would we even go about getting Gilead to own up? The only ones I know having problems are here on the forum! I will call them again this week and keep after them about this!
What kind of mud do you use for your mud bath? It sounds so cleansing!
Mila you are not far from your end date. I felt like it took me a month to get the drug out of my system.....can't prove it
Looking forward to you and so many of us graduate this year!
morab

Mila · « **Reply #79 on:** August 24, 2016, 07:52:42 pm »

Kim & morab ~
I can post the recipes here. But it might be easier to make them up and post the link here to make more accessible to all of them and anyone else interested.
I will get it together and post a link in a few days.

~mila

morab · « **Reply #80 on:** August 24, 2016, 08:10:36 pm »

Mila
Thank you so very much!
morab

Mila · « **Reply #81 on:** August 24, 2016, 08:12:45 pm »

Happy to help if I can!

Karin · « **Reply #82 on:** August 24, 2016, 08:26:01 pm »

Hi, i am undetectable at 4 weeks, I am just starting week six of Harvoni and the side effects are beginning i think?? My stomach has bothered me since the beginning, with gas and bloating and a lot of bowel movements(sorry) thought it was just stress. Now i am not so sure. My stomach is blown up like a basketball and i am so nauseous and exhausted today hoping its something i ate and tomorrow will be better. OH ya kinda achey also..... thx for listening

Mila · « **Reply #83 on:** August 24, 2016, 09:10:15 pm »

Hi Karen
Congrats on your status!

I had/have a lot of gassy bloating. Still do. Just stop eating anything carbonated and beans or any gassy foods. It makes it more bearable. For me its worse with dairy like milk products. Never happened before Harvoni.

Drink more water than you think you need. Sleep when you need to, stretch often and take hot epsom salt baths for the pains. Its great that you've had a relatively side effect free journey so far. Hopefully the rest will be mild to none for you.

Psyllium husk is great for runny bowels. It doesn't interact with the drug either. Acidopholous is good for the nausea. Helps keep your gut happy. Also does not interact with the drug.

Feel better and your half way there!

~Mila

Karin · « **Reply #84 on:** August 24, 2016, 11:52:38 pm »

Thanks for your suggestions, the bath sounds wonderful

I really do not eat dairy anymore, i eat a mostly a plant based diet with some chicken and fish. No red meat or pork ever. No white sugar and no white bread. I do eat some sweets though ..... Geez got to have something. I do believe diet can help with this recovery. Yes i too will detox after I'm finished with TX. I hope we all get through this free and clear of this disease from Hell. I have no idea how i contracted it but sure it was a long time ago because of the damage i have to my liver it is an f3. So for me this battle will be a lifetime, but i have a lot to live for. Going to be a grandma in about 3 weeks

thank you again

Karin · « **Reply #85 on:** August 25, 2016, 01:17:34 pm »

Hello Again, Quick question.... Did any one have there hair thinning out while on treatment? and does it come back after? thx

Karin · « **Reply #86 on:** August 25, 2016, 03:45:15 pm »

Component Your Value Standard Range Flag
Hepatitis C RNA Quant Not Detected IU/mL IU/mL
An interpretation of "Not Detected" does not rule out the presence of
Hepatitis C virus RNA concentrations below the level of detection
of the assay.
Linear Detection Range = 15 - 100,000,000 IU/mL.
Care should be taken when interpreting any single viral load determination.
UCSD Health System uses an FDA approved Hepatitis C assay for detection by
Real Time PCR.
THIS IS WHAT IT SAID IN MY CHART, SO IGUESS EVEN THOUGH IM UNDETECTED I COULD STILL HAVE THE VIRUS BUT AT LOW LEVELS. I WONDER IF THEY CAN EVER COMPLETELYSAY ITS GONE???

morab · « **Reply #87 on:** August 25, 2016, 09:11:33 pm »

Quote from: Karin on August 25, 2016, 01:17:34 pm

Hello Again, Quick question.... Did any one have there hair thinning out while on treatment? and does it come back after? thx

wow Karin
I have lost soooo much hair...and hoping it comes back
morab

morab · « **Reply #88 on:** August 25, 2016, 09:13:03 pm »

Karin
Not detected is GONE,,,,other's chime in but that is really fantastic news
i think
morab

Mila · « **Reply #89 on:** August 26, 2016, 11:34:01 am »

Karin~
Undetected is undetected. And

CONGRATULATIONS!!

on that! That is huge!

They base it on being under or over certain numbers. When they say undetected it means there is not active virus in the blood to harm you. As I understand it, there will always be a "marker" in your blood that the disease was there. That does not mean its active or dormant. Just that is was previously there. Its like when you have the flu (or whatever illnesses leave markers) the fact that you had it still shows in your blood. It does not mean you are still infected.

I certainly can not promise you anything but this is my understanding of what is occurring and has occurred. If anyone here knows more or understands better than this PLEASE do tell us what you know!

I am at 11+ weeks with no detection at my 8 week blood test. I have my 12 week test next week and then in 6 months and then a year. The harvoni make me feel like crap all the time too.

As far as the hair loss...I haven't noticed more than the usual summer shedding. We loose 80-200+ hairs from our heads every day. More in the summer. (Yes, like cats and dogs we also shed seasonally). Lots more if you have lots of hair. Any time the body has physical stresses like illness we loose hair. Its not a necessary function to live, so the body considers it expendable even as we protest that mistake. Usually it will grow back unless there is serious damage to the folicles.

This is not to say that if you find yourself losing hair that you are sick. Again, you have been loosing hair every day from the first day you grew it. Its normal.

Don't let this Harvoni thing get you down! It causes depression and all kinds of other unpleasant s**t. If you can just tell yourself that this is all temporary and it will go away in 8 weeks and then you can go on with your happy life. This is just an unpleasant but necessary interlude into YUK. In truth, the most unpleasant thing you had going happened before the Harvoni. 12 weeks of this crap is doable.

If you truly believe you are having serious side effects that you can't live with go to your doctor ASAP. Otherwise, I'm pretty sure no one will mind if you come here to bitch about it because we are going through it along with you. It surely made me feel more sane and comforted after I read what everyone else is going through.

You are not alone.

~Mila

crabby old guy · « **Reply #90 on:** August 26, 2016, 03:42:51 pm »

To Mila and other detoxers,
What is involved with doing this, I've looked it up and get conflicting results, some say don't waste your time, others swear by it. Is it just getting rid of the meds faster? EOT is in 7 days and I would like to get back to my normal crabby self minus the med induced stuff. Thanks

morab · « **Reply #91 on:** August 26, 2016, 06:26:00 pm »

Quote from: Karin on August 24, 2016, 08:26:01 pm

Hi, i am undetectable at 4 weeks, I am just starting week six of Harvoni and the side effects are beginning i think?? My stomach has bothered me since the beginning, with gas and bloating and a lot of bowel movements(sorry) thought it was just stress. Now i am not so sure. My stomach is blown up like a basketball and i am so nauseous and exhausted today hoping its something i ate and tomorrow will be better. OH ya kinda achey also..... thx for listening

Hang in there Karin
The time will fly by and yes you are experiencing the side effects of Harvoni, stomach bloating, aches and pains, drink lots of water and rest as much as possible!
Good luck and keep us posted on how you are doing
Morab

Karin · « **Reply #92 on:** August 28, 2016, 12:02:13 am »

Hi Everyone! Thanks for all your input. I have not had a day like on the 24th again thank God. Today i had a awful head ache,but took a tylenol and it got better.I do have a constant dull head ache though. Glad u are all out there supporting me i really appreciate you all.

Mila · « **Reply #93 on:** August 29, 2016, 01:52:11 pm »

Grumpy Old Guy~
The idea behind juicing for detoxing...and I am not talking about eating nothing but juice, I am talking about adding healthy, fresh juices to your diet that will help to flush out your organs while adding vitamins and minerals that you naturally absorb back into the body. These vitamins and minerals give the organs the support they need to do what they are supposed to do had they not been grossly interrupted by whatever the HepC and then the Harvoni has done. Harvoni acts by interrupting the reproductive chains in the virus itself. The virus interrupted the health of our livers and whatever else its damaged inside of us. Juicing is a supporting action to the organ health and nothing more. Its not a diet and its not a be all, end all, cure all. Its just good for you. The idea of detoxing is assist your body in removing whatever has been left behind by the disease and the drug.

NOTE: I have no information on how Harvoni effects our bodies other than my own experiences and what I have read here. I am not a doctor, nor do I work in the medical profession, I just read the insert that came with the pills and as much information as I could glean from Gilead, the FDA and the internet.

Today is my last day on Harvoni!!

Let the detox begin!!

~Mila

crabby old guy · « **Reply #94 on:** August 30, 2016, 01:31:23 am »

Mila,
Congratulations on eot, mine is Thur Pretty Nice B Day present,and thanks for the info.

Mila · « **Reply #95 on:** August 31, 2016, 02:46:01 pm »

First day I woke up without a Harvoni hangover in 3 months!
Did my 12 week blood test yesterday. Will know next week what's up.

I am sorry to anyone looking forward to juice recipes..its been a hectic week with Drs and tests and even a job interview (crossing fingers and toes!). I will get them up ASAP I promise.

Last night was strange, I felt really ill and was wondering if that was because in some way my body was craving, expecting the harvoni. I went to bed early and had one of the worst night sleeps ever but I felt really good this morning.

Hoping its a trend.
~Mila

P.S. Karin~
drink more water than you can stand it should help keep the headaches manageable.

KimInTheForest · « **Reply #96 on:** August 31, 2016, 03:08:56 pm »

Congrats on finishing treatment, Mila!

kim

Mila · « **Reply #97 on:** September 02, 2016, 05:10:14 pm »

Thank you Kim!

I was thinking it might be better for people to report side effects to the FDA and Gilead.
That way perhaps they can be held accountable and not hide side effects like some of the horrors that have been posted here.

http://www.fda.gov/Safety/MedWatch/

I urge you to go here and fill out the form or call the FDA directly to report.

~Mila

Mila · « **Reply #98 on:** September 02, 2016, 06:06:41 pm »

Here is a link to the juice recipes.

https://forums.hepmag.com/index.php?topic=4416.new#new

Just posted literally 2 minutes ago so give it a few minutes.

~Mila

morab · « **Reply #99 on:** September 02, 2016, 06:45:47 pm »

Thanks Mila,
I just did the report to the FDA on Harvoni! All of us who are symptomatic should do this, also thanks for the juicing info.
morab

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