Hi Julie, good to hear from you again.

Sorry you`re not feeling so good after finishing your Harvoni treatment.  I can understand your concerns about losing so much weight and I`m glad you`re getting all the right tests done, very sensible.  Weight loss is not uncommon with this combo and it hasn`t been long since you finished your treatment.

I remember losing my appetite while I was on Peg/riba and dropped about 16 pounds in weight over the 24 weeks, and then continued to lose about another 10 pounds during the first few months post tx.  I have put a few pounds back on since then but that`s all, it took me a long time to get my normal appetite back.

Do keep in touch and keep us updated, and in the meantime try not to worry too much.  Anxiety can lead to weight loss and poor appetite too, as well mking you feel tired, so give yourself more time to recover and make sure you get enough sleep, rest and relaxation. 

Take care, wishing you all the best! 

Thank you all for your support and I am confident that if it is cancer I will beat it. I beat this monster thus far and will continue to survive.

If it is the Harvoni well that will be icing on the cake.  I love being thinner and my back doesn't hurt anymore.  I still have a lot of fatigue.  It never subsided even on treatment.  I went through a BMS clinical trial (which was not successful) back in 2014 and I was feeling more energy while on the drugs and while my viral load was undetectable.  This time however the energy has not improved yet.  But I don't have to work full time so it is manageable. 

Hi Julie,

Welcome back, but I'm sorry you're experiencing the problem with weight loss. According to the pooled data from all three ION studies, abnormal weight loss, and decreased appetite were common. It sounds like you're covering all the bases and having the proper testing done, so I wouldn't worry at this point. Some have gained weight on Harvoni and others have lost it. It takes time to recover after treatment, so I recommend giving yourself more time for that and continue the discussion with your doctors.

I lost a lot of weight on a different protocol and ended up losing about 55 lbs. it just fell off and I was heavy too, so now it has stopped and I'm healthier for it. Do your best to eat healthy when you do and continue hydrating properly. If you're not eating as much, you may be missing out on some needed fluids. 

Hello everyone its been awhile since I looked around on here.  I had major weight loss on Harvoni.  I was on a 6 month regimen which started mid October until mid April, 2015.  I lost 40 lbs so far and it wont stop.  I lose about a pound a week.  I am (was) a bigger girl so it was great at first but now I am a little worried.

I thought that the weight loss should stop after I stopped taking the drug but it didn't.  so since then I had my thyroid checked which turned out normal and had a preventative lung ct because I was worried I may have some beginning stage cancer.  my only symptoms are weight loss and fatigue of course.  the more weight I lose the more my appetite decreases too.  I have two appts coming up next week and hope someone can at least rule out cancer.  This sucks.

I sure know what you mean about napping at anytime! When I 1st started harvoni I was taking it in the morning. Taking it around 7PM seems to work better but I still have trouble sleeping at nigh-which happened when I took it in the AM also. Who knows!

Thanks Mugsy, Felt well enough to go to 5pm mass. Now if I can just keep the fever down it would be close to perfect. Hope you are feeling better,too. Praying your dad is doing well and feeling Holiday Magic .  Michaele

Michaele wrote:

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 Mugsy For the life of me I have no idea why I posted that.  Blame it on the fever and weight loss.  LOL Michaele

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 No worries. I do hope you are feeling better today.

Take care, dear one.

Mugsy

Mugsy For the life of me I have no idea why I posted that.  Blame it on the fever and weight loss.  LOL Michaele

Tig , dont remember what it was that turned me off about Zofran. Phenergan has been my drug of choice and works for me. I take 12.5mg ,Im very sensitive to drugs . And now just when I started to feel normal , I over exerted and the fever came back. Its 5:30 am fever is down and I doing the cheese toast and egg thing again.  Merry Christmas   Michaele   To tired to get into editing glitz at this time

Hi Michaele,

I cleaned up all those edits for you. Can you explain what you wanted to do and I can assist you with it? I'd be happy to try! I also read about the breast feeding transfer. That sounds very unpleasant...

Too bad the Zofran didn't work for you. I had great results from it. I'm curious to know what you read that turned you off of it. Besides the brand name being obscenely expensive that is! The generic worked well.

Tig

Michaele wrote:

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Mugsy . I have tried to edit the post about babies getting thrush at breast . This seems not to be the case, but simpley what I was told when my daughter got thrush 35 yrs ago while still nurseing. Seems the baby gets her thrush on the breast and can infect the breast and cause a cycle if reinfedtion if breast not tended to.  My Bad.    Wonder why some edits dont post?  Michaele

-- Edited by Michaele on Saturday 20th of December 2014 01:04:46 PM

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 Haha! No worries, Michaele, as my youngest breast fed kid is 25 so thrush during nursing is not an issue anymore! I do appreciate your info.

Mugsy . I have tried to edit the post about babies getting thrush at breast . This seems not to be the case, but simpley what I was told when my daughter got thrush 35 yrs ago while still nurseing. Seems the baby gets her thrush on the breast and can infect the breast and cause a cycle if reinfedtion if breast not tended to.  My Bad.    Wonder why some edits dont post?  Michaele

Tig , meant to say Ive been using Phenergan PRN for 10 yrs .  Had an RX for Zofran but read something that caused me to not use it.  Michaele

Tig , the eggs and texas cheese toast were to die for , think I'll pass on the ice cream this time.  Michaele

Mary , I can see how it would have been easy to pick up thrush at hosp. Are you on a swish and spit , or gargle routine ?  Candidis albucan is a tricky buggard.. Its not a sin,  but Im sorry your not feeling up to snuff. Michaele When my kids were small I was told babies can get it at breast but that seems to not be the case. My daughter had it a few times. Guess I was a bad mom .

By the way all those muscle and joint pains are on the grade 2-4 side effects list.

Michaele, I hope that you've found something that will give you ongoing relief. You certainly deserve it! Now I'm going to have to go out into the kitchen and find something to eat. Your midnight snack sounds pretty good! I hope it goes down well and doesn't provide any unwanted surprises about 2:30 this morning... Maybe an ice cream cone before bed???? Good luck!

Tig

Fourlocos , glad to hear your doing well........Michaele

Thanks Tig ,  for some reason icecream and banana seems to have hit the spot, and now Im up at 11pm making eggs and texas cheese toast. Hope I dont make my self ill.  My fevers has lessened these past 2 nights. The head ache and crippling fatigue have lessened, too. Things may be looking up....Michaele

I was enjoying the nausea as far as weight loss goes!  That only lasted the first four days and now I am hungry all the time.  I have issues with gastritis and was always having stomach woes with gas and bloating.  Strangely I haven't had that since I started the Harvoni.  It's odd.  I was worried since I don't tolerate medications very well but other than feeling fatigued I can't complain about SE at all.  Being I am on the hyper side of life, this is actually a very mellow journey for me.  Just hating that I feel rather brain fogged.  I have post it notes all over the place to remind me of stuff.  Gotta love running in the store for bread, spending 100.00 and forgetting the bread... twice now!

Thanks, Tig! You always seem to have helpful info to share. I do appreciate you.

Mary

Hi Mugsy,

Sorry you're feeling like poo   Thrush for the most part is not contagious. Here's a bunch of info (10 pages!) on Thrush and should answer some questions.

http://www.medicinenet.com/thrush/article.htm

Tig

I was not hungry at all for the first 10 days or so because of the nausea, but it soon changed to ravenous when the upset feeling went away! I have put on 7 pounds and have returned to being conscious of every bite as my glucose level was high, too. And I think that plus stress was the cause of the thrush I came down with?  My father had thrush in the hospital when I was there and I am not sure if it is communicable or not, but my throat became sore 6 days after returning home.  And I am so tired I can nap at any time of day if I let myself.

Michaele,

When I was on Tx, I was taking IFN which is considered one of many chemo agents given to people with cancer and HCV alike. I mention this because whether Harvoni is or isn't considered a chemotherapy agent, the treatments for nausea are still based on medication related nausea. That said, I looked up treatments that addressed that issue and aside from the anti emetic I took (Zofran), I ate foods that were stomach friendly as well. Here's a website (one of many) that will give you some ideas for foods and liquids that will hopefully bring you some relief. Good luck...

http://www.cancer.gov/publications/patient-education/nausea.pdf

http://www.ucsfhealth.org/education/diet_for_cancer_treatment_side_effects/

Tig

Harv,   just crawled to the store, wish I knew about the cottage cheese sooner. I just ate Bryers vanilla bean  ice cream with a banana, and feel pretty good. Stopped  ice cream long ago but the NP told me my veggie diet was not enough, so Ive branched out some . Even doing small amounts of meat. I avoided animal products ,but my B12 was suffering. Did You try plain soda crackers for the nausea? Alot of people are saying sugary carbs are making them feel ill. Hope your feeling better.   Michaele

Michaele wrote:

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Thanks Harv , did/do you feel abd discomfort like bloating or burning ?  My stomach is making alot of grinding noise all the time. I think the gas people are complaining about is in the mix. I think I need to eat foods that are more calorie dense.    Michaele

-- Edited by Michaele on Friday 19th of December 2014 07:13:25 PM

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 Yup, gassy, bloaty, burpy, too. And I don't usually burp. Cottage cheese was my go-to food, if you can handle dairy. Sugary starches made it worse for me.

I saw something about Harvoni effecting S T waves, but I need to look it up because I could be wrong about which waves it effects. My S t are normally abnormal.   Michaele

Just checked  and it was a QT study, not anything to do with ST wave, but it does cause flutters  as noted on the grade 2 thru 4 side effects list  list.

-- Edited by Michaele on Friday 19th of December 2014 09:29:31 PM

Hi Ro, I take levothyroxine , maybe they will check TSH next visit.  I know this sounds strange but my gut was burning and for some reason I decided to drink a cup of instant hot cocoa. It settled my stomach. Isnt that freaky? Because my blood sugar was up Sunday, Ive been cutting back on carbs. This to will pass. They only tell people about grade 1 side effect, and one has to hunt to find a page with the grade 2 & 3s. And I dare say there are many. If I was more pc savy Id post the page , maybe one of my kids will do it for me. Hope your feeling wll enought to get Christmas prep completed.   Michaele

Michaele,

I thought that it might have been an electrolyte imbalance so I started eating bananas, and many other natural sources of electrolytes and even started drinking Gatorade, PowerAide and the like, but nothing helped. I have since learned, however, that protease inhibitors can cause arrhythmias in some people. For example, there have been several peer-reviewed articles on HIV drugs that are classified as protease inhibitors and how they might cause arrhythmias in some patients. These HIV drugs have been around since the mid nineties and thus they have been studied extensively. I'm sure that in the future the same conclusion will be drawn about the HCV protease inhibitors. But as stated, they only cause arrhythmias in some people.

Michaele,

I  had major weight loss on the other treatments, and now wish I had weight loss..my appetite has been voracious! I gained weight at the 4 week check up with doctor..  I think ( I hope) I am leveling off now. 

I am noticing increased gastric motility...but cutting back on certain foods has helped.

My TSH is messed up since starting Harvoni.. Family doctor wants to up the levothyroxin, (which was started due to Infergen screwing up my thyroid), , but I asked her to wait a month when we will retest.  I am feeling so energetic, I am not sure it isn't med induced rather than systemic.

ALSO, I do find I cannot tolerate sugar/carbs... I get I that rush of dizziness after eating them... And that same feeling when I am hungry...Almost like hypoglycemic reaction.. My blood glucose was normal , but will be keeping a log of what aI eat and how I feel.

I hope you soon start feeling better!

I continnue to send prayers Your way!

Ro

The trip to VA was wonderful.. Cold, but full of holiday cheerfulness..

Is that a pic of your home?  It looks so serene..lovely!

Hi Barnacle , its good to know Im not alone.   Michaele

Hi SBNB , was an eletrolyte imbalance causing flutters?  I think Im going to eat more calorie dense foods. My blood sugar was up sunday and Im not diabetic, so I cut back on carbs, As feeliing poorly caused me to lay around and so I was using less glucose at cellular level.  Harvoni can cause an increase in blood sugar, but it usually with diabetics I see your in FL. I lived in Spring Hill 1986-1995  weather was nice.  But to far to stores.  Michaele

Thanks Harv , did/do you feel abd discomfort like bloating or burning ?  My stomach is making alot of grinding noise all the time. I think the gas people are complaining about is in the mix. I think I need to eat foods that are more calorie dense.    Michaele

Michaele wrote:

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Has any one else lost weight on Harvoni ? Tomorrow will begin 3rd week and Im down about 8 - 10 lbs. Its one of the grade 2 side effects and took me forever to find a page confirming it. Michaele

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Yup, I lost about 15lbs. I lost 8lbs in the first 2 weeks. Most of it was water weight. I just wasn't hungry. Sometimes my mouth would water like I was going to get sick, but I didn't. I had some leg cramps, too.  The appetite suppression didn't last long. I'm in my 8th week now and have already gained back 5 lbs.

Stay hydrated! 

In case my case the weight loss was even more significant than in most people because I only weighed 125 lbs at the beginning of treatment, so I was losing about a pound a week (I had to stop treatment at 6 weeks due to heart flutters). Since I stopped treatment, however, I have gained about 15 pounds.

Hi , how fast did you lose weight ?  Thanks.  Michaele

I lost 7 lbs using the Sovaldi/Olysio protocol which is very similar to Harvoni.

Has any one else lost weight on Harvoni ? Tomorrow will begin 3rd week and Im down about 8 - 10 lbs. Its one of the grade 2 side effects and took me forever to find a page confirming it. Michaele