Author Topic: Finished 12 wks of Harvoni Jan 8 and not feeling good (Read 421743 times)

JillLynn · « **on:** January 20, 2015, 07:07:29 am »

Super fatigued daily by 3-4pm and feel achey, weak, and just not good ( like virus sick, not throw up sick)
Also, have had very loose bowels for 3-4 weeks now through out the day and night.
Just wondering if anyone else that has finished Harvoni is feeling like this after treatment?

I am Undetected and all bloodwork is normal. So why the heck do I feel so crappy?

Thank you! Jill

EzAl · « **Reply #1 on:** January 20, 2015, 08:39:19 pm »

JillLynn,

So sorry to hear your having side effects on Harvoni.I went through a Gilead trial back in November 2012 and did not have any side effects at all. I had stage 2 fibrosis and was not feeling sick prior from the infection. Your sides should dissipate shortly. Were you sick prior to treatment and do you have cirrhosis. I was undetectable after week one and remained that through the trial. My liver has completely healed itself and I have resumed a normal life style. It's hard to say why your feeling so crappy, maybe you should ask your doctor if you might have a respiratory infection which I hear is a side effect of Harvoni. If your having loose bowls try eating brown rice, bananas and cheese.

Picnic · « **Reply #2 on:** January 21, 2015, 03:30:49 pm »

It may be an intestinal infection causing the fatigue etc. have you seen a Dr.?

luckysincere · « **Reply #3 on:** January 21, 2015, 07:18:52 pm »

Hi Jill,

I finished 12 weeks Harvoni on 1/15. I did not have any side affects other than headaches initially. My right lower side has had some discomfort, but I was also on Ribavirin for the last 5 weeks. My liver seemed to have a burning sensation after starting the Ribavirin. I just learned yesterday I am undetectable.

I have noticed a little fatigue when I stay on my feet and active all day.

Good luck!

JillLynn · « **Reply #4 on:** January 22, 2015, 08:15:25 am »

thank you for your response Luckysincere, Picnic and EzAi....
....Wow that's interesting that you mentioned respiratory because my Dr. just put me back on all my asthma meds as I have much more wheezing than I have in a long long time.

And maybe I do have an intestinal infection. I went to my family Dr. and didn't mention the loose bowels. Just assumed it was from the harvoni. If it persists, I'll have to go back or I do see my hepatologist on the 28th of this month, and will tell him.

I'm so glad you are all doing so well! I'm actually doing ok.....just not as good as I know I will be and wondered how you Harvoni treatment friends were doing.

I really appreciate your comments so much!

My hepatologist said a blood test at 4 weeks post treatment and another at 12. Then I guess that's it! NO MORE HEP C.
I wish us all to be undetected for the rest of our long lives!

Jill

I

BattleTheBeast · « **Reply #5 on:** January 22, 2015, 08:35:00 am »

Hi JillLynn,

I am still on Harvoni and will be for a while but I have episodes of loose bowels and then it goes away and comes back again. I wonder if it's an infection or something I am eating that makes my intestines go a little nuts but if I go on a BRAT diet for 2-3 days it does seem to help me alot. You may want to try that, just giving your belly a break my help it to adjust to the changes without the Harvoni, it's a really heavy medication and it's an adjustment in your body. Keep up with the fluids, stay away from dairy until you feel better and like others have said, check with your doctor.

Here's the BRAT Diet: The BRAT diet is a bland-food diet that is often recommended for adults and children. BRAT stands for Bananas, Rice, Applesauce and Toast. The BRAT diet can help you recover from an upset stomach or diarrhea for the following reasons: It includes “binding” foods.

Feel better quick girl! Just praying you stay undetected and hit SVR in 8 weeks!

Mel

tucsondee · « **Reply #6 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.

sunrise · « **Reply #7 on:** February 08, 2015, 06:43:45 pm »

Sorry to hear you're not feeling well you guys. Maybe its the after effecte. I am 7 weeks post tx and still real sore joints, and a few others nagging issues. Still UD though and hopefully we will get thru these sides or ailments that come with our conditions. I hope you all are feeling better today. My best wishes are with you all... Blessings Sunrise

sunrise · « **Reply #8 on:** February 08, 2015, 06:46:46 pm »

Oh I was on Sovaldi Olysio combo.... Hi sister JillLynn sending you a virtual warm cup of peach tea with honey and cream :-) hope your tummy feels better. .

Lynn K · « **Reply #9 on:** February 08, 2015, 11:08:08 pm »

Hi tuscondee

Welcome to the forum. And congrats on completing treatment hope you reach SVR 12 of treatment.

Did you have any liver damage before you started treatment?

tucsondee · « **Reply #10 on:** February 09, 2015, 10:39:01 am »

No liver damage. Did have stage 2 fibrosis and a fatty liver. Last biopsy 4 yrs ago 0 fibrosis and no fatty liver. There had been research at Boston Medical on grapefruit juice and Hepatitis C, so, I drank grapefruit juice every day for 2 yrs. I think the contributed to my liver healing itself. Something in the grapefruit keeps the hepatitis from reproducing. It has to be not from concentrate. Florida grapefruit juice in the refridge area is what I used or ate a grapefruit some days.

Am feeling pretty good today. A little sore in my neck but have always had problems there. Had been taking sleeping pill every night while on Harvoni and last night did not. Hopefully each day will get better post treatment. Right now, we are free of Hepatitis!!! My son works at Gilead who makes the Harvoni and he says everyone clears at 4 weeks. It is that 90 day post treatment bloodwork that tells all. Good Luck to you all, we now have a new start on life. I am 60 and had hepatitis since I was 14. This is like my 5 th treatment and the easiest of them all. I am single and did not want to date because I never wanted to tell anyone I had hepatitis. Now I do not have to go through the emotional ups and downs of telling someone. Thank you Lord and Gilead.

tucsondee · « **Reply #11 on:** February 09, 2015, 10:46:59 am »

Hey Mel,
You must take into consideration that your hepatitis leaves through your bowels. It is the way to get rid of all the toxins. I did not have that problem because I take pain meds. It is so important that everyone on the tx keep your bowels moving everyday. Drink plenty of fluids. Good Luck to you all.

Lynn K · « **Reply #12 on:** February 09, 2015, 02:37:15 pm »

Wishing you SVR 12 Tucson. My 5th treatment also but I have had cirrhosis for 7 years so makes it a bit harder cautiously optimistic.

Twelve weeks down today 12 weeks to go!

sugarfree · « **Reply #13 on:** February 09, 2015, 03:59:56 pm »

I'm on week 6 of Harvoni and have been sick and sleepy with nausea and diarrhea the entire time. I was told this could take up until 3 months after treatment to totally clear up. Congratulations on being free of this disease and hang tough

kate0b1 · « **Reply #14 on:** February 10, 2015, 06:17:44 am »

@sugarfree, are you drinking enough water? i am in week 8/12 and if i slack on the water i get nausea and the headache comes back.

kate

JillLynn · « **Reply #15 on:** February 13, 2015, 01:03:14 pm »

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

JillLynn · « **Reply #16 on:** February 13, 2015, 01:08:22 pm »

oh more thing.....my regular DR had put me on prednisone for my asthma......and my HEPATOLOGIST said stay off anything like that for now. It affects your immune system and you need all the help you can get right now so don't take any thing like that.
SO I stopped the advair too since that has steroids in it also.

It's so easy to do the wrong thing without even knowing it. I would have taken the whole script had I not been in to see him the next day.

Didn't even think to ask......my bad!

Mike · « **Reply #17 on:** February 13, 2015, 02:16:54 pm »

Hi JillLyn,

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).

Best wishes, Mike

tucsondee · « **Reply #18 on:** February 14, 2015, 09:15:27 pm »

I have finished my Harvoni 2 weeks ago and since then I have had a sore throat, ear ache, ear is draining, puss coming out of my eyes. I do not know if it is because my immune system was so taxed being on the Harvoni that now my immune system is worn out. I am having pain and since I can not take ibrephrofen, because I lost one kidney I am taking Tylenol. Just want to feel normal again, something I have not felt since 2005 from being on so many treatments. Hope everyone else is doing better than me.

sunrise · « **Reply #19 on:** February 14, 2015, 09:35:29 pm »

Hi tuscondee
Sorry to hear you're not feeling well. Sounds like a secondary infection. Probably should call healthcare provider. A nice cup of tea would feel good though, with honey of course for your throat. I was on S/O tx, but still had weird stuff happen. Hope you feel better real soon. Best wishes Sunrise

Roger · « **Reply #20 on:** February 19, 2015, 03:10:31 pm »

I just thought I'd mention something about joint pain, being tired all the time & brain fog... Since Harvoni killed my HCV, I feel great!

The 12 week Tx was easy, for the most part (I'm comparing 'easy' to all the stories about the horrors of past treatments), especially the last couple weeks of Tx.

Now that the dragon is dead, I have more energy and clarity than I have had in years. No more achy joints! That's BIG, as I thought joint pain was 'aging', nothing to do with HCV. I thought the same thing about brain fog too... isn't that part of aging?

Anyway, I just want to mention these things, as I am amazed how great I feel!

I just built a new rock wall about 15' long and 2' high, filled it with backfill and dirt, and planted roses and herbs in the new bed! I did it with NO joint pain. I am amazed!

JillLynn, it sounds like you might have a 'bug'. Maybe call Gilead and ask them about it. Ask to speak with a nurse. They have been better than my doc's office when it came to Q & A's.

There is hope!

sunrise · « **Reply #21 on:** February 19, 2015, 03:35:33 pm »

Hi Roger,
That is awesome you cleared the virus! We hope the same for all. I was on S/O which is a little different. I hope for me my blood work stays UD, but my joints were effected. I think it is pretty common for us that used S /O. That's great to think with the new ones there are less sides.
Sunrise

JillLynn · « **Reply #22 on:** February 20, 2015, 12:17:24 pm »

ROGER...that is awesome news that you feel so good. Can I ask how old you are? Sometimes I don't know if it's my young age of 60 kicking my butt or if its the harvoni and other treatments I did taking their toll.

I am so happy to hear you feel that energetic and pain free. My hep C dr said a lot of people are feeling that way after harvoni.......so I don't know. I sure don't but I keep on keeping on and am remodeling a new house I just bought but sure do feel like I'm pushing hard quite a bit of the time.

Just hoping and praying we all can be virus free one day. I pray you stay that way.

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. :/ So I have to go back and get that done. Keep up the great feeling!!!!

JillLynn · « **Reply #23 on:** February 20, 2015, 12:21:26 pm »

Mike...thank you for that. My hepatologist is the one who told me to stay off the advair and the prednisone. He's told me that before....but when it comes back I go back on. He stressed how important it is right now to not put anything like that in my system....that my immune system is fighting very hard to keep the virus clear. So I'm not taking any chances. My asthma seems to be ok now. Thankful for that. Just praying that this HCV virus stays gone for good. You take care. always good to hear to hear from you!

sunrise · « **Reply #24 on:** February 20, 2015, 05:56:56 pm »

Hi JillLynn
Sorry to hear you're having a hard time. I am as well, but hopefully we will get better as time goes on. Let us know how your labs work out. I'm curious to see your /improvements. My 12week post is coming up in 3weeks. Kind of nervous, but thankful my 4week post tx. was still clear...blessings Sunrise

Roger · « **Reply #25 on:** February 20, 2015, 06:51:37 pm »

Quote from: JillLynn on February 20, 2015, 12:17:24 pm

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.

JillLynn, I am 65 (you can click the little icon of the person to read whatever a member has filled out - also regarding age)

The place where I get my labs done forgot to include the viral load at week 4 for me too! I had to go back at week 5 to get it done (logistics).

While I was taking Harvoni I would get REALLY fatigued if I exerted myself much. My doc told me to stop all labor (working on my property) and read a book for the next 3 months. That was great advice! I did do a little here and there, but when I began to feel tired I would stop and go recline for a while.

Headaches were minimal, and really more like those associated with lack of water.

Sick to my stomach would come & go, but I had that for so many years a little more intensity wasn't bad, really. It's a very short period of time to treat, and compared to the old Tx's - to me, Harvoni was a walk in the park.

Good luck!

JillLynn · « **Reply #26 on:** February 21, 2015, 11:49:50 am »

Roger.....harvoni was I agree a walk in the park compared to the other treatments. I just thought I'd feel better now that I'm virus free is all. I see some people do feel great like you....and others not so much.

I can't believe they forget your 4 week also?

geez!

I am so hopeful to have more energy soon and not be in so much pain. I did buy a new house and have been working hard on fixing it up so that could be it too. But I wanna keep moving and living to the fullest. Ain't gonna let this get me down....we all know life is too short!
but I probably do push too hard.

JillLynn · « **Reply #27 on:** February 21, 2015, 11:53:19 am »

Sunrise........I'm so thankful your 4 week post treatment was clear...halleluiah!. I'm waiting for your next one too!
Praying we feel better soon!
I just think we all react differently to the treatments. I just hope we BOTH feel so much better soon!
blessings yes and more blessings yes!!!!!

dmclain · « **Reply #28 on:** February 25, 2015, 10:19:09 pm »

Hi Tucsondee! I was just wondering how you are doing? Are you still feeling not so good?

nicole_1234 · « **Reply #29 on:** February 26, 2015, 07:39:25 pm »

Yeah, congrats Sunrise!

I'm 2 days off Harvoni and feel crappy. Treating myself like I would a cold. Soup, water, vitamins. I hope it doesn't last long, feel a bit worse than on the meds.

JillLynn · « **Reply #30 on:** February 27, 2015, 05:48:49 pm »

sending you "get well love and wishes" Nicole.
Are you feeling better today?
Sure hoping so.

Jill

nicole_1234 · « **Reply #31 on:** February 27, 2015, 07:12:48 pm »

Thanks so much Jill. I'm feeling a little better. Less achy and more positive in my head. I got acupuncture and started vitamins and lots of water. Also got my EOT blood test and my ALT 11 AST 18 so looking pretty good!

sunrise · « **Reply #32 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

JillLynn · « **Reply #33 on:** February 28, 2015, 10:05:28 am »

My dr says the same thing sunrise.....he says any symptoms I have are NOT from the TX. I got cortisone in the tendons of both knees yesterday and have done some massage.

Just don't feel like going to any more DR's right now. Someone mentioned chiropractor and I don't even feel like doing that.

I'm hoping time too Sunrise..........some could just be my age.....alot of my friends that are 60 feel the aches and pains too. It does suck! and I don't take advil or anything and they all do everyday .....so I guess I could be in less pain if I took something. Just don't want to because I want to stay off everything until I'm home free at SVR12!!!

clearing the virus like you said is the MAIN thing right now........

Nicole...glad you are doing a bit better now....yay!

nicole_1234 · « **Reply #34 on:** February 28, 2015, 07:35:51 pm »

I wonder how they could know it's not from tx! These drugs are so brand new. And if you take any drug for 3 months I think it's normal your body might react in different ways. Ugh! Sometimes these doctors are so single minded. The scope of the human body is elaborate and intricate. Just because the drugs have left your system doesn't mean it's not still recovering in different ways.

sunrise · « **Reply #35 on:** February 28, 2015, 07:57:21 pm »

I agree and l think there is more to it. Say there is a class action and we might need our files with all sides listed. I hope that never happens, but I would like to have my ducks in a row.if it ever did. Being that they are new, it would be stupid not to. I thought these companies want to know of any weird things. My problem is I was taking 2 different capsules from 2diff cos. So who knows I just want to feel better.. thanks for letting me rant...Blessings Sunrise

Katie · « **Reply #36 on:** March 06, 2015, 06:10:26 pm »

Hi Everyone,

I have posted this comment on a couple threads as my friends are spread out a bit. Easier than typing everything new.

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 have a doctor appointment next Thursday. I just stopped by the office for the results today as I didn't want to wait another week. All of my other blood work is perfect, which is good news.

During week 9 & 10, when horrible fatigue hit me and depression (which I've NEVER had before) I felt something wasn't going right as I felt so good for the first 8 weeks. Weeks 11 & 12 I felt back to being my happy self and accomplished a lot on my remodel. Who knows. The nurse said she would call and speak to Gilliead to figure out what the next step is and would have the information on Thursday. I did pose some questions for her to ask.

I am having some discomfort in the liver area, and I wear down fast. Another thing I noticed is my eyes look tired and like they do when I am sick so stuif is still going on even though I feel so much better. I really hate this alien monster parasite!

She reminded me that this is such a new drug that everyone is learning and this is NOT considered a treatment failure at this point.

So there it is! I am going to finish the last of my trim today and do some cleanup as the carpenter will be back on Monday. I must keep busy and progress is good. This is just a small step backwards but it will all work out!

Hope you are all doing well and I know we will succeed in getting free of this tyrant parasite!

You aren't rid of me yet!

Katie

Islandgirl · « **Reply #37 on:** March 06, 2015, 06:56:50 pm »

Katie, I know I posted in another area to you but meant to tell you also that this paragraph describes what's going on with me too - I know we are tracking on the same time frame -

I am having some discomfort in the liver area, and I wear down fast. Another thing I noticed is my eyes look tired and like they do when I am sick so stuif is still going on even though I feel so much better. I really hate this alien monster parasite!

Love you sis and am sending you positive thoughts and prayers every day. ...Islandgirl

nicole_1234 · « **Reply #38 on:** March 06, 2015, 08:11:07 pm »

Hey Katie. I'm sorry to have disappeared, did a 5 day retreat to Big Sur to just cleanse from the meds and try to relax. I'm so sad to come back to this news. To come so close and it's not completely gone for you. Dammit!!!! Did you have a test at 4 or 8 that was UND and then it came back? I'm so confused.

I hope you get some good info from the doctor soon about next steps and it's true this is all very new. I'm sure there will be new equations coming for length of treatment.

I haven't gotten my vl for EOT yet but should know early next week.

My heart is with you sister for a once and for all cure.

Love nicole

Katie · « **Reply #39 on:** March 06, 2015, 08:27:52 pm »

Nicole! It is so good to hear from you! I was worried but now remember you mentioning going for some R&R. Don't fret over me. I remember someone stating that you could have a "false positive" and then later be UD. Even if not, I am OK with it. I really wanted it behind me and behind all of us, but I have to say, when I got such horrible fatigue a few weeks ago, I was concerned about it and recently have discomfort in the liver area. I'll let you all know what the doctor says on Thursday.

I had a test at 4 weeks and it came back at VL= 59, so maybe I have the super virus! You'd think another 8 weeks would have taken care of those without a problem! HA! It now is somewhere between 1-11 so that is still an improvement and it will all work out. I just hope we can get what we need to kick it's butt before it does a mass replication again.

Hey Nicole, Check out the Side Effects thread as I posted a couple pictures.

Thanks for your concern and good wishes, and Thank you too Island Girl. It means a lot to me to have both of you by my side and sending me the healing light. Back at you!

Katie

Roger · « **Reply #40 on:** March 06, 2015, 08:34:29 pm »

Quote from: Katie on March 06, 2015, 06:10:26 pm

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.

Katie,
I think I am confused... I "thought" that the standard EOT reading <15 IU/ml is considered UND, as the rating systems is not exact down to 0.

Mike? Are you out there to help with this?

Katie · « **Reply #41 on:** March 06, 2015, 08:50:00 pm »

Hi Roger, According to the nurse, there were still some little monsters but yes, too small for the sensitivity of the test. It still came back as Detected. I would love if you are right and I have to wait for 12 weeks to check if there were actually any to replicate.

I will discuss it with my doctor on Thursday. Since we are some of the first participants and we tend to research, I think many times we know more of what is actually going on than the health care workers. They just have better resources to get more info when they have time to do it.

It is so confusing but part of it is because no one is really sure. I feel we are a big part of the trials and our results will help with the future treatment.

It would be great to hear back from Mike.

Katie

Katie · « **Reply #42 on:** March 06, 2015, 08:53:43 pm »

I like this quote from a book I just finished by Louise Erdrich. Good Book!

“Life will break you. Nobody can protect you from that, and living alone won't either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.”

I find this comforting. Hope you all do too.

nicole_1234 · « **Reply #43 on:** March 06, 2015, 10:58:19 pm »

Wow those are words to live by Katie, thank you for sharing that. And may I ask the title of the book? I would love to read it.

I really admire your positivity. You carry such grace, it's truly inspiring. I'm going to gather courage from your strength as my results come in no matter the outcome. Thank you for it.

And also congrats on all the hard work on the house! Looks amazing and I can't believe you did all that in these past few weeks!

x nicole

Katie · « **Reply #44 on:** March 06, 2015, 11:24:57 pm »

Thanks for the kind words Nicole. The book is The Painted Drum. She has written quite a few and I enjoy her work.

I didn't do all of that in a few weeks. My current project is the spare room and my bedroom with lots of work going into them as well. I can't show pictures of that as everything is a mess yet so when they are a bit more organized I'll share photos.

I've been doing one room at a time. First was the bathroom, then the laundry room, then I had a garage built to eliminate steps into the house (garage entry though the laundry room), then I painted the siding on my house, and now the bedrooms.

When this is done I am taking a break and then it will be time to get in the garden. I am looking forward to that.

I am not sure if the nurse really gave me correct information. Since the sensitivity of the test is 12 or less, how does it tell if I am still detected? Couldn't I be zero? Since the medication was probably still in my system that may not be relevant. The 12 week test is what counts to see if replication has occurred and if it has the sensitivity would pick it up as it would be greater than 12. Does this make any sense?

It seems we went round and round over this a few months back. I will discuss it with my doctor on Thursday!

Healing beautiful light to you and all! Best wishes for a wonderful weekend!

Katie

Lynn K · « **Reply #45 on:** March 07, 2015, 02:21:52 am »

Hi Katie

Hoping some good news later for you.

The test can count the viruses down to less than 12 but say there are 11 IU/mL the test cannot tell the difference between 11 or say 5 or 1. But the test can tell the virus is still present at least that is my somewhat limited understanding

My week 4 test said not detected so as best the test can determine the virus if present is below the level the test can detect. Even not detected does not necessarily mean gone as I found out last year on Sovaldi Olysio I was not detected at week 4 and at EOT 12 weeks but when tested 12 weeks post the virus was back above 4 million just like before treatment.

Hoping your results are better than mine like you said maybe the meds are still working a bit

Good luck

dragonslayer · « **Reply #46 on:** March 07, 2015, 10:48:56 am »

Katie, so sorry to read of your EOT result.. As you may recall, I too was detected at EOT with Harvoni... My plan is to retest next month at the approx. 12wk post treatment marker, about a week before my scheduled doctor appt.. He mentioned to me on the phone that Gilead doesnt have numbers yet to guide them as to making recommendations regarding the efficacy of retreating, and what the protocol would be relative to duration, etc.. To that end, they are starting to run clinical trials, one of which would be in my area, to determine just what to do with Harvoni failures regarding retreatment. So that looks like it would be one option. . Viekira Pak would probably be another, although the requisite ribavirin inclusion for GT1 doesnt thrill me..Thirdly would be the option of waiting for additional drugs which will be available later this year.. Ill know more after my appt with him next month.

Have you discussed any alternatives with your providers? Are you scheduled for a follow up test at 12 wks post treatment to get the definitive result? As a fellow non UNDer, I want to follow your case.. Keep us apprised, and here's hoping for an UND next blood test.

Islandgirl · « **Reply #47 on:** March 07, 2015, 11:05:00 am »

Katie, I loved the quote from your book! Like Nicole, I think I have to have it

Did the nurse give or show you a copy of the test results? I think the way it's written would be important to see. Keep your spirits up and know that we are praying your meeting with the doc will shed a more positive light on things.

Dragonslayer, I'm sure hoping the best for you when you retest! I have to tell you guys, the closer my EOT test on the 25th of this month (ended treatment 2/25) and doc visit on April 2nd are making me more apprehensive every day!

Katie, you are one of the most positive and accepting people I've ever encountered. You have my admiration and are an inspiration for us all - in so many ways. BTW, I tried to figure out how to post some pics of my yard but just couldn't figure it out.... Wishing us all UND permanently! ...Islandgirl

badbradley · « **Reply #48 on:** March 07, 2015, 11:23:41 am »

Hi Katie, You are in my thoughts today. So disappointing. Prayers are up for you! We will win this battle!

Dragonslayer Best wishes to you on your upcoming test and Doc appt. I will be discussing further treatment options with Hepatologist on April 9. I would prefer to wait on retreating for a while. I treated on S/O, UD at EOT, relapse 12wks post. I am interested in "real world" stats vs trial stats anymore!

Islandgirl Good luck to you on your tests also. May we all be free of hcv forever!

Brad

Roger · « **Reply #49 on:** March 07, 2015, 01:01:17 pm »

I remember that Mike explained this subject very well, a few weeks ago. I just did a search for his name and the word viral. Here is a link - scroll down to the 2nd post, which is Mike's:

http://forums.hepmag.com/index.php?topic=1593.msg5645#msg5645

I remember another explanation on the board, by someone else too, but have been unable to locate it. Hope this helps... Mike? Are you out there?

Islandgirl · « **Reply #50 on:** March 07, 2015, 07:39:23 pm »

Thanks Brad. I'm wishing the best for you too and keep you in my prayers. I've never forgotten that you are one of the first, if not the very first, people to answer my post and encourage me when I first joined the Forum. You have a special place in my heart and I expect many of us on the Forum feel the same way. Please keep us up on how and what you're doing - I hope April 9 discussion will bring good news for you. As you said, may we all be free of hcv forever! ...Islandgirl

Katie · « **Reply #51 on:** March 07, 2015, 08:12:48 pm »

Thanks Brad, Thanks Roger, Thanks Paul, Thanks Lynn and Island Girl and anyone else I might have missed. Your thoughts and support are so important to me.

I copied and saved a bunch of stuff and came across this. Someone posted this awhile back but I just wanted to let you know I am not giving up...never will!

Relapse was a secondary endpoint, which was defined as HCV RNA greater than or equal to LLOQ (lower limit of quantification of 25 IU/mL In my case the test was < 15) with 2 consecutive values or last available post-treatment measurement during the post-treatment period after achieving HCV RNA less than LLOQ at end of treatment.

The fact that they mentioned 2 consecutive values... implies that the RNA measurement test is not 100% accurate. lower limit of quantification (LLOQ) of 25 IU/mL.

This came from:

This "25" threshold (IU/mL) is actually mentioned in the detailed Harvoni product insert:
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

If you search for "25" (in the .pdf viewer), it'll eventually take you to

So I am anxious to talk to my doctor, and also hearing what Brad and Paul has to say on this. Have you guys had a second test on the VL yet?

I finished off the remainder of my trim and it is drying so will be all set for the carpenter on Monday! YAY! I'll be moving back into my bedroom soon, and clean up the mess in the living room. That will do wonders for my mood and lowering of my stress level. Then you'll get more pictures! In the middle of all that I have an appointment for PT with cranial/sacrum technique and acupuncture, and of course the 12th is my doctors appointment. It's going to be one busy week.

I did submit a question to Gilead on my Detected report, and will let you know what their response is.

Thanks again everyone.

Katie

Islandgirl · « **Reply #52 on:** March 07, 2015, 09:06:02 pm »

Katie, that all sounds really positive - can't wait to hear what you find out! Congrats on finishing the trim, what a great sense of accomplishment you must have getting this all done!! Glad you are taking good care of yourself - you're always in my prayers; feel a hug, ...Islandgirl

charly8 · « **Reply #53 on:** March 09, 2015, 03:36:02 pm »

Wow Katie sorry to hear.

It seems like a lot more people are relapsing than the study data would suggest. I can count 3 on this board and 2 on another board that have relapsed on Harvoni. That is a lot considering that not that many people have even reached their EOT bloodwork results yet.

Could it be that the relapse rates for Harvoni are going to be higher in the real world than during the initial testing??

Can we determine how many Harvoni relapsers we have had on this board?

Lynn K · « **Reply #54 on:** March 09, 2015, 03:40:37 pm »

Real world results are seldom as predicted based on clinical trials.

Small groups of closely monitored patients who generally are highly motivated to treat results are different once you get the meds out into the general public.

Katie · « **Reply #55 on:** March 09, 2015, 03:49:51 pm »

Guess we will have to wait and see, Charly. I am not giving up at this point. I had so many benefits from Harvoni, and I am basically healthy in every other aspect that it seems I should have easily been virus free.

Everyone is different and it could be that their are fragmented virus particles detected. just hanging out that can't even replicate. Remember, Harvoni does NOT kill the virus, it only makes it impossible to replicate and they then disintegrate and breakdown. Viruses aren't a living thing. I relate them to a floating seed like a dandelion that only is viable until it breaks apart and can't reseed. All I know is that viruses are scary, invasive parasites with no purpose other than to disrupt and destroy, and I am ready to be rid of all of them.

We are the true test on this wonderful breakthrough and if needed, they will come up with another option. Maybe all or some of us just need to be on it a bit longer, or maybe the EOT test isn't really accurate. Like I said, we will just have to wait and see.

Katie

Katie · « **Reply #56 on:** March 09, 2015, 03:51:01 pm »

Update on remodel: grrrrrr carpenter called and said a big job came up that he couldn't turn down so I am on HOLD. Not happy.....but I really like him and he does great work. He's just branching out on his own and can't afford to pass up on a good paying job with duration. I even baked him an apple pie, from my home grown apples! He groaned when I told him that. Serves him right! HA!

Just had to share that as I have been talking about my remodel on and off for quite awhile now.

It will get there and I'll be a happy camper. It just hasn't been that good of a week for me. That's 2. Wonder what is coming next? (The old saying about trouble coming in threes!)

Katie

nicole_1234 · « **Reply #57 on:** March 09, 2015, 04:14:27 pm »

Katie I hope you get some answers soon. The good news is the drugs eradicated at least most of the virus so if not completely gone it seems logical you will just need a longer treatment. I'm sure something will work 100% across the board in the next year or two ahead, we are just at the very beginning of an absolute cure.

A homemade pie sounds delicious! Too bad for the carpenter. Hope your week picks up and there's some good news next.

Katie · « **Reply #58 on:** March 11, 2015, 03:09:23 pm »

Posted on Side Effects thread with history for new members.

Hi everyone ! Thanks for you information Doug! I am right behind you at ending treatment at 12 weeks. I also do not know how or when I became infected but was diagnosed over 9 years ago seeing a doctor for a sinus infection which I couldn't shake. All of my blood work had been perfect up to that point but I was fatigued and caught every bug that came around. Not only was my Vit D level bottomed out but my ALT/AST was above normal alerting my doctor. I was also experiencing brain fog and insomnia which continued and escalated over the following 9 years, which eventually led to my retirement in 2013. I rejected all previous treatment due to low cure rate and bad side effects so was excited about Harvoni.

My treatment was terrific 85% of the time with all Hep C side effect diminishing and actually disappearing (returning weeks 9 &10 and then gone again). Being able to sleep was remarkable as I haven't had good rest for over a decade!

Stats: GT 1a, VL fluctuated from 2.5 million to 16 million where it bounced around and the lowest being when I began treatment. AST/ALT normal 90% of the time.

My 4 week test came back VL 59. My end of treatment test came back less than 12 but stated detected.

NEW INFO:
I see my doctor tomorrow, but emailed Gilead and they called me today. They explained the same to me as what they told Paul. To summarize it to the best of my ability, the gentleman said the trial blood work sensitivity was, less than 25 IU/mL. There isn't a test that goes down to Zero. The sensitivity has improved since then where my test level is now less than 12 and it depends on who is doing your test. The recommendation is to see if replication has occurred at 12 weeks post treatment. At that time if it comes back below the test sensitivity, they consider the treatment a success, and having another test at 24 weeks is a good idea.

What I am getting from that, is that my treatment is not a failure or considered a relapse at this time and the lab is stating "detected" since they can not count down to zero. Remember, the virus can only be seen with an electron microscope since it is so tiny. I will ask my doctor about that today, as what would it take for Undetected on my results.

Since so many here are stating they have received Undetected on their blood work, it is confusing me. Lynn has tried to explain this to me over the last few months but I still don't quite get it. Sorry Lynn!

So that being said...the waiting game is on, but I feel confident and hopeful for all of us to rid ourselves of this alien parasitic monster and am going on with my life, until May 20th thinking I am virus free unless I start feeling crappy and having the Hep C symptoms return. I'll be keeping in touch so please keep posting and giving support to each other as it is a true blessing to have all of you here.

Katie

Lynn K · « **Reply #59 on:** March 11, 2015, 03:24:03 pm »

Heck I don't know anything except the way my lab report which specifically says "Not Detected" and my lab sensitivity lower limit of sensitivity is less than 15 IU/mL. A possible result my lab could report is "less than 15 detected" or what my report says "Not detected"

What that means if the larger scheme of things I have no idea

Katie · « **Reply #60 on:** March 11, 2015, 03:31:50 pm »

Hey Lynn...you know a lot and am glad you feel like I do. I read and read and research and the questions I have are never truly explained. I value your input more than you know. I think it is just a waiting game, so I'll wait.

Soon I will get into my garden and dig dirt. That will keep me occupied and happy!

Katie

Lukey · « **Reply #61 on:** March 12, 2015, 07:26:29 pm »

Hi,

I thought I'd add my update here.
I finished my 8 weeks of Harvoni on March 3, 2015, about 9 days ago.
I've had very good results with it so far but I do have some lingering SFX.
I have intermittent mild headache, I tire more easily, and I tend to have mild constipation at times.
I go to a gym 3 mornings a week, and by mid day on gym days, I'm ready to relax a while and have a cat nap.
I go back to see if I have a 3 week SVR next week, and then again about 3 months later. Compared to Tx's I've read about, I'm sure this is mild, and esp if I stay Und and continue to have normal LFTs.

Best wishes to you all,

Joe

nicole_1234 · « **Reply #62 on:** March 12, 2015, 08:11:47 pm »

Hey Joe,

My nurse told me I was a little bit anemic at EOT which could have to do with my lingering fatigue. I would see if that's maybe the same in your case?

Feeling much better 2 weeks off of tx but I'm going to get an herbal iron supplement called Floradix today that really helped me build back my red blood cells when I was anemic from past treatment. http://www.vitaminshoppe.com/p/flora-floradix-iron-herbs-8-5-fl-oz/fl-1007

Nicole

Katie · « **Reply #63 on:** March 12, 2015, 09:01:32 pm »

Good luck to you Joe! Hopefully your energy level will improve and you can enjoy being HepC FREE!

I had a long talk with my doctor today and he wants a test again Mid April. He said I definitely responded well to the treatment and the detected amount is so small I should not stress over it. He is going to call the liver center in Seattle with some of the questions I posed and some he has. He stated they have so much more experience and a department that strictly deals with Hepatitis.

Good news for all of you waiting on your VL results, is that he said I am the only one, so far, that he has treated and wasn't Undetected at their EOT. Leave it to me! I always have the oddball health issues, but so far nothing serious other than the HepC so I am a lucky girl. I think it is all going to be OK, and if not, then I will deal with it at that time. For now, Don't Worry, Be Happy!

Katie

Lukey · « **Reply #64 on:** March 12, 2015, 09:19:38 pm »

Hi -

Thank you two.
In the 80s I had to take iron pills every day or I'd feel very tired. then I got too much high tech iron in me and had to stop all iron, even iron rich foods. I haven't taken iron in ages and have tended to have elevated serum ferritin. If I eat red meat every day, it used to cause my ferritin to elevate too much. Not out of the normal range, but in the upper normal range. Lately I've only ate beef up to about 3 or 4 meals a week. I just picked up 2 pounds of grass fed beef today and am going to eat some tomorrow.
Thanks for the idea. I'll ask them to take a look at my iron and RBC, etc., next week.

I don't seem to handle Turmeric too well now, after Harvoni. I noticed that also on Tx, that if I took Turmeric in my food, I'd feel it in my throat, as if I had some type of an imbalance. I think the Harvoni caused a type of imbalance, but I think it should even out eventually. Maybe something to do with sulfur.

On Tx I'd often get mild palpitations soon after my mid day dose of Harvoni.
My RBC and Hemoglobin looked fine in my last blood test.

Joe

Lukey · « **Reply #65 on:** March 12, 2015, 09:22:00 pm »

Katy,

Good chance you'll test very low the next time too.
I would have hated to have gotten that result, but if all else looks good, stay positive. I have doubts there will be any replication and I sure hope there isn't.

Joe

Lynn K · « **Reply #66 on:** March 13, 2015, 02:04:06 pm »

Hi Katie

Which liver center in Seattle UW, Swedish? My doctor is at the Swedish liver center.

Hi Nicole I did not know Harvoni had anemia as a side I am already super anemic from Ribavirin been on that for 9 weeks now and hemoglobin holding at 10.0 I hope the Harvoni doesn't push me even further down oh well if it does just a little over 7 more weeks to go

Congrats on finishing up treatment Joe hope you get backup to full speed ahead soon!

Katie · « **Reply #67 on:** March 13, 2015, 02:30:27 pm »

Hi Lynn...My doctor didn't say and there are a couple. I do know they refer patients to Swedish for many things so that's my guess.

One thing I have noticed is the difference in sensitivity with different labs and the tests they use. The trials were <25 IU/mL for LOQ but I don't now what the LOD (level of detection) was. I have just submitted that question to them. It was posted on here for a test of <15 LOQ and the LOD was 11-14 so that makes me interested as a 0-10 would be an Undetected result. My lab did not specify LOD and is something I need to ask about. I tried to research it last night and couldn't find it however did see where they referenced the LOD but not actual number.

In my mind, it seems the trials LOD would be higher due to the sensitivity and using that method may have given me an undetected result. It really doesn't matter as it is what it is I just like putting things in proper perspective so it makes sense to me.

Anywho...That's enough of that and I'll let it go. It's just I like those type of details so I can process how they come up with these things. I read a lot last night and how they figured out the range levels. They actually took blood samples from those infected with Hep C and diluted their blood to see at what levels it would show up. I found that interesting. I know....I'm weird that way.

Congratulations to all who are moving forward and I wish you a healthy, productive loving life! I will be right behind you!

dragonslayer · « **Reply #68 on:** March 13, 2015, 03:44:22 pm »

HI Katie,

Seems like you and I are about the only ones here Ive heard from that tested Detected at EOT... As you recall, I was detected with a reading of 29. You were Detected with a reading somewhere below 12. 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.

Hope you're doing ok...

Lukey · « **Reply #69 on:** March 13, 2015, 06:43:25 pm »

Hi -
Crossing my fingers for you two detected people.

Another side effect I got from Harvoni and still have 11 days after EOT is chilling.
It's colder here today and I just put on some fleece pants because my lower legs and feet were cold. I wore long johns often on Tx and turned up the heat more than I usually do. I'm not sure if it affected my thyroid or what. I may ask them if they'll check that next week.

Joe

Bituman · « **Reply #70 on:** March 13, 2015, 11:13:33 pm »

Quote from: dragonslayer on March 13, 2015, 03:44:22 pm

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.

I think you are doing the right thing by not waiting and getting tested now. Hoping for a good result for you DS.

Bob

kate0b1 · « **Reply #71 on:** March 14, 2015, 07:19:36 am »

@paul, im glad you are getting the tests sooner, i have been wondering how long you would hold out. When i finished tx early last time (only by two weeks) my doc wanted to wait 12 weeks for labs but i only made it 8 weeks before i nagged him into doing them lol. On that note, i was done meds on thursday and was supposed to get labs on friday but asked to wait until 4 weeks (somewhere someone said 4 weeks may be the relapse point), my doc is pretty flexible and was ok with that (or he was just trying to get me go away lol). so now here i am waiting for april 9th.
@katie, what about the pie you were supposed to be sending me? the cabinets are done and this w/e i am painting the walls (they don't go now

)
have a good w/e everyone
kate

JoeL · « **Reply #72 on:** March 15, 2015, 03:28:21 pm »

sorry Jill, I just finished my 12 week protocol on fri 13th. I too have been feeling awful. After the first two weeks I was put on ribavirin also to help achieve lower numbers. After 7 weeks, I had to stop ribavirin because of major respiratory issues. Needed to take rescue inhaler in the late afternoon. The headaches are manageable but the fatigue is unreal. but I need to stay positive through these issues and hoping that this forth treatment will be the best and last. Best of luck!

Mike · « **Reply #73 on:** March 15, 2015, 04:35:44 pm »

Hey Joe,

Congrats on getting through treatment!! I know the Ribavirin can be rough (been there and done that); but you finished and should be feeling better day by day.

The dragon should be slayed and you'll find out in 12 weeks!

Best wishes, Mike

JillLynn · « **Reply #74 on:** March 17, 2015, 09:27:59 am »

Hi Joe..........I sure hope you are feeling better soon. Congratulations on finishing your treatment!

My lungs were messed up too for a short while after treatment but I feel so good now and am so grateful for that.

I'll be thinking about you......and sending some prayers. Keep us posted!

Katie · « **Reply #75 on:** March 17, 2015, 08:34:11 pm »

I just received a call from Gilead in regards to a question I posed to them on the Level of Detection (LOD) for their trial tests of <25 IU/mL. LOD for the trials was 9 IU/mL. This means those undetected could have had a VL of 1-8. I now need to see what the LOD is for the test my lab ran for comparison. The gal I spoke with agreed with the results of the small test results that Dragonslayer (on Hep C Research News & Studies) posted where those showing low levels at the end of treatment can clear it post treatment.

She was also interested in my side effects from the treatment as she does report anything experienced by us and later after it is analyzed will be available in a report. So it would be good for everyone to report your side effects. The more data they have the more complete their analysis will be.

I am feeling good, and sleeping like a baby 20 days post treatment, so I feel very hopeful I am clear and cured and I got my remodel done TODAY! Now my work really begins cleaning & getting things organized, thrown out and donated. It's going to take Spring Housecleaning to a who new level!

Katie

hepcme · « **Reply #76 on:** March 17, 2015, 11:19:25 pm »

geno 1a , stage 2-3 , VL 2ml....started Harvoni Dec 6, 2014
Ditto...finished 8 weeks of Harvoni...January 30th - 6 weeks post TX now...and don't feel good..aching in shoulders, thighs, back, arms, weak and have energy for a short day...3-4pm ready to go to bed and rest...
I am blaming it on drinking power green juices and now have a release of toxins in my system that can't get flushed out...I am now cutting down to one green in smoothies instead of three greens and only smoothie every other day..I was doing OK before that ..now I am thinking maybe it is a flu bug going around as people are saying they are sick but I feel fine, just ache all over and tire quickly...I keep trying to find the right food to get protein and healthy choices...I hope it is just a healing reaction..the liver does still need to rejeuvenate..it is only 6 weeks out from taking a very strong drug...I will worry when it gets 6 months and thingsa are not improving ...ahhhhhh !!!

hepcme · « **Reply #77 on:** March 17, 2015, 11:45:53 pm »

I also have labored breathing never know when it is going to come on but it is scarey sometimes like I been smoking...quit that long time ago ..but toxins will reignite old injuries I hear...
Now I am not sleeping thru the night ...waking up on the hour every hour and go back to sleep...my eyes are still blurry but the vision itself is clearer than ever..
I never had bags under eyes ...do now...
drinking alot of water and trying maybe to flush out the old dead viruses yet..??
and toxins that the juicing has caused...
eat prunes...now that is showing our age

CHepCFree · « **Reply #78 on:** March 20, 2015, 06:03:46 pm »

Hi HepCMe - I saw your post about labored breathing. I have finished Harvoni 12 weeks and feel worse than I ever have. I was undetected at six weeks and am now post 3 weeks. I have constant ringing in my ears and could barely breath over this past weekend. Indeed, very scary. In thinking about it and researching, it must have been an asthma attack...something I have NEVER had before. Both ringing and asthma is related to inflammation. My head also feels very full and I feel somewhat dizzy...not like vertigo which is dizzy on movement. I'm wondering if this Harvoni has created inflammation in my body. I have an appt with my GP on Tuesday and a follow-up with my ENT on Friday. My gastro has basically said he has no interest in what I'm experiencing now and has sent me elsewhere. I have reporting the ringing to both Gilead and FDA previously as this has been ongoing since week 2. I now will report the breathing difficulty. Also having some problems with sleep. I too am drinking water like crazy and going to the sauna to hopefully sweat out whatever this is.

Congrats to all who feel great!!!!!

Katie · « **Reply #79 on:** March 20, 2015, 06:16:32 pm »

CHepCFree: That sounds terrible! Remember it is the flu season so maybe you have caught a bug??? There have been others who have come down with a sinus infection and it sounds similar to your symptoms. I had a sinus infection 10 years ago that lasted a year and on and off antibiotics the entire time. That is what caused my permanent tinnitus. It is so irritating. I SO miss the sound of silence. Because of nasal congestion the mucus gets into your lungs and causes breathing issues. You probably are aware of all of this but sometimes a reminder is beneficial.

Here's hoping you feel better soon and your post treatment tests show you are and will always be HepCFREE!

Katie

Katie · « **Reply #80 on:** March 20, 2015, 06:22:47 pm »

Hepcme: Sorry you are suffering as well, and you are right, it could be a bug. Doesn't make sense you are feeling worse off treatment than on. Hope you have relief soon. Have you had any post treatment tests yet? If your symptoms continue, I'd see your doctor, especially if you have a fever!

Good luck to you and take care.

Katie

Islandgirl · « **Reply #81 on:** March 28, 2015, 11:46:44 am »

STILL UNDETECTED @ 1 MONTH POST 12 WK HARVONI TX!!!!!!!!!!! (re-posted from another site)

Good morning everyone, and welcome to all our new Forum Family members too! Thanks also for everyone's encouragement while I've been feeling so cr*%*y, Meg and Katie I couldn't do without you guys! Physically I'm still not feeling great but emotionally - WOW such good news! I was really frightened that I'd relapsed or something.

This morning I called the lab and found my results were in so went over and picked up copies - couldn't wait until next week

The Hep C viral load tests both still show me as NOT DETECTED! Fantastic news!!!!!!!!!!!!

However, the other test re my blood work will need to be explained by the doc. Most things looked within normal limits, but my platelet count is 124 which is abnormally low (140 to 400 range is where it should fall) That may explain why I have easily exhausted energy...

Also, something called Eosinophil is abnormally high at 6 (normal range is 0 to 5 - so need to find out what that's about. It's possible that these could be the aftermath of the Harvoni that destroyed the Hep C virus?

Anyway, the HCV is still undetected and I now anticipate it still being undetected in September - at which time I can say CURED!!

Hugs and healing energy for all of us! ....Islandgirl

nicole_1234 · « **Reply #82 on:** March 28, 2015, 02:24:15 pm »

Island girl that's so awesome!!!!!!! So happy for you, you crossed another hurdle and it's truly looking good from here on out!! Odds are greatly in your favor. I am scheduled for a 6 week post tx test instead of 4, so in a few weeks I'll know too. I'm dreading taking the test, that phone call. Trying to prepare myself mentally in case I'm one of the few that didn't stick. But your news is good news for all of us and cheering you on till September!!!!

Katie · « **Reply #83 on:** March 28, 2015, 02:45:34 pm »

I am doing the HAPPY DANCE for you Island Girl!!! What GREAT news!

Nicole: Hi! Everything is going to be great for you too. I know you have got this, all of us do. I can say that even though I was still detected at EOT as there is promising info on strong responders clearing if they had a low viral detection. I will be tested in a couple weeks again and decided not to worry about it. I am feeling good and it is what it is so it is onward!

You are my sisters and what happens to you happens to me. I am feeling pure joy and wonderful light for both of you.

Katie

Islandgirl · « **Reply #84 on:** March 28, 2015, 03:02:11 pm »

Nicole and Katie, thanks so much, and to quote Katie...

"You are my sisters and what happens to you happens to me. I am feeling pure joy and wonderful light for both of you"

I just know we're all going to be fine and will be doing the CURED happy dance this year!!!!!!!! Love you guys!

nicole_1234 · « **Reply #85 on:** March 28, 2015, 03:46:12 pm »

Thanks katie and Island girl, it's nice to feel the support. Katie I really hope that the medicine just kept working and you will be clear next test! I've read the same as you about people not UND last test but still clearing. You were so close it seems highly possible.

Island girl I saw you were posting about some depression the last couple weeks and I'm really feeling it too. I guess it's normal with such a huge impact these tests will have on our lives. You must feel so much relief now. It's hard to fathom being free of this. And my body is also not in great shape. Been getting these chronic yeast infections (starting 6 months before the treatment) and nothing the doctors seem to give me helps. I'm not even convinced it's truly what it is, I've been to 5 doctors and had 3 different diagnosis so far and the doctors are so flaky, I asked them to do a specific test to see if it's normal candida or something else and she just shrugged and said "I'll ask the lab to do that but the never do it right". So why bother??? It's gross and I feel like my body is so taxed and it hates me. Anyway, boohoo poor me. I just needed to vent. In the scheme of things there's much worse things others have to deal with so I should feel lucky. I AM so grateful I got to do this treatment.

I'm going to go back to the ultra strict diet I was on for 3 weeks and try to stick with it longer. My acupuncturist said at least one year. No sweets, no carbs, no fruit, only red meat 2x a week. Mostly baked fish and veggies, soups.. She thinks it's my liver that needs to heal and the other problems will go away. I'm sure she's right.

Anyway, I know after these tests are done and I'm still clear, the depression will lift. So I'm just allowing myself to hold space for it.

Katie · « **Reply #86 on:** March 28, 2015, 04:43:56 pm »

Nicole: Good luck with your tests and if at all possible try and put it out of your mind. The time will go by faster that way and everyone I know of on this forum who was UD at EOT has remained that way with Harvoni. The results are just now coming in and it is looking good. There are 3 of us that came back detected @ EOT and I really believe we will succeed too. Keep the faith sister.

I sent you a pm, Nicole. Hope it helps a little.

You are in my thoughts!

Katie

Islandgirl · « **Reply #87 on:** March 28, 2015, 05:01:31 pm »

Nicole, I'm so sorry about the yeast infections - miserable stuff. I'm furious about your doc's response to your request for a different type of test - bet if it were her she'd have a different attitude! Grrrrrrr Hang in there. Maybe the diet will help that too as I've heard that omitting sugar can be beneficial (hard to do though, poor baby)

On the apprehension about the testing - I totally get it. I was so down about it and worried I'd relapsed or something since I've not been feeling so good - I was actually fearful and dreading finding out. I know you'll get a good report. I'm sending you tons of positive thoughts and energy! For you too, Katie. We're gonna make it! Love you guys BIG HUG ...Islandgirl

JillLynn · « **Reply #88 on:** March 29, 2015, 10:03:35 am »

Hi all!

just noticed April 6 is my 12 week post treatment bloodtest. I'm told if I'm undetected I am virus free for good.

Although they did give me a 24 week post treatment test too..........hmmmmm...... just to be doubly sure I guess. Sure hope they are right about this. I'm choosing to believe they are because why not!

Feeling good and gaining some weight ( which everyone says is good...me, I'm not so sure about that!)

Blessings to you all! xxoo's Jill

Islandgirl · « **Reply #89 on:** March 29, 2015, 10:35:22 am »

Wonderful, Jill!!

We'll be waiting to hear your results and join in the happy dance with you

Believing with you and knowing it will be true! ....Islandgirl

emmett · « **Reply #90 on:** March 30, 2015, 05:13:20 am »

Quote from: Mike on February 13, 2015, 02:16:54 pm

Hi JillLyn,

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).

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.

moma · « **Reply #91 on:** April 13, 2015, 08:15:31 pm »

Hello All,
I'm 5 days off 12 week treatment. I can totally relate to JillLynn, Nicole and Sunrise.
I feel worse now than when on treatment. I've spent extended time in the bathroom which didn't happen before. With it comes cramps. Joint pain and still A LOT of brain fog. So I just wanted you to know your not alone with after treatment side effects. Hang in there-
MoMa

CHepCFree · « **Reply #92 on:** April 13, 2015, 08:54:49 pm »

Post treatment 6 weeks now and undetected and praying for SVR. I have reported the following post side effects to Gilead and to FDA: Ringing in the ears (have been to an ENT and he said everything is fine...so why the ringing?), brain fog...although that seems to be clearing some, vertigo, and asthma type issues, none of which I had pre-treatment. I see I am not alone in post treatment side-effects. I had asked Gilead what follow-up they do regarding these issues and was advised they have no responsibility and are leaving all subsequent health issues to health care professionals. I asked if their testing facilities are doing any follow-up or gathering of information and was advised the are not. They do report all reported issues to the FDA. You can get a copy of all reported issues from FDA for a fee. .

hepcme · « **Reply #93 on:** April 13, 2015, 11:52:28 pm »

I am sure they have their butts covered and did their job..there is not enough history or evidence of post side effects..the longest out of trial is probably 1 1/2yr now...alot of us complain about ringing in ears...they don't really seem to care of us just the money they can clear now...I still thank God for the life I have now as I was headed for a transplant which I was NOT going to do- NO WAY...or cancer or liver failure(which was starting)...I was knocking on deaths door...I would say I had maybe 6mon-10 left of very bed ridden issues ahead of me before Harvoni came along...I still have labored breathing issues and some waves of vertigo but very brief visits of them...I am learning maybe I am having a reaction to milk products..seems when I eat dairy I get labored breathing...I could not eat ice cream or milk products toward the end before TX as I would get sick and stomach issues so maybe it is due to aging now I am 62...which I feel 50 but the numbers don't lie...LOL...the dizziness goes along with the breathing ...I am testing some of these issues with experimental eating of sorts...hmmmm ??

Cally Balmoral · « **Reply #94 on:** April 26, 2015, 08:46:46 pm »

Please don't rule out a liver transplant. I had one almost ten yrs. ago and it was wonderful, compared with the life that was ahead of me.

ROEY · « **Reply #95 on:** April 27, 2015, 01:27:12 pm »

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

CHepCFree · « **Reply #96 on:** April 27, 2015, 02:38:27 pm »

Hope you feel better soon. I have not felt well since ending Harvoni and I am six weeks out. I have vertigo, lung issues and have an appt with a heart doctor on Friday. I'm not here to scare anyone but before Harvoni I felt great and had no health issues other than Hep C and it my liver was in good shape so this is all very disheartening. Hopefully as your body clears Harvoni which takes about 10 days as I understand it, you will start to feel great!!!!!!

hepcme · « **Reply #97 on:** April 27, 2015, 07:15:08 pm »

I am on week 12 now post Tx and am going for labs soon...I finally am getting to feel normal as in OLD...all the normal stuff of being 62...I don't think of the association of it as being from TX and Harvoni anymore which is good news...my issue now is to eat a healthy diet like I was instead of justifying the junk food I have not eaten in 7 yrs....dying from HCV was a great motivator to take care of my body...now not so...it is a stuggle

moma · « **Reply #98 on:** April 27, 2015, 07:55:45 pm »

Quote from: ROEY on April 27, 2015, 01:27:12 pm

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

Roey I can't believe you wrote this. It could have been me that wrote your message! I feel that exact same way. And yes, I am scared I'll feel like this forever. This is my 19th day off treatment. Depression has set in on top of it. Everyone seems to have different lengths of time they say the Harvoni will take to be out of our systems. Will my body be able to bounce back? We shall see- MoMa

Debula · « **Reply #99 on:** April 28, 2015, 11:29:34 am »

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

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