Author Topic: Finished 12 wks of Harvoni Jan 8 and not feeling good (Read 398403 times)

scott51-can · « **Reply #300 on:** July 13, 2015, 07:10:37 pm »

Quote from: sunrise on February 27, 2015, 08:18:59 pm

Thanks JillLynn, thanks Nicole. I hope you all are feeling better today. My nurse called me today, and she said the doctor told her since I've been off tx for 8weeks that my joint pain is not from tx. I do not agree as it got this way halfway thru tx. I hope it gets better. I know it might take awhile, months maybe. I. just hope I. cleared this virus, that's the main thing. A massage is in order...thanks for all your support...Sunrise

I have been off harvoni for about 5 weeks and my back has been so bad . The back pain started stared almost as soon as i finished tmy treatment and now its worse . somedays are better then others . I went to the chiro 4times got a massage and my second last chiro treatment worked but only lasted 2 days . so i went back and now my back pain is worse . Im just going to give it some time maybe see a natural path doctor .. nights are extremly bad and i cant sleep from the pain because it goes into my chest and i have trouble breathing.

Katie · « **Reply #301 on:** July 13, 2015, 08:01:15 pm »

Hi Scott. I sympathize with back pain as I have had issues for a couple decades and then 11 years ago ruptured a disc in my lower back. I've learned to live with it but it isn't fun and I have to pay attention on how I do things. So my issue isn't from treatment but you might want to see a back specialist and have an MRI to find out what is going on. What has kept me going, is acupuncture. I was a BIG skeptic but the PT wasn't helping much so I gave it a try and with 2 treatments I no longer needed my crutches or cane. As with everything there are good and not so good acupuncturists so if you can get a referral to a good one I would recommend trying it.

Another gal had bad muscle and joint issues during and after treatment and found she had Fibromyalgia. Is it due to Harvoni? Who knows, but that might be something to check into as well.

Good luck to you and I hope your condition improves.

Katie

coloradogirl · « **Reply #302 on:** July 18, 2015, 04:00:55 am »

I have a girlfriend that developed sever back pain after Harvoni. They did an MRI, and found a growth on the spine. She had surgery to remove it, and it turned out, it wasn't lymphoma. She was told last week she can return to working out. She has cerosis, maybe compensated. She is on the transplant list.

bpontrelli · « **Reply #303 on:** July 20, 2015, 11:00:06 am »

Hello its only been about 2 weeks since I finished the treatment, I am glad to say It is gone but now I have been vomiting and lose stools bad. I don't know what is going on.

Cally Balmoral · « **Reply #304 on:** July 20, 2015, 02:17:47 pm »

Hi....I would say to just be patient...some of us have new symptoms from Harvoni for several weeks after finishing. Myself it has taken longer than 12 weeks for them to go away. I am finally feeling much better. Take care and I hope you feel better soon.

Cally

hepcme · « **Reply #305 on:** July 20, 2015, 07:43:17 pm »

I also had both reactions the last day of TX , I got so sick at both ends LOL wow it was so nasty and dizzy sick and cramping nauseau just so ill for just two days...thought I had food poisoning..but didn't eat anything diff...I looked at it like WOW look how many nasty dead bugs just got flushed out...!!!! they have to get out somehow...
anne

Ledoc01 · « **Reply #306 on:** July 21, 2015, 04:20:03 pm »

Just tossing in my 2 cents here:

I finished my 12 week Harvoni Tx on May 15th or thereabouts,,, lol it's written down somewhere.

Anyway; I was one of those who had sides some of which were really annoying.

I still have the ringing in the ears a bit though not as bad as it once was.

Overall, I'm feeling pretty decent. Of course I have to bear in mind that the "Murphy was an optimist" stuff is bunk LOL> Just when I started feeling better...
my lumbar stenosis (yup... on the level right below the one I fused last year) decided to act up but hey...at least I have energy again :-)

hepcme · « **Reply #307 on:** July 21, 2015, 09:25:21 pm »

wow there was so much talk on the tennitis going on when first breakout of harvoni and now seems like a long distant symptom...mine is gone...will notice once in a great while but basically it is gone...will wonders never cease..?? there is hope for all of it....I am having a real hard time breaking but I also am in 70% humiidity and about 10,000 ft in the air averaging 7-9,000 altitude in Utah...very strange state ...signs never point to where you want to go and roads are marked before the fact and then it is anybody's guess , unless you live here...ski trails everywhere, the coolest slopes and they go right into downtown so you can ski right to the restaurant have your cake and eat it too...then go work it off on the slopes again...ofcourse it is 75 degrees right now and like all seasons , it has all changed... :{
I am so blessed to be able to go and see my grandson play Show baseball tournament...just grande \
anne

koifish54 · « **Reply #308 on:** July 26, 2015, 01:57:13 pm »

Was on 12 treatment harvoni just had svr last week results not in but I have been achy on and off from last two weeks of treatment and about 3 weeks after and sometimes afternoons but still have pretty good energy nervous though about being UD svr the aches are similar to pretreatment I also have hasimotos but tsh bloodwork is good anyone else have achyness and is still UD svr?

Katie · « **Reply #309 on:** July 26, 2015, 02:13:35 pm »

Quote from: koifish54 on July 26, 2015, 01:57:13 pm

Was on 12 treatment harvoni just had svr last week results not in but I have been achy on and off from last two weeks of treatment and about 3 weeks after and sometimes afternoons but still have pretty good energy nervous though about being UD svr the aches are similar to pretreatment I also have hasimotos but tsh bloodwork is good anyone else have achyness and is still UD svr?

Many have had side effects following treatment and have cleared the virus. The issues vary considerably, so don't stress out too much. Some of us even came back detected at EOT (me included) to go on to clear the virus by week 12 and I know how nerve wrecking that can be. The waiting is difficult.

Good luck and keep us posted!

Katie

BattleTheBeast · « **Reply #310 on:** July 28, 2015, 09:43:05 am »

Just thought I would share my happy news that came from my Doctors office at 7:30 AM; I reached SVR12!!!

I have battled the beast and won

Post treatment challenges (note that I was actually on treatment much longer than most for a total of 28 weeks)
1. RA Type symptoms started at around week 20 in treatment and just got worse, at week 10 post, they finally started to fade. No RA was detected and they told me it was fibromyalgia
2. As the Pain and RA symptoms have subsided I have been totally exhausted, like mono type exhausted (I really thought the beast was back).

Today I am just grateful and back to work although some days it's really tough to get moving to get there. If I can make it in I can make it for the day so that's my focus. I am trying to walk as much as possible because it's about all I can force myself to do right now but I am hopeful that this will get better as those six plus months of treatment get further behind me. I continue to listen to my body and rest as I can but started to push a little harder to move more.

Stay strong, keep fighting and we will all win this battle.

Mel

Katie · « **Reply #311 on:** July 28, 2015, 02:56:24 pm »

Quote from: BattleTheBeast on July 28, 2015, 09:43:05 am

2. As the Pain and RA symptoms have subsided I have been totally exhausted, like mono type exhausted (I really thought the beast was back).

Mel

I am SO

HAPPY

for you Mel! That is the BEST news ever!

Your symptoms sound exactly like mine with the core weakness similar to mono! I am improving little by little and it's been since the end of February that I have had this terrible fatigue, with all other blood work perfect. Hang in there, as we are gaining strength and our bodies are healing and adjusting. Hep C really wacked us off balance so it's taking time for whatever reason. Weird how it affects different people in different ways, huh?

Do something special for yourself and try and rest as much as you can. I can't imagine having to force myself to work the way I feel so my heart goes out to you!

Katie

SIXFOOTFOUR · « **Reply #312 on:** July 28, 2015, 03:36:43 pm »

i'm 9 weeks EOT. From 3 weeks into tx and at EOT I was undetected and over all other than light headaches during Tx it was all very easy.

But since about 1 week after completing Tx , Ive been dealing with GI problems (nausea and bowel) as well as a overall weakness and low grade fever. This has been going on for about 6 weeks now off and on. been to MD 2 times and nothing detected in blood work or stool samples. So both my internist and GI docs say it may be my body getting used to a normal liver functions...?

Anyone else have anything like this?

Cally Balmoral · « **Reply #313 on:** July 28, 2015, 03:56:49 pm »

Congratulations on a good EOT results. I think if you read the prior posts you will see that most of us have had the same symptoms and it just takes time to get over them. It wasn't a one day I have hepc and the next I don't. I think our bodies have to have time to readjust to being hepc free. So be patient and continue your updates. We are very happy that you are undetected.

Cally

mario555 · « **Reply #314 on:** July 28, 2015, 04:15:47 pm »

I am 13 weeks EOT after a 24 weeks treatment and I am still dealing with side effects mainly, tinnitus occasionally, a marked change in my keenness to stop working for good and finally the worst, very heavy and sudden bouts of dizziness (short lasting).
I will take all of this shit happily if I can get the magic word "cured". So for all the folks here, be thankful if you become UND. Many of us were slowly dying here. Good luck to everyone! SSorryfor my tone, I am anxiously awaiting my 12 weeks post and I am not the calmest of personality..

koifish54 · « **Reply #315 on:** July 28, 2015, 04:33:28 pm »

I am very thankful just curious and sharing stuff with everyone but yes I am anxious and this community is great support for all of us

SIXFOOTFOUR · « **Reply #316 on:** July 28, 2015, 04:53:27 pm »

Thanks Cally

Ive searched around and found a lot of different side effects post tx for 3-4 months

its just in my case the 12wk on Harvoni was easy and the past 8 weeks have actually been harder ,

Katie · « **Reply #317 on:** July 28, 2015, 05:04:00 pm »

Quote from: SIXFOOTFOUR on July 28, 2015, 04:53:27 pm

Thanks Cally

Ive searched around and found a lot of different side effects post tx for 3-4 months

its just in my case the 12wk on Harvoni was easy and the past 8 weeks have actually been harder ,

Same with me 6'4! I felt better than I had in years with my little orange pill. As soon as I stopped I sunk to a low I have never been, even before treatment. I have many improvements from the treatment which have continued and my energy is better this week so little by little we will recover and find our new normal.

Katie

Long_Haul · « **Reply #318 on:** July 29, 2015, 05:41:19 pm »

I have not been on the forum for a little while, but was thinking about you guys. I have to say MEL, YOU MADE MY DAY! Congratulations on making it to "I Beat the Beast!". You must be so relieved. I know how hard you have worked to get here and you deserve the result. I hope your RA settles down soon.

I am feeling better myself now that I am 4 months post treatment. I fell like I have more energy than I have in about 10 years. My lung issues are finally gone and I don't get tired like I was. I hope this recovery works for all who are cured and that you end up with no remaining treatment symptoms!

Best Wishes,

AL

Katie · « **Reply #319 on:** July 29, 2015, 05:50:15 pm »

Good hearing from you Long_Haul! Glad to hear you are doing good. I am still working on it, but a little better each day. Being healthy really knocked me on my butt!

Keep in touch!

Katie

hepcme · « **Reply #320 on:** July 29, 2015, 11:30:07 pm »

Hi ya'll I had to add , my lung issues are better and the heart palpatations are gone...whew that was scarey...lasted almost 2 weeks with irregulare heart beat and palps...on and off..some nights it kept me up aftraid to go to sleep...Just came back from a camp out for 6 days and a trip to Utah to see grandson play in world series baseball...was so much fun didn't even think of HCV...but one my way home...how I didn't think of it...I am free and feeling free...
YES thank you Jesus

Katie · « **Reply #321 on:** July 29, 2015, 11:44:46 pm »

Hi Hepcme...So glad you're feeling better....gives me encouragement. I too have improved some but not up to par yet. It's been 5 months for me. Yuck!

Glad you enjoyed your trip and your grandson! Here's to the rest of your healthy, fun filled life!

Katie

hepcme · « **Reply #322 on:** July 30, 2015, 12:07:05 am »

Hi ya Katie
I think my turning point was around 4-5 months when I had confidence that it was going to be OK...I got somewhat paranoid about the meds and thought we all were in BIG trouble with serious sides ...thanks to the forerunners that have a year from trials I was able to regain confidence and get to this point...Just sanded some doors and painted the baseboards...will paiint doors tomorrow early AM before the high heat comes in ....95 tomorrow...too hot to paint...wanna get the hardware back on and off my floor...lol...keep taking care of you we are all different and have different issues...the body is amazing...Glad you are seeing improvement sounds like it is around the corner for you and you will be back sawing away....
God Bless you ...will be praying for you
hepcme

Katie · « **Reply #323 on:** July 30, 2015, 01:00:22 am »

Quote from: hepcme on July 30, 2015, 12:07:05 am

Hi ya Katie
I think my turning point was around 4-5 months when I had confidence that it was going to be OK...I got somewhat paranoid about the meds and thought we all were in BIG trouble with serious sides ...thanks to the forerunners that have a year from trials I was able to regain confidence and get to this point...Just sanded some doors and painted the baseboards...will paiint doors tomorrow early AM before the high heat comes in ....95 tomorrow...too hot to paint...wanna get the hardware back on and off my floor...lol...keep taking care of you we are all different and have different issues...the body is amazing...Glad you are seeing improvement sounds like it is around the corner for you and you will be back sawing away....
God Bless you ...will be praying for you
hepcme

You GO girl! I can't wait to get my energy and motivation back. Still haven't been able to finish my bookcase so the books are still in boxes in my living room. No biggie and once they are gone the room will look so much bigger and better! I'll be fine, and many of the treatment improvements have continued so it was worth it in so many ways. I just feel bad by wasting the summer on the yard clean up I had planned. I also have a phenomenal berry crop. Bushes just loaded with blueberries and huckleberries and I've only picked a few handfuls for pancakes. I am going to force myself as I love having them through the winter. Maybe this weekend. YAY! We beat that parasitic virus!

Katie

hepcme · « **Reply #324 on:** July 30, 2015, 01:08:52 am »

Yes we did, amazing just amazingly wonderful...the rest is just the topping of the cake

Katie · « **Reply #325 on:** August 01, 2015, 05:37:04 pm »

FYI: I contacted Gilead online and reported my after treatment side effects and they called me. We discussed what was going on and then this week my doctor's office called as Gilead contacted them. This is promising to know Gilead is actually following up.

I am still weak, fatigued and not my old self, but day by day a little more energy and improvement is happening so I am very hopeful

Just wanted to pass that on to all of you and encourage you to contact Gilead if you are experiencing negative health issues after treatment, in spite of being cured and having perfect blood work.

Enjoy your weekend!

Katie

Debula · « **Reply #326 on:** August 05, 2015, 10:13:10 pm »

I am very happy to hear that you are feeling good now HepCme. Amazing!!
It is so nice to hear these success stories. Hopefully you will get your energy back soon Katie.
Blessings to all of you for coming back and posting for us

I still have a long road ahead and your posts help me see the light at the end of the tunnel

Please keep coming back

Peace & Love to you all

Deb

hepcme · « **Reply #327 on:** August 05, 2015, 11:59:55 pm »

Thanks for the post , I am amazed myself as I had some hard sides to deal with and was very concerned this was alll a hoax...I had labored breathing , short breath, heart palpataions and insomnia....around 5 mo post TX...seems like it has just been the last 4 weeks that health and normalicay has returned and I feel confident...Thank You God !!!! wow...that was scarey...I have had digestive issues last week where I would bloat and get so so so full on just a small amount of food...I was so uncomfortable...bought some Aloe Vera Juice and drank like a half bottle before meals ...and yogurt for a short time and now seems to be better....I am eating very small meals twice a day, and some fruit...ofcourse chocolate...LOL
anne

Keithn8eb · « **Reply #328 on:** September 18, 2015, 07:26:58 am »

I had 2 viral loads during treatment that were none detected, and now 90 days after treatment I guess you can say I am cured. Technically that is a very good thing, but I now feel worse than I ever have in my life. Even during treatment I brought up to both my hepatologist and my PCP that I had pain in almost the same area of the liver every time I took a deep breath, had no energy at all, joint pain got much worse. I don't know if it was coincidence, but both docs said it was my body/liver repairing itself and give it time. Well I have given it time and now they are finally getting concerned. Next week is blood pull, x-ray, ultra sound of liver gall bladder and kidneys. Why didn't they listen to me 6 months ago when it started? Don't get me wrong, I am so happy to be free of this virus after 38 years, but why did they ignore my complaints just because I was taking Harvoni?

WholeFoods · « **Reply #329 on:** September 19, 2015, 12:41:51 am »

I am 5 months post and remain undetected, so SVR12. Digestive issues are much better with fewer flare ups. Fatigue continues to be a big problem and muscle cramps may be easing up just a bit. A new and bothersome symptom that may be seasonally related is severe bouts of brain fog/forgetfulness (short term memory.) back to the d supplements. Fatigue kicks in if I do too much, which still isn't much so it's still a stamina issue. I can relate to seriously considering retirement. I have met with a couple different financial planners and they're all telling me bad idea, they're talking five more years!!! Trying hard to stay positive and feeling greatly blessed for being virus-free because it was really getting the upper hand. Continue to hold hope our bodies will recover with time. Hang in there everyone!!

CHepCFree · « **Reply #330 on:** September 20, 2015, 10:25:26 pm »

Please pray for all of us who are now dealing with decreased quality of life due to post treatment (7-8 months) symptoms! Did not sign up for this!!!! Happy for those who made it through unscathed. Many have not.

Katie · « **Reply #331 on:** September 20, 2015, 11:35:07 pm »

Quote from: CHepCFree on September 20, 2015, 10:25:26 pm

Please pray for all of us who are now dealing with decreased quality of life due to post treatment (7-8 months) symptoms! Did not sign up for this!!!! Happy for those who made it through unscathed. Many have not.

Hi CHep, Please check out the last few posts on the Side effects thread. http://forums.hepmag.com/index.php?topic=1653.new;topicseen#new

They make sense to me and slowly but surely I am feeling better and regaining my strength and energy. I am wishing you well and hope improvement finally comes to you. I thought you were doing better? So did you have like a relapse or were the improvements just short lived?

Take care and you're in my thoughts!

Katie

WholeFoods · « **Reply #332 on:** September 21, 2015, 12:27:05 pm »

With the information about Harvoni and high probability toward cardiac toxicity, I would not be at all surprised if some of us early treaters end up with some form of heart problems at some point in the future. To me, it very much feels as though my heart function has been degraded since taking Harvoni. Within weeks of my post-treatment, I was examined for heart problems; I had a chest x-ray, EKG and cardiac enzyme test for heart cell death... all came back negative for any problems. In my small bit of research on cardiac toxicity caused by medications, I see that often the damage isn't seen for months. I don't know if that means while a patient is on the medication or what, but I do know that several Harvoni trial participants continue to report low energy. It likely goes without saying that they are not at liberty to directly discuss any adverse affects they may have suffered while in the trial and after.

If I had it to do over again, would I do the same? Probably. It takes years of a drug being on the market before many adverse affects are made public. I seriously felt that I didn't have years to wait and find out. Even though I was stage 2 grade 1 in 2011 when my gall bladder was removed, I went downhill after that surgery and felt the virus was on the move. If another biopsy had been done, I feel positive it would have been at least stage 2 grade (whatever is the highest,) if not stage 3. There's not much chance I would have felt like continuing to work the way things were going. I get run down pretty easy these days, but with a lot of rest, I bounce back. I'm not in as much pain as I was before treatment and to me that is HUGE because I was getting really very depressed with all the pain. It's depressing being so fatigued all the time too, but not to the degree that the chronic pain was causing. That said, this will be my first winter without hepc, so will see how much, if any, pain comes with cold, wet weather.

I think having hopes of a "new life" after hepc then ending up with very little stamina is in itself depressing. I want to try and treat that let down with a kind of grieving process and just let that hope die a natural process. After that, it will be about trying to find my 'new normal' and go from there. In the meantime, I'm going to live like I probably have heart disease, which is the same way I've been living the last 15 years with hepc, low sodium, low fat, moderate exercise, fiber, etc., etc.

Be kind to yourselves.

Cally Balmoral · « **Reply #333 on:** September 21, 2015, 12:42:26 pm »

Yes, I also am continuing to have fatigue, but I am just thinking it has to do with all my other problems. I have to have a toe amputated this week, from the after affects of the cryoglobulinemia (a side affect of the hep c). Just trying to stay positive.

Mugwump · « **Reply #334 on:** September 21, 2015, 12:46:47 pm »

Quote from: WholeFoods on September 21, 2015, 12:27:05 pm

With the information about Harvoni and high probability toward cardiac toxicity, I would not be at all surprised if some of us early treaters end up with some form of heart problems at some point in the future. To me, it very much feels as though my heart function has been degraded since taking Harvoni. Within weeks of my post-treatment, I was examined for heart problems; I had a chest x-ray, EKG and cardiac enzyme test for heart cell death... all came back negative for any problems.

Somehow the logic of thinking that Harvoni is the cause of possible post treatment heart problems escapes me. Especially the mention of "toxic" effects. What happens when your liver exchanges dead cells that have been killed off by any toxicity or virus is an increase in renal pressure and secondary toxicity from dead cells in the blood stream. These toxins and their "side effects" are all well know.

What the "side effects" of dead liver cells being flushed from the system are is well documented and one of those is changes in blood chemistry that effects the respiratory system. So yes there is strain put on the heart, liver, kidneys, brain, nervous system by the discharge of dead liver cells.

I know that my system in general was much worse off before Harvoni and I was on the road to liver failure. The stress that removing the dead liver cells from my system is something which I will just have to live with because if I did not stop the damage being done to my liver by HCV I am sure my heart and kidneys would be in even worse condition than they are right now!

Please stop the unscientific, ill informed scare mongering about this treatment, it is a life saving drug and I am sure there will be some who perhaps were too far along in the progression of cirrhosis and will experience early onset of heart, kidney and other serious effects. Perhaps I am one of them, but to scare others with words like Harvoni and heart toxins is just plain irresponsible scare mongering!

WholeFoods · « **Reply #335 on:** September 21, 2015, 12:53:43 pm »

My intent was not scare mongering, sorry if it came across that way. I'm just sharing my experiences. The link between Harvoni and heart issues is well documented and very public. I'm not here to engage in battle with anyone.

mario555 · « **Reply #336 on:** September 21, 2015, 03:13:02 pm »

Just my little grain of salt on the issue of toxicity. I did 24 weeks and I had a very hard time to complete the treatment. I've had continued side effects since (20 weeks post) and I am definitely not back to my full stamina BUT, I'll be there to see them! Having to redo the whole thing again, I would not hesitate. I was dying a shitty slow death and now, I'll be there to bitch about my sides for (hopefully) a long time! Nobody told us the treatment was a walk in the park. Gilead only said it would cure hep c with easier sides and better outcomes than the previous treatments offered.
I do not doubt that in 10 years they'll find Harvoni was archaic (same as Inf-riba) but, once again I'll be there to see it!

KimInTheForest · « **Reply #337 on:** September 21, 2015, 03:26:16 pm »

Quote from: Mugwump on September 21, 2015, 12:46:47 pm

Please stop the unscientific, ill informed scare mongering about this treatment, it is a life saving drug and I am sure there will be some who perhaps were too far along in the progression of cirrhosis and will experience early onset of heart, kidney and other serious effects. Perhaps I am one of them, but to scare others with words like Harvoni and heart toxins is just plain irresponsible scare mongering!

These forums are supposed to be a safe space where ALL people can feel comfortable expressing their views and theories about what may be going in in their bodies during and post-treatment. The theory put forward by Whole Foods about Harvoni *possibly* causing permanent heart damage in some people was well worded, rational, made sense to me as I read it, and is something I myself have wondered about. Harvoni absolutely does affect the heart during treatment. Many if not most of us experienced some episodes during treatment of palpitations, arrhythmia, and violent pounding of heart against chest wall while lying in bed at night. Also, the many people experiencing prolonged and otherwise inexplicable fatigue post-Harvoni could indeed be explained in part by reduced heart function. So it is not an unreasonable theory and was not presented in any sort of an unreasonable, fear-mongering or hysterical way. And there is indeed a great deal we still do no know about the long-term effects of any of these new drugs that have only been on the market a year or 2.

Your response on the the other hand, in which you try to censor this person and his/her views - and with great venom and anger, is totally inappropriate here.

kim

Mugwump · « **Reply #338 on:** September 21, 2015, 03:28:13 pm »

Quote from: WholeFoods on September 21, 2015, 12:53:43 pm

My intent was not scare mongering, sorry if it came across that way. I'm just sharing my experiences. The link between Harvoni and heart issues is well documented and very public. I'm not here to engage in battle with anyone.

No war intended. I definitely have experienced some changes in my stamina and get up and go after this treatment. I had a double whammy with a bad cold virus post treatment and the flu during the last 6 weeks of treatment. So how much damage was done by problems other than my liver healing after treatment is an unknown factor.

HOWEVER I am not going to categorically state that Harvoni treatment caused me to have changes in respiratory functions.

What I was saying is that the toxicity cased by natural changes in liver functions as the cells are exchanged during treatment is the real reason why there are changes happening. I think it is irresponsible to imply that Harvoni treatment by itself is toxic to the heart.

The documented problem with symptomatic bradycardia (a dangerous slowing of heart rhythm ) when Harvoni is administered with the drug amiodarone is the only known dangerous effect, not that Harvoni treatment itself is toxic and causes changes to heart functions!

That is what is documented, certainly not that the Harvoni treatment is toxic to the heart and can cause heart cell death.

Regards
Eric

KimInTheForest · « **Reply #339 on:** September 21, 2015, 03:32:03 pm »

Quote from: WholeFoods on September 21, 2015, 12:53:43 pm

My intent was not scare mongering, sorry if it came across that way. I'm just sharing my experiences. The link between Harvoni and heart issues is well documented and very public. I'm not here to engage in battle with anyone.

I for one am GLAD you posted your theory, Whole Foods. It did not remotely come off as scare-mongering It helped me clarify some concerns I have had about Harvoni. So I hope you will feel free to continue posting your experiences and your theories about what may be happening in your body. The veil of silence around Harvoni-criticism that some members here keep trying to impose helps no one and certainly does not help the free exchange of ideas and the learning that can arise from that.

best,
kim

dragonslayer · « **Reply #340 on:** September 21, 2015, 06:55:34 pm »

Quote from: KimInTheForest on September 21, 2015, 03:32:03 pm

I for one am GLAD you posted your theory, Whole Foods. It did not remotely come off as scare-mongering It helped me clarify some concerns I have had about Harvoni. So I hope you will feel free to continue posting your experiences and your theories about what may be happening in your body. The veil of silence around Harvoni-criticism that some members here keep trying to impose helps no one and certainly does not help the free exchange of ideas and the learning that can arise from that.

best,
kim

You dont consider this a bit of an overstatement?

"With the information about Harvoni and high probability toward cardiac toxicity,"

KimInTheForest · « **Reply #341 on:** September 21, 2015, 07:25:06 pm »

Quote from: dragonslayer on September 21, 2015, 06:55:34 pm

You dont consider this a bit of an overstatement?

"With the information about Harvoni and high probability toward cardiac toxicity,"

It doesn't strike me as overstatement, Paul - at least nothing warranting the kind of censorship Mugwump tried to impose. But then that's partly because I believe the statement has merit, while you and Mugwump apparently don't. So the personal views/opinions/theories each of us holds colours our interpretation of other people's views/opinions/theories.

Mugwump has been offering his own theory about why some people are having a long slow recovery post-tx (re: the rate of cellular exchange/replacement of dead liver cells). His theory is no more or less valid or 'scientifically proven' than Whole Foods' theory about Harvoni-induced heart issues possibly being the basis for some people's post-tx recovery problems. Both theories and many more should be able to coexist here without anyone calling for the censorship of one of them. It's puts a chill on the forums and makes newer or less confident members afraid to post their own experiences and theories. It's a form of bullying.

kim

dragonslayer · « **Reply #342 on:** September 21, 2015, 07:28:47 pm »

Kim, is there ANY credible evidence of cardiac toxicity with Harvoni aside from its negative association with the drug Amiodarone?

By the way, the only way to differentiate between 'theories' and hair-brained ideas, is to see how well they stand up to scrutiny. If people arent supposed to question 'theories', no matter how whacked they sound, then to me, the forum loses a lot of its meaning. .It should be more than just a place for people to vent ideas along with broad untested generalizations. It becomes a caldron of misinformation in that case rather than a valuable resource. .I dont have to tell you that there are some Very strange ideas floating around out there.. Theyre not all equally valid.. Just because somebody has a 'feeling' that A = B doesnt make it so. We should be able to question such ideas without being called a bully.. To not be able to do so is, in itself, a form of bullying!

KimInTheForest · « **Reply #343 on:** September 21, 2015, 07:38:27 pm »

Quote from: dragonslayer on September 21, 2015, 07:28:47 pm

Kim, is there ANY credible evidence of cardiac toxicity with Harvoni aside from its negative association with the drug Amiodarone?

And the cardiac irregularities so many of us here experienced and have posted about while on Harvoni? Yes, I understand you can't consider that scientific. But your refusal to think outside the box is really more narrow-minded than scientific. All the greatest minds in science have acknowledged that one has to be open to everything, think beyond the known. Einstein himself said "Imagination is more important than knowledge."

I don't know. I could go online and search for data for you, Paul. But unlike you, I don't feel a need to prove anything here. I am not the one who has an issue with the statement by Whole Foods. So I will use my time and creative energies in more productive ways. I am just glad my own heart settled back to its normal healthy stable rhythm post-Harvoni.

best,
kim

dragonslayer · « **Reply #344 on:** September 21, 2015, 07:44:05 pm »

Kim, read the second paragraph i appended to my post above your last entry... I think that if somebody makes the statement that there is a 'high probability toward cardiac toxicity' with Harvoni, that its needs to be challenged. I believe people should be discouraged from making groundless claims such as this, where there is virtually no evidence out there to support it.. At least, preface the statement with, 'My own personal feeling is ...', or some such disclaimer.. To state it as fact that there is a High Probability of anything where there is no evidence to support it is misleading to say the least.

hepcme · « **Reply #345 on:** September 21, 2015, 07:46:21 pm »

AMEN KIM !!! yes so glad my heart is not keeping me awake and wondering if this was the last night of all nights....all is back to reg.heart rate and rthymn

WholeFoods · « **Reply #346 on:** September 21, 2015, 10:01:46 pm »

http://www.ema.europa.eu/docs/en_GB/document_library/Other/2014/04/WC500164418.pdf

This publication makes mention of cardio toxicity in lab animals when administered the drug at high doses. My hypothesis lies in the theory that not everybody's system clears drugs in the same way. Some people, myself included, must take super small doses to get the job done or suffer the effects of overdose. Therefore, making it probable, in my theory, for these people to suffer cardio toxic reactions from Harvoni.

There is another drug trial publication floating around that mentions reports of cardiac situations during trials. I have not been able to locate that document, but I think I know someone who can. They probably don't post anymore due to reactions of some posters here.

At any rate, I was sure this information about cardiac involvement and more had already been posted on this site and discussed at length or I would have included the study link in my earlier post. This information came to light just after the first of the year and scared a lot of us on treatment, but most of us are simply determined to kill the virus despite it all.

dragonslayer · « **Reply #347 on:** September 21, 2015, 10:13:22 pm »

Hi Whole... I really have no problem with your hypothesis as long as you phrase it as such.. But when you say there is a High probability that the drug has Cardiac Toxicity, well, the fact is thats just misleading.. Im sure you will agree. There may be a CHANCE that it is accompanied by cardiac toxicity, but a chance and a High Probability are two horses of a very different color.

WholeFoods · « **Reply #348 on:** September 21, 2015, 10:20:11 pm »

Quote from: KimInTheForest on September 21, 2015, 03:32:03 pm

I for one am GLAD you posted your theory, Whole Foods. It did not remotely come off as scare-mongering It helped me clarify some concerns I have had about Harvoni. So I hope you will feel free to continue posting your experiences and your theories about what may be happening in your body. The veil of silence around Harvoni-criticism that some members here keep trying to impose helps no one and certainly does not help the free exchange of ideas and the learning that can arise from that.

best,
kim

Kim,
Thank you dear! Bless you for getting in the middle of this. One of the reasons I started posting here is due to the seeming lack of censorship that appears to be happening on other forums. I understand both sides of the issue. None of us here are in the best of health.

WholeFoods · « **Reply #349 on:** September 21, 2015, 10:27:25 pm »

Quote from: dragonslayer on September 21, 2015, 10:13:22 pm

Hi Whole... I really have no problem with your hypothesis as long as you phrase it as such.. But when you say there is a High probability that the drug has Cardiac Toxicity, well, the fact is thats just misleading.. Im sure you will agree. There may be a CHANCE that it is accompanied by cardiac toxicity, but a chance and a High Probability are two horses of a very different color.

again, I am not here to do battle. I provided a link to my point of reference, which you obviously aren't going to read because you are trying to start a war here. Please go find something better to do with your time.

dragonslayer · « **Reply #350 on:** September 21, 2015, 10:31:37 pm »

Whoa Whole.. Really? I did read the study, and if you can find something in there which to you spells High Probability of cardiac toxicity in people, please, post it.

Whole, ive been on this forum a lot longer than you have, and have helped many people along the way. Im not here to do battle either... I never have been and never did.. But you have to realize that a lot of people read these boards and make treatment decisions based to a degree on what they read.. Disseminating unsubstantiated information does more harm than good. Again, statements of personal belief need to be phrased in such a way that people realize its not the prevailing belief in the field, ie, phrased as personal opinion and not fact.

Mugwump · « **Reply #351 on:** September 21, 2015, 11:37:56 pm »

Quote from: WholeFoods on September 21, 2015, 10:01:46 pm

http://www.ema.europa.eu/docs/en_GB/document_library/Other/2014/04/WC500164418.pdf

This publication makes mention of cardio toxicity in lab animals when administered the drug at high doses. My hypothesis lies in the theory that not everybody's system clears drugs in the same way. Some people, myself included, must take super small doses to get the job done or suffer the effects of overdose. Therefore, making it probable, in my theory, for these people to suffer cardio toxic reactions from Harvoni.

There is another drug trial publication floating around that mentions reports of cardiac situations during trials. I have not been able to locate that document, but I think I know someone who can. They probably don't post anymore due to reactions of some posters here.

At any rate, I was sure this information about cardiac involvement and more had already been posted on this site and discussed at length or I would have included the study link in my earlier post. This information came to light just after the first of the year and scared a lot of us on treatment, but most of us are simply determined to kill the virus despite it all.

I fully understand your concerns and am well aware of how Harvoni effects CV functions. However the prescribing information from Gilead covers the fact that Harvoni cannot be administered to those who have compromised renal functions and there is no prescribing guidelines for the administration of the drug under those circumstances.

If you cannot excrete the drug normally then yes Harvoni can be problematic, but this is true of many medications.

Here is the whole essence of the problem, if renal functions are impaired then treatment by Harvoni is a clinical decision for a specialist to make.

As Lucinda has put it "if your pee is not to dark then don't sweat it". I add to that if you go pee allot while you are on Harvoni and it has some yellow to it all the time then you are getting along with the drug just fine.

Anything that can get in the way of clearing the drug and the millions and millions of dead virus particles it creates in your system is a very bad thing IMO.

I know that the flu during the last month and a half of treatment really messed things up for me, my urine darkened and my heart started to flutter more. It took me well over 3 weeks to shake the flu and it took my wife over 2 weeks.

So I just hope that the damage done during the last part of my treatment did not mess up my CV too much. I go for a full physical in November and I am going to do some serious river fishing and push my limits in the next few weeks so that will tell the tale.

If my heart goes KABOOM in the process then I will worry about it. But I categorically refuse to worry about the damage done by Harvoni to my system. The damage done by years of smoking, a fat lifestyle and most of all the God forsaken hell hound that is HCV is most likely what will cause me to have a cardio incident, if I do have one.

I am one month cigarette free and a grouch so please forgive my mean and grumpy manors. I was never cut out for politics or the army to say the least... someone would shoot me I am sure if I ever did engage in politics successfully

Cheers
Eric

CHepCFree · « **Reply #352 on:** October 02, 2015, 01:49:01 pm »

I have received an updated listing of side effects people have reported to the FDA. (Email removed)

hepcme · « **Reply #353 on:** October 04, 2015, 12:22:20 am »

what does it matter -we were all walking dead anyway you look at it....Harvoni just postponed it and let us enjoy the grandkids longer...that is about all that is left to enjoy anyway , except the beauty of God's creation and the air we breathe (and fukashima ruined that one too)... so BREATHE deep ya'll....smell the roses

hepcme · « **Reply #354 on:** October 04, 2015, 12:25:56 am »

exercise, drink 100% grape juice for the heart, apple cider vinegar to keep the pipes clear...stay away from meat, eat your greens and eat the prunes.....
that is no poo poo

beto · « **Reply #355 on:** October 06, 2015, 11:16:06 pm »

Hi all,

I am chiming in a bit late. But since I finished Harvoni last Saturday after 12 weeks I thought I would add my 2 cents.

My sides on Harvoni were not bad and concentrated in the 1st month. Mostly dizziness and some odd subjective things. Post, I must say, I have been a bit off. Feeling like I am starting to come down with something, but it not turning into a cold or flu. Achy chilly moments that pass. Cognitive (brain fog like feelings) that do not last and joints aching at night but not when I am active.

I have been reading a lot of posts for about 4 months now and it is not uncommon to have some after effects. But, again everyone is a little different. A few have said that they crashed after treatment (most of those also had ribaviron) but there were threads where folks on only harvoni took some time to come around. There have been cirrhotics that felt fine during and after treatment. Truly a mixed bag.

One thing to remember is the fact that Harvoni is a powerful med and spending 12 to 24 weeks on a drug that has literally changed your body over night may well leave one with a sort of...well, withdrawal. If one has been infected with C for 10 to 50 years, suddenly not having the virus itself, in your system, is a huge change as well.

I guess what I'n saying is perhaps we should be patient with the wisdom of our bodies as is adjusts to a new landscape, or rather as it reacquaints. There is also a strong emotional and spiritual side to all of this. We have been living with it for so long and it keeps us penned in to a sort of 'house arrest.' Even folks that have been mostly asymptomatic...they know they have it...it dampens the spirit for many years with not a lot of hope of cure. Suddenly there is a fantastic new chance at life and the fears that come with it.

beto · « **Reply #356 on:** October 06, 2015, 11:22:46 pm »

Oh, yea! There is the lowered blood glucose that many have toiled with as well as drops in iron. Again mostly with ribo. But, I have stated before in other posts...my ferratin dropped about 170 points in 4 weeks. This was good in my case because I tended to run high in that department as many liver patients do.

BTW- Congrats to y'all...some great stories above.

slats1056 · « **Reply #357 on:** October 07, 2015, 02:21:50 pm »

CHepCFree, got the copy of the report , Thanx again. Never a bad thing to have to much info. I am assuming it picks up where the old one leaves off. I for one believe that it does indeed matter. With info. like this I passed on interferon comb treatment because I did not believe I would be able support a family of five and work full time while doing it. I know many did and appreciate their sacrifices that help us today. Sorry You are still having problems , apparently so are other post Tx.
Here is hoping all improve and return to a normal life quickly.

hepcme · « **Reply #358 on:** October 08, 2015, 01:42:23 pm »

8 mo Post TX now and moving right along to the one year mark....I always said it would take about a year before anything was solid...and here I am approaching and fast...SX symptoms come and go....I don't believe they are age related...I know age related and what to expect and account for but seems...in ...what was before and after a 2 month Tx of Harvoni would be obviously clear that I had none and now do have slight fluctuating heart palps, labored breathing, slow digestion constipation and fatigue...30 yrs of growing virus that was attacking all areas of malnutrition will need to learn to heal. My liver is stage 1-2 now from a 3-4. all my levels are normal, YEAH, thyroid is slightly high, and sodium...eyesight is lazy but better...digestion is the worst of all right now...seems to come and go ...have to really take care with food choices and fiber fiber fiber..still getting bloating..this too shall pass, I hope

KimInTheForest · « **Reply #359 on:** October 08, 2015, 02:08:27 pm »

Quote from: hepcme on October 08, 2015, 01:42:23 pm

8 mo Post TX now and moving right along to the one year mark....I always said it would take about a year before anything was solid...and here I am approaching and fast...SX symptoms come and go....I don't believe they are age related...I know age related and what to expect and account for but seems...in ...what was before and after a 2 month Tx of Harvoni would be obviously clear that I had none and now do have slight fluctuating heart palps, labored breathing, slow digestion constipation and fatigue...30 yrs of growing virus that was attacking all areas of malnutrition will need to learn to heal. My liver is stage 1-2 now from a 3-4. all my levels are normal, YEAH, thyroid is slightly high, and sodium...eyesight is lazy but better...digestion is the worst of all right now...seems to come and go ...have to really take care with food choices and fiber fiber fiber..still getting bloating..this too shall pass, I hope

Thanks for the update, HepCme.

That's great that your fibrosis has dropped from F3/F4 to F1/F2 after just 8 months post-treatment! Gives us all hope. And I agree about it taking the time it takes for the body to normalize (or recalibrate itself or whatever) after decades of living and working with, or against, the activity of the Hepatitis C virus which is suddenly no longer there.

best,
kim

beto · « **Reply #360 on:** October 08, 2015, 03:13:55 pm »

Hepcme, Kim

Great news hepcme!!! I had started a post last week that has mostly gone unseen. I had posted a link to a study that found 53% of post treatment cirrhotics reducing their numbers to lower grades. But the best news to come out of it was a reply post from a gal in new york whose hubby was F4 with a score of .25 who went down to .08 after SVR. So that would him him in the F2 bracket.

KimInTheForest · « **Reply #361 on:** October 08, 2015, 03:46:30 pm »

Quote from: beto on October 08, 2015, 03:13:55 pm

Great news hepcme!!! I had started a post last week that has mostly gone unseen. I had posted a link to a study that found 53% of post treatment cirrhotics reducing their numbers to lower grades. But the best news to come out of it was a reply post from a gal in new york whose hubby was F4 with a score of .25 who went down to .08 after SVR. So that would him him in the F2 bracket.

Yes, that is a very impressive drop, beto. What I still can't get over is how quickly the liver can repair itself in many of these cases. I thought it would take years to see a reduction in fibrosis. But it seems to be more like months once Hep C is gone.

best to all,
kim

beto · « **Reply #362 on:** October 08, 2015, 04:41:16 pm »

Well there are still those that deny it...at least with respect to scar tissue. But, if the liver is functioning at all, there has to be healthy cells...and if so, then regeneration should happen. I have heard also that there is a school of thought that believes fibrotic tissue can soften and break down. Whatever the case, it appears that reversal is happening.

Surgeons might be looking at some business with the legions of boomers facing transplants. Not enough livers, so heal on hepatocytes...

hepboy1 · « **Reply #363 on:** October 08, 2015, 07:34:00 pm »

r your symptoms now gone? how long did ti take if yes ? thanks be blessed

Katie · « **Reply #364 on:** October 12, 2015, 03:33:43 am »

For all of you with joint issues post treatment, or chronic like me, you may want to consider this, even though you may not like it.

http://www.dailymail.co.uk/health/article-100577/A-daily-dose-cod-liver-oil-helps-cure-arthritis.html

I have friends that swear by it and one gal who has Rheumatoid Arthritis that took it for 2 years and is pretty much free of pain, many joints returned to normal and she takes no other medication for it. I am starting this week and will let you know!

Hope your week is a good one.

Katie

hepboy1 · « **Reply #365 on:** October 12, 2015, 11:44:39 am »

just be CARFUL WHERE THE SCORCE OF COD LIVER IS COMMING FROM http://enenews.com/skyrocketing-animal-deaths-west-coast-extreme-mortality-event-dying-high-numbers-great-numbers-mysterious-going-definitive-conclusion-radiation-videos?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ENENews+%28Energy+News%29

hope2bcured · « **Reply #366 on:** October 12, 2015, 12:21:46 pm »

Quote from: tucsondee on February 08, 2015, 03:28:11 pm

I finished my 12 weeks of Harvoni 2 weeks ago and I am not feeling good. Very fatigued can take 2 naps a day. Today I woke up with a sore throat and my whole body ached. Started taking 2000 units of vit. C every 4 hours. I will do this for 2 days. It usually kicks out the sore throat. As far as not feeling good, I think it is because the Harvoni ups our Immune system so much that once off the drug our body just lets down and now needs to recover. Thinking it may take a few months to recover. If anyone has been off longer than me and still not feeling good I would like to hear your story.

Hi it has been several months since you wrote the above post. Are you feeling any better now? Are you still clear of the HCV? I am 4
weeks post Harvoni (treatment naive) geno 1a, Supposedly Fibrosis 1/2 I would like a Fibroscan to confirm. I feel horrible. I had a test at 8 weeks into Harvoni (took it for 12 weeks) that test came back <15 my doctor claims that was negative, but, thats not what I found in my research.

I feel horrible, I had some energy my first few weeks into Harvoni then, had heart issues and dangerously high blood pressure spikes, (they seem to have simmered down) had to wear a heart monitor for 2 weeks am waiting to see cardiologist again.

I have been much sicker after Harvoni than before, I am so fatigued, I basically am house bound and so much joint pain its awful. I am curious how many others feel this way and if there is hope to feel better. Then, I get paranoid and think I feel this way because I must not have cleared the virus. I go tomorrow for a 4 week post PCR I am praying to God its gone, I dont know what I will do if its back, that would be extremely devastating to me.

Katie · « **Reply #367 on:** October 12, 2015, 03:27:17 pm »

Hi Hope2Be,

On your report it should specifically state Detected or Undetected as the<15 is the sesitivity of your test. My EOT came back Detected <12 and there have been others detected but very low viral count at EOT that did clear the virus. The thing to watch is if the count rises, indicating replication.

I felt GREAT during treatment and horrible after, along with quite a few others. Little by little I am improving but far from where I was. It is disappointing but I know my liver is restoring itself and maybe that is why I am SO fatigued. I sleep 8-12 hours a night and if it is just 8 it is because I have forced myself to get up due to appointments. At least I am sleeping as before treatment I suffered from insomnia for years and was a walking zombie most days. After testing me for everything, they found I am in perfect health with no explanation for how I feel so I am trying to be patient.

I suffer from joint issues but it is due to damage inflicted from physical work and accidents so it isn't from treatment. It is difficult to figure if it has worsened since treatment so I don't place blame on it for that.

As for your fibrosis, if it is on the low end scale a fibroscan is not accurate, from what I have read. Maybe have an ultrasound first as it will check the uniformity of your liver and the size and can be an indicator for liver health. That is all I have ever had since I was diagnosed.

I am optimistic that your SVR4 will come back undetected so rest as you need to, drink plenty of water and try not to stress out. You are doing everything right seeing the cardiologist for your issues.

Keep us posted as we are like family here and worry about each other.

Katie

Katie · « **Reply #368 on:** October 12, 2015, 07:37:11 pm »

Since so many are complaining of joint issues and because I am starting a regiment on the cod liver oil, I have been doing some research I thought I would share with you. This is from The Lost Arthritis Cure and is the therapy my girlfriend undertook for Rheumatoid Arthritis I mentioned earlier.

It is interesting as it goes through what foods we eat that can irritate our joints and lead to problems down the road. I have been doing EVERYTHING wrong, as far as my joint health, except for eating our wonderful seafood.

So, even if you don't have arthritis but are experiencing new joint issues, you might want to look at the diet and see if there is something you should modify. It doesn't have to be a life long thing, but if changing when you have your beverages and eliminating highly acidic beverages for awhile will help, I am all for it. For anyone with health issues, please check with your doctor before starting or stopping anything prescribed or a new regiment.

If you do this and have either positive or negative results or none at all, please let me know. It's the biologist in me.

http://thenutritionrenegade.com/wp-content/uploads/2012/12/The-Lost-Arthritis-Cure.pdf

Katie

KimInTheForest · « **Reply #369 on:** October 12, 2015, 08:42:13 pm »

That is a very interesting link, Katie, to the book The Lost Arthritis Cure. Thanks for posting it. Have just spent a minute or 2 skimming it and wow! He says milk is one of the best foods you can consume (p. 27)! Goes against all current diet hype on the subject of dairy. But I have always been a big dairy consumer and dairy lover. It has been a very beneficial food for me my entire life. (My vegan friends will crucify me if they read this and recognize me.) And how interesting that he says that skim milk milk (but not whole milk) has FATTENING powers if consumed with a meal! (p. 28)

Anyway - it's a real gem Katie. Thanks.

kim

Leary69 · « **Reply #370 on:** October 12, 2015, 11:34:55 pm »

Hi All! -- just began posting today, and absolutely appreciate responses/insights. For some unknown reason, I "thought" I would finish treatment (done 18 days ago)...& by now, be feeling great. ((HELLO))....... wrong again! Definitely do feel like I no longer belong in a straight jacket, i.e. cognitive functions tremendously improved......
am still looking for that Mack-truck that ran over me about 4 days after the last pill tho' ~(sigh). With end of tx. SVR, I now acknowledge that recovery may be as varied as all the individuals experiencing it ~ and think it's grand that we now appear to know as much, maybe more, than Gilead; hopefully they will take our experiences as updated info. for those to still seeking to slay the relentless dragon. There do appear to be a number of side-effects from heart palpitations, joint pains and digestive disorders to unexpected Rx. drug interactions and respiratory complications (to mention a few). HOPE from those we follow suggests that often, Good Things Take Time ~ so it appears that for some, recovery will be a process, not an event. Without the nasty virus, there is a light at the end of the tunnel!! Will keep working on that
"Attitude of Gratitude" ...

hepcme · « **Reply #371 on:** October 13, 2015, 01:30:31 am »

I am hanging onto the hope it is a process ..9 mo post Tx now, and always thought ...a year would tell how I am progressing in the rejeuvenation area...seems like the Doctors are still so naive about any complaints and will tell me .."Well, that isn't from the medicine, that medicine was out of your system in 4 days...." Did I say it was from the medicine

WAKE UP I have had HCV...and for 30 years ...YA THINK

? she ordered , colonoscopoy , which I did not do for $250.00 and a CT for another $200.00 ... all my bloodwork came back in range...halleleujah sp? never can get that right....
My slow digestion is back again...had it a month ago for two weeks and it was terrible, bloat after I ate anything...looked like I was pregnant, so uncomfortable and gas and pain and hungry all the time but feel so full !!!!???
never felt hungry and full at the same time...ever !! so I eat small meals and still bloat...it went away after I bought some aloe vera jc...helped and now it is back again...the Jc is helping, plus prunes, flaxseed on cereal and now I have added exercise to my routine...I walked 2 miles yest...helped...

hepcme · « **Reply #372 on:** October 13, 2015, 01:34:14 am »

I see I already [posted my complain of sides again....sorry, this getting old isn't for sissies , as they say....

hepcme · « **Reply #373 on:** October 13, 2015, 01:39:52 am »

Quote from: SIXFOOTFOUR on July 28, 2015, 03:36:43 pm

i'm 9 weeks EOT. From 3 weeks into tx and at EOT I was undetected and over all other than light headaches during Tx it was all very easy.

But since about 1 week after completing Tx , Ive been dealing with GI problems (nausea and bowel) as well as a overall weakness and low grade fever. This has been going on for about 6 weeks now off and on. been to MD 2 times and nothing detected in blood work or stool samples. So both my internist and GI docs say it may be my body getting used to a normal liver functions...?

Anyone else have anything like this?

6'4 wow cool , At least your doctor has some commmon sense and is giving the healing process the possibility that is wonderful news and confirmation from a gastro who SHOULD KNOW just by his profession of study !!!! Yes I have slow digestion and bloating comes and goes...waiting just for it to go go go go...as most sides have...poor body is really working probably in shock as we all are...ADJUSTING

Katie · « **Reply #374 on:** October 13, 2015, 01:44:07 am »

hepcme: Did you check out the site I posted. Some suggestions in it may help your digestive issues. Sorry you still are suffering. I am improving but it is a SLOW process too.

Take care my friend,

Katie

http://thenutritionrenegade.com/wp-content/uploads/2012/12/The-Lost-Arthritis-Cure.pdf

Katie · « **Reply #375 on:** October 13, 2015, 01:44:34 am »

Double post. Hit the wrong button! It must be catching. LOL

hepcme · « **Reply #376 on:** October 13, 2015, 03:17:12 pm »

thanks Katie ...some great info on those pages will read more tonight ..gotta go to work...I just was in Natural Grocers and they had Cod Liver Oil on shelf front display...big display..didn't have time to read labels but I have not had fish or meat ( except some chicken) for many years due to the Fukashima and the cow and meat diseases that they are producing these days ...so scarey and i love fish...have not had it since 2008...mercury was too much of an issue when i found out about HCV ...then the radiation scare came on scene ahhhhhhh this world...thanks great catchin up'...
anne

Katie · « **Reply #377 on:** October 13, 2015, 04:15:09 pm »

Unfortunately we have and are still polluting our world and Fukushima is just one thing. I would be concerned with bottom fish that hang out in one area their entire life and filter stuff but am not concerned with fish that move around in different areas, such as salmon and have relatively short lives. I love the rockfish, however some of them live over 100 years, so toxins can definitely build up in their tissues.

I thought the discussion on water was interesting as all of us have been drinking probably more than we normally do, especially during treatment. Water is important, but I never paid attention to when I was drinking it and it makes sense. It could possibly have something to do with many post treatment folks complaining about joint issues and digestive problems. Who knows, but is an easy thing to try and see if it helps.

Katie

SIXFOOTFOUR · « **Reply #378 on:** October 14, 2015, 11:41:38 am »

Quote from: hepcme on October 13, 2015, 01:39:52 am

Its been awhile since Ive been on the site but wandered over and saw my previous post so i thought id chime in...
Im 5 months post tx now, until about 3 weeks ago was still experiencing the above posted symptoms, GI stuff, low grade fever and overall tired, not quite right.

My GI after blood work and stool samples found nothing and starting about 2-3 weeks ago I started to improve , no cramping, fever gone and overall Gi including nausea going away, I was previously scheduled for a Colonoscopy last friday so I did it and all was negative. Now fpfor the past week Im feeling better than I have this year. Energy increasing, able to push a little more at gym. better appetite and little to no bowel/gi problems.

I talked a lot to my Internist and GI docs and although Ive been the worst that they have seen post tx (had almost nothing during tx) they both speculate as did i that it was my body getting used to a better functioning liver than Ive had for the past 43 years.

Ill be getting my 6 month blood test in 3 weeks and will post then.

Good luck to everyone in or completed tx, it does get better and is worth the fight!

Mike Conwell · « **Reply #379 on:** October 14, 2015, 03:32:47 pm »

I'm 6 months post treatment and have been sick since the end of meds. I am getting better now. I think!!! Seem to have spells when I think I'm getting better then crash. Told my wife and son I wait to hear the bad drug commercial on TV. Lol. Hopefully all of us will continue to get better. Today I feel great, tomorrow who knows. Good thing is I'm still no viral load, liver function is normal. Yay

hepcme · « **Reply #380 on:** October 14, 2015, 09:11:45 pm »

Quote from: Katie on October 13, 2015, 04:15:09 pm

Unfortunately we have and are still polluting our world and Fukushima is just one thing. I would be concerned with bottom fish that hang out in one area their entire life and filter stuff but am not concerned with fish that move around in different areas, such as salmon and have relatively short lives. I love the rockfish, however some of them live over 100 years, so toxins can definitely build up in their tissues.

I thought the discussion on water was interesting as all of us have been drinking probably more than we normally do, especially during treatment. Water is important, but I never paid attention to when I was drinking it and it makes sense. It could possibly have something to do with many post treatment folks complaining about joint issues and digestive problems. Who knows, but is an easy thing to try and see if it helps.

Katie

Oh ya know didn't think of that !!!! yes we drink alot of water ...I only drink spring water but who is to say that is spring water....now I am getting my water filled at a station that is coming right from well under stor and is reversed also osmosis or something like that...good thought...I have a pur filter pitcher and keep my refrigerator one updated also...all we can do is try...and thanks for the salmon tip...I have been adding some salmon for Omega 3 oils once in awhile...
cool Katie
anne

hepcme · « **Reply #381 on:** October 14, 2015, 09:15:02 pm »

Quote from: Mike Conwell on October 14, 2015, 03:32:47 pm

I'm 6 months post treatment and have been sick since the end of meds. I am getting better now. I think!!! Seem to have spells when I think I'm getting better then crash. Told my wife and son I wait to hear the bad drug commercial on TV. Lol. Hopefully all of us will continue to get better. Today I feel great, tomorrow who knows. Good thing is I'm still no viral load, liver function is normal. Yay

Amen Mike , we have today and if it just postponed the obvious, welllllll then we got to see and enjoy life without the dragon....and I must say...it is still ...GREAT !!! like you say , one day at a time....I worked three days now and I don't know what tomorrow will bring but I barely made it thru today...I usually only work 6days a month...this is a whole week....I will push, then rest for a week
take care
anne

Katie · « **Reply #382 on:** October 14, 2015, 09:51:36 pm »

Quote from: hepcme on October 14, 2015, 09:11:45 pm

Oh ya know didn't think of that !!!! yes we drink alot of water ...I only drink spring water but who is to say that is spring water....now I am getting my water filled at a station that is coming right from well under stor and is reversed also osmosis or something like that...good thought...I have a pur filter pitcher and keep my refrigerator one updated also...all we can do is try...and thanks for the salmon tip...I have been adding some salmon for Omega 3 oils once in awhile...
cool Katie
anne

I don't know if you read the section on water in that site. It was talking about the timing in relationship to eating and how it can disrupt your digestion. Just wanted to point that out in case you missed it.

Knowledge is power!

Katie

victoria48 · « **Reply #383 on:** October 15, 2015, 11:56:16 am »

Hello ALL: I have been feeling horrible now 4 months post the S+R treatment. Blood test came back this week negative. But feel fatigued, crappy and short fused. Anyone on this same treatment have the side effects? I have a very mild cirrhosis non-alcoholic from not getting hep c treatment in time. All liver test almost normal. No Hep C since after the first 30 days. I am in my 60's and God help me as I expected to feel better and be a nicer person after going through the worst journey of my life. I had posted during my journey and at times I was nearly out of my mind on S and R treatment. My heart goes out to others in this HEP C Journey and PLEASE if anyone on the same or in the same please share. Best to ALL..Victoria I do not drink or do other drugs scared to take an aspirin! HELP

victoria48 · « **Reply #384 on:** October 15, 2015, 12:05:23 pm »

Hello Again: I want to add that my bones have been in pain and my memory not as good but now thyroid ok had anemia due to treatment but guess ok now. Virus totally undetected and now 4 months post S+R. Thanks again Victoria

Katie · « **Reply #385 on:** October 15, 2015, 02:35:30 pm »

Hi Victoria, Sorry you are one of us who feel crappy when we should be joyful! If you scroll way up and read some of the comments you will see many are experiencing post treatment side effects which are very similar to yours. I finished end of February and still have fatigue and lack of motivation which restrict my daily activity much more than before or during treatment and as you, all blood work comes back perfect! Weird to feel this way and be so healthy, so, I figure my system is adjusting, cleaning up and repairing what decades of damage and toxins did to all of my bodily functions. I am slowly improving so have hope on getting back to my energetic self.

Good luck to you and Congratulations for clearing the virus. Try to be patient with yourself and rest as needed!

Katie

willie g · « **Reply #386 on:** October 15, 2015, 03:18:06 pm »

jillyn as we all the meds or med to eradicate hep c have to be some potent stuff going thru our systems during and after treatment,,, it will take time for you ,some quicker than others due to certain things, metabolism,meds you may have been on before and while on treatment,, some folks work out three times a week etc.and drink lots of fluids while sweating and so on. working out definitely clears the system faster, think of when your hung over and you force yourself to go to gym next day,, how afterwards you feel good because you sweated that darn poison out ,plus you feel good you did it. stay on the good course of how you treated yourself while on treatment and of course talk with your creator ,,,always listening and helping me, just some thoughts, it took me quite awhile to get back from my treatment ,, I was really beginning to wonder ''WHAT THE HELLS GOING ON?!'' I listened to a lot of MARVIN GAYE lol you ll be fine just hang in there,, one other thing I just found out from a friend on harvoni,,dr. says no NEXIUM, just passing it along. hey BUCKY! been awhile ''just Willie g'' GatorFalls

hepcme · « **Reply #387 on:** October 15, 2015, 11:56:35 pm »

Quote from: Katie on October 14, 2015, 09:51:36 pm

I don't know if you read the section on water in that site. It was talking about the timing in relationship to eating and how it can disrupt your digestion. Just wanted to point that out in case you missed it.

Knowledge is power!

Katie

WOW now there is a mouthful of watered information...!!!! got it...thanks Katie...gulp

willie g · « **Reply #388 on:** October 16, 2015, 12:38:09 am »

I just learned how to use those faces I guess a

means COOL ,,,,lol yes HEPCME right on! they say two heads are better than one (but.. for some reason TWO of my heads is a scary thought. he he) "just Willie g '' GatorFALLS

hepcme · « **Reply #389 on:** October 16, 2015, 10:21:25 pm »

I think the bloating is stopping again...maybe...today was a little better ...usually soon as I eat anything...looks like I am carrying twins...hope it is just another wave of healing...with someday- totally gone....
eyes have been bad though for two days....it is like the healing moves around to different organs....giving special attention- here a little there a little...

sugarfree · « **Reply #390 on:** October 27, 2015, 06:39:28 pm »

Congratulations Jill, I am in the exact same place as you, only I was scoped, tested and found to have a bacteria infection since taking meds. A few weeks of anti robotics and my stomach is better. But I am still fatigued. My Dr. told me to just keep trying your body is still healing/ fighting inside. We need time. Good luck.

hepboy1 · « **Reply #391 on:** October 27, 2015, 09:56:11 pm »

could be low magneasium even tho it checks out ok ive read somewhere and it makes you weak as all get when depleated its cheap enough worth the try

Katie · « **Reply #392 on:** October 28, 2015, 01:39:20 am »

As many of you are aware, I felt great throughout all but 10 days of treatment, in fact better than I had in years. After I stopped the miracle pills I spiraled down to a very low depth and felt much worse than before treatment.

Lots of tests and bloodwork all came back perfect with no explanation. Little by little things have gotten better but only about 50% and it is 8 months since I ended Harvoni! What I have been doing lately is literally forcing myself to push myself getting exercise and fresh air, even when I'd rather go back to bed. I have been working in my neglected garden beds, digging and pulling and planting ; moving rocks, all hard physical work and it is helping me. I have always believed in the more you do the more you can do so I am not going to stop.

Thought I'd share that with you and maybe it will help you to try some different things until you find what works for you. To not keep active only creates more problems, loss of muscle mass and increases fatigue and depression. Don't give up, know you aren't alone and things will improve. All of us have improved our chance for better health by getting rid of the virus and allowing our liver and immune system to do their job. We are going to be OK and thrive! I just know it.

Katie

beto · « **Reply #393 on:** October 30, 2015, 03:17:05 pm »

Ciao all,

I have been checking into this forum for some time now and post tx issues are nothing new. For those who have felt bad EOT, most of them report that they gradually got better and better and that includes folks that felt very bad after. You are all going to be OK. For some, it seems to be part of the process. Consider the fact that you carried a powerful virus around for years that was killed overnight. We are talking about a virus that copied itself a trillion times a day, that your immune system had to keep at bay 24/7. Peruse this forum some more and read about others that had rough EOT's, had to cope and then started to feel better and better. Good luck all and have patients. Picture the prize...

dragonslayer · « **Reply #394 on:** October 30, 2015, 05:00:10 pm »

Quote from: Katie on October 28, 2015, 01:39:20 am

As many of you are aware, I felt great throughout all but 10 days of treatment, in fact better than I had in years. After I stopped the miracle pills I spiraled down to a very low depth and felt much worse than before treatment.

Lots of tests and bloodwork all came back perfect with no explanation. Little by little things have gotten better but only about 50% and it is 8 months since I ended Harvoni! What I have been doing lately is literally forcing myself to push myself getting exercise and fresh air, even when I'd rather go back to bed. I have been working in my neglected garden beds, digging and pulling and planting ; moving rocks, all hard physical work and it is helping me. I have always believed in the more you do the more you can do so I am not going to stop.

Thought I'd share that with you and maybe it will help you to try some different things until you find what works for you. To not keep active only creates more problems, loss of muscle mass and increases fatigue and depression. Don't give up, know you aren't alone and things will improve. All of us have improved our chance for better health by getting rid of the virus and allowing our liver and immune system to do their job. We are going to be OK and thrive! I just know it.

Katie

Hi Katie,

So sorry to hear youre still having these post treatment problems... Youd think that these issues youre having would at least manifest themselves in some way on your subsequent blood work. And you know doctors; if they dont see it in the blood work, it doesnt exist!

As for me, since treatment, I feel a lot better than before treatment. .Having gotten rid of the virus can be thanked for that. But all is not perfect. I still struggle with insomnia and on those days I dont sleep more than a few hours, I feel miserable and out of sorts. Physically, most of the time, so long as I can sleep well, I feel really good... Way better than before. I work out every day in the gym and have for a decade. I cant blame the insomnia on the treatment at all, since Ive had it for a long time. But over all, no complaints.

Hoping, Katie, that these issues resolve soon, and you can get back to feeling as you did before all this started....

Katie · « **Reply #395 on:** October 30, 2015, 05:54:57 pm »

Dragonslayer!

Thanks Paul, Good hearing from you and please don't think I haven't benefited. Many issues I had are gone, it's just the fatigue and like I said, it is improving. SO much better than in March after I just got off treatment, so I am hopeful!

The only reason I keep bringing it up is so others know improvement will come even if it may be a slow process. I don't want anyone to give up.

Exercise really makes a difference for me, but it has to be out in the fresh air. I am almost wondering if I brought some of this on myself with all the remodel work I did with so much drywall dust as well as the laminate installation. That fine stuff is still showing up even though I clean and clean, swifter my walls and ceiling, so it could very well have something to do with it.

Whatever, I will work through it and be fine! I am fine! I am happy and looking forward to my next project and hope the weather cooperates!

Katie

WholeFoods · « **Reply #396 on:** November 08, 2015, 07:47:45 pm »

Got my 6 month post cbc back, everything was in normal range. Liver function hasn't changed since the first month, but in comparison over the course of treatment testing, there was a blip in everything at EOT. Potassium is now on the low end and protein on the high end (if I remember correctly) which seems indicative of kidneys? But creatinine and those other kidney functions were fine. I do have a small cyst and a small stone in my right kidney. I drink 40 oz water a day. I don't get swollen feet or hands, but... I still have fatigue and loss of stamina with twice a month gastro problems and back pain. Am looking into food intolerances. The VL should be in by the end of the week. I am happy with the results and won't stop looking for ways to try and feel better. Still checking in here to see how the rest of you are doing. Stay well ya'll!

hepcme · « **Reply #397 on:** November 08, 2015, 09:19:51 pm »

A whole lot of grumbling going on...that is so cool...at least it is honesty...I go to some forums and all they have to say is hurray...I am cured and really tight lipped..

I can join in on being happy to be cured for sure....but also want to address the post TX issues I have been having and if it weren't for you guys being honest with yourselves , I would drown myself in my tears by now...NO TEARS...I still have hope , thanks to yous : I did read an article on digestion and the effects HCV has had on it: ....http://www.hepatitiscentral.com/news/safe-ways-to-manage-digestive-symptoms-when-youre-living-with-hep-c/

they talked at one point on dyspepsia...wow that really turned on the light for me ...I have alot of symptoms with that one...
the digestion issue is back again and the bloating....gone for 10 days at my gradkids and daughters probably didn't help things ...I did Wendy's 4for$4 twice ...dahhh and had alot of other junk I have not eaten in years...thought I was really cured...NOT !!
So - now back to "REAL FOOD" yum tastes so so good ..cooked some asparagus with butter onion, pistashio's, garlic and pomegrante seeds saute and was totalllllly awesome

Drank some aloe vera jc and now going for a short walk...they say don't sit after a meal...I have been sitting for 2 days..depression is setting in also...I forced myself to go to pool...I did 3 laps and got out...I usually do 15...what is going on??? has to be the fukashima in the air lol

WholeFoods · « **Reply #398 on:** November 08, 2015, 09:59:12 pm »

Quote from: hepcme on November 08, 2015, 09:19:51 pm

A whole lot of grumbling going on...that is so cool...at least it is honesty...I go to some forums and all they have to say is hurray...I am cured and really tight lipped.. I can join in on being happy to be cured for sure....but also want to address the post TX issues I have been having and if it weren't for you guys being honest with yourselves , I would drown myself in my tears by now...NO TEARS...I still have hope , thanks to yous : I did read an article on digestion and the effects HCV has had on it: ....http://www.hepatitiscentral.com/news/safe-ways-to-manage-digestive-symptoms-when-youre-living-with-hep-c/

they talked at one point on dyspepsia...wow that really turned on the light for me ...I have alot of symptoms with that one...
the digestion issue is back again and the bloating....gone for 10 days at my gradkids and daughters probably didn't help things ...I did Wendy's 4for$4 twice ...dahhh and had alot of other junk I have not eaten in years...thought I was really cured...NOT !!
So - now back to "REAL FOOD" yum tastes so so good ..cooked some asparagus with butter onion, pistashio's, garlic and pomegrante seeds saute and was totalllllly awesome
Drank some aloe vera jc and now going for a short walk...they say don't sit after a meal...I have been sitting for 2 days..depression is setting in also...I forced myself to go to pool...I did 3 laps and got out...I usually do 15...what is going on??? has to be the fukashima in the air lol

Yes, the digestive issues definitely got worse with time but rather quickly the last several years. My understanding is that women with hepc that go into menopause often experience an increase in symptoms likely due to loss of estrogen which is seen as a possible protective factor to the liver. This would certainly be the case for me. I know of the forums you speak of. My "cured" post was deleted off one of them, I'm not a regular poster for the reasons you mention, but I do like to follow people's experiences. So glad you mentioned depression as I've had a marked increase in depressive symptoms since EOT and am very confused by it. Gad, what a freaking drag... but we will survive. We're experts at that. I am with you on the food thing and is why I chose my login name. I seem to do best with simple foods I prepare at home. It's a huge drag because everyone likes to get together and go out to dinner or lunch, most of which I can't eat without problems. Guess we may have to learn the art of throwing a good dinner party and see if we can find some willing participants, lol! Hang in there my friend, both of us!

hepboy1 · « **Reply #399 on:** November 08, 2015, 10:02:54 pm »

iodine works for depression , and also red clover , depending on what's going on they say just saying not recommending nothing

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