ROGER...that is awesome news that you feel so good. Can I ask how old you are?
As you prob saw the DR forgot to add my VIRAL LOAD draw in my last bloodwork. He told me HOW IMPORTANT the post 4 week draw is and then forgot to put it in.
I picked up a copy of my EOT test results and spoke to the nurse and am STILL Detected less than 12 IU/mL. Disappointing to say the least, but my battle is far from over.
I was going to wait 4 more wks and do an SVR12 test.. However, turns out I couldnt wait.. I need to know now if my EOT test result was valid.. Im assuming it was and my VL should be significantly increased now, but the uncertainty was getting hard to take, so I went to the lab yesterday for a retest at what is 7.5 wks past EOT .. If its UND by some miracle, Ill test again in 4 more wks.. If its Not UND, then it would have made no sense to wait another month til 12 wks post treatment. Im seeing my doctor in 5 wks, and we'll decide what to do next.
Hi JillLyn,I have terrible asthma as well and advair or other steroids are sometimes not easy to avoid, one has to breath. I have not felt good after stopping Harvoni but it could just be really bad allergies or other things going on, will see doctor tomorrow. I made one big mistake, I was on gabapentin for neuropathy and changed one of my other meds to one a day, why on this earth I forgot to take the gabapentin but I felt really sick with nausea and couldn't stay out of bed for days, what was going through my mind. I have been going through withdrawals and hope it doesn't screw up my Harvoni, I finished a few weeks ago and should see if I'm still undetectable tomorrow, have been since the first week. F3 1a.
You may want to call the Hepatologist and let him/her know you're stopping the Advair, as uncontrolled asthma can have some serious health consequences.
I would also note that Advair has an entirely different mechanism of action than Perisdone (one is inhaled and the other is digested and processed through the liver).
Hi all fellow Harvionians! This is day two end of treatment for me. I feel sick. Worse than when I was on the Harvoni. I don't quite get it. I was looking forward to maybe having a bit more energy than B-4 I started the med. No luck! I'm scared that I'm going 2 feel like this forever. Would really appreciate some feedback. G D Bless U All! Roey
Hi all
I was wondering if the people who are feeling bad AFTER Harvoni EOT also had side effects during treatment?
I really hope you all feel better soon. This news is disturbing on so many levels.
I am only at the beginning of my Harvoni journey with another 22 weeks to go
Thank you
NOW: 12 weeks Post 8wk Harvoni - UNDIE
just went for EOT labs 5/01/15
:) Mel, so good to hear from you!!!!!!!!!!!!! I'm sending you a huge hug and lots of beautiful healing energy to comfort and see you through yet another struggle. You are such a trooper and you are always in my prayers. Love you sis! ...Islandgirl 8)
MEL! :D Now our forum is complete with you back! You have been missed.
I just know you will start to feel better and am always thinking of you. Take care my friend and healing thoughts sent to you this beautiful spring day!
{{{{{HUGS}}}}
Katie
Know some people who cured RA with gerson therapy, very strict to follow but it is gone...don't know much more about it..but it is about juicing....took her two years I think not any longer anyway...she is herself now and is rid of HCV also...
Hey All,For what it's worth, I've seen a rheumatologist for several years. That's when I found out I had HCV.
Thought I'd check in with everyone. After 8 weeks of S/O and 20 weeks of Harvoni my doctor has stopped the treatment as of April 30, 2015. He felt the side effects I am experiencing along with the duration of treatment as well as my clear results indicated it was time. He felt that if it's going to come back after 28 weeks of treatment that 4 more aren't going to matter. I cried when I left the office with relief thinking that maybe just maybe some of these miserable side effects will finally start to dissipate.
Latest sides for me include the high blood ammonia level and over the last month I've developed high RA numbers, having major issues with my hands and stiffness, legs can get stiff as well. Overall achy, easiest explanation is the flu aches on steroids without the fever 8). Pretty tired but have finally decided to go with my doctor's advice and am taking short term disability for a few weeks to allow myself time to detox and hopefully heal.
Going to see a Rheumatologist in late May, see the ID doc in a couple of weeks to check in and also get blood work again. Hoping the RA number and the high ammonia numbers go down as the Harvoni exits my body. For now it's all about green smoothies, continuing the tons of water and resting when my body says to.
Hope you are all hanging tough, the journey is a rough one for many of us but we are a tough breed and can get through it. Praying we all see that Magic SVR in 2015.
Hugs to all,
Mel
@mel, hey its good to see your face ! I'm so happy you and lynn and mario are done and "waiting" ;) trying to catch up here, crazy busy, katie what are you building/redoing? Islandgirl how are you and your mama? and Lynn I'm jealous of your trip, could you bring us some salmon?
stay well everyone
kate
Getting well,
Thanks so much for sharing that. This past year has been a whirlwind for me beginning with finding out I had HCV and F4. Not sure how I got it but doesn't matter anyway.
I honestly was surprised when the RA popped up; I was swelling and thought my stiff hands and achy limbs were from water retention. I'm at the point now where I don't want to read another or research any more. Plus I really appreciate the personal experiences of others, much more insightful than any study or document for me. Truthfully I think I was on the meds so long my body started freaking out even more.
Thanks again :)
Mel
Kate you sound like me I demoed my kitchen, tore out the walls , busted up ceramic counter top and grout, took out the sink dishwasher and cupboards....I remember buying this place a year ago thinking , ahhh this kitchen is ugly I will just paint and get a new countertop...then I thought NO this is to too big of a job...NOT FOR HARVONI...give me a sledge hammer...I took it out and put new drywall in mud, tape texture and paint ...VOILA...called the designer and they just came and put new up....looks grand....NOW , I try to get going and sleep well too but can't get motivated and feel like it is such a chore to get up and get going...I ususally start the day at 12:00 lol..don't know what happen, I feel good just don't want to do stuff ...I push myself though...to day I did molding on the back patio and took the door off and cut the bottom off 1" so it could clear the tile ...anyway thanks for sharing...How long ago did you stop TX...I was Jan 30..2015
Wow that is so cool, where do you live ???
I am getting too much sleep I think...I sleep until 8:30am...like the ol' days and asleep by 10:30pm....I just listen to the body and do what I think it needs...as I know ...this too shall pass ...it alllll comes to pass...guess that is good , I get bored easily...
Wow , what a story on your TX...hope you don't mind I shared it with another lady who I keep in touch with she got two extensions for 12,& 24 weeks...geno-1a 40yr HCV but not really high labs...she was scheduled for 8 weeks TX harvoni, still detected at 8 wk(210)... she is awating her 12 week lab by Friday...so I shared your story to help her exhaustion...the anticipation and hope is strenuous...thanks Katie
Anne
Katie, I've been off treatment for a month and is why I started posting here and in this thread because I'm off and still continue to feel terrible. I actually felt better on treatment although it was a roller coaster. I just haven't had many good days at all since EOT. Sure glad to know others are feeling bad too, but I don't know what it means for us. Only time will tell I guess. It's kind of depressing.
Girl !!!! how do you know how to handle a saw like that , I just blew it on 45 angles for a frame..!!! whew you are good
thanks- - this girl is from On, Canada genot 3a , (correction not 3b) stage 4That is the recommended treatment for genotype 3. Ontario has very good medical centers, some of the best in Canada. London Ontario is well respected especially with regards to GI specialists, in fact quite often other provinces fly patients there.
cirrhotic liver. portal vein leaking into stomach..ODC and govt approved her she is waiting for meds , no response from ODC and they said for sure last WED./. nothing...I think TX is Solvadi/riba/inf ??? or is there even a TX for 3a's
YOUR THOUGHTS PLEASE
I asked her to go on another forum and get some advice , she hasn't yet and the forum she is on is not directive
any help I can share with her...thanks
I would gladly put together a spreadsheet. I love spreadsheet. This is not good that many of us are experiencing problems. If folks want, I can volunteer and can provide my personal e-mail so I can have you send the info there for ease sake. I would post results at different intervals so folks could see. I would also share with my doc and Gilead. Interestingly my doc said oh....it is probably anxiety. No, not!
That might be quite the undertaking CHepC, I was thinking it would be awesome if it could be attached somehow where people could update it with their own info, but I am sure that isn't even reasonable. It seems that more accurate info would be obtained if they just had to check off what they were experiencing as it is so easy to forget to mention the short lived or rather minor issues. I love spreadsheets too. It would also be interesting to see if there are issues experienced before, during and/or after treatment and how long they lasted. Ya, I know, I am pushing it with too many specifics, but that is just my background.Unfortunately this is BB software Katie it will not support editing in groups, nor will the fields of a spread sheet layout work. You can insert a standard HTML table like this and collate others info though but it will work best if the one who starts the table does the editing because group editing is not possible except by moderators who have higher editing privileges.
Whatever you decide, I fully support it and your offer is wonderful! Thank you!
Katie
| enter your data next entry and so forth |
Having long waves of heart flutters...hmmmm...thinking more on that Thyroid thought but also read about Arrhythmia due to lack of magnesium so I am going to go get some magnesium...that would be a quick fix...some have claimed heart regulates in matter of hours...I like it...still think it has to do with Harv...especially if they came out with the warning: IF you are on heart meds do not take HARVONI ...and didn't a girl pass away from this issue on heart meds before PHARMA discovered this issue..To be specific, the reaction happens with the heart medication amiodarone (http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf). This is the only known fatal adverse reaction found to date.
Finished my back patio...painted all the trim and cut a door , made a dog door framed it out and painted it now have to hang it -then paint the french doors then off to the front to put in pavers and plants...so nice to be back but afraid to over work with this heart fluttering in and out ...what the heck ??hepcme: I am impressed and evidently you can measure better than you claim!
Had to cover a secret hole pass thru from kitchen in my bedroom closet?? dont'know what that was about but sealed , mudded, textured and painted the closet...looks grand...don't know if I am going to sell...I have a bucket list .. :}
hepcme-please also get your thyroid function tested (TSH, Free T4 / Free T3)
That is how I found out I had a thyroid issue because I was getting the heart palpitations and it turns out I was hypo
Dragon You are correct! I suspect that I was Hyper at that time. After meds I am on the hypo side nowMuch is not known about how HCV causes autoimmune problems. Long before I was finally diagnosed with HCV in 1993 I went on thyroid replacement hormone because of non specific Graves disease (your immune system attacking the thyroid) causing my thyroid levels to fluctuate wildly. So I have been through the wringer and can tell you that a surplus of thyroid hormone in the body causes these symptoms,
But I guess what I was getting at is that I had no idea until this started happening to me and I went to a cardiologist and he found nothing wrong with my heart but said I need to see someone for my thyroid. And now I am finding out or I read it somewhere that my Thyroid problem could have been caused by the HepC
Oh boy , now what is T3 and T4 I thought that was TSH and they all were a thyroid test I go Wednesday and can't wait to get there..this AM is great and I am not experiencing any side effects...but I haven't eaten yet...that seems to start it but what do I know...
The endo I was seeing told me, when I asked him for the free T3 test, that he doesnt order it because the number is not reliable because it fluctuates a great deal.Hi Dragonslayer
Deb, I think either you respect the alternative/naturopathic route or you dont.. I personally dont! For example, take coffee enemas.. Unless there are peer reviewed double blind studies to show that this 'therapy' does anything at all. Im going to turn the other cheek (pun intended!)Hi :). I'm not sure I follow. I am not following a naturopathic route. Actually one of the reasons I asked to switched to that medication was because it contained less fillers and binders because I thought maybe those things were causing my itching. (Turns out it was the hepc all along). But since I did switch, I have felt better and my T3 /T4 levels are much better. I could have had similar results with synthetic medications so I'm not advocating the NDC (pig hormone) but I think patients should have a choice. And I think that following TSH alone is an old school way of thinking and diagnosing on TSH alone is just wrong
Hi :). I'm not sure I follow. I am not following a naturopathic route. Actually one of the reasons I asked to switched to that medication was because it contained less fillers and binders because I thought maybe those things were causing my itching. (Turns out it was the hepc all along). But since I did switch, I have felt better and my T3 /T4 levels are much better. I could have had similar results with synthetic medications so I'm not advocating the NDC (pig hormone) but I think patients should have a choice. And I think that following TSH alone is an old school way of thinking and diagnosing on TSH alone is just wrong
Anyway, maybe I misunderstood what you said., :) just wanted to clarify.
Hi Deb.. I guess it was because natural pig hormone (Armour Thyroid) so far as I know is generally only prescribed by naturopaths; I just inferred thats where we were headed.. There's not a lot of hard data proving one more effective than the other, but there are a lot of anecdotal reports by patients favoring the pig hormone. If I could get my regular doctor to try it, I might do that.. But I sense it would require switching to a naturopath.Hi Paul. Ahh I get it. Like I said the only reason I switched was because I thought the additives in Levo were making me itch. But my General Practioner is really cool. I asked him for WP thyroid and even though he hadn't heard of it he gave it to me. (I tried Armour but got heart palps). If you are doing ok on synthetic then stay with it. My itching only stopped after I started Harvoni. So yippee for that!
Wow I am really sleeping well, I am getting such sound sleep ...16 weeks post TX 8 week Harvoni...I am busy dreaming for sure...sometimes exhausted when I wake up and have an emotional hang over...This is for sure -really strange and I am getting so many healing effects, is what I am thinking....I go Wed. to see PCP and have detailed bloodwork done...want to see thyroid...I looked up my record and it was 2012 my thyroid showed hypothyroidism but not that high only about 8 points is that alot? TSH 2nd generation..whatever that means...that is thyroid test ehhh?? I didn't see any T4 or T3 I haven't looked it up yet...I will let doc tell me and if it is scarey then I will do the research...weathere is changing here in AZ , starting to warm up so the dryness is coming in... labored breathing again...but chest pains are less frequent and BP is fine...have lots of energy and finished back yard...now I need some stone...we don't have grass...we don't have water...lol hope all is well with everyone..and your health is balancing out..
must work on not stressing out though.HERE HERE!!
I would llike some of that energy I had on the Harv -17 weeks ago...I demoed my kitchen and put in the plumbing and electrical for dishwasher...so that new cupboards could come in..today I can barely get off the couch, a rough day...tomorrow is another...at least the breathing issue is not here today or the heart palps...this I hope , shall pass too...kinda scarey if ya ask me...
I been thinkn...this heart thing is like caffeine rush...then I thought, I have one cup 6-7 am and these heart palps dont't happen till late in the day...It is like when I was on TX...had this blasted rush of energy ...and could go go go...then crash...these rushes now come but they don't bring the go go go..I have to slow slow slow down and just let them do their thing...then it stops ...I would guess it is related to TX ..someone knows and won't tell, pharma...I did stop and see my old pharmacist and tell him the news , he ws the one that said don't jump on this med when it comes out watch awhile and see what it does first....I would have been dead by now .. so I roll with it ...I do feel it it is still early in the game...my body took a hard fight with that virus for 7yrs that i know of and 25 after that....it isn't going to heal in 3 mo....But But But.....It is hard to slow down the train sometimes. But this is all I can suggest. Perhaps that is why I work on something other than my treatment when the questions and worries become too difficult to deal with. My train is running wild as well, not knowing if I have reached UND status. But there is nothing that I can do about that because of the pressure on the facility to measure HCV titters and the bean counters in our beloved government cutting back on testing for those undergoing HCV treatment.
HERE HERE!!
The owner of a small janitorial firm that I have been working for for the last 2 plus years on a part time basis and for peanuts came around last night. I call him HAIRS BREATH HARRY. He manages to get into situations that stress the shit out of himself and others.
This is the gist of the phone call.
Harry;
Eric, lets have a little drink tonight can you get me a mickey of Absolute?
Eric;
Harry, I have told you in the past that I do not drink any longer and if you insist on trying to pour it down my throat our friendship and relationship is over.
Harry, after a slight pause for contemplation;
Ok can you just get me a mickey and I will just have a few so I can relax, we need to talk about next Thursday, I need your help setting up a new contract for a major building my company just acquired.
Eric;
Can do and I am glad that you are starting to get your head above water, just don't wind up drowning doing a backstroke with this one!
After the little 1 hour meeting I offered to drive him home with his company van and then walk home because he only lives a few blocks away. He refused, I have not heard from him so most likely he didn't gLet stopped or I would have had to do some janitorial work today cleaning his accounts!
So yes working on getting the stress level down in life is important but sometimes the demands of today's political economy are very hard to deal with.
Take care of yourself first and try not to forsake those who are close to you, but sometimes when you are on treatment you MUST just take control of the situation if you are going to ever have peace of mind! After Thursday and our "investigation" into the details of why a reputable janitorial firm made such a mess of an important commercial building, I will advise his as to whether or not the contract is viable on the basis of what I see, most importantly whether or not the contract is worth the effort or if the contract could become a financial fiasco for him.
Then I am going to get the hell away from telephones for a while and see if I can shake hands with Walter again or any of his his relatives. Like Fat Freddy that my brother had a conversation with before he was released. 14 lbs plus for a lake rainbow on the fly ain't nothin' to sneeze at!
(https://lh3.googleusercontent.com/v7mFyNJ7dX96SRzjmQlhLATdV1g_buq1Yy84Nj8k8A=w794-h595-no)
I need to know. Do docs give you a CT scan after treatment to make sure you don't have liver cancer ? Seems like they should since having hep c makes you prone to get liver cancer.
Well how would I know? I could have liver cancer right now and not know it,
This worrying is hard.
agree with that....I have tried some foods only to have come back at me ...digestion is still slow and hear alot of gurrrrgling going on down there...I eat small meals with breakfast being the healthiest and most agreeable... I have not eaten meat in decades - fried foods - ice cream- mayo products , processed , fish etc the list goes on ...so I am taking it slow and enjoying a happy norm for now...still love the carbs though...big , no huge,, compulsive fettish...Oatnut breads , wheat nut muffins, crans oats nuts etc that list goes on ...YUM don't forget the chocolate too
I am just paranoid of all the waters....fukashima lol comin our way....too many dead animals on the beaches and waters turning red in countries...just sayin...too much to keep track of I just do without...I miss fish so much though Loved Tilapia and crab legs ...been so long...just want to dip in butter ..ahhh :{
Hi, Yes, I'm just so happy that this miracle medicine has cured me and many of us!!! Amazing, I still think it just seemed too easy to rid this disease within a few months ,Always try to remember that each day counted is remarkable curing us. Think, of how worse we would be getting each day, but Instead The medicine, with a few side affects, and aren't emergency type, each day your healing, and healing getting rid of this poisoning disease, How lucky we are! Try, to stay brave and that You yourself can and will fight the battle and WIN!!!! I too have aches and sinus problems especially with the pollen being a double whammy on the charts? Sinusitis,rhinositis.ugh, but, have it checked out so an infection doesn't worsen., hopefully and shortly you'll be feeling sol much better and happier that you stuck it out and won ,cured, how lucky, hugs,debbi
Hi, Yes, I'm just so happy that this miracle medicine has cured me and many of us!!! Amazing, I still think it just seemed too easy to rid this disease within a few months ,Always try to remember that each day counted is remarkable curing us. Think, of how worse we would be getting each day, but Instead The medicine, with a few side affects, and aren't emergency type, each day your healing, and healing getting rid of this poisoning disease, How lucky we are! Try, to stay brave and that You yourself can and will fight the battle and WIN!!!! I too have aches and sinus problems especially with the pollen being a double whammy on the charts? Sinusitis,rhinositis.ugh, but, have it checked out so an infection doesn't worsen., hopefully and shortly you'll be feeling sol much better and happier that you stuck it out and won ,cured, how lucky, hugs,debbi
I just got my recent results and I am Hep C FREE!1 small whole sockeye 3-4 lbs dressed
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...SunriseI 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.
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?
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
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 ,
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
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.
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.
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!
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.
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
You dont consider this a bit of an overstatement?
"With the information about Harvoni and high probability toward cardiac toxicity,"
Kim, is there ANY credible evidence of cardiac toxicity with Harvoni aside from its negative association with the drug Amiodarone?
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
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.
http://www.ema.europa.eu/docs/en_GB/document_library/Other/2014/04/WC500164418.pdf (http://www.ema.europa.eu/docs/en_GB/document_library/Other/2014/04/WC500164418.pdf)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.
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.
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
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.
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.
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
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.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...
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. :D ;) :D
Katie
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. YayAmen 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
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.WOW now there is a mouthful of watered information...!!!! got it...thanks Katie...gulp
Knowledge is power!
Katie
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
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.. :-X 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
im wondering if the protein harvoni blocks would cause that?..........No.
Nonstructural protein 5B is a viral protein found in the hepatitis C virus. It has the key function of replicating the HCV's viral RNA by using the viral positive RNA strand as its templateSo if you lose HCV from your system you lose the ability to create NS5B, which is a good thing IMO. It is entirely possible that proto proteins that HCV create also trick the liver into not killing off and discharging HCV infected cells and instead the zombie cells then go on to become factories for the production of fully mature virus particles. Like a scene from the movie Alien where the creature puts an egg into the stomach of the victim then keeps the victim alive until the thing bursts outs in the adult stage of the life cycle.
love all of you.....Battle the Beast.....Mel...I love "BEAST MODE!" that's perfect!!!!
Sunrise...peach tea sounds yummy....thank you!
Man I hurt like heck too....joints and aches. Yes I do a lot physically.....but dang is this normal? I'm only 60 years young.
Hearing you all ache too does make me wonder if this is post treatment stuff.
When I told my hepatologist he looked at me and said.....hmmmm, most people feel so good after treatment. so I scratched my head, paid his fee and left.
You all help so much. People not on the treatment just don't know and I get that. So thank you all for sharing and caring!
Jill
Post TX now 9mo...I remember the first time I cut myself after being "cured"I a nutshell you have expounded the best reasons why we need to communicate about our new joys and tribulations at being free from this God forsaken virus. Being free then gives us the responsibility to help others get over the fear and terror which this disease has wrought upon us as all as a society. Here is how I feel about this truth which is better expressed by music.
By habit , I first panicked and tried to contain the blood site , when I stopped and thought .....OH IT IS ONLY BLOOD...what freedom that no one could understand but those of us that have had a fish hook or a bloody nose that wouldn't quit while visiting the grandkids....
Thank you Jesus
sending you "get well love and wishes" Nicole.HI Jill,
Are you feeling better today?
Sure hoping so.
Jill
The biopharma industry overall has a poor record on transparency....
http://www.fiercebiotech.com/story/gilead-sanofi-singled-out-worst-offenders-failing-disclose-trial-data/2015-11-12
I was hoping beyond hope to be able to go back to full time hard physical work by now but it looks like I will not be able to work anywhere near as hard as I did only 8 years ago.
I truly hope your body heals up and there is no greater degradation to your quality of life.
Here on the wet coast we are starting to experience our annual wet season and we all know it is a season of storms and bleak dreary days. It is an annual shock to our systems almost as bad as watching Fox News and expecting to be stimulated intellectually!
Eric
I found this article interesting and disturbing. Makes one wonder....huh?
"Do we have such hypnosis and blind faith in our doctors simply because of their white coats that we believe they are infallible? And, in turn, do they have such blind faith in the medical journals recommending a given new wonder medicine or vaccine that they rush to give the drugs or vaccines without considering these deeper issues?"
What they fail to address, is when you have a dangerous illness and a cure comes around, you just want it and figure they know what they are doing and keep the blinders on. It is ultimately our choice.
http://nsnbc.me/2015/06/19/shocking-report-from-medical-insiders/
I am still grateful for Harvoni but it would have been so beneficial to know of possible after treatment side effects and what long term consequences these would have. All of the test groups were very small considering how many HepC infected people there are. Hopefully everything is fine and it seems it is a small percentage of us with issues and perhaps those issues are not even related to the treatment....but it sure would be nice to have confidence in that.
I don't mean to panic anyone but felt I needed to share this.
Katie
Hi Everyone! I have been putting off posting as have been waiting to make sure my improvement isn't a temporary thing but it has been over 2 weeks so I am EXCITED! My horrible after treatment side effects are all but gone! No more fatigue after 8 months of feeling too weak to do anything but basic daily chores (and I had to talk myself into tackling them)!!! It gradually improved but nothing close to normal. I still do not have my endurance built up however that's is probably due to doing so little for so long. I am sleeping great after suffering with insomnia for over a decade, my mental clarity is back, my skin and nails have improved so it just took my body time to adjust. Along with the severe fatigue came a form of depression which I have never experienced before so I am feeling like my old, happy, positive self and actually feel like socializing again.That is great to hear Katie! I still have some joint pain but it is backing off and my sense of how well my endurance is recovering is also better. It is no longer a chore to walk for a few hours. I just had my follow up appointment and found out my status is slightly positive for RA antibodies so I have another requisition for a test. My mother had RA so it does not look great. Long before I went on Harvoni my joints were starting to act up. Here is hoping that improved liver functions, sensible exercise and diet will keep this beast of a condition in check. I read the report online and I guess it was inconclusive but I took it to mean negative. My doctor set me straight, unfortunately I am slightly positive for the arthritis antibodies, so this news comes as a bummer to say the least.
I have joint issues however they came from the hard physical work I have done with injuries and arthritis but now I have the mental attitude to better deal with those issues.
I just wanted to let you know if you are suffering some effects post treatment, to not give up as things will improve.
Enjoy your holiday season and don't worry, I will be checking on all of you. You are my family and I appreciate all of you. This has been an amazing journey and it has been an honor to get to know you. Thank you for your support this past year!
Katie
I just finished 12 weeks of Harvoni and feeling like crap. Super fatigued, joint pain, back pain. I was fine until about week 10 with just mild fatigue and headaches. Now I have pain and extreme fatigue. Still no comparison to the interferon and ribovarin treatment which I had to shop. What should I expect going forward?Welcome to this forum Alan. There are indeed many here who have experienced more fatigue caused effects post treatment. It seems that some of us are just in for a rough ride. I found that getting careful exercise and slowly working on normalizing sleep patterns was the most helpful thing. I started treatment (24 weeks) not feeling to terribly bad but my mobility, mental capacity was starting to be severely compromised by HCV. I would say that I was used to feeling absolutely terrible all the time.
ALAN
I just finished 12 weeks of Harvoni and feeling like crap. Super fatigued, joint pain, back pain. I was fine until about week 10 with just mild fatigue and headaches. Now I have pain and extreme fatigue. Still no comparison to the interferon and ribovarin treatment which I had to shop. What should I expect going forward?
ALAN
Interesting. I just finished 24 weeks on Dec. 8. I'm Geno Type 1A w/slight scarring and previously did the Ribaviron and Interferon protocol at NIH. Only had a few headaches with no fatigue or nausea; and worked out 5 days a week. Now experiencing headaches and fatigue. Caught me off guard. I'm going back to my routine today. This is minor, I did 24 weeks with minimal side effects. The Interferon made me crazy :) . Harvoni is the bomb! :)Welcome fellow 24 weeker Ross.
Little is known about how long a single infected hepatocyte lives and functions usefully after initially being infected with HCV. I am theorizing that it can live a fairly long period of time infected before it bursts and sends the load of mature virus particles into the blood stream. THEREFORE you can have a high level of functional liver cells that are infected but still alive but at the same time have a very low viral load count.
I just wanted to comment about post tx side effects- which I believe are due to the drugs. I agree with Jill, Sunrise and Nicole that symptoms such as fatigue and joint pain- which quite a few of you have mentioned (among other symptoms) seem to be quite common.
I was on Sofosbuvir and Daklinza- the combination I think is similar to Harvoni; only Daklinza is made by a different company. I was told that joint/muscle pains were not side effects of the meds (which is wrong, see below) and that having these post treatment could be something else-not the drugs.
I find this hard to believe as these symptoms (along with the fatigue) started half way through tx (like you said Sunrise) and Id say (some days) are even worse now. I believe that because these DAAs are quite new even the medical staff are not aware of what the side effects are.
I found an article by the European Medicines Agency which listed Arthralgia (joint pain) and Myalgia (muscle pain) as common side effects of the meds I was on, yet i was told by medical staff this wasn't the case.
Unfortunately there is so little in the public realm about post tx symptoms. This is why I search here and the Uk site to find out how others are coping. At least its reassuring to know you're not alone.
Its also great to read that people get better as time goes on- I noticed Jill said she was feeling a lot better now after 10 weeks (?) .
I did read a post (somewhere?) that suggested the immune system could still be in hyperdrive ( the DAAs work with/boost the immune system to fight the virus) and so after tx the immune system may still be in overdrive...who knows? Im not medically trained but it makes some sense?
Good luck to all of you still on tx and to those waiting on post tx tests to see if you have slayed the dragon. I'm EOT UND and have 7 weeks to go for the 12 wk post tx test. The side effects can be disheartening but eradicating the virus is the most important goal.
Best
Helena
Hello All! I have been on and off this forum for many years. Finished 24 weeks of Harvoni in Dec.1015. Undetected (and grateful) and feeling "not good enough". Checked this forum and read about post TX fatigue, salt craving, digestive issues, body aches, headaches, etc. Wow! Am I relieved it's not just me. I have been trying to fix all these things and I realize that time may be the solution. I read the post that said that after 9 mos. they felt better. I am going to slow down and let my body heal. Was trying to do too much, too soon with unrealistic expectations. Hey - who knew? No one. We are the first group!
BTW. my last labs were perfect except for low chloride. Gee...what does that mean? Google it and see the relation to salt cravings!
Thank you moderators for keeping this resource available.
Just wanted everyone to know, I did get my requested 12 month post treatment blood work done when I had an extensive panel completed. Got the results and every single test was perfect from thyroid to cholesterol from liver panels to tumor marker and of course my VL is UNDETECTED.
Here is a wish for all of you to conquer the BEAST and have a healthy happy life.
Enjoy your summer and the very best to all of you!
Katie
Hey Kim, any news on your new theory you presented to the doc?
I just wanted to vent a bit... I'm a year post tx and still suffering debilitating fatigue triggered by the least bit of stress. I've been so frustrated lately as it seems for the past couple of months people are coming out of the woodwork wanting me to do things for them, even despite the fact I continually tell them I'm overburdened and exhausted. What is it with people that won't go away and leave you alone?! It borders on outright rudeness and feels abusive to me. This is happening at work and at home; coworkers, bosses, neighbors and family. To make matters worse, most of these people don't help me when I ask, they always have an excuse. I used to be mostly dependable, so I can see how it started, but things have changed for me and I'm struggling now. I tell people this, but they act like I'm lying. Or maybe they want me to struggle for some sick reason. I'm about to get rude and tell these people where to get off. Thanks for letting me vent.
If anyone else here is struggling like this and has found a way to deal with it, please let me know. Thanks!
I just wanted to vent a bit... I'm a year post tx and still suffering debilitating fatigue triggered by the least bit of stress. I've been so frustrated lately as it seems for the past couple of months people are coming out of the woodwork wanting me to do things for them, even despite the fact I continually tell them I'm overburdened and exhausted. What is it with people that won't go away and leave you alone?! It borders on outright rudeness and feels abusive to me. This is happening at work and at home; coworkers, bosses, neighbors and family. To make matters worse, most of these people don't help me when I ask, they always have an excuse. I used to be mostly dependable, so I can see how it started, but things have changed for me and I'm struggling now. I tell people this, but they act like I'm lying. Or maybe they want me to struggle for some sick reason. I'm about to get rude and tell these people where to get off. Thanks for letting me vent.
If anyone else here is struggling like this and has found a way to deal with it, please let me know. Thanks!
Acupuncture, if you can find a true healer, can help immensely in "opening up blockages" where your energy isn't flowing and help everything function better, including you immune system. I don't know how it works or why but have been having pretty regular tune ups for the past 10 years and contribute it to my overall good health, which for my age, or any age for that matter amazes doctors.
WholeFoods, if I can put it bluntly, I think these people just got used to sucking on you and it's time to shake them off! Once they are in that role they don't let go, and you may need to find new people to relate to.
I used to be such a caretaker, and even majored and worked in the Social Work field awhile, but decided I don't like that role. Now when I give to others I'm very clear about why and it's because I really want to give to them.
I had to shake my brother off and it was very hard, because I really wanted to have family in my life. But I noticed he asked me to do all sorts of favors for him but when I asked him for help it was always 'sorry I can't'. Well, sorry I can't have you in my life. I'm sounding a bit flippant here, but it was very painful to accomplish. I finally realized that I don't want people in my life who don't care about me, and perhaps I wasn't really loving myself, but often helping people because on some deeper level I thought it would make them love me.
I have no idea if any of this is what's going on with you -- am just sharing my experience with this dynamic.