Author Topic: Harvoni Side effects (Read 2190826 times)

Asherah12 · « **Reply #1000 on:** February 09, 2015, 11:26:15 am »

Anyone besides me experiencing side effects from ending the treatment? I was used to the Harvoni, but since stopping have experienced a lot of fatigue and some wierd digestion issues. It's only been four days, after three months of treatment. I have been no detectable viral load since the end of the first month, down from 2 million. At border of 2 and 3 on the liver hardness scale. Thanks!

Bob V · « **Reply #1001 on:** February 09, 2015, 11:47:55 am »

I've not had any issues with my BP or HR since starting Harvoni. Today will be dose 62 of 84.
On my run yesterday I noticed my HR was high and inconstant for effort. Even stopped and it continued to be high. I was stopped at one point and started to get dizzy looked down and my HR was climbing.... I guess it could of been my HR adjusting to hypotension. I walked the last couple of miles home. Took my BP after eating and it was kinda low 82/60, HR 80. Normal BP for me is 90/60-110/80 so nothing to worry about.

This morning I woke up and I knew I wasn't feeling right. Before getting out of bed I checked my BP 137/80, HR 70. My resting HR is normally 38-42. I've never had a BP that high. If I don't come down with a cold/flu I gotta think it's the Harvoni.

So it's going to be a TV day..maybe take the dog on a good walk.

Ruthie · « **Reply #1002 on:** February 09, 2015, 12:28:55 pm »

Thanks for the advice, Eric. I took it last night with a bowl of soup. I'm wondering if I had too much on my stomach. But my stomach is such a princess that it may not matter LOL

After a couple cups of coffee and water, my headache went away, so that's a good thing.

Now I just feel blah. I have to believe that's the nasty bug fighting and losing the battle against the Harvoni

Karen1124 · « **Reply #1003 on:** February 09, 2015, 01:02:20 pm »

Day 5 of Harvoni I've had cold hands and feet twice! I feel like I have more energy! So far so good! I've been drinking a lot of water. (As suggested on this forum) Does anyone know if you can do castor oil packs while on Harvoni? Have a good day soldiers! Karen

hope4cure · « **Reply #1004 on:** February 09, 2015, 01:08:04 pm »

Finished week 3 on 2/6 and the only side effect I continue to feel is fatigue. If I am not keeping busy, I end up taking a nap for about 2 hours in the afternoon. I am finding that I am really tired after work, more than normal. The one nice thing about the fatigue is being able to fall asleep very quickly at night.

All and all, no complaints so far. Looking back, I would have started to take the pill at night, but I felt the morning time was easier to remember to take and within the same hour each day as recommend.

This week is the big 4 week lab work. I'm nervous and excited at the same time.

nicole_1234 · « **Reply #1005 on:** February 09, 2015, 03:11:05 pm »

Quote from: moma on February 03, 2015, 01:57:48 pm

Holy Mole! I had a total break down last night. It started with anxiety and went into a full blown panic attack. Thoughts like, what do we know about the long term effects of this drug? Like I was being poisoned and used as a lab rat. Everything closed in on me. I finely took a lorazapam and calmed down after crying for an hour. My poor husband kept saying "it's just the medicine talking, everything is alright". I think if I had not gone through Interferon and had such a horrible reaction to it I wouldn't be so freaked out about Harvoni side effects. I know it's not the same, but when I broke out the other day in a rash I was immediately back 10 years ago taking Interferon. I'm into my 3rd week. Are any of you having depression on this? I'm usually a calm easy going person, not much bothers me. I feel like I'm going to jump out of my skin!!!!
MoMa

Hi Moma! I had the exact same thing for weeks 2-4 on Harvoni and had to take Ativan to help with panic attacks. I also had a couple of bouts of crying that were quite terrifying. I think it was a combo of being triggered emotionally by starting treatment (like you the horrors of interferon came flashing back to me), and the chemical effect of the medicine. I cannot say for sure why the anxiety stopped but I believe my body acclimated to it after a few weeks and my emotions were comforted when I got my first test that said undetected.

I agree that I wish my nurse had not said no one has side effects because it was a terribly lonely place feeling alone in my inability to cope.

What helped me when I was having anxiety was warm baths, lavender and aromatherapy, any self care like abyanga (warm oil self massage). The Ativan actually made it worse for me. It curbed the anxiety but brought on a depression like none other.

I am 10 weeks in and doing great now other than a headache in the mornings. Although my body is really achy and I wanted to ask anyone on the forum if they are finding their muscles and bones hurting. My the thoracic spine shoulders and neck were bothering me so much I got a massage yesterday but then I woke up with the worst headache ever. It her to move and took me two hours to get out of bed. Now I feel okay with several waters coffee and Tylenol. Two more weeks to go, I hope once I stop treatment I bounce back quickly and the morning headaches stop.

Katie · « **Reply #1006 on:** February 09, 2015, 04:15:54 pm »

Hi Nicole and Moma....yes there can be many different side effects for different people as this forum has shown. Makes you wonder if the test folks were asked the right questions or felt intimidated by mentioning those effects that came and went or weren't that big of a deal.

I already have a lot of muscle and bone aches to begin with, however have had a few new ones pop up, on and off. The cord in my neck, going to my shoulder would be so painful at times it would take my breath away. Fortunately I have a tens unit and that took it away after about 20 minutes. I have never experienced anything like that before and it has stopped.

I was really happy when I first started, almost giddy from the treatment. Harvoni definitely affects your mood. Very happy but no motivation. Since week 9 I am no longer happy. I wouldn't say depressed but probably close to it and my new found energy is depleted. Very tired and kind of sick feeling so I remind myself my system is probably saturated with the medication and my system is working overtime and it will soon be over. (Feb 25th is EOT).

All in all, I am having an easy go of it compared so many, but certainly sympathize with you. Hopefully everything will mellow out as the Harvoni leaves our systems and we no longer battle the alien parasite of Hep C so stay diligent and do whatever it takes to feel better! Wednesday is acupuncture for me!

We are warriors and we will win.

Katheen

nicole_1234 · « **Reply #1007 on:** February 09, 2015, 04:22:04 pm »

Wow Katheen we have the same EOT date. And thanks for reminding me, I will book an acupuncture appointment today!

Lynn K · « **Reply #1008 on:** February 09, 2015, 04:34:23 pm »

I guess because I have been through so much before with 3 interferon treatments and now having cirrhosis this treatment with Harvoni is nothing to me any more than a vitamin pill. I guess I am fortunate or maybe because I've "been down so long this looks like up to me"

nicole_1234 · « **Reply #1009 on:** February 09, 2015, 04:52:35 pm »

It is definitely a walk in the park compared to interferon/riba. Oi

Karen1124 · « **Reply #1010 on:** February 10, 2015, 11:25:45 am »

Day 6 no problems! Going to walk a few miles!! Have a great day all!

Tommync11 · « **Reply #1011 on:** February 10, 2015, 04:30:52 pm »

hey everyone,

Well its day 11 on Harvoni side effects are very minimal slight headaches only when i don't drink enough water it seems. fatigue in the afternoons ( normal for me anyway). not really bad at all so far.doc appt thurs for first labs we will see i guess after that.if its doing its job!! will keep you all posted wish everyone is smooth sailing .ttys

Tom

Islandgirl · « **Reply #1012 on:** February 10, 2015, 07:16:41 pm »

Greetings fellow warriors

Kathleen and Nicole, we have the same end date - 2/25/15 - also we have the same side effects. I could have written Kathleen's post, and yes, I'm having joint and muscle pain like Nicole. Off and on I'm having stomach issues and pain in the right lower abdomen into stomach area. Harvoni must be in there kicking the dragons around and OUT

Looking forward to seeing us all post SVR12 (or 24) sometime this year and experiencing the FREEDOM of being able to say CURED!!!!! We WILL get there!
....Islandgirl

Katie · « **Reply #1013 on:** February 10, 2015, 07:27:22 pm »

Thanks for that Island girl as sometimes you just wonder what's going on. Cool that you and Nicole and I will be going through this at the exact same time and can really compare notes. It helps me so much to have fellow alien dragon fighters with me.

OMG it is already Feb 10th! Only 15 more pills! WOW! Exciting and kind of scary too. Then the waiting begins.....I don't wait well so I will need you guys!

Katie
or Kathleen

Ruthie · « **Reply #1014 on:** February 10, 2015, 08:04:45 pm »

Is anyone else having crazy extreme thirst? I know we need to up the water on Harvoni, but this is ridiculous. I've drank a good 150 oz of water today (plus 16 oz coffee) and I still feel dehydrated.

nicole_1234 · « **Reply #1015 on:** February 10, 2015, 08:20:22 pm »

Yeah Katie and Island girl, let's kill this virus for good!!! The 3 months wait will be over before we know it and it's very very likely we will beat this thing!

Nicole

anniemybaby · « **Reply #1016 on:** February 10, 2015, 08:22:51 pm »

Just got my last bottle of harvoni 4 wks to go

Bob V · « **Reply #1017 on:** February 10, 2015, 08:25:20 pm »

Yay! Annie

anniemybaby · « **Reply #1018 on:** February 10, 2015, 08:59:25 pm »

Awww thanks bob

Katie · « **Reply #1019 on:** February 10, 2015, 09:06:27 pm »

Hope you are feeling better Annie. I am in full remodeling mode with 2 carpenters and think it was a mistake to do it at this time. I am exhausted and it's hard on me, but it will be done in a week. I can do this...I can do this...I can do this...I can do this...

HA! Whew...I think it is almost worse than moving. All my clothes are on my couch and boxes and clutter everywhere. Time to purge and get to early spring cleaning after the dust settles. Hope my energy returns soon!

Katie

anniemybaby · « **Reply #1020 on:** February 10, 2015, 09:24:37 pm »

I'm doing OK Katie thanks for asking hope your well n remodeling can b fun

were looking to buy our first home I'm waiting till finished with treatment n back to work full time then I'm going to start looking I'm leaning towards anywhere where there's n ocean n sand lol maybe Delaware have a good night n don't work so hard n good luck I go for my 4 wk blood work on Fri not real sure what it consists of I'm still list lol got my 2 wk done n never heard a word about it fr no one

Islandgirl · « **Reply #1021 on:** February 10, 2015, 09:55:02 pm »

Annie, I didn't hear anything about my 2 wk either, just the 4 wk and then didn't get the results until a couple of weeks later. Hang in there. ....Islandgirl

Katie · « **Reply #1022 on:** February 10, 2015, 10:23:21 pm »

Annie, please request a copy of all of your tests for your files. They are your records and they should provide them with no problem. Good luck with your test and I hope all comes back showing positive results.

Your first home is always so exciting. Have fun with that and for now just dream and make a must have list. <BIG SMILE>

Katie

Bob V · « **Reply #1023 on:** February 10, 2015, 10:27:46 pm »

Annie, Islandgirl
I call my doc a week after labs and ask over the phone for any abnormal results. With VL I ask what the exact wording is.

And I agree with Katie get a hard copy for your records.

Islandgirl · « **Reply #1024 on:** February 10, 2015, 11:47:38 pm »

You are so right. I do have hard copies of everything that has been done - even from way back, long before Harvoni. No one will ever keep track of this as well as we do and there are times we need to review and remind our doc about some of our history. Too many patients and it's our job to make sure we get the care we need and that something doesn't get accidentally overlooked. One of the things I appreciate most about our Forum family is the knowledge I've gained. It makes us stronger and better able to ask the right questions and understand our fight from a broader perspective. I appreciate this forum and the members more than I can express. Absolutely love you guys! ....Islandgirll

nicole_1234 · « **Reply #1025 on:** February 11, 2015, 04:02:56 am »

Katie, I did something similar a few weeks ago. I decided it was a good time to repaint my entire kitchen and take apart my studio and redo everything. Maybe I'm glutton for punishment or perhaps it just feels good for life to keep moving on and feel like I can accomplish things treatment or no treatment.

Today I'm feeling very blessed to have gotten this treatment, and grateful for my life. I was very lucky to attend the Stevie Wonder Grammy tribute and watching him perform in all his greatness, reminded me how often our struggles make us who we are and sometimes all the better for it. I will always have true empathy for people struggling with chronic illness and I will have a new appreciation for my body and my health for the rest of my days.

I often come to this forum with complaints but I'm also so grateful there's all these strangers willing to listen and care and try to help. Tonight I just want to express my gratitude. Thanks for being here!

kate0b1 · « **Reply #1026 on:** February 11, 2015, 06:22:58 am »

@nicole_1234, what a nice post, i think thats how many of us feel but its nice to be reminded when we are have a not so great day.
@katie, lol, half of my kitchen stuff is in the dining room right now, and 1/4 of the cabinet doors are in the basement, I'm trying to do this a section at a time so it won't freak my ocd out

. I want to get it done before the warm weather, i just ordered a ton of plants (almost finished tearing up the yard for the fence). probably not a great time to do all this since i am also going out of town next week but on the bright side, but by time i am done i will also be done meds (29 days but whose counting).
kate

Mugwump · « **Reply #1027 on:** February 11, 2015, 08:46:39 am »

Quote from: kate0b1 on February 11, 2015, 06:22:58 am

@nicole_1234, what a nice post, i think thats how many of us feel but its nice to be reminded when we are have a not so great day.
@katie, lol, half of my kitchen stuff is in the dining room right now, and 1/4 of the cabinet doors are in the basement, I'm trying to do this a section at a time so it won't freak my ocd out . I want to get it done before the warm weather, i just ordered a ton of plants (almost finished tearing up the yard for the fence). probably not a great time to do all this since i am also going out of town next week but on the bright side, but by time i am done i will also be done meds (29 days but whose counting).
kate

@kate
Could be some people are suffering from MSD which results in a sudden attack of RMS because of the treatment?
I m glad Harvoni is not causing any of these problems with me yet!

Martha Steward's Disease quite often causes a sudden onset of Re Modeling Syndrome in my house as well! I am very fortunate that in my monogamous relationship I am not being hit by this again. When I was on interferon we were in the middle of a whole house rewire and reno and it took about three months just to figure out what colour the rooms were going to be painted post electrical work!

All bets are off when I finish my treatment in early May though as it is quite evident that my HDL is swelling in size and is looking different in colour every time is see it! A swollen Honey Do List is a sure sign of an imminent attack RMS!

Of course this is just from the male perspective.

Good thing I keep our sawsall, dry wall tools, levels, squares and other essential tools for major surgery in good shape because they will be put to use in June or perhaps July or August or September ........ To heck with it I will just go fishing!

eric

mario555 · « **Reply #1028 on:** February 11, 2015, 09:14:47 am »

I am reading all your posts and see many of you are counting down the pills left. Must be an exciting feeling! All I have is that I am on my 2nd part of the treatment! I'm at week 14... By the time
Iam finished taking the pills, you'll be receiving your news about your SVR12 results. You can be sure I am rooting for you all...
At the beginning of week 14, I have no more physical effects. Even the thirst is over. What remains is a really bad mood and no patience whatsoever... I can't even wait 30 seconds for my wife to bring the salt; I'm up and getting it myself! Every little thing I try to do seems to bring with it a pack of little problems and with my lack of patience, I must do everything to remain calm. I think God is testing me! As an example, I had to go back to Canada by plane last week. On my way back, I got "chosen" for a full body search at the airport. You'll think 'It happens!'. The problem is that I was chosen 3 times in a 2 flight segment!! To top it off, I have one of those Nexus card where I am considered "low risk"!! This is just an example but in my case it's continuous!!
Anyway, I'll keep counting my pills and try to keep my mood in check; pill 79-78-77...

Asherah12 · « **Reply #1029 on:** February 11, 2015, 09:36:52 am »

Mario: I had some of those feelings, and I found out for me that even though the thirst was gone, it helped my mood a lot to drink more water. Meaning, maybe I really needed it even though I wasn't getting the craving prompts. Although nothing makes TSA any more fun.

Islandgirl · « **Reply #1030 on:** February 11, 2015, 09:40:22 am »

Kate, Katie & Nicole, you guys are getting so much done! I keep waiting for that burst of energy that some have had

but keep moving anyway. Had a bad night but determined that today will be a good one. Thanks for being such good role models

...Islandgirl

Mario, I certainly understand the bad mood and lack of patience - I battle that some days too. I'm caregiver for my 91 year old mother (who lives with me) and yesterday was one of those days when it was really hard to be patient - lots of deep breaths

Hang in there - I'm counting and recounting pills too and silently repeating positive affirmations. Eric, my honeydo list here never ends here either - hard to prioritize the have to do and want to do list $:-\$ Now, for enough energy to be able to help accomplish my part in all this! ...Islandgirl

Mugwump · « **Reply #1031 on:** February 11, 2015, 10:22:38 am »

Quote from: mario555 on February 11, 2015, 09:14:47 am

. I can't even wait 30 seconds for my wife to bring the salt; I'm up and getting it myself! Every little thing I try to do seems to bring with it a pack of little problems and with my lack of patience, I must do everything to remain calm. I think God is testing me!
Anyway, I'll keep counting my pills and try to keep my mood in check; pill 79-78-77...

Mario
I have a little bit of a sustained blood pressure increase issue and some vision problems and tinnitus issues from the increase. I have been ignoring them because they are nothing in comparison to what happened to me on interferon for the last 12 weeks of tx. I suspect we might be experiencing a slight electrolyte imbalance because of Harvoni.

This time of year in Canuck land fruits and veggies with high levels of magnesium and potassium can get a little expensive but it is more sensible than going for supplements. I will ask my regular Doc if he could do a little test regarding electrolytes because perhaps this is what is happening because of the increased level of renal functions caused by the treatment and the dietary habits of northern peoples during winter.

Perhaps others with more experience and expertise on this could comment? But it seems to make sense to me if you are passing more urine and your liver has been working overtime clearing billirubin.

Oh to heck with the sudden increase in carbhydrates!!! My bmi is too high from the increase in hunger from this treatment! Instead of pigging out on food I will just try some Gator Aid and see if that helps first. It might be cheaper at this time of year than attacking the fruit and veggie section of grocery stores here in BC!

Sorry to hear that the Americans are starting to treat all Canadians as possible terror suspects again. Guess I will not be going down south any time soon to fish their early river and lake Cutt and Bow season. I have a habit of terrorizing other fly fishermen with my technique using what I call a Karma Bug which catches fish when many other concoctions of fur and feather on a hook do not someone is likely to report me for engaging in unfair fishing practices!

Regards and I hope you feel less anxious soon

Eric

anniemybaby · « **Reply #1032 on:** February 11, 2015, 12:11:18 pm »

So when I started harvoni alittle over 3 wks ago the specialty pharmacy called me and I asked about any meds I was on I said well I take tramadol for pain n they said that was fine and I said I take advil pm in evenings if pain keeps me awake n they said that's fine well GI Dr called me today to check how my headaches are I said not bad when I take the advil pm she says WHAT you can't take that with liver disease I'm like omg n in tears she says Tylenol is fine if you don't exceed so many MG's so why did the pharmacy say it was OK n GI Dr says no I hope I didn't make things worse by taking advil

hope4cure · « **Reply #1033 on:** February 11, 2015, 12:55:36 pm »

Annie

My doc said I could take an Advil if I needed to for headaches. I actually got sick the second week into my treatment with a fever (got it from my daughter) and I took 1 Advil for 2 nights in a row.

That is the only medication I have taken since starting Harvoni and even stopped any vitamins I was taking. I have arthritis in one knee and stopped taking Turmeric which helped a lot with my pain and even stopped it.

Not sure why you doc said advil is bad when Tylenol is the one that is hard for your liver. It seems like not all doctors know what can be taken and what can't be taken since it is such a new drug.

Below is the Harvoni facts sheets and I don't remember it saying Advil can not be taken.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Per goodrx.com:
Ibuprofen and other NSAIDS rarely affect the liver. Unlike acetaminophen (Tylenol) most NSAIDs are absorbed completely and have negligible first-pass hepatic (liver) metabolism. In other words, the way NSAIDS are metabolized makes liver toxicity (hepatotoxicity) very rare. Estimates are that 1 in 100,000 NSAID prescriptions result in acute liver injury. Generally NSAIDs are very liver-safe

anniemybaby · « **Reply #1034 on:** February 11, 2015, 01:02:57 pm »

Thank you hope4cure that's what I thought n specialty pharmacy said it was OK I don't do well with no sleep n I usually take 2 advil per day but GI Dr scared me

Mm · « **Reply #1035 on:** February 11, 2015, 01:27:51 pm »

Hi All,
I am midway in my 12 weeks of Harvoni and have been having daily headaches for the past week. I am wondering if it's me or is the cumlative effect of Harvoni which is increasing my side effects. I had slight headaches during the first week and they stopped, but started again. Today I woke up with a headache which is still pretty strong, even after taking 2 advil. I generally don't get headaches. I take my pill before dinner.

The good news is that I was undetected at 4 weeks. Viral load went from almost 6 million at the beginning of treatment. At the 2 weeks test, my liver function tests were normal and viral load was down to 68. This truly is a miracle drug in spite of the headaches.

Katie · « **Reply #1036 on:** February 11, 2015, 03:05:30 pm »

As far as I can tell, all over the counter pain relievers are not good for a compromised liver, and it seems doctors may vary with their opinions. Many on this forum take Tylenol but I have read where ibprofen is better, so who knows. I think any of them taken every single day would be bad and would personally only take them if I absolutely have to. I am fortunately not prone to headaches. I've had a headache, other than with the flu, maybe 6 times in my entire life. I have had occasional throbs in my temple on treatment, but it passes very quickly. I would encourage drinking more water as some have commented that helps. Check out this site and click through the pages as it has good general information.

http://www.mayoclinic.org/diseases-conditions/toxic-hepatitis/basics/causes/con-20026939

I hope everyone double checks with their doctors to find out what a safe amount of any medication is if it is needed, and it doesn't hurt to question them on different things but you need to be informed to know what questions to ask. I always make a list of questions and take to my appt so I don't get distracted and I do that even when I make a phone call to the office. Having a biology background, I know just enough to be a bit of a pain for doctors and have no problem having them give me explanations. I often print out things I have come across and take it with me so they know where I am getting the information. I figure it is my body, and my decision on what treatments to take and they seem to respect that. If they don't, I don't go back.

Please feel better everyone. I am so grateful we have these conversations as we are the ones going through this treatment and just think how confused and alone we would feel without each other. We all suffered with this alien monster for so long, and in some cases decades without any support that I just can't imagine going through this treatment alone. Many of us are getting close to the end and we will have successes and failures and we'll need each other even more as the weeks pass.

I love you, my kindred spirits!

Katie

moma · « **Reply #1037 on:** February 11, 2015, 05:46:37 pm »

Waiting for UPS to deliver my second bottle of pills. I only have one left. When I called about tracking the order, they told me deliveries will be late because of storm damage. Mario I'm right there with you having no patience. So you can imagine my reaction.
OK, my doc told me not to take anything but Aleve. Never Tylenol, so now we can be even more confused. Feeling like we're all just dears in the head lights. Thank goodness for all of you. This is the only place I feel safe getting knowledge of this treatment.
OMG the UPS truck just came up the road and stopped at my house! Wow that's a relief. By the way, has anyone spaced out and taken 2 pills in a day?
Good thoughts- MoMa

Islandgirl · « **Reply #1038 on:** February 11, 2015, 06:56:37 pm »

MoMa, congrats on your UPS delivery! It's always such a relief when that magic bottle arrives!! I set the alarm on my phone for 6PM every day to help prevent me from forgetting or from taking a double dose. I confess that I've resorted to counting pills to make sure what I have left matches my calendar that I've numbered for pills/days through EOT. Don't trust that doggone brain fog

Sending good thoughts also. ...Islandgirl

Katie · « **Reply #1039 on:** February 11, 2015, 08:52:43 pm »

I've been known for my patience which made me a good teacher of fish sampling and data techniques. I don't think they would think that of me now!

I have a calendar numbered and take my pill at 9:00-9:30 each day. I've had to count them twice. Brain fog definitely in the evening!

My spark came back for the first 8 weeks of treatment but is definitely gone and I have dark circles under my eyes.

I know some of this is from the stress and break in my routine with remodel guys here but most it's from the treatment as I should be EXCITED to be getting the final touches done!

I took a break today to have a light dessert with a friend and we spent an hour and a half talking about the end of life care her beautiful daughter received this summer from MS. The care lacked much and most was due to lack of communication and hospital procedure. My friend is having a meeting with the administration and social workers to recommend some changes to benefit the patients. All in all it was a depressing conversation in my present state. but I was honored she shared with me and it made me feel so blessed and fortunate to not have a horrible disease without hope for improvement or a cure. It was a good reminder of how many are suffering so much more than I am and just how easy I have it.

Thought I'd share that with you as we all need reminders once in awhile.

Moma...glad your meds came and I hope you are doing better! Always good to hear from you Island Girl, Annie and Eric and CONGRATULATIONS to you Mm!

Katie

Ruthie · « **Reply #1040 on:** February 11, 2015, 09:02:33 pm »

I've had horrendous anxiety all day. It just so happens that one of the pharmacists from the pharmacy I got Harvoni from called today. She wanted to know when I started treatment and any side effects. I talked to her about the anxiety. Apparently, it's quite normal for people with prior mental illness issues to have anxiety problems on Harvoni. I wish my gastro and I had known that before.

I'm going to my GP tomorrow to discuss meds for it.

mario555 · « **Reply #1041 on:** February 11, 2015, 10:17:00 pm »

Anxiety is suffered by 1/3 the population. I don't think it's a mental problem... I have anxiety at times but the "level" of it on Harvoni is something else... Being calm in bed at 0 level anxiety and all of a sudden being at 9 in two seconds flat because of a fleeting thought is not related to the anxiety periods I felt in the past! Sometimes in my Harvoni crises (have had 4-5 in the first 7-8 weeks) I got kind of scared which never really happened before. I'm happy I did not hesitate to keep a couple valiums close... It is definitely a side effect for some of us. The good part is that it goes away after 8 weeks. Now I only have my bad mood and impatience....

Asherah12 · « **Reply #1042 on:** February 12, 2015, 01:55:22 am »

I think I said this before, but really really acupuncture or acupressure on the liver heat clearing points got rid of the headaches for me. Ask an acupuncurist where those are. Then there are no worries about taking over the counter meds. I never heard about the anxiety before; I have that anyhow and don't remember if I had it on the Harvoni. Almost a week out after finishing treatment and starting to feel like myself again.

nicole_1234 · « **Reply #1043 on:** February 12, 2015, 02:14:23 am »

Mario and Ruthie, I was trying to find Lucindas post regarding anxiety on Harvoni. I was suffering from much higher levels when I began treatment and I do have a history with it, but I was doing fine for the previous year and when I started treatment it really kicked in.

I thought it was chemical but now I think it was also an emotional trigger. I know sometimes if you are prone to anxiety other things can make your body feel triggered such as too much caffeine and even though it isn't a panic attack it can trick your brain with an elevated heart rate and just the fear of having a panic attack can send someone in to one. I know it doesn't make complete sense but anyone who has suffered from this disorder knows what I am talking about.

Anyway, I think the medication was knocking the virus out of me and I felt very wired and edgy, and that triggered my anxiety. I also think the emotional response to starting a treatment again, didn't help. I took ativan for 2 weeks, 1 or 2 (.5mg)per day.

Once I cleared the virus at 4 weeks, the anxiety slowly began to fade and now at 10 weeks in I am fine. I'm more slightly lethargic and tired, with a bit of brain fog and headaches (mostly when I wake up). But no anxiety.

If any one can find the link to Lucinda's post I recommend anyone suffering anxiety answer the questionnaire she posted. She also recommended to report this to Harvoni, which I admits I have not done yet but I will tell my doctor and ask her to.

In the meantime this is what helped me: Baths, mediation, short walks in nature, and housework to help with the anxiety. All good distractions. And a couple times just crying my head off.

Nicole

nicole_1234 · « **Reply #1044 on:** February 12, 2015, 02:17:11 am »

http://forums.hepmag.com/index.php?topic=1952.msg10359#msg10359

here it is

Katie · « **Reply #1045 on:** February 12, 2015, 03:23:34 am »

Quote from: Asherah12 on February 12, 2015, 01:55:22 am

I think I said this before, but really really acupuncture or acupressure on the liver heat clearing points got rid of the headaches for me. Ask an acupuncurist where those are. Then there are no worries about taking over the counter meds. I never heard about the anxiety before; I have that anyhow and don't remember if I had it on the Harvoni. Almost a week out after finishing treatment and starting to feel like myself again.

I agree with Asherah on acupuncture and I use it to help with my ruptured disc as well. It has been very beneficial to me for the past 11 years.

I did find this information on over the counter medications. Two different sites.

Frequently Asked Questions (Since many have cirhhosis I thought it important to post this and please see statement in bold)
Q: Is it safe to take aspirin or Tylenol if I have hepatitis C?
http://www.hepatitis.va.gov/patient/faqs/aspirin-tylenol-safety.asp

Over-the-counter pain relief medications are usually not harmful. Check with your doctor first and take them in moderation. Overuse of acetaminophen (in Tylenol) can cause liver damage. Patients with hepatitis C should limit their acetaminophen (Tylenol) to two grams (four 500mg tablets) per day. Other drugs for pain include aspirin, ibuprofen, Motrin, Advil, Naproxen, and Aleve. They are safe in HCV patients who do not have cirrhosis. But, if a patient has cirrhosis, then ibuprofen, Motrin, Advil, and Naproxen cannot be taken at all. If you are not sure, always check with your doctor.
Hepatitis C Resource Centers
September 22, 2005; Last reviewed/updated: July 30, 2013

This one gives recomendations to manage pain without medications along with information.
http://www.hepatitiscentral.com/news/is_there_pain_r/

Hope this is helpful.

Hope everyone has a wonderful, pain free day tomorrow and rests well tonight. Time for me to go to bed.

Goodnight,

Katie

Ruthie · « **Reply #1046 on:** February 12, 2015, 08:52:29 am »

TY Asherah, Nicole, and Katie. I reported the anxiety last night. I do have bipolar, OCD, and PTSD. I'm pretty sure that's intensified it for me because I'm already predisposed.

LOL on the housework-I washed dishes, cleaned the bathroom, did laundry, and made my mom a homemade peach cobbler. Great minds think alike!

I'm having a possible allergic reaction to the Harvoni. I go to my GP this morning. I have the most God awful sores in my throat and on my tongue. My uvulaI looks crazy! I didn't put two and two together until last night. I did call My Support Path and spoke to a nurse. I hope and pray the Dr can do something so I don't have to dc Harvoni.

Ruthie · « **Reply #1047 on:** February 12, 2015, 09:02:09 am »

Mario, I was telling the My Support Path nurse last night that it feels like suped up anxiety! Usually my anxiety is nothing like this.

As for the mental illness, the pharmacist was talking about severe mental illness like bipolar, schizophrenia, etc. I have bipolar plus OCD and PTSD. It's interesting to know that people without these are still having the anxiety issues.

You have made me feel better just in the knowledge that I'm not alone.

Islandgirl · « **Reply #1048 on:** February 12, 2015, 09:27:11 am »

Hang in there Ruthie, I'm really hoping your doc appt this morning will find a solution for your possible allergic reaction. God bless you as you deal with the added anxiety issues coupled with that.

Reading Nicole's post, I realized I could probably use a good cry or two myself. With my 91 year old mom living with me, it's hard to be able to do something like that without worrying/upsetting her

On the Tylenol vs an NSAID issue - my doc prefers I take the occasional Tylenol (no cirrhosis) as Hep C is a blood borne virus and aspirin,etc., are all blood thinners to some extent and she doesn't want to chance anything that would impact lab results - not just the Hep C but platelets, WBC, etc. That's the gist of what I understood, but maybe not her exact words.

Ruthie, we'll all be waiting to hear how you're doing and what the doc said today. Good luck! Sending positive, healing thoughts your way

...Islandgirl

mario555 · « **Reply #1049 on:** February 12, 2015, 09:33:59 am »

I just received my blood test results after 12 weeks of Harvoni. My ALT and AST are way down from the 200 levels at the beginning of treatment. I am still out of the 'normal range' but just a tad.. I was UND after 4 weeks and I hope it is still there because I am not due for another VL before 12 weeks after EOT. I am somewhat happy with the results. Harvoni does work! I am doubly happy that I am on a 24 weeks treatment because of the still high ALT - AST. These results show me it's a good idea to err on the longer treatment rather than the shortest possible... More studies would have to be undertaken to see the proper length of treatment based on tests results (ie; UND at week 4 but still high ALT - AST at week 12 or like some others here with still detectable VL but with normal ALT, etc..
We all know (or should know) that we are taking a drug that has been rushed through without being fully tested. People like me had no other options! For the ones that are not in a rush to take the pills should wait to see what happens with us first! As of this date, nobody outside the studies has had an SVR12. We are "real life", I can't wait to see in 8-12 weeks what results WE will have...

Bob V · « **Reply #1050 on:** February 12, 2015, 11:07:39 am »

We all know (or should know) that we are taking a drug that has been rushed through without being fully tested. People like me had no other options! For the ones that are not in a rush to take the pills should wait to see what happens with us first! As of this date, nobody outside the studies has had an SVR12. We are "real life", I can't wait to see in 8-12 weeks what results WE will have...
----
Mario555
Kinda agree with this.

Mugwump · « **Reply #1051 on:** February 12, 2015, 11:09:46 am »

Quote from: nicole_1234 on February 12, 2015, 02:14:23 am

Mario and Ruthie, I was trying to find Lucindas post regarding anxiety on Harvoni. I was suffering from much higher levels when I began treatment and I do have a history with it, but I was doing fine for the previous year and when I started treatment it really kicked in.

I thought it was chemical but now I think it was also an emotional trigger. I know sometimes if you are prone to anxiety other things can make your body feel triggered such as too much caffeine and even though it isn't a panic attack it can trick your brain with an elevated heart rate and just the fear of having a panic attack can send someone in to one. I know it doesn't make complete sense but anyone who has suffered from this disorder knows what I am talking about.

Anyway, I think the medication was knocking the virus out of me and I felt very wired and edgy, and that triggered my anxiety. I also think the emotional response to starting a treatment again, didn't help. I took ativan for 2 weeks, 1 or 2 (.5mg)per day.

Once I cleared the virus at 4 weeks, the anxiety slowly began to fade and now at 10 weeks in I am fine. I'm more slightly lethargic and tired, with a bit of brain fog and headaches (mostly when I wake up). But no anxiety.

If any one can find the link to Lucinda's post I recommend anyone suffering anxiety answer the questionnaire she posted. She also recommended to report this to Harvoni, which I admits I have not done yet but I will tell my doctor and ask her to.

In the meantime this is what helped me: Baths, mediation, short walks in nature, and housework to help with the anxiety. All good distractions. And a couple times just crying my head off.

Nicole

Edit: Here is a link back to the anxiety and a word of encouragement from Deborah for those worrying about anxiety and bp problems http://forums.hepmag.com/index.php?topic=1952.msg14057#msg14057

Very good points Nicole and Mario
This is precisely why I am doing things that require absolute concentration and a calm approach to achieve a goal. It is a large part of why I study and write classical music. It may just be a hobby but it has helped me deal with the physiological and psychological problems associated with first, having hyperthyroidism, then being diagnosed with HCV.

Long term hyperthyroidism causes mental aberrations that can become quite serious. Not to mention it causes hypertension so it needs to be treated.

But this is my experience with the side effects of HCV and not all individuals will have their immune system trigger auto-immune responses that increase levels of thyroid hormone levels.

Harvoni, on the other hand, seems to return the individual undergoing Tx to a more normal level of response to things like caffeine and other stimulants. Perhaps having a very sudden normal reaction to adrenal functions associated with what was a compromised metabolism, does make people who have had abnormal liver functions and now are normalizing their liver functions because of treatment experience what seems to be dangerous responses to every day stimuli. And these sudden effects could easily be mistaken for something being seriously wrong.

Just my two cents and perhaps that is all it is worth but going by what we are experiencing as a group perhaps feeling normal for a change can be very hard to deal with when you have not felt normal in years. Here is hoping that this hypothesis is correct!

eric

Ruthie · « **Reply #1052 on:** February 12, 2015, 12:05:30 pm »

Long story short: Dr and I figured out Solvadi has the oral sores listed as a side effect to tell your Dr about immediately. He put me on carafate (sp) to help coat it and ease the pain. And he gave me klonopin for anxiety.

Ruthie · « **Reply #1053 on:** February 12, 2015, 12:08:04 pm »

Eric, I think you may be on to something there. Our bodies and minds have to get used to being normal. It makes perfect sense.

Islandgirl · « **Reply #1054 on:** February 12, 2015, 01:12:45 pm »

Ruthie, I'm so glad your doc was able to help! Good going to him so quickly, gold stars for you girl! I agree with your and Eric's comments - I've had this so long I doubt I know what normal really is. Maybe I'll find a whole new me, hehe

Mario, congrats on making progress with your ALT and AST levels! We will all get there one way or another - one day at a time. ....Islandgirl

Karen1124 · « **Reply #1055 on:** February 12, 2015, 02:32:50 pm »

Hi Everyone,
I didn't post anything yesterday was my 7th day today is my 8th day on Harvoni.I was tired yesterday didn't work out much but today I really feel good! Don't know if I was tired just because or if it was the medicine. But other than that no real side effects! Have a good day everyone! Karen

Mugwump · « **Reply #1056 on:** February 12, 2015, 04:38:26 pm »

Quote from: hope4cure on February 11, 2015, 12:55:36 pm

Annie

Below is the Harvoni facts sheets and I don't remember it saying Advil can not be taken.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Per goodrx.com:
Ibuprofen and other NSAIDS rarely affect the liver. Unlike acetaminophen (Tylenol) most NSAIDs are absorbed completely and have negligible first-pass hepatic (liver) metabolism. In other words, the way NSAIDS are metabolized makes liver toxicity (hepatotoxicity) very rare. Estimates are that 1 in 100,000 NSAID prescriptions result in acute liver injury. Generally NSAIDs are very liver-safe

Remember those who have even mild cirrhosis are also at increased risk of vascular bleeding so NSAIDS and or any over the counter med containing ibuprofen if taken in large quantities could compromise the livers ability to heal even small vascular incidents. NSAIDS are anti-inflammatory and can in large doses cause dangerous problems for more than just people who have ulcers. Don't forget minor inflammatory reactions are natures way of dealing with minor hemorrhages.

http://my.clevelandclinic.org/health/drugs_devices_supplements/non-steroidal_anti-inflammatory_medications

The relevant caution from this organization about NSAIDS which includes common aspirin;

Common Side Effects:

Stomach pain or heartburn – this is the most common side effect.
Stomach ulcers – as many as 5% of patients may develop a stomach ulcer while taking NSAIDs. Ulcers may cause stomach pain, but some ulcers develop with no pain at all.
Bleeding – NSAIDs (especially aspirin) increase the tendency to bleed in general (not just from ulcers). You should not take NSAIDs before surgery. NSAIDs should be avoided if you are taking blood-thinning medications (such as Coumadin). Increased risk of cardiovascular events (stroke or heart attack) especially when they are used for long periods of time or in very high risk settings (immediately after heart surgery).
Headaches, dizziness, lightheadedness, or a decrease in alertness (less alert than normal).
Ringing in the ears – may be due to treatment with salicylates, including aspirin. This can be eliminated by decreasing the dose.
Allergic reactions – rashes, wheezing and throat swelling rarely occur.
Liver or kidney problems are rare side effects. These problems can be evaluated by blood tests in patients who take NSAIDs for prolonged periods. People with any kidney problems should not take NSAIDs for prolonged periods.

For those patients who need to take NSAIDs for long periods of time, careful monitoring with your doctor, including blood work, can help to minimize your risk of side effects. However, serious side effects including ulcers, bleeding and obstruction can occur without any warning.

Please note: The side effects listed are the most common. All possible side effects are not included. Always contact your health care provider if you have questions about your particular medication.

.........................................

I can understand why Gilead is concerned about the possibility of individuals having dangerous internal bleeding because of the use of NSAIDS especially those who have long term liver damage and most likely have a weakened vascular system to some extent. I would not take them even if my GP said it was ok right now, I would rather put up with a little pain even if at times it makes me a grumpy old fart!

That said, personally I would not panic if I took a mild dose just to help get over a case of the flu if I catch it.

I am in no way suggesting that anyone ever ignore the onset of serious sudden head aches, blurred vision usually accompanied by dizziness, disorientation or the sudden loss of consciousness. This type of event should only be dealt with immediately by trained professionals even if it does not persist. Not by taking a trip to the drug or grocery store for more aspirin, ibuprofen, acetaminophen or any over the counter med or hairball remedy for that matter!

eric

mario555 · « **Reply #1057 on:** February 12, 2015, 05:04:20 pm »

Well laid out Eric. So what do you suggest for 'occasional' headaches or soreness? I am lucky not to suffer much from headaches and I have only used Tylenol. Since reading the posts, I am more mystified than before!! Help!

Ruthie · « **Reply #1058 on:** February 12, 2015, 06:05:17 pm »

I'm not Eric, but I suffer from migraines, so I'll tell you what I do, Mario. First, drink some caffeine. Black unsweetened coffee is preferable. Then drink a lot of water. For a regular headache, that helps a lot. For a migraine, I then use essential oils (basil and peppermint) or mentholatum/Vicks and rub it under my eyes, on my forehead, and on the back of my neck. I Then lay down and put a damp washcloth over my eyes.

For body aches and pains, take a hot bath. Just soak in it. Adding Epsom Salts seems to help a lot. I then put bengay, the basil/peppermint combo or mentholatum on the area and add ice or heat.

I try not to take many meds because I have weird side effects to everything. I think that's obvious from my side effects to Harvoni LOL These are all thing I learned from my GP and grandma.

I hope it helps!

Katie · « **Reply #1059 on:** February 12, 2015, 06:47:03 pm »

I can't respond to headaches, since I don't suffer from them but just about every joint in my body is damaged from the field research I did many years ago. All that wilderness "fun" required lots of hard work and it has caught up with me. So I live with pain and only take something if I need it to break a high a fever.

Soreness: I stretch. I also have a True Back which is a hard plastic base with knobs that follow along the spine and has a curve you can use on your lumbar or neck. It is uncomfortable for a few seconds but it stretches the spine and really helps. It was developed by the Iowa Orthopedic college.

I also have a tens unit for electronic stimulation which is WONDERFUL. Medicare will pay for it with a doctors approval. The one I have is the Ultima 20 with 4 electrode pads and it has a variety of pulses for different areas of the body. I highly recommend it and they also suggest it for headaches. I use it for my bad knee, wrists, shoulder, neck and even my feet while watching television.

I can't get out of a tub anymore so I take hot showers and I also use ice and heat to relieve any inflammation.

I massage my legs and feet several times a week as I have neuropathy from my ruptured disc and need to see a back surgeon, but really wanted to get my liver taken care of before I even consider any kind of surgery.

Acupuncture is truly a benefit for opening blockages and relaxing everything and is good for organ, muscular and skeletal health. It has kept me mobile but you need to find someone who is really into it. I have gone to some that just aren't healers which did nothing for me. The doctor I see now is also a low impact chiropractor as well and she does wonderful things with her magic fingers and needles. She has helped many of my friends with headaches and migraines as well.

I always figure, when you are in pain, you REALLY know you're alive! I would prefer to go dancing, or sky diving or hiking, but they are no longer an option. LOL! Fortunately I can still go fishing as long as there aren't any steep boat ramps.

This is just my personal regime and I have developed a high pain tolerance, which I know not everyone has, but it has worked for me and it is all liver friendly.

Katie

moma · « **Reply #1060 on:** February 12, 2015, 08:01:46 pm »

Hello All,
Anxiety! I'm really pissed off that my doctor patted me on the shoulder as I was leaving his office telling me "and NO personality changes or emotional problems with Harvoni". Really?? No it doesn't come close to what it was like on Interferon, but there are definite anxiety, crying spells and all around wanting to jump out of your skin. I also called Gilead and report these symptoms. I totally agree with the comment that having been on a treatment before make me have horrific flash backs. Fearing all this will turn out not to work like before. Interferon, such a terrible treatment to go through (if you could even get through it). The ordeal of going through that and it no working has left me very leery about Harvoni. But having cirrhosis scares the crap out of me more!
Tomorrow will be 4 weeks into therapy. I have my first doctor's appointment since starting. Do I feel positive? Not really. Does anyone know how long the longest patient has gone undetected after stopping treatment?
Yes, yes, yes, acupuncture saved my life after interferon. I use it for just about every other health problem I've had including a heart attack. I made a standing appointment every Tuesday for the next three months.
I'm so grateful for this forum. Can't tell you how many times I've been trying to explain to some one a symptom or mental problem I'm having during this time and I have referred to some thing one of you have written in order to validate what I'm saying.
Stay Strong,
MoMa

Mugwump · « **Reply #1061 on:** February 12, 2015, 08:13:04 pm »

Quote from: mario555 on February 12, 2015, 05:04:20 pm

Well laid out Eric. So what do you suggest for 'occasional' headaches or soreness? I am lucky not to suffer much from headaches and I have only used Tylenol. Since reading the posts, I am more mystified than before!! Help!

Mario the problem is precisely that pain relievers do not cure the underlying cause of the headaches and headaches and muscle aches can be caused by a chemical imbalance in the blood. I have noticed increased hunger on this med and slight headaches and muscle fatigue and general overall fatigue. But no where near to the extent it happened when I was on Interferon/Rib treatments. I have changed my diet to make sure I am eating things that increase electrolytes but do not have to much carbohydrates because I have enough resources in my body already and my muscles though large are not the largest part of my BMI. I am 5' 8" and 100 kg so I do not worry about starvation to say the least.

I did take one potassium/magnesium combo pill instead of robbing the monkeys of all the bananas in BC and getting my eight servings of fruit and veggies per day that is in the food guide!

It seems to be working and my energy level and aches and pains are easing. It could very well be that an electrolyte imbalance is happening to some of us near the end of treatment. For me the fatigue and headache effect was noticeable but not worrisome.

Like I said sensible use of over the counter meds should not be life threatening but taking them for every little ache and pain could indeed be dangerous and should only be done under close medical supervision.

Regards
Eric

Katie · « **Reply #1062 on:** February 12, 2015, 09:43:20 pm »

I saw this on Facebook today:

"Healing doesn't mean the damage never existed, it means the damage no longer controls our lives."
author unknown

I can't say I am there yet, but I am definitely moving in that direction!

Katie

harvonitoo · « **Reply #1063 on:** February 12, 2015, 10:50:19 pm »

I'm on my third month in another week and so far I have only had a few headaches which were manageable with one pill of Tylenol (500mg). I can count those headaches on my hand, probably 3 or 4 maximum. Since I started drinking water of well over half my body weigh in oz. ( 170 lbs weight = drink 85 oz of water thru the day) I still haven't had another headache. I read in here quite a few people suggesting to drink that much water. ( I have noticed an increase in hunger

try to eat as healthy as possible, organic and low in salt foods! Best of luck!

Ruthie · « **Reply #1064 on:** February 12, 2015, 11:41:47 pm »

Moms, I'm glad you reported the anxiety to Gilead. There seems to be quite a few with it. The More we tell them about it, the greater chance it will go in as a side effect and can help others in the future!

And OMG, I've been telling my Drs and the pharmacist things everyone has said on here, too!

moma · « **Reply #1065 on:** February 13, 2015, 12:42:22 pm »

Katie I copied down your quote. My 42 year old daughter has ptsd from a horrible drawn out situation. Quite her job, moved, and basically is frozen. This quote puts everything I've been telling her for 3 years now in plain language. Thanks-
And Ruthie, lets keep on getting the word out to all those who need it. Especially the medical society.
Ok, on my way to see the doc and get some blood test results!
Have a happy day-
MoMa

hepcondor · « **Reply #1066 on:** February 13, 2015, 06:37:23 pm »

Hi,
New to the site and today was 8th pill. Not so bad with the headaches but this ringing in my ears is driving me crazy. Worse in the mornings and had a very slight panic attack today. Never had it at all before. Don't see this issue with any of you guys.
Also my lower back and knees are now in pain. I have had back surgery in the past but has not really hurt in years. Don't know if it's related but sure seems a coincidence.
Good luck everyone!!

Mugwump · « **Reply #1067 on:** February 13, 2015, 07:01:25 pm »

Quote from: hepcondor on February 13, 2015, 06:37:23 pm

Hi,
New to the site and today was 8th pill. Not so bad with the headaches but this ringing in my ears is driving me crazy. Worse in the mornings and had a very slight panic attack today. Never had it at all before. Don't see this issue with any of you guys.
Also my lower back and knees are now in pain. I have had back surgery in the past but has not really hurt in years. Don't know if it's related but sure seems a coincidence.
Good luck everyone!!

Yes some here have had panic attacks in the first 10,14 days, but you should start feeling good in a few days. I had a panic attack the first time I had a liver biopsy and I suppose I was a bit like a deer in the headlights to the staff doing the work.

Perhaps the strain put on your liver by Harvoni is causing fear, this is a normal reaction to liver stress. If you are a boxer and someone hits you in the liver this is exactly what happens. I am not making light of this I am putting it in perspective, as a member here called Battle the Beast might say "just think of the drug knocking hep C to hell where it belongs!"

Call your physician if you start feeling extreme pains in the upper right quadrant, or if the panic attack worsens over time. As others have indicated make sure you are well hydrated and do things to relax and you will find that the treatment is much easier to handle.

Welcome and I am glad to hear that you are on the road to clearing the virus from your system.

Eric

mario555 · « **Reply #1068 on:** February 13, 2015, 07:39:39 pm »

Hepcondor. Welcome to the group! You should find many answers to your worries in here. As an example, I've had ringing in my ears that became pretty loud. It was mainly in one ear and could reach a pretty loud level. It can actually be beneficial if you're married, it's a hell of a good reason to bug off when your wife asks you something! It does go away after 7-8 weeks so I wouldn't worry at this point... As for the panic attacks, mine were heavy but short lived. They should also go away in some weeks. If you ask your doctor, he'll probably say that those symptoms were not mentioned so it's in your head!
Just tell yourself it should be over in 8-12 weeks and then you'll be free of the disease! Good luck to you!

Katie · « **Reply #1069 on:** February 13, 2015, 09:05:15 pm »

Welcome hepcondor! I agree with Mario and Eric. My doctor is more tactful and just says "that's the first time I have heard of that".

One thing they seem to fail to consider are the side effects that may be caused by Sovaldi. They always tie the side effects from the added peginterferon alfa and ribavirin in previous treatments and their trials were with small groups that may not have included people with a variety of other health issues which may affect how our bodies respond. I found this site and am going to post what it says. I got there when I GOOGLED Sovaldi Side Effects:
+++++++++++++++
What types of adverse reactions were reported when taking Sovaldi™?

In the clinical studies the most common adverse reactions when Sovaldi™ was used in combination with ribavirin were fatigue and headache. The most common adverse effect when Sovaldi was used in combination with peginterferon alfa and ribavirin were fatigue, headache, nausea, insomnia and anemia. Of course, one should consult with the prescribing information for peginterferon alfa and ribavirin as well for descriptions of the adverse reactions when using these medications.
Although less common, in addition to the adverse reactions mentioned above, the following adverse reactions were also reported:
•   pruritus (itching)
•   asthenia (weakness)
•   rash
•   decreased appetite
•   chills
•   influenza like illness
•   pyrexia (fever)
•   diarrhea
•   neutropenia (lowered neutrophils - type of white blood cell that surrounds and destroys bacteria)
•   myalgia (muscle pain)
•   irritability
Less than 1% of the subjects in the clinical study receiving Sovaldi™ combination therapy reported:
•   Hematologic effects - pancytopenia (particularly in subjects receiving concomitant pegylated interferon).
•   Psychiatric disorders - severe depression (particularly in subjects with pre-existing history of psychiatric illness), including suicidal ideation and suicide.
++++++++++++++++
Who is to say some or all are not caused by the combination of Harvoni. We are all different and there are folks here that have experienced almost all of these.

I checked another site on Sovaldi.com which mentioned pregnancy. Since I am beyond that age, I haven't checked that, but for those of you that are if your doctor hasn't discussed this with you, I thought it important to post.
++++++++++++++++++
What is the most important information I should know about SOVALDI?
SOVALDI combination therapy with ribavirin or peginterferon alfa and ribavirin can cause birth defects or death of your unborn baby. If you or your sexual partner is pregnant or plans to become pregnant, do not take these medicines.

•   You and your sexual partner must use 2 effective forms of birth control and should not become pregnant while being treated with SOVALDI combination therapy and for 6 months after your treatment is over. Talk to your doctor about forms of birth control.
•   If you or your partner can become pregnant you must have a pregnancy test before starting treatment with SOVALDI combination therapy, every month while being treated, and for 6 months after your treatment ends.
•   Tell your healthcare provider right away if a pregnancy occurs while taking or within 6 months after you stop taking SOVALDI combination therapy. You or your healthcare provider should contact the Ribavirin Pregnancy Registry. If you are also infected with HIV and taking medicines to treat your HIV infection, an Antiretroviral Pregnancy Registry is also available. For contact information, please see full Prescribing Information.
+++++++++++++++++
Hope your treatment is smooth sailing Hepcondor, and it is helpful to see you aren't alone when experiencing some changes in your mood or health. When I start feeling bad, I remind myself I am on a powerful drug and it is temporary and then do something nice for myself, knowing I can get through it. So can you, and the three months tend to FLY by. My EOT is the 25th and it seems like I just started! We are all hear for you so don't be timid about asking questions and if we can, we'll give you are opinions!

Enjoy your weekend!

Katie

nicole_1234 · « **Reply #1070 on:** February 13, 2015, 09:58:06 pm »

Hepcondor, I had some ear ringing and a few panic attacks in the first couple weeks. It all went away after a couple weeks and I rid my body of the virus and adjusted to the medicine. And I've had achy joints too.

Drink lots of water! It helps with all those things.

Katie · « **Reply #1071 on:** February 13, 2015, 10:09:46 pm »

Mario, Have you received your 12 week VL test results yet. Sending you good vibes on that. I'll be getting my blood drawn on the 27th. I am going to wait 36 hours after my last pill to give it a little time without the medication cause if I am still detected, I'd rather know now than later. Probably wouldn't mater but that is just me doing it my way.

Have a good weekend!

Katie

mario555 · « **Reply #1072 on:** February 14, 2015, 09:06:54 am »

Katie. I will not have a 12 weeks VL given the fact I am on a 24 weeks treatment. Hopefully, once you attain UND which I had after 4 weeks, it doesn't come back. My enzymes are still out of bound but getting really close to normal. I am very thankful to be on a longer treatment because of those enzymes. When I started treatment I was F4 but with no obvious signs of cirrhosis with a VL of 8 millions and ALT - AST above 200. I also failed INF in 2000 and Peg-Inf in 2010 but I never went the whole 48 weeks.
I needed Harvoni now because I had started a downward spiral where I was taking less and less care of myself, I couldn't continue living with hep c.
I had followed Gilead closely over the previous 2 years and knew about the Harvoni coming out. I bidded my time and organized my finances accordingly. I needed this new treatment now! I sure hope the treatment works because I drained my insurance and I wouldn't be able to get additional help from my insurer until the end of 2016.
As I mentioned before, after 13 weeks of treatment there are no more side effects. I am just in a poor mood and impatient. So, good luck to all of us. It's been too long where our lives have revolved around hep c!

hepcondor · « **Reply #1073 on:** February 14, 2015, 10:54:25 am »

Wow..Just hearing back from you guys that can relate made me feel so much better.
Woke up this morning to a lot less ringing and actually felt pretty good for the first time.
Eric, Mario, Katie, and Nicole..thank you very much!

Actually I did 2 things that could have helped last night. After work I took a vicodin. I know that's not good but I needed to give myself a little break. But more importantly I drank a quart of Gatorade instead of water last night. Felt better almost the instant it was going down. I did drink a gallon of water yesterday too but I guess my body needed the electrolytes. Weird huh.
Another thing is I am feeling a little "pumped up"..like I have worked out with weights or something this morning. Now that's got to be an unusual side effect.

Thanks again and let's kill this thing

mario555 · « **Reply #1074 on:** February 14, 2015, 12:21:11 pm »

Hepcondor. For your pumped up feeling I did have so much energy in the first few weeks it was unbelievable. Unfortunately it didn't last long! I do undertake big jobs but I tire out at approximately the same time as before.
For your Gatorade. I did suggest that a few weeks ago because I feel too much water will deplete my electrolytes. I mix it like 2 quarts of water for every quart of Gatorade. Makes me feel better...
Good luck for the next week and get yourself back in shape while you have that extra energy but go slow!

Bob V · « **Reply #1075 on:** February 14, 2015, 02:57:37 pm »

Hi Hepcondor
I was the same way for the first few weeks, I was able to do my normal exercise routine but that changed quick. Then I felt like I was getting sick every day, my runs were a struggle, that lasted another few weeks. Now it's day to day, some I'm almost like pre tx and some days I'm tired. Also I had some BP and heart rate issues last weekend but that seems to have passed.

moma · « **Reply #1076 on:** February 14, 2015, 04:34:34 pm »

Hi hepcondor welcome.
Panic-Attack is my middle name!!!! Even got a prescription for Valium yesterday. Read previous posts and you'll find most all your symptoms, someone has had. I didn't think Harvoni was going to be such a mental trip. It's not as bad as Interferon, but the memories of past treatments and failures put me back to those times and I start to feel this is all bs.
Stay strong-
MoMa

Mugwump · « **Reply #1077 on:** February 14, 2015, 06:18:53 pm »

Quote from: hepcondor on February 14, 2015, 10:54:25 am

Wow..Just hearing back from you guys that can relate made me feel so much better.
Woke up this morning to a lot less ringing and actually felt pretty good for the first time.
Eric, Mario, Katie, and Nicole..thank you very much!

Actually I did 2 things that could have helped last night. After work I took a vicodin. I know that's not good but I needed to give myself a little break. But more importantly I drank a quart of Gatorade instead of water last night. Felt better almost the instant it was going down. I did drink a gallon of water yesterday too but I guess my body needed the electrolytes. Weird huh.
Another thing is I am feeling a little "pumped up"..like I have worked out with weights or something this morning. Now that's got to be an unusual side effect.

Thanks again and let's kill this thing

After 10 weeks I am playing classical guitar with an easy relaxed power for the first time in over 25 year. I still have some myalgia in my major muscles but it is easing as I make sure that I stay on track eating right and working then resting while drinking fluids that have essential minerals.

I did take a supplement and it did help but the last thing I want to do is go overboard and overdose on potassium or magnesium! So I am not going gung ho thinking that more is better. That can be dangerous to say the least.

Here is hoping the recent break in the weather lets me get out steelhead fishing this year I could use some heavy exercise that will make me sweat rather than just stretching doing tai chi and playing the guitar. I am sure my body will thank me for taking a the break from lazy land! Yes resting and relaxing during treatment is a good thing but there is such a thing as too much rest!

Keep it up condor you will turn the corner and free yourself in ways that we have all yearned for for years.

Cheers
Eric

Rod · « **Reply #1078 on:** February 14, 2015, 07:29:06 pm »

Hey everyone im on day 2 of harvoni. Havent had bad side effects so far. Brain fog, blurred vision, burst of energy, sweats, at times but nothing crazy. I take it around 10 in the morning. I havent gone to work yet, but in a day or 2 i will. Kinda paranoid about falling out or something. I work inside installing floors so should i be concerned? Who else works while on treatment? Any tips for me?

Katie · « **Reply #1079 on:** February 14, 2015, 07:54:06 pm »

Hi Rod, Welcome to the forum and congratulations for starting your treatment.

Did you have any of those symptoms prior to treatment? I had horrible fatigue, brain fog and insomnia for several years. They went away when I began Harvoni and I felt 10 years younger. That lasted 8 weeks and then the fatigue came back and I felt miserable, just ached all over and kind of gloomy and a bit of vertigo for 2 weeks....then yesterday I woke up feeling so much better, as I do today. With that being said, every person seems to react a bit differently so you'll just have to take things as it comes. Maybe try and do things that aren't too strenuous or half days if that is possible. Be sure to stay hydrated as plenty of water (min of 1/2 gal per day)seems to help many of us. I take my medication a couple hours before bedtime (9:30) and it has worked out well, as I am sleeping a good 7-9 hours a night. Something I haven't done for so long I can't even remember. I try to do one active thing a day and if weather has not allowed it, I don't feel as good, so exercise is important. If you get a metallic taste in your mouth that goes away in a couple days. You will have subtle changes that come and go and hopefully your side effects are minimal. I think they depend some on your overall health and how damaged your liver is or isn't.

Good luck to you and if you have any questions or concerns this forum is very helpful and supportive.

You aren't alone and we are all fighting this battle together. Having people that understand, and are not judgmental is an incredible blessing.

Katie

Rod · « **Reply #1080 on:** February 14, 2015, 08:05:04 pm »

Thanks Katie im new to all this. I was diagnosed 3 years ago and to tell you the truth ive been freaked out. I have no energy and thats been going on forever.

Rod · « **Reply #1081 on:** February 14, 2015, 08:06:44 pm »

Oh and my memory is bad.

Katie · « **Reply #1082 on:** February 14, 2015, 08:33:33 pm »

You will see improvements for sure. I retired from a high pressured job as a research biologist almost 2 years ago because my fatigue and brain fog was impacting my work and that just stressed me out. I am so thankful Harvoni showed up in time to help us get our lives back together. Even when my fatigue returned 2 weeks ago, I was still sleeping and it was different so I knew Harvoni was still working, That is what comforted me. I only have 12 more pills to take for my 12 week treatment. I am happy and yet anxious. The wait for the blood work to see if I am undetected and if so then the 3 month wait to verify the virus is no longer in my system and replicating will be difficult for me, so I am counting on this forum to help me through that.

Have a positive attitude and be grateful, take good care of yourself with healthy food and adequate rest and listen to your body. It will tell you what you need and if you start feeling down, just remember your system is fighting a monster alien virus and it is temporary!

Katie

Rod · « **Reply #1083 on:** February 14, 2015, 09:01:29 pm »

Thanks Katie

kate0b1 · « **Reply #1084 on:** February 15, 2015, 07:40:40 am »

@rod, hi and welcome, i work full time and like katie am in the middle of a house project. some days are great and some days not so much, i am sleeping well except my husband tells me i have been talking in my sleep like mad lol but i don't remember my dreams. some days i am cold (but its crazy cold here so maybe everyone is cold). i am really bad about drinking water on the w/e's so i usually pay for that in the evening, feeling really achy and usually get a headache (there is a lesson here that i am not apparently getting).

kate

Rod · « **Reply #1085 on:** February 15, 2015, 08:08:33 am »

I hear ya kate. Are you on reatment now? If so how long? Will our energy return once virus is gone?

Rod · « **Reply #1086 on:** February 15, 2015, 08:09:21 am »

Treatment

Momof3 · « **Reply #1087 on:** February 15, 2015, 11:21:33 am »

I am on day 5 and am doing great. I wake up feeling rested I have never EVER felt that way in my entire life. I had a headache on day 3 but I didn't get a good breakfast in that morning so I think that could of been why. I have 3 kids ages 6,2, and 8 months and have no problems so far. I am taking everyday 1 at a time!

Rod · « **Reply #1088 on:** February 15, 2015, 11:36:47 am »

Right this moment i feel pretty good actually so its good to see and feel it working!

Lynn K · « **Reply #1089 on:** February 15, 2015, 08:09:33 pm »

Hi Rod and welcome
I am just finishing week 13 of Harvoni with Ribavirin added 4 weeks ago. I have 11 weeks to go on treatment.

I wasn't having any trouble with sides to Harvoni but since adding the riba been having more and more tiredness due to my low hemoglobin from the riba.

Good luck on treatment

Rod · « **Reply #1090 on:** February 15, 2015, 08:18:56 pm »

Thanks Lynn...good luck on your treatment as well!

mario555 · « **Reply #1091 on:** February 15, 2015, 09:34:56 pm »

Momof3. Good luck with your treatment. It must be hard to keep up appearances when you have to take care of small children. My best wishes!

Momof3 · « **Reply #1092 on:** February 16, 2015, 02:19:03 am »

Thanks Mario! I have pretty much set aside these 2 months to strictly taking care of me and the kids (with help of needed). I am limiting things planned to a day to day basis! It's actually kind of fun just going with the flow vs having practically 2 weeks planned out daily! The kids still have their extra activities and my oldest has school but other than that it's going to be as stress free as I can make it! I am prepared for good days and of course the bad ones too! But I am dealing with "today" that's it. I am keeping my anxiety of the what ifs away! But so far it's going good! I am surprised! I really had so much fear of the unknown and health issues has always put me in a funk so just putting all my energy into myself and my kids. I feel great ful for this opportunity to treat with the new meds. When I considered treatment before it scared me to death! I really am speechless when it comes to hearing stories of what people have gone through to fight this disease! 2015 will be a great year in this battle!!! Here's to the CURE!

Katie · « **Reply #1093 on:** February 16, 2015, 02:43:12 am »

Great attitude Momof3! Welcome! This forum will be very helpful and supportive for you.

Good luck and enjoy your children. They'll keep you busy and your treatment will fly by. We are all so fortunate to have the Harvoni breakthrough available to fight this alien virus so we can get on with our lives. I feel very blessed!

Katie

kate0b1 · « **Reply #1094 on:** February 16, 2015, 06:25:36 am »

@rod, yes i am on harvioni for 12 weeks i am in week 9 and am soo ready to be done, i don't usually wish away my days but i kinda am about this

kate

Mike2 · « **Reply #1095 on:** February 16, 2015, 07:34:20 am »

Hi All,
Just took my first dose of Harvoni. Have no idea what to expect but I do plan to do my normal routine which means work, play tennis and exercise. Let me know your thoughts I'm a little nervous.

Rod · « **Reply #1096 on:** February 16, 2015, 07:37:55 am »

I hear ya kate. Week 9? Your almost there. Keep your head up...it will be over before you know it. Im on day 4 and i wish i was at week 9

Rod · « **Reply #1097 on:** February 16, 2015, 07:40:05 am »

Welcome Mike...dont be nervous...this aint nothing. Im on day 4 and already feel better

Tommync11 · « **Reply #1098 on:** February 16, 2015, 09:37:28 am »

Hello everyone,

I am on day 16 on Harvoni. Had my two week labs thursday waiting to hear results other than few headaches little fatigued in the afternoons. I feel normal ! with this being said i hope its working ? i don't take any meds,don't smoke,My diagnoses 3 years ago was high inflammation minimal scarring. I am 45 athletic,work lifting houses.Don"t know if this all plays a part in why the harvoni is not affecting me with crazy sides? could someone elaborate?

Thanks
Tom

Tommync11 · « **Reply #1099 on:** February 16, 2015, 09:42:00 am »

Hi Rod,

Thought i would tell ya i've been flooring, lifting houses for twenty years!! wish your treatment the best

stay positive speak no negativity

and all will be well.JMO

Tom

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