Author Topic: Harvoni Side effects (Read 2177421 times)

beto · « **Reply #2700 on:** October 15, 2015, 01:16:16 pm »

Quote from: coastal girl on October 15, 2015, 12:29:21 am

HI Beto,
You may be interested in this link...here is the conclusion from "A Proposal From The International Liver Pathology Group"....
"We propose that use of the word cirrhosis should be discontinued and that each patient with chronic liver disease of advanced stage should be provided treatment on the basis of clinicopathologic correlation of all available findings (Figure 1). This proposal is consistent with our current understanding of the evolution of chronic liver diseases and will also remove an unnecessary psychological burden from patients. In addition, research into the pathogenesis and evolution of chronic liver diseases will be facilitated if an etiology-based perspective extends all the way to the end stage. In the past, ignorance was a good reason to lump the advanced stages of different liver diseases together; the opposite may prove to be more useful in the future."
Copyright© by the American Society for Clinical Pathology
Here is the link, interesting read http://ajcp.ascpjournals.org/content/137/1/5.full

Happy reading

Excellent find Costal Girl!!

This is a clinical interpretation of what has been nagging me since I heard the doctor say "this scan does indicate that you have "CIRRHOSIS" that word was so powerful in that moment. When I have admitted to lay folks that I was diagnosed with it they must all think "dead man walking". 22 years ago when diagnosed with chronic hep C (from earlier non a non b)...it was the same thing 'dead man walking' but I got pissed off and trained for a marathon and finished it at the age I was told I would be lucky to see (that was 51, I am now 59).

Yes indeed. Not cirrhosis...but a gradient of fibrosis and no two livers are the same. A careful assessment of the individual case and treating or supporting that case given the individual variables. Totally makes sence. We certainly have example of regression to hope for in our own situations.

I like our chances of improvement or at least sustaining relative healthy liver function. All my thoughts are on "REGRESSION" . Funny my attitude has always been...if I was given a diagnosis that said I have a 5% chance of survival and 95% not...my heart and mind will take the 5%. here we have an amazing drug that not only gives us great odds of surviving Hep C but also encouraging possibilities of liver repair down the road. rock on heppers!!

Murray · « **Reply #2701 on:** October 18, 2015, 01:33:40 pm »

Newbie here. Diagnosed in 1990 contracted in the mid-70's. I've have refused all treatments until now.Saw the hell my friends went thru with interferon and passed. I have moderate cirrhosis. I'm 4+ weeks in on Harvoni and getting my ass kicked. Side effects by severity:
1. Fatigue
2. Bloating super gassy.
3. Diarrhea.
4. Severe joint pain - this has only occurred a couple of times.
Plus one I haven't seen anywhere on forum
5. My lip blew up last night and eventually went down but moved to inside my cheek along the jaw line. It looks like I have a pinch of tobacco in my mouth.

Anyone heard of this one or perhaps an allergic reaction...I've been fortunate to not have any allergies so it seems unlikely.

Really hard getting thru work

2 week blood test
VL was 8-15M but is now less than 1.12M
Liver function results were 100-150 and now both numbers are about 60
So clearly working but feeling awful.

beto · « **Reply #2702 on:** October 18, 2015, 01:49:44 pm »

Murray,

Some folks have gone through some pretty harry sides. Some not at all. There has been a lot posted over the months that you may find helpful. I guess 1st you should talk to your doc in case there is an allergic issue. We are all collective test mice in some ways, as the meds are so new. Consider the fact that a virus you have had for decades that replicates hourly by the trillions, is being killed off rapidly. Mostly the 1st 2 weeks are the hardest for the majority. I am sure others will chime in with similar sides...hang in there.

I too avoided The old meds and opted for alternatives. Harvoni was just too good to be true. I am through 12 weeks and so far I was undetected. Viral die off alone can be pretty toxic. Good luck and welcome...you landed in the right place...you are not alone. Peace...

BillT · « **Reply #2703 on:** October 18, 2015, 02:02:57 pm »

Hi Murray and welcome to the club.I think Cal mentioned the lip thing on the last page (?) of the Cal On Viekira Pak And Ribas thread so you're not the only one.Stay the course and beat this.I know all about bad side affects because I was on the interferon treatment.I hope it gets better but you're not alone in this.Cheers

mvnwy · « **Reply #2704 on:** October 18, 2015, 02:29:50 pm »

Since my doctor is clueless (I gave him a list of all my side effects during the one visit I will have with him) and seemingly uninterested I will chime in here because I literally have no knowledgeable professional to talk to about this. I am on week nine of what, if I don't give up and quit, will be a 1

gnatcatcher · « **Reply #2705 on:** October 18, 2015, 04:42:00 pm »

Quote from: Murray on October 18, 2015, 01:33:40 pm

Newbie here. Diagnosed in 1990 contracted in the mid-70's. I've have refused all treatments until now.Saw the hell my friends went thru with interferon and passed. I have moderate cirrhosis. I'm 4+ weeks in on Harvoni and getting my ass kicked. Side effects by severity:
1. Fatigue
2. Bloating super gassy.
3. Diarrhea.
4. Severe joint pain - this has only occurred a couple of times.
Plus one I haven't seen anywhere on forum
5. My lip blew up last night and eventually went down but moved to inside my cheek along the jaw line. It looks like I have a pinch of tobacco in my mouth.

Anyone heard of this one or perhaps an allergic reaction...I've been fortunate to not have any allergies so it seems unlikely.

2 week blood test
VL was 8-15M but is now less than 1.12M
Liver function results were 100-150 and now both numbers are about 60
So clearly working but feeling awful.

Murray, the lip swelling and its migration to the inside of your cheek could be an allergic reaction (hives), possibly to the Harvoni. It's definitely something you should report to your medical provider and/or Gilead and/or a nurse or pharmacist connected with the specialty pharmacy from which you get your Harvoni. (If the swelling gets so bad that it causes difficulty breathing, that would constitute an emergency.) Two of my family members have gotten hives from new-to-them medications. Sometimes it is possible to take something like Benadryl to get rid of the hives while continuing to take the medicine, but a medical professional must be the one to decide. You're getting good results from the Harvoni, so I hope either the hives aren't from the Harvoni or, if they are, there's a solution that will let you stay the course. Best wishes.

Gnatty

Murray · « **Reply #2706 on:** October 18, 2015, 05:58:48 pm »

Thanks to everyone for the support. Swelling is almost gone. Now if I can just get work without needing a nap
Murray

Lynn K · « **Reply #2707 on:** October 18, 2015, 11:25:59 pm »

Quote from: mvnwy on October 18, 2015, 02:29:50 pm

Since my doctor is clueless (I gave him a list of all my side effects during the one visit I will have with him) and seemingly uninterested I will chime in here because I literally have no knowledgeable professional to talk to about this. I am on week nine of what, if I don't give up and quit, will be a 1

Looks like your message got cut off short?

Did you mean what would happen if you do give up and quit?

Best to you
Lynn

BillT · « **Reply #2708 on:** October 19, 2015, 09:47:15 am »

Don't giving up Mvnwy.Just keep your eye on the good things to come once this is done.It won't last forever.

rp616 · « **Reply #2709 on:** October 20, 2015, 09:45:26 am »

Just got my 4th week blood test result. Virus count is undetectable. Hope it stays that way.

gnatcatcher · « **Reply #2710 on:** October 20, 2015, 01:10:58 pm »

Congratulations, rp. As I recall, you have taken a big risk by paying for the medicine yourself, so it's extra good that you're getting the desired results. Wishing you continued success.

Gnatty

Else · « **Reply #2711 on:** October 20, 2015, 01:21:59 pm »

Wow, super news rp!!!

motorhead · « **Reply #2712 on:** October 23, 2015, 08:03:16 pm »

Noob here, just into 4th week on the big-H with typical side effects.

Diagnosed in '98 while still asymptomatic. Genotype 4 with F1 fibrosis. College roommate diagnosed the year after with same rare (in the US) genotype, which led to the conclusion that we contracted it together in the '70s from IV drug use.

Roomie had moderate fibrosis and successfully completed peg-interferon & ribavirin in '03. Based on his success and my doc arguing that the younger you are the better you cope, I went the same route in '06. I responded, viral count was undetectable at midpoint, but ribavirin caused hemolytic anemia so bad by the 2/3 mark that doc had to take me off the treatment and virus came back.

During treatment, got such bad headaches from the int/rib combo that doc put me on topamax - nasty stuff that did nothing for the headaches and really spaced me out, so I stopped taking it, but not before the 3-drug combo damaged my hearing.

Post-treatment (int/rib), rapid fatigue with any physical activity, and chronic migraines never went away. Amitriptyline helped the migraines for a while, then doc switched me to nadolol which works better for me.

First few days of Harvoni had no side effects except sleepiness, then the headaches, body aches, and fatigue hit big time. Last week it was 2 migraines/day. Lots of good advice and experience here from those who have gone before -- kept trying all the various recommendations until I hit the one that worked for me: ice packs & tylenol at first sign of a headache.

Thanks to all of you, and best wishes!

KimInTheForest · « **Reply #2713 on:** October 23, 2015, 08:10:25 pm »

Welcome motorhead! And good luck with those headaches.They hit some people on Harvoni worse than others. Be sure you are staying well hydrated. Seems to help with all sides but especially the headaches.

best,
kim

Murray · « **Reply #2714 on:** October 23, 2015, 08:49:12 pm »

The hits keep coming. Today I started feeling really nauseous and having trouble eating. Harvoni? Fatigue is also pretty bad today. Anybody relate?

KimInTheForest · « **Reply #2715 on:** October 23, 2015, 09:32:19 pm »

Quote from: Murray on October 23, 2015, 08:49:12 pm

The hits keep coming. Today I started feeling really nauseous and having trouble eating. Harvoni? Fatigue is also pretty bad today. Anybody relate?

I had significant appetite suppression throughout my 12 weeks of treatment. But since I was on Harvoni plus ribavirin, I don't know which drug was responsible for that. I lost weight (when I had none to lose), and I was getting malnourished because it was so difficult for me to find things I could eat. I didn't have nausea though, just total appetite suppression.

As for fatigue, Harvoni actually had the opposite effect on me. I was one of the beneficiaries of the "Harvoni high". Not everyone seems to experience that. My fatigue set in later and was due to the anemia induced by the ribavirin.

Hang in there! The body has ways of adapting to lots of these developments. Many side effects will lessen or disappear after a few days or a week as the body adjusts to the new thing going on.

best,
kim

beto · « **Reply #2716 on:** October 24, 2015, 12:34:10 am »

Murray...Motorhead...Welcome

The new crop. You've probably been perusing the forum. There has been lots written...many before us and many will follow us. Most of my own symptoms or sides were in the 1st 3 weeks or so. The third day I sort of crashed, then rebounded and experienced the Harvoni high. I had some dizziness or light/heavy headedness occasionally where I felt like I might fall over...but mostly not too bad. I welcomed the sides because to me it meant the meds were working. I have come to believe that the viral die-off and the sudden changes in my body, account for most of my reactions. We are literally killing off billions of them little boogers overnight. Hang in there. When you get results on your 1st test it is life changing. peace

Murray · « **Reply #2717 on:** October 24, 2015, 04:36:03 pm »

Ok so the good news is my VL is undetected at the 4 wk blood test,
As for side effects I'm getting them. I've read here lots of you had problems week 1-3. I've had the opposite. Nothing the first couple of weeks but now starting week 6 I'm really hurting. Severe fatigue, nausea and no appetite, diarrhea, and joint pain. Barely making it thru work and even harder getting out of bed. Wondering if anyone has had this experience.
Seeing my doctor this Thursday, he thinks I'm exaggerating.

KimInTheForest · « **Reply #2718 on:** October 24, 2015, 04:48:59 pm »

Quote from: Murray on October 24, 2015, 04:36:03 pm

Ok so the good news is my VL is undetected at the 4 wk blood test,
As for side effects I'm getting them. I've read here lots of you had problems week 1-3. I've had the opposite. Nothing the first couple of weeks but now starting week 6 I'm really hurting. Severe fatigue, nausea and no appetite, diarrhea, and joint pain. Barely making it thru work and even harder getting out of bed. Wondering if anyone has had this experience.
Seeing my doctor this Thursday, he thinks I'm exaggerating.

Hi Murray. And congrats on your UND result at Week 4!

Re: the diarrhea - try the BRAT diet… Bananas, Rice, Applesauce, Toast. My diarrhea while on treatment cleared up pretty much immediately with the BRAT diet, and others here have recommended it too. I only had to do it for a few days. Rice and toast must be white, not whole grain, and applesauce must be from peeled apples so there is no roughage to irritate or stimulate the bowel further.

best,
kim

redcat36 · « **Reply #2719 on:** October 26, 2015, 09:43:38 pm »

Hello everyone,
I'm now in week 9 and just got results for blood tests after 8 weeks: ALT=25, AST=25, Bilirubin=0.6, Viral Load=Undetectable. I'm in for 4 more weeks and then final tests. Side effects are practicably undetectable - except for chronic fatigue which I have gotten used to. Happy days ahead.
Larry

Else · « **Reply #2720 on:** October 26, 2015, 10:04:08 pm »

Congrats Larry! You're in the home stretch.

slats1056 · « **Reply #2721 on:** October 26, 2015, 10:31:28 pm »

Great News Larry, looks like You are on easy street from here on out! I for one will be ecstatic if & when the fatigue ever lets up! Good looking numbers , too. Keep it up & keep posting results.

2rivers · « **Reply #2722 on:** October 28, 2015, 03:10:31 pm »

I just received my 3-month post-treatment results. I did the 8-week Harvoni treatment, rather than the 12-week. I would have had to pay the last 4 weeks out-of-pocket, and was advised that with genotype 1B there wouldn't be much statistical advantage by doing the extra 4 weeks.

I am happy to report that after living with HCV for 45 years I am now virus free. All my liver functions are well within the normal range as well. I remember seeing a forum that was tabulating results of the 8-week treatment. Does anybody have the link so that I can post there as well? Thanks in advance...

concerned father · « **Reply #2723 on:** October 28, 2015, 03:23:59 pm »

Quote from: 2rivers on October 28, 2015, 03:10:31 pm

I just received my 3-month post-treatment results. I did the 8-week Harvoni treatment, rather than the 12-week. I would have had to pay the last 4 weeks out-of-pocket, and was advised that with genotype 1B there wouldn't be much statistical advantage by doing the extra 4 weeks.

I am happy to report that after living with HCV for 45 years I am now virus free. All my liver functions are well within the normal range as well. I remember seeing a forum that was tabulating results of the 8-week treatment. Does anybody have the link so that I can post there as well? Thanks in advance...

Congrats 2rivers here is the link.

http://forums.hepmag.com/index.php?topic=2665.600

Katie · « **Reply #2724 on:** October 28, 2015, 03:36:13 pm »

Congratulations to you 2rivers! Move forward and enjoy your life!!!!

Else · « **Reply #2725 on:** October 28, 2015, 06:58:00 pm »

Wow, that is fantastic!!!! Huge congratulations!

beto · « **Reply #2726 on:** October 28, 2015, 08:38:05 pm »

Loving these 24 week UD's...wonderful Katie...don't leave us

2rivers · « **Reply #2727 on:** October 29, 2015, 12:57:54 am »

Thanks Else, Katie and Concerned Father! For what it's worth, I never experienced any unpleasant side effects throughout treatment, other than a bit of weak headache at the start, and some minor fatigue. These were so minor that I don't even know if I can attribute them to the Harvoni.

One unpleasant thing that happened though was a loss of some vision in my left eye due to sub-occlusion of the main retinal vein (retinal bleeding). This is ongoing, even 3 months after EOT, so doubtful if it can be blamed on the medication. I don't have any of the usual underlying conditions that cause this, such as diabetes, high blood pressure, etc. I am due to start intra-ocular injections if it hasn't improved by January. My HCV health providers said they wanted the complete diagnosis from my eye doc so they could forward it to Health Canada. Does anyone know of similar occurrences with Harvoni?

beto · « **Reply #2728 on:** October 29, 2015, 01:08:22 pm »

2rivers,

Only thing I can say that might have affected you from the meds is that perhaps our blood thins a bit. I can't be sure, however, I just had oral surgery for dental implants (should have waited longer) and I had a lot of bleeding. My doc commented on how thin the blood appeard. Now, I do have cirrhosis, so it is not uncommon to have clotting issues. However, my platelet count was very good at 4 weeks into tx (when last checked) however, my hematocrit and RBC were both low. I also noticed a drop in ferritin which is a good thing in my case because that has always been high.

Anyway, it would be worth checking out. I am on the 4th week EOT. Just an observation here that deserves study. We are pioneers. So happy that it has been an easy ride for you besides the vision issues.

2rivers · « **Reply #2729 on:** October 29, 2015, 01:25:44 pm »

Quote

Only thing I can say that might have affected you from the meds is that perhaps our blood thins a bit. I can't be sure, however, I just had oral surgery for dental implants (should have waited longer) and I had a lot of bleeding. My doc commented on how thin the blood appeard. Now, I do have cirrhosis, so it is not uncommon to have clotting issues. However, my platelet count was very good at 4 weeks into tx (when last checked) however, my hematocrit and RBC were both low. I also noticed a drop in ferritin which is a good thing in my case because that has always been high.

Thanks for that beto. I remember that my platelet count was concerning...just can't remember how out of whack it was. Will check on this...

Katie · « **Reply #2730 on:** October 29, 2015, 02:58:42 pm »

Quote from: beto on October 28, 2015, 08:38:05 pm

Loving these 24 week UD's...wonderful Katie...don't leave us

I'm not going anywhere Beto! I have just cut back on my comments as I have covered everything in previous posts. Just so you know, I am feeling better, slowly, and found the more exercise I get, outside in the fresh air, the better I feel so I have been pushing myself even when I feel like going back to bed. So that being said, everyone out there keep moving and don't spiral down into a weak, tired funk. The more you do, the more you can do!

Katie

2rivers · « **Reply #2731 on:** October 29, 2015, 05:27:41 pm »

Excellent advice Katie.

Bree · « **Reply #2732 on:** October 29, 2015, 06:01:34 pm »

Agree, going outside, walking the dogs, just being alive, really, really helps!

concerned father · « **Reply #2733 on:** October 30, 2015, 07:56:37 am »

My daughter finished her treatment 5 days ago and she already has much more energy

gnatcatcher · « **Reply #2734 on:** October 30, 2015, 07:59:48 am »

concerned father, I'm glad things worked out so well for your daughter. May the extra energy keep her -- and you -- busy with other things so that the remaining 11 weeks and 2 days until the SVR test fly by. -Gnatty

biminidave · « **Reply #2735 on:** October 30, 2015, 10:21:25 am »

Awesome forum here! I've had a dickens of a time finding SE info on Harvoni. With 9 pills left in my 12 week treatment my GI continues to tell me that H doesn't have many more SE's than headache and fatigue.

I've had arthritis for a half dozen years, probably more if you ask my rheumatologist, and since week 3 I've been in the worst flare I can ever remember. Hands, wrists, one knee and the tendons beneath it, and my left foot kill me every morning, but fade to bearable within a couple hours of taking an acetaminophen and a celebrex capsule. I drink 10-12 glasses of water a day to help with SE's.

Tiredness has been an issue throughout and I had my first headache a couple nights ago. Unbelievable headache.

I'm 62, 1a, early cirrhosis, and viral load went from 6.3m to undetectable by week 4. All liver functions returned to normal by then too.

I'll be real happy to finish this stuff and see how long it takes for my pain to lessen. The SE's have been worth it when balanced against going undetectable with a normal metabolic panel.

gnatcatcher · « **Reply #2736 on:** October 30, 2015, 10:33:55 am »

Welcome, biminidave, and congratulations both on the good labs and on staying the course despite all those SE's. Your GI doesn't understand that manufacturers are made to publicize only those SE's experienced by at least a certain % of study participants.

Harvoni clears pretty fast. The half life of ledipasvir is about 47 hours and of sofosbuvir is shorter than that.

Gnatty

biminidave · « **Reply #2737 on:** October 30, 2015, 12:18:10 pm »

Quote from: gnatcatcher on October 30, 2015, 10:33:55 am

Welcome, biminidave, and congratulations both on the good labs and on staying the course despite all those SE's. Your GI doesn't understand that manufacturers are made to publicize only those SE's experienced by at least a certain % of study participants.

Harvoni clears pretty fast. The half life of ledipasvir is about 47 hours and of sofosbuvir is shorter than that.

Gnatty

Thanks Gnatcatcher. I had no idea that Harvoni had such a short half life. I should be seeing at least SOME relief within a week of EOT then.

Else · « **Reply #2738 on:** October 30, 2015, 12:38:55 pm »

Hi Dave.

Geez, the SE's of Harvoni are a wild card, that's for sure. I'm past the 1/2 way point of my 12wk treatment. A few mild "start-up" headaches in the first week then nothing but good.

Well, except for the last three days. Major headaches that wake me up at precisely 4am. And unlike my first week on Harvoni, water doesn't seem to wash these away. So aspirin it is, though I've really tried to avoid anything, including supplements, during treatment. I still don't get back to sleep, so am overtired which of course means fatigued. What the heck???

I thought my body would be well-accustomed to Harvoni by now. Go figure. Oh well, I'm loving my 4wk labs and congratulations on yours!!! So SE's on Harvoni? Anybody's guess. But doable.

biminidave · « **Reply #2739 on:** October 30, 2015, 12:48:14 pm »

With labs like that you've got to keep at it Else. It'd be a bummer for us to let a "little headache" mess up the progress we've both made. Yeah, "little headache." LOL

beto · « **Reply #2740 on:** October 30, 2015, 12:49:38 pm »

Concerned Father

Congrats for your girl. You have done her a great service by supporting her through this challenging time. She is very lucky to have...well...a concerned father. Best luck moving forward.

biminidave-

What gnatty said. This medication does clear the body quickly which is one of the reasons it is stressed not to miss a day of tx. More information will be surfacing as more folks finish SVR and more studies and observations take place. One observation is that some have a rough time during tx and another is that many also do after completion. This indicates that perhaps there is something else going on with SE's other than reactions to the meds themselves. Many of us, left only with our powers of observation and speculations, feel that the process of healing and rapidly going from 40 years of a high viral load to zero in a few weeks, might just be rebooting our immune systems and our hemostasis so to speak. Regardless of how much we and our immunity wants rid of it, it was part of us for a long time. If ever there was a miracle drug...this is it.

Hang in there...I just considered the sides healing crisis...mine were not so bad though.

biminidave · « **Reply #2741 on:** October 30, 2015, 01:00:34 pm »

I didn't consider a healing crisis Beto, but with carrying the disease around for 40ish years myself and becoming undetectable within a month it could very well be what's happening to many of us.

Cool to think of it in that way.

BillT · « **Reply #2742 on:** October 30, 2015, 06:49:00 pm »

Beto,
I have to agree with Dave.I never thought about it that way either.These drugs are so new it's hard to say what is going on with them and our bodies.There's still a lot of information that needs to be gathered but in time it will be.I said on one of my other posts that I asked my doctor if they would do another FibroScan 12weeks EOT and he said they had been discussing that very thing.Nobody has much information on what happens post-treatment in the long run yet.Cheers

Param · « **Reply #2743 on:** November 01, 2015, 09:16:40 pm »

Hi 2rivers,

I agree that Harvoni seems to affect the eyes also. I am only two weeks in and I can say my vision seems to fluctuate quite a bit.

My daughter is an optometrist and I mentioned to her your retinal bleeding. She said it is surprising since it is Interferon that can definitely cause retinal bleeding. But you are right, Harvoni does not list retinal bleeding to occur.

Just as you said, when retinal bleeding is found, the red flags are diabetes, high blood pressure, cardiovascular and atherosclerosis. My daughter explained blood work needs to get done to also see your platelet levels and full blood work to rule out other health conditions. She said depending on your vision, usually no treatment is done because the bleeding can self resolve in a few months. But if it is starting to affect your vision or if there is a lot of bleeding, then yes, intraocular injections or laser is done in the eye.

I wouldn't be surprised if this was due to Harvoni even though there is no interferon now....I feel we are all experiencing new symptoms that are "unheard of"

Good luck!

Else · « **Reply #2744 on:** November 01, 2015, 11:34:22 pm »

And now for a brief commercial interruption...

https://www.youtube.com/watch?v=ddN6WHBmBmI

byebyeC · « **Reply #2745 on:** November 02, 2015, 12:54:01 pm »

Else,

A most excellent and let's just say it, what a woody sort of interruption!

2rivers · « **Reply #2746 on:** November 07, 2015, 01:46:48 pm »

Quote

I agree that Harvoni seems to affect the eyes also. I am only two weeks in and I can say my vision seems to fluctuate quite a bit.

My daughter is an optometrist and I mentioned to her your retinal bleeding. She said it is surprising since it is Interferon that can definitely cause retinal bleeding. But you are right, Harvoni does not list retinal bleeding to occur.

Just as you said, when retinal bleeding is found, the red flags are diabetes, high blood pressure, cardiovascular and atherosclerosis. My daughter explained blood work needs to get done to also see your platelet levels and full blood work to rule out other health conditions. She said depending on your vision, usually no treatment is done because the bleeding can self resolve in a few months. But if it is starting to affect your vision or if there is a lot of bleeding, then yes, intraocular injections or laser is done in the eye.

I wouldn't be surprised if this was due to Harvoni even though there is no interferon now....I feel we are all experiencing new symptoms that are "unheard of"

Good luck!

Thank you for your reply Param. Yes, I have had all the recommended tests and they all turned out negative. Interesting that you mentioned platelet scores -if I recall, mine were quite concerning - can't remember if they were low or high, and I'm not sure if that is resolved now or not. I will ask my doctor about it.

I am Canadian, but am now in the US for 6 months. I have seen an ophthalmologist here and he thought that I should probably start the intra ocular injections soon. He has referred me to a retinal specialist, who I see on the 17th. I would have to pay out-of-pocket, but would like a second opinion anyway. The cost of the injections are minimal compared to the cost of Harvoni, so I will probably proceed.

2rivers · « **Reply #2747 on:** November 07, 2015, 01:50:55 pm »

Param - Forgot to mention - hope your vision clears up on it's own and that your treatment, as it pertains to Hep C, is as successful as mine was. Hang in there!

Lynn K · « **Reply #2748 on:** November 07, 2015, 11:32:48 pm »

Hi 2rivers

Do you have cirrhosis? Many of us with cirrhosis have low platelet counts. Min normal at the lab I use is 150. Mine have been around 80 to 90 for several years I have seen folks with as low as 50 or lower I think the want to do a transfusion if you ge as low as 30.

By I as diagnosed with cirrhosis 8 years ago and still hanging in there

Good luck
Lynn

Scoutdoy · « **Reply #2749 on:** November 08, 2015, 12:26:12 am »

Lynn, since your treatment have you noticed any improvement in your day to day health? I read you are f4 and the treatment should help with further damage, but do you feel any relief from some of the side effects from when you had the virus. I have noticed my fatigue has improved and my joint pain has definitely improved. It's not "gone" but I feel that it has improved.

Scout

Lynn K · « **Reply #2750 on:** November 08, 2015, 12:36:01 am »

I never had any symptoms from hep c. I didn't have really any side effects from treatment with Harvoni either.

The only symptoms I have had are from cirrhosis and all those are primarily hidden in blood test results and ultrasound tests. The only visible symptoms of cirrhosis I have are lower leg swelling and thousands of little red dots on my arms and especially my stomach called petechia. I have felt tired and continue to feel tired but I assume that is a symptom of my liver cirrhosis

If I didn't have a low platelet count, an ultrasound that shows cirrhosis and the edema I would not know I had anything going on with my health. Other than being 57 with a sedentary job and needing to lose about 20 lbs

Mugwump · « **Reply #2751 on:** November 08, 2015, 05:34:11 am »

158 150-400 10*9/L

158 is my latest level and it was higher during treatment. I am still slightly over count on RBC at 5.49

My cirrhosis is still keeping my platelets down but at least it is not critically low. I did not do the combo of Ribaviron and only considered this option if I did not respond strongly to Harvoni. So I am still at risk for iron overload.

Before Harvoni I had problems with hemorrhoids with severe rectal bleeding for years and had to use prep H during harvoni treatment to get the problem under control.

Fortunately because my platelets did not drop the problems were not hard to deal with.

I know talking about the human plumbing is a bit of a PITA to some. But my father was a plumber so it is second nature for me...LOL

A word about weakened blood vessels in the rectum:

It is very hard to quantify a rectal bleed and most people will be shocked when a few CCs of blood show up in the toilet. If you have weakened blood vessels in the rectum it is very important to not panic. I almost went into emerge to deal with the problem and was scared stiff but quickly realized that if the bleeding did not stop within a short period of time then and only then a trip to emerge is necessary.

This is why it is important during HCV treatment to communicate with the professionals! Don't ignore the issue but educate yourself because it the only way to avoid the fears and worry that necessarily can happen to those of us who have advanced liver deterioration.

I have not had issues with this problem since the end of treatment and now that HCV is no longer ravaging my liver it is becoming much easier to deal with my ongoing battle with having weakened blood vessels down south!

Here is hoping that our aging blood vessels recover to some extent now that our livers and spleen can do the job that they were being prevented from doing by HCV.

Before Harvoni TX I purchased some pants that would make adult diapers easier to wear. I am wearing them as I write this post.

It looks like I will not need to go for the diaper option because of Harvoni thank my lucky stars! In 2013 I was preparing for my demise and was prepared for the end stage problems that cirrhosis brings.

The deterioration of my eye sight, the temporary problems with blood pressure and all the other issues that I am experiencing I can attribute to the damage that HCV has done. Harvoni is a shock to the system but the shock seems to be that I am actually going to live longer.

Cheers
Eric

2rivers · « **Reply #2752 on:** November 08, 2015, 12:37:08 pm »

Quote

Do you have cirrhosis? Many of us with cirrhosis have low platelet counts. Min normal at the lab I use is 150. Mine have been around 80 to 90 for several years I have seen folks with as low as 50 or lower I think the want to do a transfusion if you ge as low as 30.

By I as diagnosed with cirrhosis 8 years ago and still hanging in there

Good luck
Lynn

Nope, no cirrhosis. F2 - F3 fibroscore. Will your liver start to heal itself now that you're Hep C free? I have read that the fibrosis will slowly heal now that the virus is gone.

Lynn K · « **Reply #2753 on:** November 08, 2015, 02:15:54 pm »

Well I have read about a 50% chance my liver may improve and that would be over many years. I have more than some fibrosis (aka scaring) I have advanced fibrosis / cirrhosis so my liver is fairly messed up with lots of scar tissue.

But at least my liver won't get an worse as long as I don't get HCC I am compensated and fairly stable so I should be fine going forwards. If I had not cured hep c I would be back to waiting to decompensate and be needing a transplant or die waiting for one. From what I have seen about 16,000 people are waiting for a liver transplant and about 6000 transplants are performed any given year.

So the grim reaper has wandered off from me and is no longer right behind my back biding his time.

Glad you don't have cirrhosis. I would find out more about those platelets

Good luck
Lynn

2rivers · « **Reply #2754 on:** November 08, 2015, 07:45:40 pm »

Thanks Lynn, and good luck to you too! Forgot to mention, nearly 4 months post-tx I have almost no joint pain. I can play tennis nearly every day now without worrying about it. At my age (65) that's something I can really be thankful for.

KrabbyKay · « **Reply #2755 on:** November 24, 2015, 04:16:46 pm »

Well, I just got thru crying, I mean the boo-hooing, sobbing, soaking wet, snot going all over the place-type crying...Thank the good Lord I found you guys! I am brand new at this. I've never joined any kind of forum, group, chat, or anything before. But I really need you guys now. Just a little background...I've been on Chemo before, infusions, surgeries, all kinds of hell. but this.... I've been on Harvoni for a whole whopping five days now, and I'm here to say it's one of the worst 'treatments' I have ever been thru. I am soooo sick at my stomach, can't keep anything down (call it the Harvoni diet), legs cramps and pain. I know there's no such thing as a pain meter, but if there was, mine would be pegging in the red right about now in my legs, but I already had RLS from the get. Not only physical pain but...oh God the guilt! All kinds of guilt....can't take care of my husband, nor the cats, let alone the house, the yard, extra stuff like social stuff, Christmas décor, gifts and cards, etc. FIVE DAYS and this is real fun already. Cant wait till a month from now. I've read that some of you get better, some get worse...I guess I'll have to hide and wait to see how it's gonna do me. I also have worries and stress about going out of town for Christmas. Like I said, thank God for you guys that I can spill my guts to you and you understand.

gnatcatcher · « **Reply #2756 on:** November 24, 2015, 04:37:34 pm »

Welcome, KrabbyKay. Yes, you can come to us for sympathy, but it's your doctor who knows if it's possible to prescribe some relief for your side effects. As for the guilt, I hope your husband is the understanding sort who will be happy to have a very scaled-down holiday season so that you have as little stress, and therefore pain, as possible.

Gnatty

KrabbyKay · « **Reply #2757 on:** November 24, 2015, 06:06:16 pm »

Thank you Gnatty. and no he's not, he's mad that he is not being taken care of...I even got threatened with the big 'D' word two weeks ago when I went thru an epidural for my lower back. Life goes on. In fact...thank all of you, but I pre-apologize for things said in the future because I'm tired of crying about it, now I just want to be 'sarcastic'....but hopefully, that will turn into 'funny'. You betcha!

Katie · « **Reply #2758 on:** November 24, 2015, 06:25:28 pm »

Sorry you are feeling so rotten Kay. Your side effects seem much worse than 90% of us so I would let your doctor know ASPA.

Sorry, I can't respond to your husband's spoiled brat attitude as I haven't much tolerance for a grown man deciding he needs to be taken care of when his partner is suffering. I don't know how old your children are but if they are grown, just cancel Christmas if you have to. If they are young, that really isn't an option but maybe just stay home, keep it simple and have a family Christmas. Those are usually the best and is more what Christmas was meant to be. No one would want you to travel if you are sick and not feeling good. Home is where you need to be.

Those with strong negative side effects from the treatment usually seemed to last just a week or so. Maybe that will be your case. You may always experience fatigue some muscle or joint issues but they should get better. Be sure you drink a minimum of 8 glasses of water or more a day and rest as you need to. The flushing with water has helped MANY with their side effects and don't self medicate yourself as you may be doing harm so check with your doctor even with over the counter remedies.

That is about all I can suggest. I do know forcing some mild exercise has helped me and others. I would literally have to make myself get outside and walk around the yard if it was even for only 10 minutes. The more you do the more you can do and it keeps your muscle tone and retains your flexibility and is good for depression.

Take care and I am sending you {{{HUGS}}} and healing light!

Katie

beto · « **Reply #2759 on:** November 24, 2015, 08:35:09 pm »

Hey Krabby Kay,

The worst is behind you. There have been a few folks (and I am sure they will chime in) who had some pretty bad sides. Sounds like you have a lot going on emotionally, physically, historically etc. Yes lots of water and just give yourself a break through the worst of this. I am sure that relief is on the way. Is your husband ill? That why he is dependant on you? listen, this is your time to heal and you are getting rid of this virus once and for all. I believe that sometimes we can go through a bit of a "healing crisis". Not everyone is comfortable with that idea, I know. It would be helpful if you would post your stats and numbers, to give us all an idea. I will not speculate on the family drama because I know zero details. However, besides this forum, please find someone or, some group that can support you in your day to day struggles. And go ahead and cry it out. In a week you will be posting on how much better you are doing. Hang in there and use this forum regularly. Peace

sugarfree · « **Reply #2760 on:** November 24, 2015, 10:45:45 pm »

Hi Art, congrats on even getting the Harvoni, I can't add much to everyone's advice except I took my pill every AM at 9am. I slept almost all day and all night for 12 weeks. I drank gallons of water hoping to just flush everything out of my system . i finished meds in April. The good news is October 16 I was pronounced Cured!!! Hang in there , think positive and listen to everyone's advise but pay attention to what your body can and cannot do and just roll through the the treatment. God bless

Scoutdoy · « **Reply #2761 on:** November 25, 2015, 01:17:52 pm »

Kay, just from personal experience with the hubby issues, I went through quite the time with him not understanding the daily pain of having this disease. There is just no way to express the sadness that I went through with him not understanding that some days I struggled with joint issues so bad I couldn't even pour a cup of coffee without wanting to cry. He didn't understand that I was soooo fatigued I would just fall over in bed when I got home from work. He did absolutely nothing to help me physically or emotionally. Although I am 49 I still have a 7 yr old at home (yes, he was a surprise baby) I finally had enough of his non caring non understanding attitude. NO ONE I repeat NO ONE can understand what it is like to live with this disease unless they have it ...that is why this forum was so detrimental for me ....I spoke with people that knew and understood what I was going through .that really understood what I was going through.. I finally just said fuck it get out ...the stress he put on me every day was criminal. I felt so alone even though I was married. Best decision I ever made. Got Harvoni, took the meds, and I felt great! I grabbed the world by the balls and haven't looked back since. After the first week I slept better than I had in 10 years..my joints quit hurting...the fatigue was gone....and I have been undetected in every test so far and I started at 13.9 million. My advice:: get plenty of sleep and stay hydrated. Make a plan and stick with it. Use this forum, I talked with a group of people throughout the whole treatment. They really helped me emotionally if I was feeling down, and some days it was outright funny! Like how some of us lost our pills, the dog licked one (and she still took it) etc....Get your life back and enjoy the ride! Good Luck Kay, we are all here for you, and your gonna beat this

Scout

Bree · « **Reply #2762 on:** November 25, 2015, 01:39:58 pm »

Scout, you are a living example of someone who re-claimed their life! Way to go!!!
I did that with my ex 20 years ago. We have had some hilarious dialogues with our group on this forum... many days I laughed out loud! So much fun humor... I will cherish the experience here forever. And, when to going gets tough, we are there with empathy and compassion.

Kay, no matter what, put yourself first, to heck with everything else. I'm feeling like things will get better for you... we all wish you well!

beto · « **Reply #2763 on:** November 25, 2015, 03:34:39 pm »

Atta girl scout!!!

BillT · « **Reply #2764 on:** November 25, 2015, 04:00:49 pm »

I think this is a excellent time to listen to that little voice in my head saying..."Shut up Dude,your trying to get yourself better,not get yourself killed".

Scoutdoy · « **Reply #2765 on:** November 25, 2015, 05:23:49 pm »

Good one Bill...LOL

Scout

beto · « **Reply #2766 on:** November 25, 2015, 07:42:37 pm »

We should start a major "venting" thread. Scout...get on that.

I had riba rage today and I am 7 weeks EOT and never had riba.

KC · « **Reply #2767 on:** November 26, 2015, 09:59:26 am »

Quote from: KrabbyKay on November 24, 2015, 04:16:46 pm

Well, I just got thru crying, I mean the boo-hooing, sobbing, soaking wet, snot going all over the place-type crying...Thank the good Lord I found you guys! I am brand new at this. I've never joined any kind of forum, group, chat, or anything before. But I really need you guys now. Just a little background...I've been on Chemo before, infusions, surgeries, all kinds of hell. but this.... I've been on Harvoni for a whole whopping five days now, and I'm here to say it's one of the worst 'treatments' I have ever been thru. I am soooo sick at my stomach, can't keep anything down (call it the Harvoni diet), legs cramps and pain. I know there's no such thing as a pain meter, but if there was, mine would be pegging in the red right about now in my legs, but I already had RLS from the get. Not only physical pain but...oh God the guilt! All kinds of guilt....can't take care of my husband, nor the cats, let alone the house, the yard, extra stuff like social stuff, Christmas décor, gifts and cards, etc. FIVE DAYS and this is real fun already. Cant wait till a month from now. I've read that some of you get better, some get worse...I guess I'll have to hide and wait to see how it's gonna do me. I also have worries and stress about going out of town for Christmas. Like I said, thank God for you guys that I can spill my guts to you and you understand.

KC · « **Reply #2768 on:** November 26, 2015, 10:04:18 am »

Welcome to the group KrabbyKay. You will find this forum full of good information and a great deal of support. I just want to let you know to give it time, all your symptoms may eventually go away. I am 6 months out of treatment, waiting form my latest labs to come in. I just wanted you to know that I sailed through my 12 week TX but had about 10 days of horrible symptoms. The rest of the time I felt like a million bucks. So don't give up, it could change. I wish you well and hope the journey gets better for you! KC

gnatcatcher · « **Reply #2769 on:** December 04, 2015, 12:48:29 pm »

REAL-WORLD HARVONI SIDE EFFECT DATA
The www.natap.org site has a new report: "AASLD: (HCV-TARGET) - Treatment Outcomes With 8, 12 and 24 Week Regimens of Ledipasvir/Sofosbuvir for the Treatment of Hepatitis C Infection: Analysis of a Multicenter Prospective, Observational Study - (12/03/15)" Unfortunately, there's no direct link, so you have to find and click on that title in the "Current Hepatitis C and B Articles" column. Lots of good info, including the following percentages of real-world Adverse Events (SXs):
Fatigue 22%
Headache 21%
Nausea 8%
Diarrhea 6%
Insomnia 6%
Flu-like illness 5%
Dyspnea 3% (plus 0.4% for exertional dyspnea)
Dizziness 3%
Cough 3%
Rash 2%
Itching 2%
Decreased appetite 2%
Anemia 1%
Irritability 1%

There's a separate table of Significant Adverse Events, with 91 out of 2005 people experiencing something significant. Ten of the 2005 died, but three of those ten (metastatic breast cancer, traffic accident, and narcotic overdose) seem unrelated to Harvoni, and I don't know how one figures whether Harvoni can be implicated in the others, like the 2 "Death NOS (not otherwise specified)."

beto · « **Reply #2770 on:** December 04, 2015, 02:41:22 pm »

Gnatty just checked the site out, very interesting. Good news for those folks adding Riba. Appears to close the SVR gap if with harvoni 12 weeks. So the extra issues for you riba dudes, may pay off.

Bree · « **Reply #2771 on:** December 04, 2015, 03:09:58 pm »

Quote from: beto on December 04, 2015, 02:41:22 pm

Gnatty just checked the site out, very interesting. Good news for those folks adding Riba. Appears to close the SVR gap if with harvoni 12 weeks. So the extra issues for you riba dudes, may pay off.

Haven't read the info but that freaks me out.... I went through a big thing with my doctor over adding riba, which he didn't want to do due my extreme difficulty with it during first treatment and my rapid UND from very high viral load... and I worried a lot about it. I had seen that those on the forums that had riba were seeming to all be SVR. I'm just going with Harvoni alone has done it for me!!! I want to be informed but sometimes it harms my psyche to read this stuff.

beto · « **Reply #2772 on:** December 04, 2015, 04:58:39 pm »

Bree,

We are like treatment twins and we are both gonna do the 12 at the same time time....don't forget we started the 6 week EOT club.

. We will be just fine. Riba schmiba. My actual 12 week is Dec 26 (day after xmas). I'm thinking of getting the labs done on the 23rd.

Bree · « **Reply #2773 on:** December 05, 2015, 12:59:24 am »

Quote from: beto on December 04, 2015, 04:58:39 pm

Bree,

We are like treatment twins and we are both gonna do the 12 at the same time time....don't forget we started the 6 week EOT club. . We will be just fine. Riba schmiba. My actual 12 week is Dec 26 (day after xmas). I'm thinking of getting the labs done on the 23rd.

Thanks Beto! It really did help me emotionally to have the 6 week test. I'm glad you and I are the captains of the 6 week club! I felt like I could relax a bit. My 12 weeks is Dec. 21 but I was going to have it on Dec. 17 (11.5 weeks post) to get results by Christmas. I can't think of a better present. I didn't even tell one of my adult kids I did this treatment because they had watched me suffer and relapse on the previous one. I wanted to tell him on Christmas. But, today, my girlfriend said why not just do it on the actual date that is 12 weeks. So I guess I will do that on Dec. 21. I understand why you are thinking of having your test on Dec. 23. And you also have the benefit of the awesome fibroscan results.

I'll have the LFT back before Christmas and that's pretty indicative of the direction toward SVR I think. And, I'll have results by New Year's and that's a good thing! Honestly I don't think a few days matters at all in the results... I'm just being weird. Amazing how much energy we put into planning out these blood test!!! Here's to SVR, I'm claiming it and I've already told people I'm cured.... and you too. And, Slats, and Drummerman, Scoutdoy and the rest of the crew.... Believing all the way.....!!!

Philadelphia · « **Reply #2774 on:** December 05, 2015, 01:43:14 am »

I did 2 weeks post and it was indicative of a cure too. And remember, I riba reduced from week 2 all the way through to week 24. That's a lot of ribavirin I didn't take!

jakas · « **Reply #2775 on:** December 16, 2015, 03:49:15 pm »

For me till day 6 its been dull headache, some body and liver pain. The BP has been up and down. Hungry all the time

I go to work daily but tired.

Anh · « **Reply #2776 on:** December 16, 2015, 10:48:03 pm »

Hello everyone, I wanted to contribute to this forum on behalf of my father who is currently on Harvoni. I feel that because this drug is so new, sharing is caring. ANY information is good information. My father started Harvoni October 8th, December 30th he will be finished with treatment. His side effects in the very beginning were insomnia, fever and headaches. The headaches got out of control where he had to visit the ER. They did some scans and he was good to go home. Close to the 6th week the headaches subsided and all the other side-effects were tolerable and not as bad. What became concerning was the joint pain and muscle aches. My father has a history of gout attacks on his big toe. He was on Colcrys and Allopurinol... but because of the interaction of Colcrys with Harvoni he decided to stop the Colcrys while on treatment. The allopurinol he stopped to due to the risk of any unmentioned studies and interaction. So back to the muscle/joint aches and pain. At first it was tolerable but afterwards kept getting worst and worst. He had to go to his rheumatologist and get steroid shots and medrol dose pack. These helped only a little, his pain became worst as the days went on. I forgot to mention the pain is located in his right elbow... different from his previous history of gout attacks in his toes. So... a week ago the pain got so worst that he had to schedule an appointment with his rheumatologist at 8AM... but the night before he was in horrible pain.. where he couldn't sleep and was up all night. He was on the ground and even cried. His primary care gave him Nroco 5/325 but it did not do anything to help with the pain. He got up early and waited for me in the car while it was still early in the morning. We went to his rheumatologist who took a look at it and went on with his gibberish... oh there's not much documentation on Harvoni causing gout and arthritis pain etc etc. He saw my dad had a temperature of 100.3 and referred my dad down to the ER. The general medicine doctor gave him morphine drip but that did not help with the pain... then she gave dilaudid and that helped control it a tad. Then toradol an anti inflammatory. Both Toradol and Dilaudid helped with the pain a lot. They said that they are afraid it was infected so they got his blood and also suggested they needed to get the fluid from his elbow to see if it was infected. Normal protocol, they got cultures and let it incubate for 2 days and while he was in hospital had him on the normal empiric treatment antibiotics, Ceftriaxone and Vancomycin. Culture came back negative he went home with Naproxen and Prednisone.... these helped a lot with controlling the swelling and the pain. But whenever it's close to his next dose he could feel the pain and warmth. He is down to his last dose of naproxen and his prenisone taper is down to 3 days left. I am not sure if any one has experienced this but I really hope once his harvoni treatment is over that he is clear from this evil virus and also the side-effects that came alone with it. I read a member name Kim mention very similar side-effects but I see that she does not post anymore. If you are reading this Kim please let us know how you are doing. Thank you all and I wish you all the best of luck on your treatment. No one deserves to go through this.

audreywald · « **Reply #2777 on:** December 19, 2015, 05:16:27 pm »

It's been awhile since I've been on here. I an 6 months post treatment, and guess what?

MY 6 MONTH LABS WERE 0 DETECTABLE.

I HAVE BEATEN THE DRAGON.

I NEVER THOUGHT THERE WOULD BE A CURE I COULD TOLERATE, BTW, IF THERE ARE SOME OF YOU DTILL SUFFERING POST TREATMENT, DON'T WORRY. I HAVE NO SIDES LEFT BUT IT TOOK A FEW MONTHS. YOU WILL ALL FEEL BETTER!

KC · « **Reply #2778 on:** December 19, 2015, 06:04:27 pm »

Congrats!!!! I am with you on everything. My 6 month labs came back clear as well. I had many post TX symptoms up until this past month, I am feeling wonderful and looking forward to a new year without the dragon. Merry Christmas!!!!!

KimInTheForest · « **Reply #2779 on:** December 19, 2015, 06:06:29 pm »

Congrats to both of you, KC & Audrey, on your SVR24! Makes for a wonderful holiday!

kim

Bree · « **Reply #2780 on:** December 19, 2015, 07:01:35 pm »

Congrats KC and Audrey!!!

Katie · « **Reply #2781 on:** December 19, 2015, 07:36:03 pm »

Here is a Happy Dance for both of you!!!! Have a wonderful holidy season and enjoy your new life, Dargon free!

Katie

KC · « **Reply #2782 on:** December 19, 2015, 07:48:52 pm »

Thanks!!!! Hope all is well with you Katie. I haven't been on here much.

allsimplicity · « **Reply #2783 on:** December 21, 2015, 03:28:55 pm »

Hi I am new to this forum, I started harvoni treatment three weeks ago. something really strange is going on. the best way to describe this is like a latic acid build up in my upper legs and hips this is so painful. it takes all i have to stand up and even then i need to hold on to something. I have called my doctor and im waiting for a call back. Is anyone out there feeling or having these symptoms?

Katie · « **Reply #2784 on:** December 21, 2015, 04:14:58 pm »

Hi allsimplicity...that sounds really uncomfortable. Are you retaining water? I would massage the legs and elevate whenever possible and when you can, keep moving. If you have some leg stretches you like I would try that too as you don't want them to get knotted up.

I don't recall anyone describing that type of symptom but could have missed it. Many complain about joint pain.

Hope you get in to see your doctor soon. If you have a good acupuncturist they can relieve lots of tension so it depends on what is causing this.

Welcome to the forum. It is a great resource with lots of folks who will give you support.

Katie

allsimplicity · « **Reply #2785 on:** December 21, 2015, 04:40:08 pm »

Thanks katie, ill keep you posted, i have been moving and it does dissipate a little today is bad and was thinking i should stay off my legs. but i think you are right about them notting up and it would make it even harder to move. boy this sucks but if I'm cured then it is worth it.

gsdmoonshadow · « **Reply #2786 on:** December 23, 2015, 03:01:14 am »

Day 12 on Harvoni with only one side effect. It's harder to sleep at night. I take the pill in the morning. I look forward to my blood work in early January. I had over 5.6 million for a viral load. I have read that Harvoni has been known to cut this in half after just one week. I sure hope it works this great for me! I take Benedryl at night to help me fall asleep. My doctor is fully informed about this. Getting approved for Harvoni is the best Christmas present ever for me!! A chance at life !!

jakas · « **Reply #2787 on:** December 23, 2015, 03:19:22 am »

I would love it everybody updated their signatures so we dont need to keep asking questions like genotype........

beto · « **Reply #2788 on:** December 23, 2015, 11:05:17 am »

Quote from: gsdmoonshadow on December 23, 2015, 03:01:14 am

Day 12 on Harvoni with only one side effect. It's harder to sleep at night. I take the pill in the morning. I look forward to my blood work in early January. I had over 5.6 million for a viral load. I have read that Harvoni has been known to cut this in half after just one week. I sure hope it works this great for me! I take Benedryl at night to help me fall asleep. My doctor is fully informed about this. Getting approved for Harvoni is the best Christmas present ever for me!! A chance at life !!

gsdmoonshadow,

You got this. There have been posts indicating a huge drop in 3 days with this drug. The obliteration is rapid. Very happy for you receiving the meds...truly a wonderful blessing. Now strap in for a fantastic ride. You have instant friends here that totally understand every aspect of what you have been through. It is wonderful to read posts of folks that are completely virus free after decades of tx failures, stigma and a laundry list of freak symptoms. Peace, welcome and happy new year.

tashagr · « **Reply #2789 on:** December 23, 2015, 06:47:00 pm »

Guys heaviness and mild cramping?or pain? not sure how to call it, not exactly pain more like heaviness and very mild cramping in the liver area is anybody has this effect? 8 days on Harvoni, no other side effects (if this one is one).

Bree · « **Reply #2790 on:** December 23, 2015, 10:31:17 pm »

I had major liver "jabs" the first week or so... I imagined Harvoni was attacking the HCV out of their home!

Scoutdoy · « **Reply #2791 on:** December 24, 2015, 12:30:14 am »

All simplicity...if your drinking enough water maybe try to keep track of how much you are peeing...so that you can report what is happening to your doctor and also are you taking any herbs or vitamins? They can effect Harvoni also

Scout

jakas · « **Reply #2792 on:** December 24, 2015, 12:42:48 am »

Quote from: tashagr on December 23, 2015, 06:47:00 pm

Guys heaviness and mild cramping?or pain? not sure how to call it, not exactly pain more like heaviness and very mild cramping in the liver area is anybody has this effect? 8 days on Harvoni, no other side effects (if this one is one).

I have had this for a year now and seems a bit better after 2 weeks on Harvoni. Will see how it goes in the next weeks

tashagr · « **Reply #2793 on:** December 24, 2015, 08:01:53 am »

Thank you guys, I do drink water but not too much maybe like 6-7 glasses a day and actually I peening a lot. I always have frequent urination. Maybe thats my problem, now you imagine that... No herbs, no vitamins for me.

Else · « **Reply #2794 on:** December 24, 2015, 11:12:43 am »

Quote from: Bree on December 23, 2015, 10:31:17 pm

I had major liver "jabs" the first week or so... I imagined Harvoni was attacking the HCV out of their home!

Me too. As I recall, it didn't go past the first week or so.

Woodstock1950 · « **Reply #2795 on:** December 28, 2015, 02:04:42 am »

I am new to the site , so trying to learn how to use it, I am just getting ready to start
Treatment tomorrow & nervous about any side effects . Liver Biopsy done 2 years ago,
So please forgive my awkwardness until I am a bit familiar . Thanks for all the information, as I am sure this will definitely help me through this time

KimInTheForest · « **Reply #2796 on:** December 28, 2015, 02:53:33 am »

Quote from: Woodstock1950 on December 28, 2015, 02:04:42 am

I am new to the site , so trying to learn how to use it, I am just getting ready to start
Treatment tomorrow & nervous about any side effects . Liver Biopsy done 2 years ago,
So please forgive my awkwardness until I am a bit familiar . Thanks for all the information, as I am sure this will definitely help me through this time

Welcome to the forums Woodstock. That's great that you are starting treatment. It's natural to worry about side effects. But try not to prejudge how the drugs may affect you, apart from the fact that you will almost certainly be cured! Many people have minimal side effects.

Drink plenty of water. Feel free to ask any question here. And good luck!

kim

Else · « **Reply #2797 on:** December 28, 2015, 11:35:17 am »

Hi Woodstock,

Welcome! I think you'll be happily surprised with treatment. I finished 12 weeks with very little trouble. As Kim said, don't forget to drink lots of water. That will help with any headaches you may (or may not!) get. Congratulations on obtaining treatment!

pansy · « **Reply #2798 on:** January 01, 2016, 11:05:33 pm »

I am new here.
Going to start Harvoni in March.
Diagnosed 1b in 2002, but after another recent retest, 1a.
Have been monitored, but no treatment previously, no biopsy, sonogram, showed fatty liver...
This might have resulted from prednisone use.
On a taper of prednisone, (down to 1mg from a start of 60mg a day) for ITP
LFT are 50's & 60's, no fibrosis.
I am excited ( I cried when this drug became available where I am.)
to have the end of this disease in my grasp.
If all goes as planned, will start pills March 1st.

I have some anxiety about side effects.
Prednisone was god-awful, but it worked.
For now, I am reading others' accounts.
Thank you for support!

Bree · « **Reply #2799 on:** January 01, 2016, 11:10:56 pm »

Welcome to the forum Pansy! I had very few side effects on Harvoni and even felt great much of the time. (They call it the Harvoni High). Expect the best... you might be surprised how easy it is! And one thing's for sure... it is effective!

I am 12 week post treatment and no virus! I'm calling it cured!

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