Author Topic: Harvoni Side effects (Read 2177420 times)

nicole_1234 · « **Reply #300 on:** December 15, 2014, 12:52:39 am »

Hi everyone,

Just checking in. I'm 12 days in to Harvoni and my sx have gotten much better. Sleeping well, only slight headache/hangover feeling in the morning and still a bit more sensitive emotionally, but not freaking out panic type of thing. It's much more bearable now. Drinking lots of water and talking walks for exercise. Hopefully next week I can get back to yoga too!

Nicole

JoeK9999 · « **Reply #301 on:** December 15, 2014, 06:28:01 am »

I went to my doctor at 6.5 weeks into treatment, liver panel tests still normal. He decided to change me from 8 weeks to 12 weeks of Harvoni. I feel a lot better about that since at day 27 my virus was still detected. If he didn't change me to 12 weeks, I would have pushed it.
My vl was 3.8 million before treatment, but that test was take several months before I started the meds. In the back of my mind I always worried that just maybe I had a big spike in vl right before I started. Playing it safe.
I found out my doctor's wife was very ill and she passed away at a month into my treatment. That is when I found out about his wife. I know his mind was more on his family than his patients.

I am at day 54 today.
I feel better than I have in years. The overwhelming fatigue is gone, the stomach
related aches and pains are gone, the feelings of dizziness (almost vertigo) or gone.
These symptoms were all before I began treatment and rapidly began disappearing
after I began the meds.
Something is working and my body feels like it is rid of this virus. 32 more days and I am done. Taking this medicine for me, feels no different than taking a vitamin.

Genotype 1a
Infected for 25-39 years
Treatment naive

Proudgmma · « **Reply #302 on:** December 15, 2014, 07:20:56 am »

Hi all.

I am on day 3 of Harvoni and have absolutely no side effects except I am feeling better.

In reference to those of you having insomnia while on Harvoni, switch taking your pill to the mornings. I take mine after breakfast and have noticed after taking it I feel a little stimulated for a few hours but wears off by the evening. I believe this is what's keeping you from sleeping at night. I have no problems and sleep thru the night.

Good luck to everyone!

goodbyehepc · « **Reply #303 on:** December 15, 2014, 09:38:54 am »

Quote from: JoeK9999 on December 15, 2014, 06:28:01 am

I went to my doctor at 6.5 weeks into treatment, liver panel tests still normal. He decided to change me from 8 weeks to 12 weeks of Harvoni. I feel a lot better about that since at day 27 my virus was still detected. If he didn't change me to 12 weeks, I would have pushed it.
My vl was 3.8 million before treatment, but that test was take several months before I started the meds. In the back of my mind I always worried that just maybe I had a big spike in vl right before I started. Playing it safe.
I found out my doctor's wife was very ill and she passed away at a month into my treatment. That is when I found out about his wife. I know his mind was more on his family than his patients.

I am at day 54 today.
I feel better than I have in years. The overwhelming fatigue is gone, the stomach
related aches and pains are gone, the feelings of dizziness (almost vertigo) or gone.
These symptoms were all before I began treatment and rapidly began disappearing
after I began the meds.
Something is working and my body feels like it is rid of this virus. 32 more days and I am done. Taking this medicine for me, feels no different than taking a vitamin.

Genotype 1a
Infected for 25-39 years
Treatment naive

Hey Joe
All fantastic news! I asked my doctor why do some people take it 8 weeks and others 12 and he told me the normal time to take the treatment is for 12 weeks (naive) patients and for other they do longer treatment. He said 8 weeks is just a trial. I wanted to take it for only 8 weeks as it became undetected in the fourth week but after reading how some people relapse I wan to take no chances. SO yes you are right it is like taking a multivitamin and at this point my side effects are all gone (except can't sleep much even after switching my pill to morning). I only have the rest of December and then all of January so it's not that bad
Thanks

GHC

JillLynn · « **Reply #304 on:** December 15, 2014, 10:32:57 am »

Going for my 9 week VL. Praying still undetected and that my liver enzymes go down! I was in so much abdominal pain last night I slept in a ball. For me, I believe, if I had to stay on harvoni for 48 weeks like I did peg/rib twice....it would be just as bad. I've had horrible nausea and abdominal distress everyday. So happy for you that don't have any sides. WE all know drugs affect us all differently, and this has not been a picnic for me.

I've been infected since I was 19 years old and have had HCV for 41 years.
Not sure if this matters or as I've stated before I'm a tiny female. I never understand how the same dose for someone 100lbs. is the same as someone 400lbs.

sunrise · « **Reply #305 on:** December 15, 2014, 10:36:39 am »

JillLyn
I feel so bad you have to go through these bad side effects. Have you talked to the doctor about some medication to help you? Let me know if you talk to anybody professional.I would think if you were having such bad side effects that the doctor would have to help you let me know... Sunrise

mario555 · « **Reply #306 on:** December 15, 2014, 10:46:38 am »

I Lynn,
Sorry to hear about your side effects. You seem to be alone with these stomach problems. For one thing, your virus is undetectable so the medication is working. On the other hand, your enzymes are still very high which could tell you there is something else going on. That would definitely open up a discussion with your doctor!!!
As for your comment about body sizes and dosing, you can feel assured that you are getting probably twice as much medication than a 200 pounds male but, you kicked the virus!
Hang on and get rid of the virus permanently!

badbradley · « **Reply #307 on:** December 15, 2014, 11:53:43 am »

Quote from: JillLynn on December 15, 2014, 10:32:57 am

Not sure if this matters or as I've stated before I'm a tiny female. I never understand how the same dose for someone 100lbs. is the same as someone 400lbs.

Hi Jill,
I wondered the same thing. I treated on the same meds as Bucky, who is not a small boy - 6' 5", 240 lbs. We both did 12 wks. S/O. I am 5' 2" - 120 lbs. So, it has no bearing on body mass, as opposed to ribavirin and interferon treatments. These meds act directly on the virus, mainly viral replication, so it does it's magic in the blood stream, leaving one to consider blood volume-male vs. female,and the weight of each. Bucky has about 2 times the blood volume than myself. These are highly effective and highly potent meds we're on as you know, Bucky is cured, and I'm waiting for the final verdict yet. UD as of end of treatment. So I have to conclude that even blood volume is no match for these meds.
As I did not treat with Harvoni I can't further compare side effects, Olysio caused some minor problems for me - the usual,tiredness muscle aches. There seems to be a correlation between male vs. female regarding side effects. Seems more females have greater side effect issues-understandably.
Hope you start feeling better soon. I like your back-flipping panda!
Brad

sunrise · « **Reply #308 on:** December 15, 2014, 01:54:58 pm »

I agree Brad
Ive gained weigbt since starting tx, but im a, hate to admit , now 180lb 5'6" in. I was 150 going in. That has been one of my side effects, insatiable hunger. Besides anxiety. Not any problems with sun sensitivity. I wonder whats up with JillLynn. I'm sure there is some inderlying issue. Thats why I hope you call doc hun. I too was on S/O, but harvoni has sovaldi in it so it is probably comparable

nicole_1234 · « **Reply #309 on:** December 16, 2014, 12:55:25 am »

Jill Lynn, I had some stomach problems the first week on Harvoni. It's subsided now on the second. It was less painful, more of a rumbling really empty stomach feeling even if I had just eaten. I usually eat pretty healthy but I noticed raw veggies and juice were hard to digest so I basically started eating a ton of carbs. Healthy whole wheat bread and not so healthy pasta and muffins. I decided to just eat whatever I like and makes me feel good and comforting. Now my stomach doesn't bother me. It could also be I just adjusted to the meds. I'm sorry it's bothering you so much. Have you considered keeping a diary of foods you eat and how much water you consume and see if anything specific is triggering the worst of it?

I am having terrible emotions again today. Part of it is my nature of not being able to take it easy and I'm trying to do a million things at my usual pace and I have brain fog and it totally slows me and frustrates me and then I have a mini meltdown and cry about it. It's hard because I'm not myself and I'm afraid to tell everyone what's going on other than my closest friends. My boyfriend is also being extremely unreliable and having a hard time understanding and it's making me super sad.

I just realized I have to stop expectations of myself and others, remind myself daily I'm on treatment for 12 weeks it will be over before I know it, and in the meantime I cant "do it all" and I gotta slow down. I have to say I am generally an anxious person and do a lot of work to stay relaxed and have a peaceful mind. But I was feeling so balanced this last year from meditation and yoga and I feel like these meds are messing me up again.

SHEBA91514 · « **Reply #310 on:** December 16, 2014, 02:39:45 am »

Quote from: Vicky on December 02, 2014, 04:27:36 pm

I thank you all for your input. I am in the process of getting approved for Harvoni. Anxious to get through it. I spent 3 different years on combinations of interferon and other medications. I was diagnosed in 1989, the medications never worked but make me horribly sick. I ended up with cirrhosis and liver cancer. Luckily 2-1/2 years ago I received a great liver and I'm doing very well, except for the hep c. Anyone else post liver transplant?

Hello all you wonderful and courageous people. I just visited with my hematologist today. Had my liver transplant 11th anniversary on 12/06/14, yeah. I have Hep C also and he recommended Harvoni. So just wanted to touch bases with all you wonderful people and thank each and every one of you for sharing your experience with this magic pill. Will keep visiting for more input but have no clue as to when I will start if I do with this treatment. He is sending me for testing and blood work and will take it from there. Thanks again to all of you! Sheba

JillLynn · « **Reply #311 on:** December 16, 2014, 08:47:56 am »

Good morning!
I got my tests back......Not the viral load results yet.......and I'll be darn my liver enzymes are still high. AST-84 ALT- 168 Not astronomical, but my liver enzymes have been in normal range for a long time. Just started elevating at week 6.

Sunrise: my Dr has given me compazine and zofran for nausea/upset stomach and neither works. I've been drinking peppermint tea and trying ginger but nothing helps really....but I keep trying.

I walk a lot to keep my mind off it......but I have to be honest.....I am puzzled and concerned!

Nicole. Sorry your'e having a tough time (at least yesterday) with your emotions. Todays a new day and I hope it's better for you. We're all here to listen if it isn't. No treatment is ever easy for me either and I hear you about meditation and yoga ( helps so much ) and it's easy to get knocked off our square when something like this enters our system.

Sunrise: I have gained weight too!! and I never gain weight. and my stomach is really bloaty feeling and looking. I just emailed my Dr. again to see about a lower GI or MRI.

I'll be praying for you all........you all mean so much to me! I wish I could have you all over for support groups and coffee and water and real life hugs!

Jill

mario555 · « **Reply #312 on:** December 16, 2014, 09:22:13 am »

To Nicole1234. Strange that you talked about emotional problems... Yesterday I felt like I would blow up and felt like crying which is totally out of character for me. The emotions and feeling of tiredness and despair lasted 45 minutes but I had to leave work and go directly home. Those feelings abated after that time but... I don't really wish to experiment that again!
I'm 5 weeks into treatment (24 weeks) with Harvoni and have not had too many side effects until this emotional episode yesterday. As for food, my weight never varies. I did gain weight in the first 2-3 weeks but I lost it since. I just make sure I don't eat bad food (although since my liver feels better, I've had ''too many'' home made French fries and other shit I didn't eat before...).
So, for the emotional part, it seems to happen to people during treatment so make sure you can free yourself and change your frame of mind when it happens. Good luck!

CHepCFree · « **Reply #313 on:** December 16, 2014, 09:55:25 am »

Is anybody getting pain in the liver area? That is the only side effect I've experienced. I'm on Day 11 and this started at Day 7. I called the doc and he said go to the emergency room. All they did was keep me there 5 hours and do some bloodwork which showed my enzymes were fine. I also called Gilead and they could not answer if that was one of the side effects reported and they only report those most often reported.

JillLynn · « **Reply #314 on:** December 16, 2014, 10:17:43 am »

C HepCFree......I haven't had pain in my liver area and I have 3 more weeks of Harvoni. 5 hours...yikes!
Sure hope it goes away soon.
and hope you can get an answer.

Jill

JillLynn · « **Reply #315 on:** December 16, 2014, 11:07:00 am »

Update: Just talked to my Hepatologist.......he says my symptoms are NOT related to the Harvoni.

So, thought i should share this!
He's waiting for my viral load results before recommending what we do about the abdominal stuff going on.

Jill

coco · « **Reply #316 on:** December 16, 2014, 01:35:14 pm »

I have now completed 1 month of harvoni. At this time I only experience a little nausea for about 1 hour after taking it. For the 1st week I was nauseated, couldn't stay awake and was very, very tired. All of that has passed except I don't sleep well. This has been much, much, much better than the interferon. That treatment was horrible.

BattleTheBeast · « **Reply #317 on:** December 16, 2014, 03:57:18 pm »

Quote from: JillLynn on December 16, 2014, 11:07:00 am

Update: Just talked to my Hepatologist.......he says my symptoms are NOT related to the Harvoni.

So, thought i should share this!
He's waiting for my viral load results before recommending what we do about the abdominal stuff going on.

Jill

Hi Jill,

It's a little crazy isn't it? I felt like a darn pin cushion for a while when they were trying to get diagnose me. I'm glad it's not the treatment making you sick but hope they can figure out what is without too much trouble. I will be thinking of you.

Mel

HHburme · « **Reply #318 on:** December 16, 2014, 10:19:33 pm »

Harvoni day #4. Had manageable headaches, minor flu-like symptoms, nothing major. Now experiencing mouth sores......anyone else have this ??

BattleTheBeast · « **Reply #319 on:** December 17, 2014, 07:52:36 am »

Hi HH,

I had seen that on the forum before:

http://forums.hepmag.com/index.php?topic=1781.msg8243#msg8243

Hope you are feeling better!

Mel

JillLynn · « **Reply #320 on:** December 17, 2014, 10:57:35 am »

thank you Mel!
I know it's crazy!
Waiting on my 9 week viral load.....I know you'll be doing the happy dance with me when we hear the great "undetected" news! I should know later today! feeling positive!!!!!!!!

mario555 · « **Reply #321 on:** December 17, 2014, 12:39:15 pm »

Six weeks into treatment with Harvoni and my blood pressure keeps going up!
BP start of treatment = 120/80
BP at week 4 = 140/95
BP at week 6 = 150/100 !!!!!
I've never had blood pressure problems before. Anybody who had that problem lately? What actions have you taken to bring it down? Does it keep going up?? There are some of you who are more advanced than me in their treatments. Did this happened to you?
Thanks for anyone who would have comments/suggestions for me
Mario

BattleTheBeast · « **Reply #322 on:** December 17, 2014, 01:10:01 pm »

Hi Mario,

Mine's been pretty stable, no major changes and usually 120-125 over 80. I have had it higher one time when I was fighting back pain during a visit.

That's been the case through S/O and now Harvoni.

Mel

art1951 · « **Reply #323 on:** December 17, 2014, 01:34:31 pm »

Quote from: mario555 on December 17, 2014, 12:39:15 pm

Six weeks into treatment with Harvoni and my blood pressure keeps going up!
BP start of treatment = 120/80
BP at week 4 = 140/95
BP at week 6 = 150/100 !!!!!
I've never had blood pressure problems before. Anybody who had that problem lately? What actions have you taken to bring it down? Does it keep going up?? There are some of you who are more advanced than me in their treatments. Did this happened to you?
Thanks for anyone who would have comments/suggestions for me
Mario

Mario,
I had issues of about the same magnitude and had my general practitioner put me on blood pressure medication until I get off Harvoni. I was getting headaches when my bp was up.
-Art

JillLynn · « **Reply #324 on:** December 17, 2014, 04:50:36 pm »

HCV RNA still not detected at 9 weeks!!!!!!
YAY!! happy dance!!!!!!!!
Shake it up baby....twist and shout!

Doluska · « **Reply #325 on:** December 17, 2014, 05:20:53 pm »

Way to go! I am so happy to know that there is sucsess for most of us!!!!! We'll win, for sure!!!! Happy and bright holidays ! D

Doluska · « **Reply #326 on:** December 17, 2014, 05:30:15 pm »

Mario! I am on 8 weeks on S/O now, and my BP climbs up and HR as well. But my heart is badly compromised, so, I cannot complain, I knew that it will be hard, and my cardiologist is closely following me. Go to your family MD, he will take care about it. Don't live it unattended . It is not good for your heart and vessels. Good luck, D

RiseUp · « **Reply #327 on:** December 17, 2014, 05:47:18 pm »

Congrats JillLynn! Great news! I'm on day one, took first pill this morning. Praying for the best for all of us warriors.

nicole_1234 · « **Reply #328 on:** December 17, 2014, 05:53:12 pm »

Congrats Jill Lynn!!!! That's great news!

I just did 2 weeks test and I won't have my vl yet but I do see my Alt is down from 55 to 14 and AST from 63 to 18 so something is working! I'm feeling positive (to get negative;)

Ps I was in ER all day yesterday with my mother, she fractured her hip. Saw a lot of illness and even death the last 24 hours and just realizing to count my blessings and there is so much suffering in this world, yet there is always something to be grateful for. My mom is doing well and in good care.

BattleTheBeast · « **Reply #329 on:** December 17, 2014, 05:56:00 pm »

Quote from: JillLynn on December 17, 2014, 04:50:36 pm

HCV RNA still not detected at 9 weeks!!!!!!
YAY!! happy dance!!!!!!!!
Shake it up baby....twist and shout!

WOOOHOOOOOOO!!!!!!!!!

ak · « **Reply #330 on:** December 17, 2014, 06:14:25 pm »

SO HAPPY FOR YOU... WHOOHOO is right!

badbradley · « **Reply #331 on:** December 17, 2014, 08:44:55 pm »

JyllLynn Another UND! I'm very happy for you! What great news for the holidays. It's a good day! Brad

JillLynn · « **Reply #332 on:** December 17, 2014, 09:58:13 pm »

BadBrad, ak, Mel, Nicole, RiseUp, Doluska : THANK YOU!

Because my liver enzymes have been so abnormally high I was worried that the virus was back...I am feeling so relieved and hopeful and THANKFUL to have the support and sharing that we have we here. it helps!

I'm wondering how sunrise is? Haven't seen her today. I start to look for you guys if I don't see you. I care! xx

Nicole.....so glad your mom is ok......big hug!

UndetectableC · « **Reply #333 on:** December 18, 2014, 10:44:44 am »

Quote from: mario555 on December 17, 2014, 12:39:15 pm

Six weeks into treatment with Harvoni and my blood pressure keeps going up!
BP start of treatment = 120/80
BP at week 4 = 140/95
BP at week 6 = 150/100 !!!!!
I've never had blood pressure problems before. Anybody who had that problem lately? What actions have you taken to bring it down? Does it keep going up?? There are some of you who are more advanced than me in their treatments. Did this happened to you?
Thanks for anyone who would have comments/suggestions for me
Mario

I have not had my BP taken since I started Harvoni, however, I did have a nose bleed one night which I attributed to high blood pressure from stress.

mario555 · « **Reply #334 on:** December 18, 2014, 12:30:45 pm »

For my blood pressure... Since I've had my reading 3 days ago with an elevated blood pressure (150 over 100), I've started doing a little bit of effort to lower it down naturally (long walks, taking it easy, lowering my salt intake). It seems to have a direct effect on my light headaches which have almost disappeared. I'll continue these efforts and let you know how it goes...

jayme1017 · « **Reply #335 on:** December 20, 2014, 11:29:03 am »

Hi all,
I just wanted to share that I am experiencing a substantial "brain fog" for lack of a better term. Day 12 of Harvoni. A few people close to me have commented and I feel SO discombobulated it's debilitating. Of course I am VERY willing to go through this or worse to cure this horrific virus but I just wanted to share my frustration since this is really the only place I can do that. I don't have other side effects other than the occasional headache and feeling quite tired at end of day especially. Good vibes to you all!!

BattleTheBeast · « **Reply #336 on:** December 20, 2014, 11:51:34 am »

Hi Jayme,

I'd like to think that when we feel bad it's because the medication found some of the virus and it's very busy using all our internal energy to attack it! I know it may seem a bit weird but thinking that way works for me. This is a tough virus but these medications are tough as well and I would think there has to be some kind of impact while it's out there doing it's thing to rid us of the beast!

So take it as a positive sign, write notes for yourself till the fog lifts, maybe take a nap and let your body rest. I also had more brain fog when I didn't sleep enough or was super tired!

Mel

BattleTheBeast · « **Reply #337 on:** December 20, 2014, 11:52:55 am »

Quote from: mario555 on December 18, 2014, 12:30:45 pm

For my blood pressure... Since I've had my reading 3 days ago with an elevated blood pressure (150 over 100), I've started doing a little bit of effort to lower it down naturally (long walks, taking it easy, lowering my salt intake). It seems to have a direct effect on my light headaches which have almost disappeared. I'll continue these efforts and let you know how it goes...

Hi Mario,

How are you doing with the High BP and headaches? Just checking on you...

Mel

nicole_1234 · « **Reply #338 on:** December 20, 2014, 11:53:32 am »

Hi Jayme, I'm experiencing the brain fog as well. I constantly walk in to a room thinking to do something and by the time I get there I've forgotten what I wanted to do. People tell me to write things down but I even have a hard time remembering what to write. I'm just trying to go with it for now, be kind to myself, rest easy and not worry too much. Luckily you're only on an eight week treatment and me 12 weeks. We can do it!

mario555 · « **Reply #339 on:** December 20, 2014, 12:44:49 pm »

To Mel. Headaches are very low intensity and not continuous. On the other hand, my blood pressure is still around 150. I was 120/80 my whole life so I'm positive it's treatment related. I have tintinitis where I hear noise but its intensity appears to be related to my changes in blood pressure. When I go for a long slow walk, the noise level decreases!! I have read other posts where other people mentioned this. Blood pressure increases and hearing sounds where not mentioned as side effects in the studies so I must be an unfortunate one... I don't care, I'll only be at risk for 18 more weeks.. I've changed my behavior a bit after reading you guy's posts on good nutrition and exercise. Thank you all...

BattleTheBeast · « **Reply #340 on:** December 20, 2014, 01:02:57 pm »

Hi Mario,

So glad you have found a way to help yourself but high BP is not something worse messing with so keep checking with your Dr. I really think they rushed these medications through (I am glad on one hand, a little apprehensive on the other) because there is so much money to be made with a treatment/cure for Hep C. This is big bucks, billions of dollars.

For me Olysio was poison and I still dealt with it for 9 weeks because beating Hep C is such a tough thing to do that I figured I could deal with just about anything. I can tell you that now switched to Harvoni it's so much easier. I need to drink a ton of water to keep headaches down but I have not had to resort to even a tylenol for a headache since the switch over to Harvoni. Last office visit and 5 days into Harvoni my BP was slighly elevated, like 128/84 but I am going to keep an eye on it because it always used to be perfect or a little low.

It's so cool how we can all share what's happening with us and our lessons learned through treatment. We can see how others are managing their way through this because most of the doctors prescribing this weren't part of the clinicals and really only know what's been published which isn't much. I also think that in the clinical trials many people just "put up" with the sides if they are mild because they don't want to risk the chance of being removed. The trials can be really hard to get into unless you exactly match the criteria they are currently testing.

I learned from the people who handle the clinical trials at my ID docs office that in my area people with GT 1a, F3-F4, high viral load and treatment naive are very common so therefore I would have been at the bottom of a 200 plus person waiting list at their office alone. She recommended that if I could get my insurance to cover my medication it would be a much faster option. Not to mention if you want to do a clinical trial its mandatory to get a liver biopsy (no thank you).

Anyway enough of my rambling... have a great weekend.

Mel

HHburme · « **Reply #341 on:** December 20, 2014, 02:07:31 pm »

My BP is up, my Doc increased my meds to control. Had tinnitus prior to tx, but the sound (high frequency pitch) has increased. Day 8 of H and what I consider to be minor SE. I feel at times like the battle inside increases and have some weird sensations. 1 down, 11 more weeks to go.

Fight the Good Fight !!

BattleTheBeast · « **Reply #342 on:** December 20, 2014, 02:27:18 pm »

Thanks for sharing HH,

I really feel like we get a more realistic view of what's happening to people on the new medications than what the clinical trials showed.

I really believe any minor sides were downplayed or ignored by patients wanting so badly to be cured (would i complain about a little headache if I thought they would stop my trial, heck no). I don't think we will get hit with any awful sides just these little nagging issues that pop up. Even a rise in BP can easily be explained off to stress of being on a trial or being sick in general.

I also firmly believe that when I felt the worst was when the medications were really attacking the virus about 2 weeks into treatment. Once I got back 6 weeks it was like a weight was slowly coming off of me. I was carrying a pretty high VL to begin and was really sick before I even started treatment.

Just my thoughts and thank you HH, glad you have your BP under control with the Dr.

Mel

paparocks · « **Reply #343 on:** December 20, 2014, 05:47:42 pm »

new to this site_____my doc seems to think that her office will have no problems in finding a solution to overcoming the financial hurdles involved with Harvoni ...and my insurance company. So maybe I'm getting ahead of myself when I say I'll be starting the treatment soon.
I have epilepsy as well as hepc, with intractable sleeptime seizures. I'm curious if anyone here maintains regular sleep patterns...like sleeping through the night undisturbed? and not dozing off during the day?

nicole_1234 · « **Reply #344 on:** December 20, 2014, 06:14:01 pm »

Quote from: paparocks on December 20, 2014, 05:47:42 pm

new to this site_____my doc seems to think that her office will have no problems in finding a solution to overcoming the financial hurdles involved with Harvoni ...and my insurance company. So maybe I'm getting ahead of myself when I say I'll be starting the treatment soon.
I have epilepsy as well as hepc, with intractable sleeptime seizures. I'm curious if anyone here maintains regular sleep patterns...like sleeping through the night undisturbed? and not dozing off during the day?

My sleep was disturbed the first few nights but now I sleep normally.

BattleTheBeast · « **Reply #345 on:** December 20, 2014, 06:41:54 pm »

Hi Paparocks,

Glad to have you join us! Sounds to me like you have a great doctor and his office is going to do all they can to help you, that's great news. Not everyone has that support so consider yourself blessed!

I've had sleep issues for a couple of years so it wouldn't be a fair assessment but I will share what's happened with me. I am no worse than I have ever been and the past couple of weeks slightly better at night. I try not to nap during the day unless I've had no sleep at night.

Wishing you the best with your treatment. let us know how you are doing!

Mel

RiseUp · « **Reply #346 on:** December 20, 2014, 07:35:50 pm »

Hi fellow warriors, I'm into day 4 Harvoni and so far no sides. Just want to thank everyone for all their posts. That have been very helpful.

I waited 17+ years to try treatment again and glad I found this forum. We all will beat this dragon, keep the faith and stay positive.

badbradley · « **Reply #347 on:** December 20, 2014, 07:48:19 pm »

RiseUp, Hope all goes well with treatment! Give that dragon a beatdown!
Brad

RiseUp · « **Reply #348 on:** December 20, 2014, 07:58:59 pm »

badbradley, thanks, I'm determined to clear the dragon this time. How are you doing?

badbradley · « **Reply #349 on:** December 20, 2014, 08:12:28 pm »

RiseUp, I'm doing well thanks. I'm about 6 wks post treatment. I'm feeling better each week. Have no signs of the dragon, knock on wood! Glad to be done with oly!

RiseUp · « **Reply #350 on:** December 20, 2014, 08:21:09 pm »

badbradley, that's great news. Keep feeling better and keep the faith. Happy for you.

BattleTheBeast · « **Reply #351 on:** December 20, 2014, 08:32:53 pm »

Quote from: badbradley on December 20, 2014, 08:12:28 pm

RiseUp, I'm doing well thanks. I'm about 6 wks post treatment. I'm feeling better each week. Have no signs of the dragon, knock on wood! Glad to be done with oly!

Hey Brad,

So glad you are feeling better, that Oly well I think I still am having some stomach issues from it and it's been 2 weeks. I am so glad to be on Harvoni now.

Did you have any stomach issues after to deal with and if so how long did they last?

Thanks,

Mel

badbradley · « **Reply #352 on:** December 20, 2014, 08:56:39 pm »

Hi Mel, I had some slight nausea at the start of treatment. No stomach issues after week 2 on treatment or post treatment. The best part of being med free is sleeping and dreaming again. I've had more dreams post treatment than I ever had in my life.
You know the kind of dreams that seem so real they're hard to bounce back from for a while. Love the rem sleep!
It is good to hear your feeling better on Harvoni. I can "feel" your improved spirit after making the switch.
BTW, You are making a difference! You are so helpful to many. Take care

BattleTheBeast · « **Reply #353 on:** December 20, 2014, 09:18:01 pm »

Thanks Brad,

It's so nice to be able to ask each other things, it really does help! I am so much better on Harvoni, 2 weeks in and I am starting to remember who I am again. I even left the house yesterday with makeup on and dressed nice to go out for a late birthday lunch with my middle child. I haven't done that for many many months.

I can't really remember the last time I had a nice dream, before starting treatment it was more like nightmares when I did sleep. Maybe my liver was trying to tell me about the beast attacking it!

It sure would be great to be able to have a nice dream again. The place I signed up to go Float at is opening in a week or so. I am so totally ready now to get into the isolation float chamber and totally relax my mind and body. I really hope it works for me. I think I have been too tense for too long! Trying to keep up with work and home, family and responsibilities when you feel like crap tends to do that to you!

Brad, you help many on here as well. It's a real group effort and this forum is full of amazing people with so much knowledge and even more than that; so much heart.

Mel

Katie · « **Reply #354 on:** December 21, 2014, 03:25:00 am »

Hi everyone, I've been on Harvoni 18 days already! It is good to read about your experiences. The treatment has been very beneficial for me. My brain fog and fatigue left after the first couple days but my tinnitus increase to the point of sounding like the TV static...really bad for 2 days. Then 2 days of absolutely no noise, which I haven't had for about 10 years or maybe more as that kind of sneaks up on you, and then it returned at a low level. It was so wonderful to have silence so I am hoping that noise will end in the future. I was always so exhausted I had to force myself out of bed. Had bad insomnia for such a long time, I didn't know what it felt to be rested and now I am sleeping, and dreaming. I am still not getting a full 8 hours of good rest, but at least 5-7 hrs, so it is wonderful. I really think I was missing out on REM for many years because even when I did sleep I woke up exhausted and never felt like I had a dream. Never!

My main problem is motivation. Usually I am always busy doing projects but now that I feel much better, I can't get my butt in gear. I just putz around. Oh Well.

I wanted to ask if anyone is losing more hair than usual when showering? My last shampooing it seemed like there was more hair loss than normal shedding. Not an amount to panic over but just a bit more.

I did want to suggest acupuncture for those who are tense and even those with headaches and other issues. It really forces your body to relax and lets the energy flow. I don't understand how it works, but I am fortunate there is a great acupuncturist here who has helped me over the past 10 years when I was feeling so rotten. When you are tense and anxious you have blockages and it can affect your entire health, including blood pressure, sleep and aches and pains. Just a thought. Like any field, there are really good practitioners and really bad ones so do your research.

I am very lucky with how I feel and hope all of you have less problems as your treatment continues. Just having most of my brain back is remarkable. Still a ways to go, but I find myself laughing easier, being more positive and just finding joy in the little things. Before I was diagnosed (10 years ago) I told a friend I had "lost my spark" and I feel as if I am getting it back. Slowly, but surely! Enjoy your holidays and I'll be in touch again!
Katie

Katie · « **Reply #355 on:** December 21, 2014, 03:25:57 am »

My comment posted twice. opps. I guess I need to go to bed. Goodnight!

JillLynn · « **Reply #356 on:** December 21, 2014, 09:34:34 am »

Mel....I love the"""" GO AWAY""" flashing icon! You are something! xxoo's
Now I gotta see if I can learn how to do that!

BadBrad.....I had my first "remembering" dream night before last! It was amazing to wake up with a dream right there. It's been a million years since I remembered a dream, mainly because I always feel like I'm "surface sleeping"..... Mine was of birds in my Tri colored beech tree I planted 25 years ago thats huge now, and the hawk who was just sitting with them. Normally, as everyone knows birds fly away when the hawk shows up. I want more!

katie....No hair loss for me. I did on PEG/RIB but not Harvoni. someone else just posted the same question in one of our threads here.

The suns coming out here....have a great day everyone!

Jill

BattleTheBeast · « **Reply #357 on:** December 21, 2014, 12:49:32 pm »

Quote from: JillLynn on December 21, 2014, 09:34:34 am

Mel....I love the"""" GO AWAY""" flashing icon! You are something! xxoo's
Now I gotta see if I can learn how to do that!
The suns coming out here....have a great day everyone!

Jill

Jill,

It's actually a dragon picture and then I layered the Go away on top of it but it's too small to see the dragon. There's this online animated avatar creator that's super easy to use but I didn't get the sizing right first time around.

I was having one of those nights without sleep again I was messing around with avatars. I have been running for the past couple of hours. Got grocery shopping done and the boys medication is now at home. I am about to crash for a couple of hours. I seem to have a real issue with intense lower back pain when I don't sleep so I am hoping a little heating pad time and a nap will knock the pain away.

What's up with Hep C and insomnia? UGH!!!! Its been either I am completely out of it and can't be awake or I am full of energy (and pain) and wide awake! I do have to admit I had 3 normal nights of sleep in the past two weeks, no dreams yet but I actually slept for 7-8 hours straight like a normal person, it was so amazing to sleep through the night!!!

Have a great day and enjoy the sun.

paparocks · « **Reply #358 on:** December 21, 2014, 01:05:11 pm »

thanks for the responses. the side effects of sleep issues and head aches are worrisome both. my epilepsy meds prevent me from taking Tylenol as well as keeping my sleep patterns consistent. my current regiment consists of 2mg of lorazepam @ bedtime to knock me out along with Vimpat(also a great drug from Gilead) and lamictal...all at night to keep me down and reduce the severity of my seizures. that may be hard to interpret, but in short, I'm pretty drugged up. introducing another med that reverses their effect may only mean more of the lorazepam which is addictive.....at worse I can see myself having to detox after the 12 weeks. I'd rather be stoned than dead. so I'm glad this community is here for advise, and I apologize ahead of time if I start posting as if I were a drunkard in the near future.
...curious about the drug testing by the insurance companies ahead of the approval. I dont live in a medical marijuana state but find that it is a great drug to combat the negative effects of my current meds..I stopped smoking a few weeks ago and it looks as if I may be keeping it that way.___depression, mood swing, lack of appetite, and worse of all Rage issues. I pray my wife can handle me.

BattleTheBeast · « **Reply #359 on:** December 21, 2014, 01:59:25 pm »

Papa,

Take lots of walks when you feel up to it. Count to 100 when you feel the rage creeping and I highly recommend going to a health food store and checking out some essential oils, I know it sounds crazy but for me smelling lavender essential oil totally calms me. Bergamont is another one that helps me.

Here's an blog from someone talking about it with more details http://marycrimmins.com/top-10-essential-oils-to-support-anxiety/

On 12/19 I celebrated my 1st year without a cigarette. When you stop smoking it really brings on the crazies! I actually use a Vapor Set up without nicotine because after smoking for 40 years I needed to do something and this was a way to slowly titrate down the nicotine, completely stop the tar and all the other evil chemicals in a cigarette. I applaud you quitting but tough timing to do so. I still want a cigarette and it's been over a year.

You for sure have some challenges ahead, even the Vimpat that you are on for your seizures can cause insomnia as well as some mood challenges. Just let loose on the forum any time you need to, we will all help you through the crazies; we have all been there (I admit it!)

Have a great day!

Mel

Haggis · « **Reply #360 on:** December 21, 2014, 02:25:20 pm »

Hey folks. New here.
I'm Genotype 1a, treatment naive and just started Harvoni yesterday. I was surprised that BC/BS approved me for it because I've had a positive diagnosis for 12 years and have probably had the virus for 20+, but my fibrosis hovers in the 1-2 range.
Anyhow, so far so good. A little bit of nausea yesterday, but no biggie. The thing I have noticed most is a metallic taste in my mouth. Is that a thing?

Katie · « **Reply #361 on:** December 21, 2014, 02:36:58 pm »

Quote from: Haggis on December 21, 2014, 02:25:20 pm

Hey folks. New here.
I'm Genotype 1a, treatment naive and just started Harvoni yesterday. I was surprised that BC/BS approved me for it because I've had a positive diagnosis for 12 years and have probably had the virus for 20+, but my fibrosis hovers in the 1-2 range.
Anyhow, so far so good. A little bit of nausea yesterday, but no biggie. The thing I have noticed most is a metallic taste in my mouth. Is that a thing?

Hi Haggis: I did have a metallic taste just for the first couple days. No more and I am on day 18. I have been very fortunate and am feeling better and sleeping better than I have in years. See my above post. Welcome aboard and hope all goes well for you.
Katie

nicole_1234 · « **Reply #362 on:** December 21, 2014, 07:09:29 pm »

Hi Katie. I did notice some extra hair loss today when I showered, a big handful more than usual! I'm 18 days in. Well I'm glad it's 12 weeks I have a lot of hair. On 48 wk interferon I looked awful (and felt awful) by the end with half my hair and 20 lbs underweight. So just finding every reason to be thankful now!

Papa, before they started me on Harvoni I had to get a marijuana and alcohol test and be negative in order to start. And they will test periodically. I'm in Los Angeles on Kaiser. I'm sure different insurers have different standards, but as my doctor told me, they want to make sure they arent handing over $1200 pills to people that are intoxicated and might not adhere to proper regimen.

BattleTheBeast · « **Reply #363 on:** December 21, 2014, 07:33:09 pm »

Quote from: Haggis on December 21, 2014, 02:25:20 pm

Hey folks. New here.
I'm Genotype 1a, treatment naive and just started Harvoni yesterday. I was surprised that BC/BS approved me for it because I've had a positive diagnosis for 12 years and have probably had the virus for 20+, but my fibrosis hovers in the 1-2 range.
Anyhow, so far so good. A little bit of nausea yesterday, but no biggie. The thing I have noticed most is a metallic taste in my mouth. Is that a thing?

Hi Haggis,

Welcome to the forum, so happy you are here to share with us and even more happy you were able to get approved with a 1-2 range; it's really positive sign that you were approved and I am so excited for you to get treatment@

I never had a metallic taste and if I keep drinking the water consistently it seems to help with any little sides I do have on Harvoni. I haven't had anything I would say is even worth mentioning as far as a side effect other than I really feel better than I have in years!

Keep smiling, stay positive and keep sharing. You found a huge group of people who support each other, it's really a special place.

Happy Almost Xmas!

Mel

Katie · « **Reply #364 on:** December 21, 2014, 08:06:49 pm »

Nicole 1234- I appreciate your reply. It's always nice to have some confirmation on possible side effects. Hope you are doing alright. I read some of your earlier posts and it looks as if it has been difficult for you. We are on the same time frame as tonight will be my 19th pill! Time is going by fast, and that's good.

Take care, avoid stress if possible, drink lots of water and don't be hard on yourself! I have pushed myself for years when I felt exhausted and crappy (ex: I painted the siding of my entire house summer of 2013) and was a project person that amazed people, but all of a sudden I have no motivation even though I feel SO much better than I have in years! I figure I just need to take it easy and let my body heal and I'm not worrying about it. It's OK to let it go for now. The projects will wait for me, so I just concentrate on keeping the house tidy and preparing nutritious meals. Kind of like that old song...Don't Worry...Be Happy.

JillLynn · « **Reply #365 on:** December 22, 2014, 08:45:11 am »

MEL.....whoa! I have such horrible lower back pain too. I can't believe you said that.......I sure hope it goes away. I ache all over..joints, muscles......I feel like I'm a 100 years old. I've got 20 more days of Harvoni and if these aches/pains don't go away I've got serious investigating to do as to what the heck is going on now. I haven't taken any acetaminophen but today I just might have to.

Off to give more blood today and hoping my liver enzymes are going down.
20 more pills to go.....but who's counting?

I never gain weight and sure have on this harvoni. I'm 5' 100lbs and am up to 107......that's a lot for my size. My jeans are mighty uncomfortable.

I am sleeping again for the last 3 nights and so thankful for the gift of sleep.

filled with hope for us all! a cardinal just showed up on my feeder as I wrote that. I'm taking that as a good sign.

JillLynn · « **Reply #366 on:** December 22, 2014, 08:59:21 am »

haggis. Hi and welcome. I had the metallic taste for just a few days and it went away. Now that I'm off zoloft I have no nausea either. The zoloft did not mix well with the harvoni and I had so much nausea. Now that I've weaned off it.....all gone!

paparocks (great handle) My husband (at the time boyfriend) stood by me on peg/rib twice. Each time for 48 weeks. It made me the worse human being ever as far as anger and rage. He knew it was from the medication but why he chose to come over everyday and see me used to make me crazy. I was like just stay away because I can't help myself. I was too sick and couldn't be any other way. I learned a lot about people being sick and acting so hateful because when you're that sick.....you just can't help it.
He loves me more than ever crazy guy! (big smile!)
I'm sure your wife knows your true heart and will forgive any temporary changes from your normally sweet patient loving self! Best to you!

Jill

sunrise · « **Reply #367 on:** December 22, 2014, 09:00:25 am »

Hi JillLynn
I'm so sorry you're feeling so bad honey. Even though I wasn't on harvoni. I have been taking the sovaldi with olysio.I gained 35 pounds as well as major leg and ankle pain. It might be attributed to the sovadi part of the drug. I finished my treatment yesterday. And I'm going to get blood work today. I will let you know how things go with the pain and if I start losing weight. I hope you feeling better you might want to take something for it and drink plenty of water. Merry Christmas sweetie

JillLynn · « **Reply #368 on:** December 22, 2014, 09:23:59 am »

thank you sunrise........
You are finito!! oH hallelujah to that! NOW, hoping so much the sides of weight gain and pain will go away for you as well.
when I mention my side effects to some people who don't understand HCV they always say "Oh everyone feels that way" or "everyone has brain fog" not just HCV people. So again I'm grateful for you and everyone being here.

I don't know what's from HCV or whats from my genetics or age or childhood .....but I know this virus we've been carrying around for years has taken it's toll on top of just other life stuff. When you said you related to my post but didn't really feel it until your divorce. I didn't either until my radio show was budget cut in Dec. 2009. The universe (God) knew it was time for me to deal. Everything always makes sense when it's supposed to.

Merry Christmas to you too Sunrise. I thought of you this morning...the sunrise was deep pink and I wondered if you were enjoying it too!

Good luck with your bloodwork. We'll all here wishing you the BEST BEST results!

mario555 · « **Reply #369 on:** December 22, 2014, 01:08:41 pm »

4 week test while on treatment. I just had a depressing news this morning concerning my 4 week blood draw after starting Harvoni. My ALT at 95 and AST at 90 are still twice the norm. I was hoping for half that. I haven't received my VL yet (takes 2 full weeks in Canada) but I sure hope it will look better! I am f4 borderline cirrhotic with 8 millions VL. My doctor has me for a 24 weeks treatment so I guess I know why now... I'll post my VL later on this week.

sunrise · « **Reply #370 on:** December 22, 2014, 02:03:36 pm »

Hey warriors!
Well just got 5 viles taken out of me EOT. VL cbc. Waiting to hear. Hey Mario sorry for the disapointing news Don't fret though because it takes longer for folks that are more advanced to get their numbers down. Since you are on 24 week treatment that is a good tbing. Try to put it aside and have a nice holiday. You can deal with it after the new year comes. Hope you're drinking lots of water and getting your rest. Feel better hun. Everyone reacts different to these meds.
Hey Jill Lynn, love your wolf avatar. Hunt down the hcv beast!!!!. Thanks for thinking about me when you saw the sunrise :-).... blessings for a good day

BattleTheBeast · « **Reply #371 on:** December 22, 2014, 03:45:43 pm »

Quote from: mario555 on December 22, 2014, 01:08:41 pm

4 week test while on treatment. I just had a depressing news this morning concerning my 4 week blood draw after starting Harvoni. My ALT at 95 and AST at 90 are still twice the norm. I was hoping for half that. I haven't received my VL yet (takes 2 full weeks in Canada) but I sure hope it will look better! I am f4 borderline cirrhotic with 8 millions VL. My doctor has me for a 24 weeks treatment so I guess I know why now... I'll post my VL later on this week.

Hey Mario,

Keep your spirits up and in tact! You are going to be ok; we had close the same starting VL load and I am F4 as well. I wasn't UD until week 9's test. Stay strong, stay happy, you have so many more weeks of medication left to take, there's a reason they recommend 24 weeks!

As Sunrise mentioned, drink lots of water, get plenty of rest, listen to your body!

You've got this!

Mel

derekoti · « **Reply #372 on:** December 22, 2014, 04:32:12 pm »

I really appreciate everyone taking the time to post their experiences with the treatment it gives me hope. Im kinda scarred because the Int/Rib/Incivek treatment a few years ago almost killed me my platelets were in the low 6s after 2 weeks, so Im really praying I can tolerate Harvoni. My doctor says he thinks it was from the ribaviron the last time. But after reading your posts Im hopeful, I start harvoni on the 3rd jan

Katie · « **Reply #373 on:** December 22, 2014, 04:47:07 pm »

Welcome to this forum derekoti! You will find it very helpful. Harvoni is easy on you compared to the old treatment. I am fortunate as I have noticed very minor negative side effects and am feeling SO much better since starting the treatment. I am amazed as I was expecting only negative. I chose not to take the treatment 10 years ago as I didn't feel it was worth it but there are many on this site who did and are in a similar condition as you who are doing really well.

So here's to 2015! It's going to be a great year and we are here for you!

Katie

JillLynn · « **Reply #374 on:** December 22, 2014, 04:53:43 pm »

mario....I'm being a prayer warrior for you right now.......good luck with those VL results!

Derek.....WELCOME! Harvoni is a million trillion times better than PEG/RIB.....did it twice nearly killed me both times too......seriously one rough evil of a ride! Will be watching for your posts.

Jill

BattleTheBeast · « **Reply #375 on:** December 22, 2014, 09:45:02 pm »

Quote from: JillLynn on December 22, 2014, 04:53:43 pm

mario....I'm being a prayer warrior for you right now.......good luck with those VL results!

Derek.....WELCOME! Harvoni is a million trillion times better than PEG/RIB.....did it twice nearly killed me both times too......seriously one rough evil of a ride! Will be watching for your posts.

Jill

Jill you aren't just a prayer warrior, you are a complete warrior, I am in awe of what you have already done in an attempt to rid yourself of the virus and how you continue to fight. You are an inspiration!

Mel

sunrise · « **Reply #376 on:** December 22, 2014, 10:07:46 pm »

Yes welcome Derekoti
You will do great. I'm just finishing Sovaldi Olysio and from what o hear its even easier on you. Just make sure to drink plenty of water andlisten to your bodys' energy cycles. I had alot of days where mid day I became fatigued and needed a nap. It really helped. Best wishes for your recovery. ...Sunrise

Katie · « **Reply #377 on:** December 22, 2014, 10:28:01 pm »

How are you doing Sunrise? I have been reading your posts for the past month, prior to starting and then for the past 19 days while on S/O. Thank you for sharing and being such a strong supporter of everyone. It must be difficult waiting for that end of treatment blood work and know I am sending you high energy, good vibes.

Have a blessed Holiday Season!

Katie

sunrise · « **Reply #378 on:** December 22, 2014, 10:39:00 pm »

Same to you Katie
Wish you the best as well and thank you. I just know how scarey ot can be. All the unknowns.Nice to have you with us. Have a Blessed Holiday.... Sunrise

Subwayco · « **Reply #379 on:** December 24, 2014, 12:10:04 am »

Hello everyone,

This my first post and I have had Hepatitis C 1a for 44 years. I try not to do anything that could effect my liver. Nothing! I will tell you in a later post all about me and my journey. I have cirrhosis but my liver is soft and I have the usual symptoms. I am retired but like doing backyard projects. If I go at it hard, I can't do anything the next day. I've learn to paste myself but I wish I had more energy.
I've treated 3 times prior to my new treatment and I had some response but nothing that lasted. I'm now on Harvoni. and I'm almost 5 weeks into it. I do have additional fatigue and sometimes a strong headache but really don't feel the drug.
That said, my 4 week labs shows my AST and ALT are now in the normal range. I had 9,000.000.00 viral count and the labs showed my viral count as 40. 40? What does that mean? Does it mean if I tested a week later it would be zero? Seems like an odd number? Could it be possible I have cells that just won't go away or should I not worry.

I have read most of the posts on this forum and already have gained a lot of knowledge.

If you have the time please respond especially it you have similar results at week four.

Thanks for any and all help you can provide me!
Sincerely,
Rob

Lynn K · « **Reply #380 on:** December 24, 2014, 12:18:29 am »

Hi Rob

I have read there is no reason for you to worry. You have had a significant reduction in viral load and that is what matters. The experts say there is no connection with being UND at 4 weeks and eventual SVR12.

I could get some links you can read but really no worries you are on your way to being rid of this lousy virus.

How many weeks of Harvoni are you taking? I am assuming you are taking 24 weeks with cirrhosis.

Good luck to you
Lynn

Subwayco · « **Reply #381 on:** December 24, 2014, 01:31:55 am »

Thank you Lynn,

It's just an odd number that's all. I'm have cirrhosis and they want me to take Harvoni for 4 months. I've had upper right quadrant pain that really kicks up if I lift heavy items. I don't seem to feel it that much now so that's a good thing. With a count of 40 I should be glad rather than concerned. Thank you for your comforting works.

Merry Christmas,
Rob

Katie · « **Reply #382 on:** December 24, 2014, 02:01:58 am »

Rob...Congratulations! You are doing terrific! I will have my 4 week test in about 10 days and am hoping for similar results. Keep us posted how you are doing and feel free to ask questions. This forum has been so helpful to me and you'll have lots of support here. It really is wonderful how this group shares and takes care of each other.

Enjoy your holidays and don't worry. You are on the right path!

Katie

JillLynn · « **Reply #383 on:** December 24, 2014, 10:15:27 am »

Subway Rob........Nice seeing you here. I was worried when at 4 weeks my viral load was still detected too, because so many weren't.

Everyone on here put my mind at ease. By week 6 I was the BIG UNDETECTED. Even though its the SVR12or24.....it's still a boost to be undetected. It has helped me just knowing that.

Like several on here including you, I'm a "chronic relapser" of HCV treatments........so I know it ain't over til it's over but I'll take good my news along the way, thank you very much!

keep up the good the fight....I KNOW YOU ARE!!!!! Damn. you've been through a lot my friend!

Big cyber hug!

Jill

JillLynn · « **Reply #384 on:** December 24, 2014, 10:18:20 am »

Mel...thank you for what you wrote earlier. That touched my heart a lot! You have a gift my sister.

love, Jill

RiseUp · « **Reply #385 on:** December 24, 2014, 10:26:17 am »

Good morning my fellow warriors, I'm on day 8 Harvoni and happy to report that I have had no sides so far. I want to thank everyone for all of their posts, they have been encouraging. Looking forward to my 4 week blood results. Keep the faith.

JohnJRJ · « **Reply #386 on:** December 25, 2014, 05:54:02 am »

First Harvoni pill taken @ 3:45 pm 24 dec 14:
ringing in ears (volume 10) @ 9:30 pm bed @ 11:13 pm fast to sleep, wake up 2:23 am ringing @ volume 7, pain in right quadrant & painful cramp in right calf

RiseUp · « **Reply #387 on:** December 25, 2014, 09:05:42 am »

Good Morning and Merry Christmas. Just started day #9 no sides at all. Praise the Lord. Everyone have a Blessed and Merry Christmas.

Texasdave, how are you today?

JillLynn · « **Reply #388 on:** December 25, 2014, 09:30:59 am »

Beautiful sunrise RiseUP! (or is that a sunset?) love it either way! Awesome to the no sides!

John: up all night huh?...... Sorry about the ringing in your ears and your pain. Hope it's just the first day effects.

MERRY CHRISTMAS EVERYONE......if you don't celebrate, then a good ole MERRY DAY TO YOU TOO.

I've got 2 feeders full of goldfinch, cardinals on one and bluejays and chickadees on the other. Miss the snow but oh well! Being undetected is such a boost....having HOPE is too. Feeling grateful!

sunrise · « **Reply #389 on:** December 25, 2014, 09:56:29 am »

Merry Christmas all warriors. Saying prayers for our healing and mercy. Thank you all for sharing both good and not so good times. Blessings... Sunrise

visoianu · « **Reply #390 on:** December 25, 2014, 06:53:43 pm »

I have started taking Harvoni eight weeks ago. Initial viral load a little under ½ million. After 4 weeks the load dropped to 40 and the liver enzymes became normal. I expected no detection by the end of 4'th week (rapid virological response) but it did not happen. The doctor increased the duration of the treatment from 8 weeks (as initially planned) to 12 weeks.
Main side effects: 1. A few days of slight headache, long gone; 2. High blood pressure, which I control by taking high blood pressure medicine in the morning and Harvoni in the afternoon; 3. Nightmares almost every night first five weeks. Then stopped.

Katie · « **Reply #391 on:** December 25, 2014, 07:03:42 pm »

Hi Visoianu! Welcome and Happy Holidays to you this Christmas Day! I am curious if you had high BP before starting treatment as my last check I had 104/62 and I am usually normal at about 115-120 over 70. Just curious. I hadn't had a dream I could remember for years and also had insomnia but since Harvoni, have been sleeping good (5-7 hrs a night) and had wonderful dreams, some disjointed and some like a good story, plus my brain fog and fatigue are basically gone. It is wonderful to feel like my old self again, and better each day. It is interesting to see how it affects people differently.

All and all, the benefits far outweigh any negative effects from this treatment for me and hope that is your experience as well.

2015 is going to be a great year!!!

Katie

Doluska · « **Reply #392 on:** December 25, 2014, 09:38:56 pm »

Hi gays! I didn't write couple of days! Marry Xmas for all of brave people, that are fighting the damn virus! I am ok, but getting a little bit tiered, my heart is weaker than usual, and I am taking it easy. I will finish my treatment in 3 weeks, and then - the game of waiting will start. I am happy, that my VL was undetected, in 4 weeks, but I don't think that from now I can be sure for the victory. I am telling to myself: go slowly, have plan B, live day by day, and do what u must to do. Hope for the best, but be ready for everything. This is my approach. It was working for me many times. And keep going, keep going! Good luck for all warriors!!!

BattleTheBeast · « **Reply #393 on:** December 26, 2014, 12:43:43 am »

Hiya Doluska,

Thanks for checking in, hope you are having a nice holiday and just taking care of you. It's going to be OK, we are all warriors and with all the new meds coming we will beat this horrible virus, we are the trailblazers! 2015 is going to be a much much better year for over 90% of us and that number keeps going up!

Hi visoianu,

I wasn't undetected at 4 weeks and was really bummed at first but you know what?I was undetected at 9 weeks and have a bunch more to go. It sure sounds like you have a great doctor who is watching you closely to make sure you get the best treatment possible. Be patient, be happy we aren't on Interferon with only a 60% chance of beating this beast. We will win this war...

Take care,

Mel

JoeK9999 · « **Reply #394 on:** December 26, 2014, 06:00:55 am »

Update on side effects.
I am just starting week 10 of Harvoni. Side effects were basically non-existent until
about week 6. At week 6-7, I began to get fatigue and brain fog. Did anyone else feel basically great for the first 6 weeks or so and then start having this happen?

JoeK9999 · « **Reply #395 on:** December 26, 2014, 06:14:02 am »

Quote from: visoianu on December 25, 2014, 06:53:43 pm

I have started taking Harvoni eight weeks ago. Initial viral load a little under ½ million. After 4 weeks the load dropped to 40 and the liver enzymes became normal. I expected no detection by the end of 4'th week (rapid virological response) but it did not happen. The doctor increased the duration of the treatment from 8 weeks (as initially planned) to 12 weeks.
Main side effects: 1. A few days of slight headache, long gone; 2. High blood pressure, which I control by taking high blood pressure medicine in the morning and Harvoni in the afternoon; 3. Nightmares almost every night first five weeks. Then stopped.

Visoianu,

I was on the 8 week treatment also and began with 3.8 million VL.
After 4 weeks I was detected and my ALT/AST went normal also. My doctor also moved me to a 12 week course of Harvoni. I haven't found the stats on Harvoni, but on the
Sovaldi/Olysio trials 43% were detected at 4 weeks still, and all those detected and undetected at 4 weeks ended up with the same rate of cure after a 12 week treatment.
Lucinda, the moderator, was UND at 4 weeks and then detected at 6 weeks and she is cured so just keep taking the pills for 12 weeks and all should be okay. I am just beginning week 10 and with barely any side effects for the first 6 weeks and feeling good, I am now getting fatigue and brain fog. I guess this is just how Harvoni works on some people.

JillLynn · « **Reply #396 on:** December 26, 2014, 09:07:11 am »

Hi All! good morning!

Hey Joe..... I have a tad over 2 weeks to go on Harvoni. ( my last blood draw will be Jan 12) I am way more fatigued than usual. My night owl days have come to an end that's for sure.

I haven't checked my BP or anything else so that could be high too, just not going to go to the DR until January 28 when I see my Hepatologist. I don't really have much brain fog but at the end of the day, as I just said, I am whipped. And that's not me at all.

Soon though......this phase of whipping HeP C's butt will once again be over. Been here before and hope to never have to be here again.

I'm just ready for this to be over. Bottom line, just so ready!

Harvoni: I hope and pray is my last ever HCV drug......

and I hope and pray for all of you too!

Jill

elizabethfaraone · « **Reply #397 on:** December 26, 2014, 12:23:56 pm »

I am not working and resting through this treatment with Harvoni. For the first two weeks, I took Tylenol as a preventive measure.

Day 1: Felt very achy and very tired most of the day and my nervous system felt a little strange but now I'm not feeling achy or tired and and I feel a fresh sensation coursing through my body - very strange

Day 2: Woke up and felt my usual achy, fatigued self. The tiny, hard "pimples" that I've had on my torso and arms since February are disappearing quickly. Sleeping a lot as rest brings relief from the body aches and extreme fatigue that the medicine is causing. With interferon, no amount of rest could bring relief from it's side effects, so I'm not complaining. But make no mistake, Harvoni is a strong medicine.

Day 3: I’m super tired

Day 5: Very tired. Experiencing a little bit of sharp pains in my liver, but not intense pains. Just short-lived, mild, sharp pains.

Day 6: Mild side effects from medicine have decreased.

Day 11: My immune system feels stronger than it has been in the past 28 years. I've been prone to urogenital infections and I'm happy to say I no longer feel that vulnerability. There is a certain weakness that is hard to explain in that area that I am no longer feeling. I'm still tired and achy, but not as tired and achy as the first few days of taking Harvoni. I don't feel like I'm experiencing side effects, although the fatigue might be a side effect. It's hard to know since I was fatigued before I started the Harvoni.

Day 13: Went to my sister's church Christmas party last night and danced, but shouldn't have. It made me feel sick. I have to continue to be gentle with myself while I'm taking this medicine. Resting up today.

Day 16: I’m extremely tired but I’ve had to do more because construction work is being done in my apartment so I have to prepare and clean up afterwards. The fatigue is more intense than usual. And I really can't do much of anything. Just came back from food shopping and I'm exhausted and feeling slight nausea. I also feel like it's more difficult for me to deal with other people's drama, but I must when it is thrust upon me. I wish I were on the beach in Tulum at this moment, with my friend, Juan, taking care of me. He was always such a good caretaker.

Day 20: Side effects from Harvoni are still present but mild. Very tired, brain fog and an unusual feeling that is hard to describe. Felt like crying all day yesterday but still happy with the knowledge that I am being cured.

Day 21: Just looked in the mirror and the circles under my eyes are SO DARK.

Day 22: Went to my sweet doctor today. He told me that yesterday, AbbVie announced a deal with Express Scripts, the largest pharmacy benefit management organization in the United States, making Viekira Pak the exclusive hepatitis C drug covered by Express Scripts for patients infected with the genotype 1 virus. Wow. When I look at information online, it seems to me that Harvoni is the superior medicine. Is there no end to this insanity.

Day 25: I'm still feeling very tired and am having a hard time with my housework. I'm also experiencing lung pain (I have a history of spontaneous pneumothorax), which is probably more due to the weather, but being weak can also bring on the pain. Christmas day I was feeling sick from going out Christmas Eve. I stayed home instead of celebrating. Emotionally, I'm OK but I do notice that I get sad feelings and I understand it is a side effect of the medicine, so the sadness doesn't bother me at all. Now I know what it is like to have a chemical balance that causes sadness LOL. I wouldn't take antidepressants as they can muck things up even more. It's OK to feel sad and I think it's better, for me, just to accept the sadness, knowing it will pass.

paparocks · « **Reply #398 on:** December 26, 2014, 12:36:48 pm »

I went to a health seminar back in August. CREATION health was the title. It was very helpful in that I never realized the importance of when to sleep as to how much time(hours) to sleep. In the seminar it was suggested through actual studies that laying down at 10pm as to 11pm increases the amount of actual HARD sleep a person gets no matter if you're getting up an hour earlier or not.
Just something to consider for those having sleep issues.
_interpersonal relationships
_environment (clutter/cleanliness)
all improve ones ability to live happy healthy lives and improve your feeling of good health over all.....if you dont practice any of these things and are feeling sicker than you would prefer try something new and see if these things may help.
I feel like crap most of the time because of my epilepsy and simple adjustments have greatly improved my quality of life over all....I dont look forward to the weeks I will be on Harvoni but I'm confident I will adjust and be ok no matter what...

BattleTheBeast · « **Reply #399 on:** December 26, 2014, 12:52:21 pm »

Quote from: JillLynn on December 26, 2014, 09:07:11 am

Hi All! good morning!

Harvoni: I hope and pray is my last ever HCV drug......

and I hope and pray for all of you too!

Jill

Hi Jill,

Morning, sounds like you are going ok, can you share some of your sleep time with me? I am back on the insomnia and rash phase which now must be blamed on the Sovaldi, yanno the drug with no side effects?
Our friend Rubye sent me a link the other day; sometimes I feel like I am really crazy and making this stuff up but I am on this insane roller coaster 3 days up, 4 days down, 2 days up and back down again! Check this out but pay particular attention to the more common list at the bottom and I swear I am so not a hypochondriac but I sure do feel like a whiny baby, I can't even imagine me on Interferon, the strength you all showed and many multiple times, just blows me away.

http://www.drugs.com/sfx/sovaldi-side-effects.html

The bottom list with the more common ones that you don't need to talk to your doctor about? I have every flipping one of them except the nausea which you had for me, so thank you and I am sorry I let you have that one. I would be happy to trade but they all kind of suck.

Anyway, I see my IDhero next Wednesday and I can't wait to hear what he has to say when he sees my arms covered in that wonderful hivelike rash. Not only did it come back, it's even more extreme. He's gonna need to fix something to handle the itch or I will be wearing long sleeves the rest of my life to hide the scars! Next summer if you see a brunette walking on the Jersey Shore with long sleeves on that will be me!

Hey where's Willy? Almost time for another missing persons report!

Have a happy Friday beautiful lady! Only a few more weeks for you and then we all wait together..

Mel

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