Author Topic: Started Harvoni 3/12/15 (Read 150649 times)

Sailor · « **on:** March 13, 2015, 11:48:26 am »

I took my first pill this afternoon in the car outside the pharmacy. My wife brought along a bottle of water. I am involved in a high stress job and have taken about 10 days off including weekends in the last 10 months. But I want to get this over with. I am 1B with a count of about 3,000,000. They tell me 6 weeks, then a check up and either 2 more weeks of 6 more weeks. My doctor figured out I have Hep C 10 years ago and cornered me when Harvoni came out. I had been following the research and had come to the same conclusion.

My wife and I think a lot of the fear of the drug comes from the horror stories of the previous drugs. My Doctor filled out the forms, I received my approval, took it to the pharmacy and the Harvoni arrived the next day. So here we go!

We are excited because we have been living with the knowledge of this for ten years. I don’t know if I have any symptoms. I get tired because of poor sleeping. But so does my wife. I think it comes with the aging process. Maybe something will change after the regimen is over (assuming I am cured). We are really interested to see.

I stopped drinking about 15 years ago. Had a biopsy in 2006 and 2009. The results were stage 2 of 4.

hayliegirl · « **Reply #1 on:** March 13, 2015, 12:51:05 pm »

I began taking Harvoni March 7th, just last Saturday. Day (1) was more then fine, day (2) I was thinking, hmmm I can live with this, day (3+) I am struggling!! Has anyone else experienced the heat rushing through your body?? I feel like I am boiling sometimes yet feel very cold on the outside. I felt like since you were a newbie maybe we would be experiencing the same things?? I am ready to be cured, not ready for side effects!!

Anyone feeling this way??
Haylie

Perca05 · « **Reply #2 on:** March 13, 2015, 01:38:17 pm »

Hi...I started on 3/4, and will be on it for 12 weeks. I went through a week of night sweats, but that has calmed down. So far, the only side I have now is thirst, so I am drinking more water than I usually do. I actually feel much better than I did prior to starting this treatment. Hopefully nothing changes through the 12 weeks other than I become SVR! I started with 4.1 mil VL. Will have test done at 4 weeks to see what is happening. Do not worry...be happy!

SIXFOOTFOUR · « **Reply #3 on:** March 13, 2015, 01:51:34 pm »

Welcome and good luck!

I started march 6 for a 12 week course .

Probably contracted it as non A non B hep from a transfusion in a major accident in 1971, officially dx in the early 2000 when I went to give blood. VL for the past 10 yr has varied but I waited for a better tx and Im glad I did since the success rate is much higher and the side effects less than prior tx.

I guess Im lucky, only light headaches, very tired the first 3 days that has passed and occ nausea at about the 12hr mark after taking my pill.

I dont know if its just the knowledge that Im finally fighting this or effects from the Harvoni but now at 7th day I feel better in general, more energy and a clear head-focus that I dont think Ive had in years. I think after reading alot of the stories on these forums that the side effects of chronic Hep C (pain, appetite, energy and more) often are not recognized and we take it to be part of "aging etc" .

A lot of great info on here , best of luck in your tx.

hayliegirl · « **Reply #4 on:** March 13, 2015, 02:13:06 pm »

You all are so helpful!! I'M NOT ALONE:)

Sailor · « **Reply #5 on:** March 14, 2015, 01:45:31 pm »

I have taken the medicine 2 times at 5:00 p.m. Now I am in my 2nd day. I have a cold, so it is difficult to know what is what. However, I am well aware that I am "under the influence" of Harvoni. It is powerful and it is manageable so far. I worked 12 hours yesterday and I am well into another work day today, then the theater tonight.

BubbaT · « **Reply #6 on:** March 14, 2015, 03:10:58 pm »

Hello fellow warriors,

I'm almost at week 3, I'm doing better each day, had one spell!
Remember grandma talking about, I had a spell, wow, that was funny then, maybe not so now! Lol

I had a fever, chill , vomit , nite and after that, missed a day of work, next day steady on ok,

But I did pray God help! And he did! Yea!

My energy is better, I'm learning to de-stress and pick my battles!
Some issues are not worth me being stressed about!

Eating well is key, and getting plenty of rest, try not to take other rx drugs if possible,
Yogurt is good at nite... Plenty water, salads, no salt soups!

Help your liver heal...

Fight on brothers & sisters

atomic dog · « **Reply #7 on:** March 14, 2015, 07:12:55 pm »

Quote from: Sailor on March 14, 2015, 01:45:31 pm

I have taken the medicine 2 times at 5:00 p.m. Now I am in my 2nd day. I have a cold, so it is difficult to know what is what. However, I am well aware that I am "under the influence" of Harvoni. It is powerful and it is manageable so far. I worked 12 hours yesterday and I am well into another work day today, then the theater tonight.

Sailor, all I can add to the good advice here is to not push yourself too hard while you're on treatment. Find time to rest. Might seem difficult, but there is something to be learned from this disease in a weird way, regarding mortality and taking the time to smell the roses, so to speak.

atomic dog · « **Reply #8 on:** March 14, 2015, 07:23:16 pm »

Quote from: hayliegirl on March 13, 2015, 12:51:05 pm

I began taking Harvoni March 7th, just last Saturday. Day (1) was more then fine, day (2) I was thinking, hmmm I can live with this, day (3+) I am struggling!! Has anyone else experienced the heat rushing through your body?? I feel like I am boiling sometimes yet feel very cold on the outside. I felt like since you were a newbie maybe we would be experiencing the same things?? I am ready to be cured, not ready for side effects!!

Anyone feeling this way??
Haylie

Pure speculation, but remember that the liver is the largest internal organ. The Hep C inflammation itself can make you feel the heat and it's possible that you're sensing the Harvoni doing its thing and attacking the virus. Not unusual to feel side effects in the first week. Drink lots of water thought the day. And try to rest.

hayliegirl · « **Reply #9 on:** March 15, 2015, 12:05:09 pm »

Thank you all for your replies!! Found out I have pneumonia! I was pretty much glad when the doctor came in and gave me my diagnosis because if I had to live feeling like this I was not happy about Harvoni but sure enough it wasn't the Harvoni gremlins after all!!
Things are looking better...
Got to kick pneumonia's butt now;)

atomic dog · « **Reply #10 on:** March 15, 2015, 01:14:46 pm »

Congrats on the diagnosis, in a weird way.

Actually, really sorry to hear that you're going though this at such a crucial time in your Hep C treatment. Hope your recovery from pneumonia goes well. Get maximum rest, chicken soup, plenty of fluids and all the rest of it.

Sailor · « **Reply #11 on:** March 15, 2015, 01:43:00 pm »

Starting day 3. Had a full day yesterday. Worked, spent time with my grand daughter, mentored my son-in-lay, went to a play with my wife. All in all a full day. Today (Sunday) expect to work about 5 hours, do some errands around the house, take a break this evening.

When I anticipated taking Harvoni, there was never a good time, so I went for it. Part of the decision making process was a lack of understanding of what to expect. I think the purpose of my posts is to record a history of my experiences and how it affects my normal day to day activities. Perhaps this will help others anticipating treatment.

Sailor · « **Reply #12 on:** March 16, 2015, 12:03:31 pm »

Starting Day 4. This could get boring. My cold is gone and I had a good sleep. This morning I am not aware of any impact of the Harvoni. I had a full day yesterday (Sunday) and have a busy week ahead. I need to take a trip in about a month to work on my boat, and am supposed to have my blood test then. Today I have an opportunity to see my doctor, so I will check on the timing of the blood test.

Sailor · « **Reply #13 on:** March 17, 2015, 04:53:24 pm »

Starting Day 5:

Yesterday was great. Cold is gone and everything was good.

Late yesterday I was washing my car and (unbelievable) pulled out my back. Today I can not walk. Pain is excruciating and I couldn't find a sleeping position last night.

Went to the Dr. and got some sympathy and pain killers. I was worried about taking Ibuprofen, but took some last night. Dr. said is not a problem with Harvoni. Hopefully I won't have to take the painkillers, just Ibuprofen and that for a short period.

Dr. said I can get my blood test between 4 and 6 weeks after starting Harvoni

hayliegirl · « **Reply #14 on:** March 17, 2015, 06:00:00 pm »

That's great you got some relief! I'm feeling much better now that the antibiotics have kicked in. I feel great today:) such a relief for me!! Harvoni is a life saver:) definitely saving mine!!

hayliegirl · « **Reply #15 on:** March 17, 2015, 06:00:21 pm »

That's great you got some relief! I'm feeling much better now that the antibiotics have kicked in. I feel great today:) such a relief for me!! Harvoni is a life saver:) definitely saving mine!!

Sailor · « **Reply #16 on:** March 18, 2015, 03:31:04 pm »

Day 6. No problems with Harvoni. Working away at full speed and trying to get my back to mend. I appreciate the comments. Hopefully we will all be cured and get the weight of this disease off our backs.

Sailor · « **Reply #17 on:** March 19, 2015, 02:29:22 pm »

Day 7 Harvoni impacts, if they exist, are lost as back round noise in the spectrum of the back pain I am presently experiencing.

Sailor · « **Reply #18 on:** March 20, 2015, 04:04:02 pm »

Day 8 - Again back problem eclipses any Harvoni side effects. Several discussions with Drs. about Harvoni and Ibuprofen. Harvoni and Vicoden. Harvoni and Percoset. Nothing works with back pain except Ibuprofen. Can't take much Ibuprofen, so I am off pain medication. Also a steroid for inflammation. Haven't slept for more than 20 minutes for 3 nights. Got MRI today.

My guess is that I am not suffering any effects from Harvoni.

Couldn't make it without my wife!

Sailor · « **Reply #19 on:** March 21, 2015, 01:24:22 pm »

Day 9 - From what I can tell, I am not experiencing any Harvoni side effects. I believe it works fast and that most of the virus extermination has taken place. Maybe it is searching for the holdouts.

I am curious about viral load and why it differs from person to person. Is the viral load an indication of the strength of one's immune system? Can't find any literature. I know viral load is not an indicator of liver condition.

Sailor · « **Reply #20 on:** March 22, 2015, 09:59:29 pm »

Day 10 - Still fighting my bad back, but no discernable effects from the Harvoni.

Sailor · « **Reply #21 on:** March 23, 2015, 12:12:51 pm »

Day 11 - Feeling good

harvonitoo · « **Reply #22 on:** March 23, 2015, 01:09:45 pm »

I have been prescribed 24 weeks of Harvoni, only 6 left to go and no side effects beside that very random once every 2 weeks strong headache which i take care with one tylenol 500 mg. pill. I have cirrhosis and since harvoni my liver functions are normal and I am undetectable. So I'm very happy about it!

I drink throughout the day half or even more that half of my weight in ounces of water ( i.e. I am 160 LBS I drink 80-90oz of water every day. That seems to help a lot. i'm lucky enough to be able to do it as if you work outside of your home you can't constantly go to the bathroom to pee!

Try to drink a lot of water but don't gulp it down, sip it through then day. best of luck!

Sailor · « **Reply #23 on:** March 24, 2015, 10:30:38 pm »

Day 12 - Another good day

Thanks for the reply Harvonitoo. With the length of your treatment, it is great to hear that your are doing so well.

Israel · « **Reply #24 on:** March 25, 2015, 11:12:39 pm »

Hi Sailor - It looks like you and I started on Harvoni on the same day, Friday the 13th! I'm Genotype 1a with F2 fibrosis and viral load of 1.6 million. Thus far I have not experienced any side effect whatsoever and have made no changes in lifestyle except that I stopped drinking coffee and soda. I've had HepC for over 45 years and was diagnosed two years ago. I didn't treat it sooner because I was waiting for a med with less side effects and a higher success rate. You hang in there....and at the end of the 12 weeks, we will be just fine. God bless.

Sailor · « **Reply #25 on:** March 26, 2015, 09:56:12 am »

Day 13 - Still no noticeable side effects.

Sailor · « **Reply #26 on:** March 26, 2015, 10:03:12 am »

Day 14 - No discernable side effects.

Thanks for the post, Israel. I'm glad your treatment is going well. I haven't modified anything. Presently I am suffering from a severe back problem and am awaiting a meeting with a surgeon to get a diagnosis. As I can't stay in any position for more than 20 minutes, I can't get much sleep. This has far eclipsed my HEP C treatment. I started Harvoni with trepidation and have found it to be very easy. Who would have thought my attention would be diverted to my back.

I, too, waited for a medical break through and I'm glad I did. Seems to me the big question is waiting to see if we are cured.

Israel · « **Reply #27 on:** March 26, 2015, 12:29:46 pm »

Hi Sailor - Sorry to hear you're having difficulties with your back. Hopefully between you and your doctor you can find ways to remedy the pain and/or at least minimize it to the point that you can function "comfortably". Regarding your difficulty sleeping, I had a similar problem and what has worked for me has been staying off coffee (and anything with caffeine) and reading as oppose to watching TV before going to bed. The success, Sailor, of the Harvoni treatment is unknown. Despite the high success rate we may be one of the few who may not make the cut. This means that all we can do is keep our eye on the ball, be responsible with the program and concentrate on the NOW (family, friends, work, etc). Tomorrow, God permitting, will come and when it does, we'll deal with at that time. You hang in there buddy, one way or another, we will beat this thing.

Sailor · « **Reply #28 on:** March 27, 2015, 07:23:22 pm »

Day 15. Still no side effects.

Israel, I want to clarify that my sleep problems are caused by my back problem. I have to change positions every 20 minutes or the pain gets intense. Today I slept on my right side for an hour before the pain started, so I am improving. I appreciate your comments about caffeine and other sleep management techniques. In like coffee and I like to read my laptop in bed!

Sailor · « **Reply #29 on:** March 28, 2015, 11:42:44 am »

Day 16

No side effects.

Sailor · « **Reply #30 on:** March 29, 2015, 04:23:31 pm »

Day 17 - Sorry to be so boring, but again no side effects. I'm working hard and my back is slowly improving.

Getting well · « **Reply #31 on:** March 30, 2015, 01:01:43 pm »

Sailor, please continue to post your "boring" progress.

I've been reading here for over a year, however, I only registered today.

I started Harvoni right after you, March 18, and have been following your posts.

My experience is similar to yours. I had a piercing headache day two and kind of a dull headache for a few days after. Those are the only side effects I've had.

A friend suggested I should log my daily progress and then I saw yours, so similar to mine, that I decided to follow yours instead. Lol.

Thanks to you and all the wonderful other posters here. I'm sure there are many like me who read here for encouragement and never register and post.

Getting well · « **Reply #32 on:** March 30, 2015, 01:03:36 pm »

I also want to add that I felt better within the first week. My terrible mental fog is nearly gone and the joint aches have all but disappeared.

Sailor · « **Reply #33 on:** March 30, 2015, 04:38:20 pm »

Day 18 - No noticeable side effects.

I had an interesting call from a nurse working for the insurance company providing my Harvoni. I am supposed to get a blood test after month 1 to determine if I need to have 12 weeks treatment instead of 8 weeks. Apparently if the virus is not detectible at week 4, I will stop after week 8.

She said there is not another medicine to use if I am not successful with Harvoni, that I would have to wait for another drug to be developed.

Getting Well. It sounds like you had a more difficult time than me getting started. I'm glad you are OK now. I think it is useful to note on this blog if you start to experience any adverse effects in the future. Good luck and thanks for your good words.

It has bothered me that they may stop at 8 weeks and find that the treatment is not successful. Then I would wish I had gone 12 weeks. Then I started to think about it. The insurance company shares the same interest with me. If the treatment is not successful, then I will have to take another treatment and they will pay for it. So the logical conclusion that 4 extra weeks beyond the 8 weeks, will not change the outcome if the virus is un-detectible after 4 weeks.

Because, that in my case so far the side effects are virtually non existent, the real and far more important question is will the treatment be successful. 98% odds are not bad, but there is the 2% that is not successful.

Getting well · « **Reply #34 on:** March 30, 2015, 07:35:33 pm »

I am on 8 weeks, also. I am F2 with viral load under 6mil.

I test in 4 weeks, too, but if I have the less than 25 detectable copies, I have decided to not worry about not doing more than 8 weeks. That is the protocol.

I have been sick for years and didn't know what it was. I have been diagnosed with rheumatoid, fibromyalgia (if that is a disease) and have gradually gotten nearly bed fast due to pain and extreme fatigue. This is a miracle for me.

Tina30 · « **Reply #35 on:** March 31, 2015, 09:14:11 am »

Hello everyone,
I'm new to the forum but have been reading posts as a guest for 4 years now. I too recently started Harvoni. Diagnosed when I was 26, not sure how I contracted the virus. Possibly a tattoo I had done when I was 18, or using something of my fathers at age 13 (toothbrush, razor etc.) as he passed at 35 with Hep c and cirrhosis. He was also as alcoholic and didn't know he had the virus. Anyway, I've been extremely fatigued, sore and overall had a feeling of malaise for years, but thought that was all due to working and going to school full time. In 2012 I was diagnosed and 2013 I began Interferon, Riba and victrelis, I cleared the virus and made it to 29 weeks before I had no immune system left and body just could not make it any longer. Relapsed, at 4mo. post treatment viral load up to 6 million. Almost all my hair had fallen out, but I'm lucky that I found out I had the virus at such a young age. No fibrosis per abdom. ultrasound but viral load 7,000,000+ I started Harvoni March 6th, 2015 after 4 mo. of battling with my insurance. Long story short, it was Support Path who helped me with the medication. I'm approved for 12 weeks and going into my 5th week come Monday.

Side effects: Mild headache, off and on nausea but overall, feeling pretty darn good.

Positive results: Sleeping better!!!! Way better!! It is amazing, after suffering from fatigue for years and not really putting two and two together.

I am so happy to have had this forum to read throughout my treatment with Interferon, but I have to say, Harvoni is AMAZING! This is nothing compared to what I went through in 2013. I wish everyone total SVR, and thank each and every one of you for your posts. I'm ready to live my life to the fullest and have children but wanted to be as healthy as possible first.

Is anyone else on antidepressants? I am on Zoloft and Wellbutrin and am hoping that is contributing to the brain fog because it is still lurking everyday and I'm really hoping after I clear the virus it will improve, but if it's due to the antidepressants I can learn to cope as long as I need them.

P.S. I had to take a leave from my full time job with Interferon and Riba. but with Harvoni I've continued to work. I'm late to work here and there due to exhaustion but I'm lucky to have a boss that is compassionate to what I'm going through.

Sailor · « **Reply #36 on:** April 01, 2015, 02:39:34 am »

Day 19 - Another day free of side effects.

Another interesting the nurse told me was to change out my toothbrush and razor in the event that I am free of the virus at my 30 day blood test. There is a small chance one could get infected again.

Getting well and Tina30, you have had a tough time. I hope your experience with Harvoni is successful. You deserve it.

Getting well · « **Reply #37 on:** April 01, 2015, 09:18:32 am »

After reading many posts from all the fine folks here, I already had new toothbrushes on the ready. I start toothbrush number three today as well as start week three of Harvoni.

Same side effects for me as for you, none.

It feels like I just came thru a high fever, like a curtain has been lifted.

I am so thankful and wish all the best to you and all who suffer from this terrible disease.

Karen3717 · « **Reply #38 on:** April 01, 2015, 09:43:33 am »

Hi Folks,
I am also new to this forum. I strated Harvoni on 3/13/15. I am doing 12 weeks (VL-316,000, F2, failed PegIntron/Riba 2001, no chirrosis, Antibody (+) in 1992 Likley contracted from blood transfusion 1986). So far so good. Some fatigue, headaches & insomnia, but totally manageable. I have BCBS of Texas. Harvoni PA went weel. I was approved in 1 week. Signed up online for Gilead's $5 copay card & got it immediately. VL @ 2weeks is detected but <15. Cause for celebration!!!

I hope everyone continues to do well! Harvoni is the HCV bomb we have all been waiting for all these years. They didn't name that webstite HepCHope for nothing!!
Karen

Karen3717 · « **Reply #39 on:** April 01, 2015, 09:47:31 am »

Hi Folks,
I am also new to this forum. I strated Harvoni on 3/13/15. I am doing 12 weeks (VL-316,000, F2, failed PegIntron/Riba 2001, no chirrosis, Antibody (+) in 1992 Likley contracted from blood transfusion 1986). So far so good. Some fatigue, headaches & insomnia, but totally manageable. I have BCBS of Texas. Harvoni PA went weel. I was approved in 1 week. Signed up online for Gilead's $5 copay card & got it immediately. VL @ 2weeks is detected but <15. Cause for celebration!!!

I hope everyone continues to do well! Harvoni is the HCV bomb we have all been waiting for all these years. They didn't name that webstite HepCHope for nothing!!
Karen

Getting well · « **Reply #40 on:** April 02, 2015, 02:55:41 pm »

How are you today, Sailor? Karen?

Hope the back is better.

I am not having the greatest of days. Some of my joint pain is back although not nearly as intense as before starting Harvoni. I also have a headache although it is tolerable. My blood pressure is elevated. I was already on blood pressure medication.

The weather is stormy here today which could explain the joint pain and the headache may be explained by the elevated blood pressure. I'm not ready to call them side effects.

I have read on the forum that it could be possible that the increased water consumption could diminish potassium. Tomorrow I will shop for bananas and V8 juice as I don't feel like shopping today.

Let me know how ya'll are faring.

Getting well · « **Reply #41 on:** April 02, 2015, 02:59:15 pm »

ps:

I had a dream last night for the first time in years which has to mean I am entering REM sleep to produce a more sound, restful sleep.

Sailor · « **Reply #42 on:** April 02, 2015, 05:14:27 pm »

Day 20 - No obvious side effects.

Went to the orthopedic surgeon and he recommended back surgery. Interesting thin was that my blood pressure was up from about 115/80 to 150/120. Dr. said it was due to my back pain. Could it be the Harvoni.

Sailor · « **Reply #43 on:** April 03, 2015, 11:45:53 pm »

Day 21 - No noticeable side effects.

BubbaT · « **Reply #44 on:** April 04, 2015, 12:30:40 am »

Yes, the Harvoni caused my Bp to rise near 150/80

Sailor · « **Reply #45 on:** April 04, 2015, 01:58:49 pm »

Day 22 - no noticeable side effects.

Getting well · « **Reply #46 on:** April 04, 2015, 03:02:40 pm »

I, too, have no noticeable side effects. The joint pain and headache has passed along with the storms so I guess I'll never know which came first. Lol

Bubba, my BP is still slightly higher but is lowering. Possibly my body, with present BP meds getting used to the Harvoni and I've increased my potassium intake.

Karen, hope you are doing well and that this is a Cakewalk for you as well.

Sailor · « **Reply #47 on:** April 05, 2015, 01:36:37 pm »

Day 23 - Still no noticeable side effects. From some of the other comments, it appears that for most, the side defects are negligible. Let's hope that it continues to be the case. I will get my blood test in about a week. That is the next big event for me.

I must admit that I haven't been drinking much extra water. I am so busy with work, managing pain, and preparing for back surgery in about 2 weeks, that I have a hard time altering my habits. I swear that when this work project is over and my back is better, that my new focus will be exercise and diet. My wife makes it look easy. I have read that as one ages, exercise becomes more important.

Getting well: it didn't occur to me to change out toothbrushes and razors more frequently. I am going to start doing that.

Getting well · « **Reply #48 on:** April 05, 2015, 04:20:33 pm »

I'm still same as you in re side effects.

Feeling a little tired today, but just taking it easy and binge watching Mad Men. Probably not a side effect.

I've been changing my toothbrush, razor, etc, at the start of each week on Harvoni.

Debula · « **Reply #49 on:** April 06, 2015, 12:16:01 pm »

I feel encouraged when I read this post! Thank you for sharing your progress every day. I am sorry about your back problems though

May I ask what time of the day to you all take your Harvoni?

I read that some people take it at night so they sleep through any side affects.
I was also curious how long after "dosing" do the side effects if any, kick in?

Keep posting and thank you
Deb

Getting well · « **Reply #50 on:** April 06, 2015, 12:40:46 pm »

Still no side effects. Better energy today and sound sleep last night.

I take Harvoni in the mornings. I usually get up very early for a bathroom trip, so that is when I take it and then go back to bed for an hour or so. I do it this way so that the days I need to take Prilose, I am fasting. Then after one plus hour, I can take my thyroid medication and others.

Sailor, good luck on the back surgery. I have suffered with back problems since I was 19 years old and understand what you must be going thru.

Sailor · « **Reply #51 on:** April 06, 2015, 05:05:01 pm »

Day 24 - No side effects.

Getting well - Thanks for the kind words regarding my back.

Debula - I take the Harvoni about 5:00 pm. I have never noticed any discernable side effects. I have been told that Harvoni can keep you awake, but I don't have a problem sleeping. I was worried about the side effects as I have a big work load right now. I didn't know what to expect and so far it has been a breeze. My purpose for this blog is to document my daily experiences: good or bad. So far mine have been good. Although I know some others are not fairing as well. Time will tell if it stays this easy. If I experience side effects, I want to do so at night so it may impact my work less.

Sailor · « **Reply #52 on:** April 07, 2015, 03:01:33 pm »

Day 25 - No noticeable side effects.

I'm going to call the DR. to schedule a viral load blood test.

Today I pick up the next month's supply of Harvoni.

harvonite · « **Reply #53 on:** April 07, 2015, 07:26:02 pm »

Hello all,
Have been lurking in the back-round & reading all these posts before and during treatment.
We all collectively have lived with the terminal feeling that Hep C would be our demise, however Harvoni seems to be an actual miracle drug. I am 3 weeks short of finishing my 12 week treatment. My side effects have included: continuous elevated systolic b/p; ringing in my ears; brain fog;strong body odor (like celery); strong urine odor (like asparagus-previously mentioned by another member); early morning headaches.
Energy level had increased steadily while on treatment and core strength is where it was 20 years ago. I was diagnosed late 80's with "non A non B" hep which it was called prior to Hep c being the assigned type. GOOD luck to all of you. Stay Active, stay HYDRATED and work through this!!!

Getting well · « **Reply #54 on:** April 07, 2015, 08:11:21 pm »

Still null for side effects. Maybe a little tired today but nothing like the horrendous fatigue I suffered before beginning treatment. I wouldn't even notice this tiredness if I hadn't experienced the fatigue lifting after I began treatment.

Once again, we are experiencing stormy weather this week in my neck of the woods so I don't know if the tiredness is from the medication or the weather.

Karen3717 · « **Reply #55 on:** April 07, 2015, 09:52:16 pm »

Hello,
Haven't been on here for awhile, so thought I would check in. Good to hear most everyone is doing well. I started my 4th week on Harvoni last Friday. I will have 4 week labs done this Thursday. I don't expect anything but more good news! (2 week labs showed <15 but detected). I do have to say I've been quite fatigued while on treatment. I'm normally like the energizer bunny, but not so much lately. I work full-time and try to swim laps 2-3 times a week. I also do all my yard mowing,etc so, I'm struggling a bit to try to keep going at my normal pace. Other than the fatigue, I've had a few headaches, but only one bad enough to take a Tylenol. So guys, we are 1/3 of the way through this and I'm hoping all continues to go well. I am a bit concerned about the B/P elevations that some are having. Did you guys have normal B/P prior to Harvoni? I would hope that this would resolve after completing treatment.

Karen

Getting well · « **Reply #56 on:** April 07, 2015, 10:56:27 pm »

I was already on blood pressure meds but BP was controlled. I'm considering adjusting BP meds thru treatment. I'll speak to my primary next week concerning this.

On a side note, I have increased my intake of potassium rich foods for this reason.

harvonite · « **Reply #57 on:** April 08, 2015, 12:14:23 pm »

Re: elevated B/P, I have had occasional high b/p but never on a daily basis like I have during Harvoni treatment. I will wait and see if it continues after treatment and then determine what to do. On a side note, I was told by the pharmacist at my Drs office after an extensive review of diet and supplements to avoid potassium since they were worried about kidney problems while taking Harvoni. All labs have shown normal function throughout treatment, and I'm sure over-hydrating helps clear the drug from the liver/kidneys. Hope we all don't end up needing heart valve replacements $:-\$

Sailor · « **Reply #58 on:** April 08, 2015, 10:30:02 pm »

Day -26 Still doing fine.

I had blood taken today and received a call that my liver functions were normal and that another test that looks for anemia and red blood cells was fine. I have to wait a few days for the viral load.

I am going to get a copy of the test results. I haven't had a normal reading for 30 years. I want to check it against some of my old reports. It is encouraging.

Getting well, Harvonite, and Karen 3717 ---I've been reading your posts and it sound like we are on the same track. Good luck.

Getting well · « **Reply #59 on:** April 09, 2015, 10:16:48 am »

Mornin' all. I am into my fourth week and still good.

I go next week for blood draws and will post results.

kauri · « **Reply #60 on:** April 09, 2015, 04:14:14 pm »

Hi Everyone,

I just read all the recent posts here, it's good to have company going through this.
I started Harvoni on the 16th March, so have done 3 weeks. To answer a couple of people's questions: I take it in the morning.The side effects do'nt obviously follow taking the pill for me
After one week, my liver enzymes were completely normal again. My doctor said that's typical of his Harvoni patients. I don't have a viral count yet.
My systolic blood pressure is up about 20 points from normal. I'm doing well except for becoming extremely short-fused. The other side effect is fatigue in the day and wide awake at night. The first week or so, I slept a lot, then suddenly, I was hyper and irritable.
But basically, I'm having an easy time so far (unlike my poor housemate who has to put up with me

), I hope it keeps on like this, only without the temper. I hope everyone has good results, I'm still kind of amazed that this came along.

Sailor · « **Reply #61 on:** April 10, 2015, 12:33:23 am »

Day 27 - I had a migraine headache today. However, I don't know what to blame it on. Next week I go to get a second opinion on my back and probably surgery right after. So my back is killing me.

Hello Kauri

Getting well - good luck with your blood tests.

I'll post my viral load count, maybe tomorrow.

GLCII · « **Reply #62 on:** April 10, 2015, 12:28:07 pm »

Hello All

I saw the title of this post and thought I would drop in since I started the new Tx on 3/12/15 myself. I only wish I had started taking the pill at Midnight instead of at 12:00 Noon. Looking back, I don't think I did myself a favor by starting at that time. I actually hit the ground running and feeling good originally. Now that I'm 4 weeks, or 30 pills, in to it, I'm feeling Rough! It's not as bad as the other 3 treatments I did but doe's seem to build up in the system.

Anyway, Good Luck Everyone.

Sailor · « **Reply #63 on:** April 10, 2015, 04:41:33 pm »

Day 28 - Had a good day.

Ledoc01 · « **Reply #64 on:** April 10, 2015, 05:51:48 pm »

Glad to hear your side's are minimal Sailor. Tough gig with the back..

I had my neck fused 3 years ago and my lumbar fused a year ago. FWIW, I'd finish the HCV tx first. Everybody's different but that lumbar thing kicked my rear.

pain sux in any event... best wishes

kauri · « **Reply #65 on:** April 10, 2015, 06:23:21 pm »

Hi Sailor, hi everyone,

Thanks Sailor. Pain certainly does suck, and I hope you get real relief, real soon.
As I posted, I've been having anger bursts. My son, whose on the receiving end, googled 'Harvoni irritability' and found a bunch of entries under 'Harvoni RAGE'. I wonder if anyone else on here is having this problem? I did see some comments earlier on, but would like to hear more about whether it eventually goes away, or just not to feel like the lone person that Harvoni turned into a monster

kauri · « **Reply #66 on:** April 10, 2015, 07:07:49 pm »

Hi,
I googled 'Harvoni rage' myself and found only refs to 'riba rage'. So maybe my son was confused by that. (Don't want to make false accusations)

Kauri

Sailor · « **Reply #67 on:** April 11, 2015, 01:45:29 pm »

Day 29 Another good day. Didn't get my viral load count, maybe Monday. Obviously, I'm very curious to know the results.

Thanks all for the comments about my back.

Getting well · « **Reply #68 on:** April 11, 2015, 04:25:56 pm »

Still good for me, too, although I cannot deny the headache, tinnitis and elevated blood pressure. However, these sides are nothing compared to what I went thru before beginning treatment. I still feel better now than four weeks ago. I have 31 pills left. YAHOO!

41HAPPY61 · « **Reply #69 on:** April 11, 2015, 06:27:30 pm »

Hey there - I am a 61 year old with Geno Type 1b. I became infected in 1974 when I had a couple of surgeries and received several transfusions. I have had this too long!
I started 8 week treatment plan today. I am very excited and looking forward to a better quality of life.

Today is Day 1 of Harvoni treatment.

I am also nervous about treatment, but feel very positive about this journey.

Looking forward to participating in this forum.

Sailor · « **Reply #70 on:** April 11, 2015, 06:59:03 pm »

Getting well. I should mention that I have tinnitus, too. However, I had it before I started treatment.

I'm going another blood pressure reading next week when I see the back surgeon.

41happy61. I shared the same nervous anticipation before starting treatment and have been pleased with how easy it has been.

kauri · « **Reply #71 on:** April 11, 2015, 07:04:35 pm »

41HAPPY61 welcome to the forum. I'm only 4 weeks in, and already feeling a better sense of well-being.
On Monday, I'll have my first quantification since starting, but my doctor won't let me know the results until I see him 10 days later. I could object, but I think I'll just be patient.
I was having trouble sleeping, but I accidentally discovered that if I slather petitgrain essential oil on the back of my neck and temples, I sleep solidly all night. Relief!
Hope everyone is having a good day.

Getting well · « **Reply #72 on:** April 11, 2015, 08:58:05 pm »

While I've had the ear ringing for years, probably due to years of NSAIDs, it is more pronounced at different times thru the day now.

kauri · « **Reply #73 on:** April 12, 2015, 01:52:27 pm »

Yep, I've had tinnitus for years. Has anyone heard of it going away with Harvoni?

Sailor · « **Reply #74 on:** April 12, 2015, 02:36:34 pm »

Day 30 - No problems. Slept really well last night. I, too, wonder if the ear ringing will stop when the treatment is over.

I do recall reading somewhere, that ear ringing is a result of aging. I just read about it on the internet. Mine is a subtle high pitched sound that I am aware of occasionally.

41HAPPY61 · « **Reply #75 on:** April 12, 2015, 03:10:40 pm »

I used to experience some ringing in my ears when I was on a Sulfa drug. Hope that goes away it can be annoying. Goodluck.

Sheila · « **Reply #76 on:** April 13, 2015, 11:21:43 am »

I started Harvoni on March 9 and the virus is now NOT DETECTABLE. I haven't experienced any side effects. It's a miracle. I was diagnosed 17 years ago and given two very important recommendations from my doctor, who agreed with me that at the time, the treatments were worse than the disease. I quit drinking and started making a real effort to live healthier. He also told me to keep the best health insurance I could afford, because he was confident, that if not an actual cure, that better treatments would eventually be available. And here I am... took that advice and considering myself free of Hep C.

GLCII · « **Reply #77 on:** April 13, 2015, 11:40:51 am »

Sheila

Good for you!!! That's exciting news.

Sailor · « **Reply #78 on:** April 13, 2015, 05:20:07 pm »

Day 31 - No problems.

Sheila, Congratulations on your test results!

My reports are always about the day before. But today I'm going to cheat and share some news about today.

My Dr. called today and told me I AM 0 DETECTABLE!

THIS IS AS EXCITING AS THE DAY I GOT THE RESULTS FROM MY FIRST BIOPSY AND DISCOVERED THAT I WAS ONLY F2 after 30 years of hep c.

Getting well · « **Reply #79 on:** April 13, 2015, 05:26:28 pm »

CONGRATULATIONS!!!!!!!!!!!

Same minimal side effects for me. I'm having some rheumatoid flare up (wrist, elbow, knee, etc. pain). However, we have stormy weather again so who knows?

I have my four week blood draw on Thursday and hope for the same results as you. Once again, congrats.

Getting well · « **Reply #80 on:** April 13, 2015, 05:36:14 pm »

ps: good luck to the rest of you. Hoping good things for you.

kauri · « **Reply #81 on:** April 13, 2015, 09:58:27 pm »

HEY! HEY! SAILOR! How does it feel to be virus-free? That is such good news, Calls for celebration.
Getting Well and me both have our 4 week draws this week. I had mine today. Wondering....
My blood pressure's still elevated and my sleep needs help, but otherwise, I have no complaints.
Hope everyone is having a good day.

kauri · « **Reply #82 on:** April 13, 2015, 10:10:15 pm »

GLCII ...I notice you were also UNDETECTED at 4 weeks. And you had a high count, like me. And previous treatments. So, that seems very encouraging, and for me as well.
You said things were getting rough? I'm sorry to hear that. How are you doing now?

Getting well · « **Reply #83 on:** April 14, 2015, 10:42:30 am »

Threw away my first empty bottle of the miracle cure this morning. One more to go. Hash tag...who knew it could feel so emotional? Lol.

Debula · « **Reply #84 on:** April 14, 2015, 10:46:42 am »

Congratulations SAILOR!! I am very happy to hear that!! woot woot!!

Also congrats to Getting Well for completing 30 days? of the miracle cure!!

I hope to follow you very soon!!

Getting well · « **Reply #85 on:** April 14, 2015, 10:52:23 am »

Twenty eight days. Each bottle if for four weeks, not a month.

Debula · « **Reply #86 on:** April 14, 2015, 11:08:01 am »

ahh well still good at 28 days! That seems like a lot of days to me since I haven't started yet. I hope to be starting in the next few days. I just got approved yesterday and am now waiting for the specialty pharmacy to call me.
Woo hoo for 28 days of dragon slaying!!

Sailor · « **Reply #87 on:** April 14, 2015, 02:18:56 pm »

Day 32 - Again no problems.

We have a group of folks who are all on the same track and sharing a similar experience with Harvoni.

I really wish the best of luck to those who awaiting their results.

We won't really know until some time after we finish the course of treatment, but we seem to be on the right track.

Lynn K · « **Reply #88 on:** April 14, 2015, 10:03:33 pm »

Congrats Sailor!

147 days down 21 days to go for me

Getting well · « **Reply #89 on:** April 15, 2015, 04:27:19 pm »

Headache, joint pain and snotty nose. Lol. But not near to the degree I had these same symptoms before beginning treatment. Plus, it's storming here, again, so I still don't know if it could be weather related instead of side effects. I do so hate to whine but I have been sick for so long and sometimes it seems like I'll never be better.

But, 27 more days and I will (hopefully) be done. Blood test tomorrow.

Ya'll hang in there, too.

Sailor · « **Reply #90 on:** April 16, 2015, 07:04:49 pm »

Day 33 - No problems.

Sailor · « **Reply #91 on:** April 16, 2015, 07:09:13 pm »

Day 34 - Today I saw a back surgeon for a 2nd opinion and I don't believe I need surgery which my wife and I are very happy about.

On the way out I asked them to read my blood pressure and it is back to 120/75, my normal blood pressure. Earlier it was elevated and the Dr. said it was because of my back pain. Who knows? But it is back down now.

Good luck Lynn K. It has been a long haul for you.

Getting well, I hope your test results are good.

Getting well · « **Reply #92 on:** April 16, 2015, 08:26:33 pm »

I'm so happy for you about your back. I'm sure you are already aware, but, physical therapy, chiropractic services and specific neck and back exercises may help alleviate some of the pain. There is no single cure all but these things do improve my life. Thirty years ago the neuro surgeon told me not to come back until I wanted to have surgery done. Thank God, I haven't and I am still walking. That is my guage. Lol

I've had a couple of puny days. Don't know if it's side effects, weather or me being a big baby.

Lynn, I am trying to emulate your strength of character but I am failing. Just can't seem to shake feeling really bad.

But, got my blood drawn and will hope for good news in three to five days.

Only 26 days to go.

Sailor · « **Reply #93 on:** April 17, 2015, 06:24:16 pm »

Day 35 - No adverse effects today.

Good luck on your test results, Getting well.

Sailor · « **Reply #94 on:** April 18, 2015, 12:55:20 pm »

Day 36 -Another day filling fine.

Philadelphia · « **Reply #95 on:** April 18, 2015, 06:29:16 pm »

It makes me happy to see so much good news.

kauri · « **Reply #96 on:** April 18, 2015, 06:50:24 pm »

Day 33 for me. I can't say I have a single symptom that I can blame Harvoni for, anymore. It seems to make things I usually have, just a little bit worse, but really, I'm doing fine.
About the high blood pressure. My doctor said a number of his patients have had high blood pressure Harvoni. Her'e my experience with it. Usually my blood pressure is low..110/80 or so. In week 3 and 4 I was measured at 140/? (dont remember the diastolic). I was also having trouble sleeping. It was a stressful time at home. Then things settled down, and I crashed into a long sleep. When I woke, my blood pressure had plummeted, lower than normal, to 88/59 with my heart rate higher than normal.
While I do have unstable heart function, I've never measured these extremes before. Now my concern is whether my heart will be OK on Harvoni for so long.
I do have heart failure, as yet undiagnosed, so this won't apply to others who don't.
Otherwise, it's good to be going through this in a group together. Hang in there GETTING WELL, I hope you discover something that helps.

Getting well · « **Reply #97 on:** April 18, 2015, 09:49:36 pm »

I am worse, yet again. I now feel no better than I did beforenL starting treatment. I am also itching more than I had previously. Rash on trunk and palms. I just took 25mg Benadryl to see if that helps.

My best to all.

I have only 24 more pills and then this will, hopefully, be over.

Sailor · « **Reply #98 on:** April 19, 2015, 06:17:45 pm »

Day 37 - I'm starting to anticipate finishing treatment. I guess I get another blood test and if I am still un detectable, that I stop after 56 days (8 weeks). That could mean less than 20 days to go.

I continue on with the experience of very few if any noticeable side effects.

I really hope, Getting well, that you start feeling better. You, too, don't have long to go. Hopefully, your test results will be good and that will help.

Getting well · « **Reply #99 on:** April 19, 2015, 08:06:42 pm »

Welp, I'm feeling a little better. Most of the pain is gone. Still some headache and stomach distress but not like the past few days. Still have rash and itching.

I should get my test results this week. Keeping fingers crossed. Oh, the anticipation is gruelling. (Is that spelled with one l or two?)

Hang in there folks. No matter where we are in treatment we are closer than we were, even for the few who have not gone on to undetected.

Sailor · « **Reply #100 on:** April 20, 2015, 12:58:58 pm »

Day 38 - No problems.

Getting well · « **Reply #101 on:** April 20, 2015, 05:40:52 pm »

Day 34 for me and I am a little better than yesterday.

Seems like I read somewhere on this forum that some folks had increased side effects at 5 to 7 weeks. Perhaps that is what is going on. I've even had right, upper quadrant pain today and that is something I've never experienced with the HCV.

But, things are just about back on track today. I was able to eat today.

Sailor · « **Reply #102 on:** April 21, 2015, 12:55:42 pm »

Day 39 - Another good day.

Espo2 · « **Reply #103 on:** April 21, 2015, 10:22:22 pm »

Hey guys, think You responded when I started Mar 17.1b, 4.5mil vl. Sailor, you really coasted thru this med, good for you. Hope surgery goes well. But I too like Getting Well, have joint pain.becoming a big annoyance. At Week 4, undetectable. Blood is good, Doc doesn't give read out or see me, Strange? Itchy dry skin, allergy like. Gained 3 lbs. i I am a little emotional at times, and intermittent fatigue. Want to be happy with results but can't wait to finish this, seems like everything is amplified, old injuries woke up. This is week 6, hoping it gets better.

Getting well · « **Reply #104 on:** April 21, 2015, 10:47:23 pm »

Evening, Espo and Sailor.

I start week six tomorrow.

Still haven't heard about my blood draw on Thursday.

I am a lot better but still have some manageable sides.

I've been experiencing shortness of breath, too. Hope it subsides.

Think I read that some others had that, too.

We are almost there.

Getting well · « **Reply #105 on:** April 21, 2015, 10:51:52 pm »

By the way, Espo, I've been seeing a rheumatologist for years. After beginning treatment, the joint pain almost went completely away. It was very disappointing when it came back last week. There has been no pill nor potion that could bring me relief for a very long time. But, I am happy to report that the joint pain is much better this week.

Getting well · « **Reply #106 on:** April 22, 2015, 10:04:15 am »

Put on your dancin' shoes.

UNDETCTED!!!!!!!!!!!!

Sailor · « **Reply #107 on:** April 22, 2015, 12:37:58 pm »

Hey Getting well! Congratulations! I know you are happy today!

Day - 40 Still doing fine. We are getting closer to the end.

There is no question I am sleeping better than I have for years. I hope it doesn't stop when the treatment stops.

Getting well · « **Reply #108 on:** April 22, 2015, 03:14:18 pm »

Yep, I'm sleeping better, too.

I'm still having joint aches, but they seem to come later in the day. Still having shortness of breath.

I say all this so other people that may read here won't think they are crazy if the get some side effects.

This forum has been a wonderful resource for me and although I don't comment a lot I still read everything here and the posters have certainly been an encouragement to me.

Sailor · « **Reply #109 on:** April 23, 2015, 12:17:00 pm »

Day 41- Another possible side effect is that I seem to have more of an appetite. I notice it and my wife has remarked about it.

Another good day.

I'm getting close to the end of the 8 weeks. I need to check with my Dr. to see if I need any more blood tests before I finish. There is a possibility that I could have 4 more weeks. I think it is unlikely since I was undetected 1/2 way through.

It's hard to believe, that for me, it could be this easy.

Sailor · « **Reply #110 on:** April 24, 2015, 03:58:55 pm »

Day 42 - Another easy day.

I've been working at full tilt and my back pain is improving.

Getting well · « **Reply #111 on:** April 24, 2015, 04:44:50 pm »

Congtats, Sailor, I know you're going to make it.

I'm feeling good, better than I've felt in years. Still have the shortness of breath, very similar to when I was on lisinopril for high blood pressure, but I only have two and a half weeks to go on Harvoni.

My appetite increased, too, but I think it's because I actually feel like eating. Had Chinese today with my daughter. How nice to be able to go out again.

Sailor · « **Reply #112 on:** April 25, 2015, 03:05:28 pm »

Day 43 - A fine spring day with no discernable side effects.

Getting well, we're getting close to the end.

Then we have to wait for 6 months? to see check for relapse. The odds are good for success.

Getting well · « **Reply #113 on:** April 25, 2015, 03:09:35 pm »

Same for me. Still itching and short of breath but I really think this will all go away in a few weeks.

I have 17 pills to go and I feel like a new person.

Espo2 · « **Reply #114 on:** April 26, 2015, 09:45:50 am »

Getting well: I too am short of breath too sometimes, the joint pain is hard to accept. We are smaller than guys, wonder if the dose should be smaller for us. I did cut pill in half last nite, thinking toxic?was so unsteady yesterday and light headed. Pressure in chest. I took a lasix as I felt water retention, had cardiomyopathy last year from a cold, ended up w a pacemaker. Think hep c was killing my immune system. Shortness of breath was my first indication of my heart being overloaded. Get your heart n lungs checked, k? Fluid retention can tax heart and lungs. They don't advertise all complications, very new and making a crazy amount of money with this drug.I am a nurse, know that side effects can hurt us. Protect yourself☺️I'm itchy too

Getting well · « **Reply #115 on:** April 26, 2015, 10:49:18 am »

Espo, hang in there girl. This is a very short lasting treatment. I don't have all the previous heart problems you've had so I'll just deal with the shortness of breath as I have lately, which is to lie down or sit with my feet up and rest. I've only got 17 days.

I don't know if halving the pill is a good idea, seek your doctor's opinion first.

I have been treated by a rheumatologist for years, so I certainly understand your pain. For intense joint pain, one thing I do is keep the house as cool as I can and then use an electric blanket to warm my joints or a hot soak in the tub. It seems simple but it will help the joint pain. I am hoping that when I get the HCV cured it will cure the rheumatoid, if it is the HCV causing it. My rheumatologist tells me it will be a few months after treatment before he will do blood tests to ascertain this.

I am not light headed or unsteady. You may need to contact your doctor with those symptoms since it could be a problem with your heart and pacemaker instead of the medication.

I come from the opinion that everything is toxic to the body and that you need the right amount vs what side effects you can accept.

Makena · « **Reply #116 on:** April 26, 2015, 02:20:03 pm »

Hello, Makena here- I am also on 8 weeks. Day 8 of TX., also noticing immediate elevated energy. never had itching issues, or so far. Grateful about the potassium info. I have been taking BP meds long time. I am sure I have had this for many years. Was diagnosed in 2006 when I was in a college math class, will never forget my feeling of hopelessness, and shock. I had a bout with flu like symptoms that were not going away, and knew this was very abnormal, also at BW regular type, I was told my liver enzymes were slightly raised but nothing to worry about??? Well I am blessed that my biopsy was stage 1 fibrosis. Now I am 6 mil copies of virus, ultrasound no leisons, all looks good. Working and raising daughter. So far no sever sides. I will be monitoring posts, work 5 days a week so hope to get any messages or questions. I took Nutrition in college so if anyone has questions please feel free. I did not pursue the position as I didn't have the energy to go 80 hour weeks of work. My girl has autism so that is a job as well. She is my greatest and best reason for SVR! Blessings and Positive energy for all of us. Makena

Sailor · « **Reply #117 on:** April 27, 2015, 12:40:17 am »

Day 44 - Another day with no discernable side effects.

Lynn K · « **Reply #118 on:** April 27, 2015, 12:49:51 am »

Harvoni is not to be cut nor taken in half dose. The pill has a coating to control the timed release and by cutting the pill you have exposed the inside of the pill.

Please do not experiment with your medication if you have questions ask your doctor.

The drugs at the current dosing were tested on different types of people. body size is not a factor with the medicine.

Getting well · « **Reply #119 on:** April 27, 2015, 06:09:00 pm »

Good luck to you Lynn. I see you are nearing the end of treatment and I wish you the very best.

Makena, years ago before I ever knew I had the virus I had an episode of flu like symptoms and ankle swelling. That spell did not happen at the time I could have possibly been infected but I was sick for a couple of weeks. I now think it was the HCV. I had camped out (primitive camping) with my horses and since I've always wondered if that had something to do with suddenly being symptomatic.

I have 15 more pills to take and still only minimal side effects.

Sailor · « **Reply #120 on:** April 27, 2015, 11:28:32 pm »

Day 45 - Another easy day.

I took my father to the Dr. today who is my Dr. as well. I asked him about the end of my treatment and he told me there was no necessity for another 4 weeks of Harvoni. I have 11 days to go. Then I received a call from the insurance company nurse and she asked me to get a blood test the day after I am done with Harvoni. So I will do that.

I started this blog to record my experience with Harvoni for the benefit of folks who are considering treatment. I've been careful to try and separate out anything that I have experienced prior to taking Harvoni. For instance I have always experienced several head aches a year, a migraine from time to time. I have not been sleeping well for several years. I suffer from heart burn sometimes. I don't believe the continuation of these maladies while taking Harvoni are valid side effects.

I have suffered very painful experience with my back which I know was the result of lifting something I shouldn't have lifted. That happened early in my Harvoni treatment. I couldn't sleep for about two/three weeks as I could not stay in one position for more than 20 minutes. I still experience pain especially while in bed. I don't attribute any of that to Harvoni.

Maybe I have an increased appetite and I am sleeping better. Perhaps my blood pressure was elevated because of Harvoni. It is back down and the Dr. attributes it to the pain from my back injury, who knows.

The insurance company nurse told me that none of the folks they provided Harvoni to, who have finished treatment have relapsed. I should have asked how many folks. She seemed very confident of a success. I discussed that it would not be wise to forgo another 4 weeks, having invested in about $60,000 in 8 weeks treatment unless the confidence rate of success was high.

It is amazing to me that it has required so little effort on my part to be able to have a high probability of a successful elimination of the Hep C disease in my body. I contemplated the earlier drugs. Had I not had reason to expect that a drug such as Harvoni would become available, I would have tried one of them. The prospect of that was daunting at best. This is a medical miracle.

I was afraid to take Harvoni and I hope my experience will help others have less fear.

To those who have been sharing their experiences on this page, I appreciate your input and find it comforting. I think that you are providing a valuable service to prospective candidates for treatment.

Good luck everyone. For those of us who are getting to the end of treatment, lets hope for long term success!

Sailor · « **Reply #121 on:** April 28, 2015, 01:09:01 pm »

Day 46- This was another day with no discernable side effects.

Getting well · « **Reply #122 on:** April 28, 2015, 04:07:13 pm »

I have 14 more pills.

I awoke at 5am with vim and vigor like I used to. I hope I feel like this forever.

Sailor · « **Reply #123 on:** April 28, 2015, 05:18:09 pm »

There is no question I am sleeping better. Last night I woke up 3 times and fell right back to sleep.

I am putting in long work days. Worked 6-1/2 days last week. I'm tired of the project and can't wait to finish. Harvoni is not slowing me down.

Espo2 · « **Reply #124 on:** April 28, 2015, 05:33:35 pm »

Lynne k, Ty, called Doc, had me skip dose for a day. B/p is up. I'm sure meds go thru trials but we all have different issues. Glad some come thru easily. End result matters, how ever we get there. Good luck Sailor

Getting well · « **Reply #125 on:** April 29, 2015, 06:58:01 pm »

I started week 7 today and have only 13 pills to go. Yay!

I am still short of breath, headache-y and elevated blood pressure but, boy-o-boy do I feel better.

Had my children and their spouses over for Mom's home cooking and being able to do that hasn't been possible in several years. There really is life after HCV.

Best to all.

Sailor · « **Reply #126 on:** April 29, 2015, 08:24:15 pm »

Day 47 - Still feeling fine. I have 9 pills left. I am really interested to see if there are changes after the end of the Harvoni as I am for everyone else. Getting well, I'm really glad to hear you feel so much better. You must have really been feeling the effects of the Hep C. (Like I said earlier, I believe I have had Hep C for about 37 years, so I know no different.)

Espo 2, I'm glad you got things worked out with the Dr. The insurance company nurse was telling me they have a concern with folks who start taking the Harvoni erratically or stop after finding they are undetected. My concern is the opposite. I worry that if I don't get three months worth that I might be increasing the odds of relapsing. However, apparently, for folks with my stats, the protocol calls for 8 weeks. Time will tell. They told me if I relapse, I will have to wait for a new medicine. Don't get me wrong - from what I read we have 95%+ chance of full recovery. Those are pretty good odds!

kauri · « **Reply #127 on:** April 29, 2015, 08:46:44 pm »

Hey,

Sailor, you only have about 3 weeks! How good to know. I am half way through a 12 week course.

What a relief! Even though I had such a high viral count, I was UNDETECTED at 4 weeks...just found out! So I'm half way though the treatment. I'm doing fine, not even thinking about it anymore. Better remember to take the pill, though

My blood pressure is still a bit jumpy, but as long as I am careful to take it easy, I'm fine. In fact, I am doing better and better!

Best of luck to everyone, Yeehah!

Sailor · « **Reply #128 on:** April 30, 2015, 08:21:09 pm »

Day 48 - No side effects.

Kauri - This is great news! This drug seems to be the trick.

Yesterday I had to take my father to the emergency room and I talked the nurse into checking my blood pressure and it was 120/77 which is normal for me.

It difficult to remember to take the medicine. My worst was three hours late. My father takes about 9 medicines a day, but he is more organized with pill boxes. Don't let down your guard.

Getting well · « **Reply #129 on:** May 01, 2015, 01:54:30 pm »

11 more pills to take. I'm starting to go from feeling good to feeling great.

Good luck all!

catniss · « **Reply #130 on:** May 01, 2015, 03:57:26 pm »

CURED! Good luck to everyone! Stay positive. Harvoni is a miracle!

Lynn K · « **Reply #131 on:** May 01, 2015, 10:22:47 pm »

Awesome news!!!! Congrats Catniss another dragon down!

Sailor · « **Reply #132 on:** May 02, 2015, 01:45:01 am »

Day 49 - same old story- No Problems

catniss -- great news! I assume cured means un-detected 60 days after the end of your treatment? That's the real deal.

I've got 6 more pills in the bottle, then it's a waiting game.

Espo2 · « **Reply #133 on:** May 02, 2015, 10:07:29 am »

Hi everyone, I'm on week 7 Harvoni, undetected vl. I felt bloated and weight was up. B/p up.( I had cardiomyopathy 2 years ago from a cold. Ended up with pacemaker.) I took a lasix w potassium last night, dropped 6 lbs. Some of you w blusters, maybe loaded w water? Also become anxious, hip and pelvic pain was bad. Doc had me skip pill. I think for me, every day regimen is too much. Don't want to give up but also don't want more heart problems. Wonder if I need to skip when I see weight go up. Time to see my Internist, think there are a lot more side effects for some of us.

kauri · « **Reply #134 on:** May 02, 2015, 12:10:45 pm »

Hi Folks,

Looking back I think I probably cleared the virus in the first couple of weeks and after that had no more headaches. Now, I just pop my pill, and apart from taking it a little easy, don't think anymore about it.

Sailor, I don't know what I was smoking saying you had 3 weeks! Is it this coming Thursday? Wow! So since you started this thread, thank you for creating this support forum. It has helped me to have people to check in with.
All the best GETTING WELL, I hope you continue to find better and better things to bring you some comfort and relief. My favorites are weed, cannabis, bud, and marijuana. After that, a poor second come heating pads, ice packs, and various essential oils and ginger tea. I hope you find what works for you.
Wish all medicine delivered results like this!

Sailor · « **Reply #135 on:** May 03, 2015, 02:10:36 pm »

Day 50 - I'm assuming that the five pills I have left in the bottle are going to treat me the same as the others, meaning it is becoming anticlimactic.

For those who may be counting, the day report is for the pill I took the evening before yesterday. So I took one last night which I haven't reported on.

kauri, when I look back I agree that the virus likely clears quickly. Although I have never felt poorly, I have a sense that I was more affected by the medicine early on.

Espo2, I'm sorry you are having a rough time. I'm sure some find the Harvoni treatment more difficult than I. I am fortunate not to have other medical issues to contend with while taking Harvoni. I can tell you that my back problem was extremely difficult to contend with. I couldn't lie down or sit up in apposition for more than 20 minutes. I slept on my hands and knees for 2 hours! That was the only position where I didn't experience excruciating pain after being in it for more than 20 minutes. My back is about 80% better.

So my back problem superseded my Harvoini treatment experience.

I assume you are on a three month program. Hopefully soon you will see the light at the end of the tunnel.

Getting well · « **Reply #136 on:** May 04, 2015, 10:28:26 am »

8 more to go and I'm still feeling fine.

sr110435 · « **Reply #137 on:** May 04, 2015, 11:44:19 am »

Well all, i am on week 4 of harvoni and ribaviron i got my results from the 1 st test and it was great ast: 20 alt: 22 and it was like 66 and 70 when i started !!! yahha!! my blood pressure has also been elevated, before i started it stayed around 130/80 and when i went to dr. it was 172/105 i have been taken it at home and it has been about 150/99 - 155/103. everything is looking great as far as my blood test but i am on treatment for 24 weeks ( 6 months ) . i have failed treatment 3 times with interferon and ribo and the last time a new med was added but hep mutated and they stopped treatment. i pray that doesn't happen again. by the way i think i got the hep in Vietnam in 1972. it was found in 1995 after i went to give blood. my wife has been a real trooper without her help i don't know if this would be possible. the headaches and i seem to have a couple of good days then a bad day ( no energy )feel drug out . but compared to what i went through with the other treatments the is a piece of cake i.e. i think its because the ribo.

Keep plugging along and it will get better !!

Sailor · « **Reply #138 on:** May 04, 2015, 03:33:18 pm »

Day 51 - Happy to be alive. No side effects. 5 pills to go.

Getting well, I'm going to beat you to the finish line!

sr110435, did you get a viral load count when you got the blood test? I wish you the best of luck. It's got to be a lot tougher when you have tried before.

kauri · « **Reply #139 on:** May 04, 2015, 08:18:45 pm »

Hi sr110436

Let's hope this is the magic to send this mutating beast packing for you. Thank you for serving and sorry it cost you this. I like your attitude.

Getting well · « **Reply #140 on:** May 05, 2015, 03:16:17 pm »

I start a new toothbrush and new week tomorrow. My last week. As I take mine early mornings, I have 7 pills left in the bottle.

Good luck to all.

Sailor, I suppose you should scoot us on over to the post threads. Save me a seat.

I'm anxious to see what it feels like off treatment.

Sailor · « **Reply #141 on:** May 05, 2015, 04:32:29 pm »

Day 52 -3 pills in the bottle! The sun is shining and I feel great. No after effects and my back has improved significantly.

Getting well. I don't know much about blogs so I'm not sure what you mean about scooting over to the post threads.

I, too, am real interested to see if I notice anything after ending the medication. The insurance co. told me to get a load count test just at the end of treatment and then 3 and 6 months. Those are huge milestones. I'll continue to comment about how if feels after the medication ends and on my test results.

I hope this thread continues as my purpose when I began this was to provide real life experiences for prospective treatment candidates. I really didn't know what to expect before I took the medicine. I guess I'll make some comments about the overall experience after I see what its' like after finishing the medicine.

I change my razor every week or so and I should change my toothbrush now. I only changed it once so far.

Sailor · « **Reply #142 on:** May 06, 2015, 01:32:52 pm »

Day 53 - Another easy day.

Getting well · « **Reply #143 on:** May 06, 2015, 09:56:56 pm »

Sailor, please do continue to comment here, I follow it everyday and am interested to read how, if any, things change when you have completed treatment, as I am just days away from you.

What I referred to in the previous post is that there is another thread on this forum that someone requested that we post our after treatment statistics.

I saw my doctor last week and will go back in August for the twelve week blood draw and follow up. She said she would order other labs for the 8 week end of treatment if I wanted but I declined. This has been so expensive that I really didn't want it to cost more in expensive tests than necessary. Although my insurance has paid for everything so far, in the scope of things, everyone ends up paying more due to unnecessary expenses.

I've done so well I even felt guilty for the appointment last week thinking someone else could be using that time slot.

Sailor · « **Reply #144 on:** May 08, 2015, 02:59:36 am »

Day 54 - Another easy day.

Getting well. I just wrote a long reply and lost it. It went something like this:

When I go to see the Dr., he looks up on his computer what I should do next regarding blood tests. I wish I could access his web site. He says I should get a viral load count at 3 and 6 months after completion of treatment. The insurance company nurse called me the other day and told me I should get a load count right when I finish the medicine.

I am responsible for the fact that I have Hep C. I mentioned to my Dr. about the my concerns about the cost. He knows how I contacted Hep C. He snorted and replied, "I could blow through $60,000 in a week if you have serious liver problems".

I am finishing up a 8 week program at a cost of $60,000. I spoke to the Insurance company nurse about an additional 4 weeks and they don't want to do it. They must have a lot of confidence in their decision. It would not make sense to forgo another $30,000 of treatment, if they didn't believe 8 weeks was enough. If I relapse, they said I would have to wait for a new drug to be developed and start all over again. I wonder if they are really paying $30,000 per month as I have read that lower prices have been negotiated.

I am 1b with a low load and F2, which calls for 8 weeks.

The ethical question of society paying for my self inflicted disease is a tough one. However, people smoke, drink, do drugs, eat too much, injest too much sugar, run too much, get rescued on mountains, etc.

I have sailed around the world to many remote places. My conclusion is that the affluence of American life is absolutely astounding. We are like the thin film of oil floating atop the sea of humanity. I have a neighbor who has spent $20,000 on his dog's health care! Someday I may be rescued at sea. How do you know where you fit in ethically in such a society.

I work 6/7 days a week when I'm not sailing. I would like to think that the benefits to society because of my endeavors outweigh the detriments to society resulting from my existence. It's all subjective.

Getting back to the blood tests and their cost, I think I'll call the insurance company nurse and ask why I should get so many tests after finishing treatment. Perhaps, it I came back detected, they might put me back on for another month. Who knows.

Sailor · « **Reply #145 on:** May 08, 2015, 06:14:51 pm »

Day 55 - No side effects.

I took my last pill last night. I will report on that tomorrow. I guess the effects (if any)start wearing off this evening. It's is going to be amazing if the Hep C and the horror of having it are gone for good! I'll know in 6 months.

Getting well · « **Reply #146 on:** May 08, 2015, 06:44:31 pm »

Congratulations!!!! I was getting ready to post that I thought you would be done with the treatment when I saw you had posted. I have 4 pills left in the bottle, I'm right behind you and can't wait for you to let us know if you notice a difference.

Certainly I have received more from this world than I brought with me. I live in rural KY where there is a lot of poverty. There is only one GI in town (out of 2) who is treating HPV and at the present time is not accepting new patients. The hospital is not much more than a first aid station and dictates how many of what type patients the doctor can accept. Poor people cannot afford to make out of town trips for their health care so, I suppose, that would explain my wanting to not take unnecessary time or tests.

I feel absolutely no guilt for my treatment as I have always given back to society as best as I knew how. I just have much sympathy for those who have so little.

On another note, please let us know your progress.

Sailor · « **Reply #147 on:** May 09, 2015, 12:33:27 pm »

Day 56 - No problems. I'm finished!

I've been worrying about my liver for 30 years when I was denied a life insurance policy. It wasn't until about 10 years when my Dr. has a suspicion and ordered a Hep C test. Then the liver biopsy. Imagine that I can close this chapter. I'll know in 6 months.

For me the side effects of Harvoni we at most minimal.

kauri · « **Reply #148 on:** May 09, 2015, 04:03:38 pm »

Hi,

Sailor and Getting Well are finishing up their courses and I just got my third and last bottle for the 12 week course.
Discovered when I got the printed test results from the lab that my doctor had told me I was UNDETECTED, when in reality I was DETECTED under 15 per ml. I'm just getting to know this doctor, and I think he likes to play with his power a little. It felt good for him to tell me that I was undetected, even though I wasn't. I spose he thought it harmless, but it leaves a bit of an icky feeling and a little mistrust. I will let him know that I prefer precise detail, even when fudging is well-intended.

Sailor, I read that at least some, if not all, of the insurance had struck a deal with Gilead at 45% the asking price. They all made deals of some kind.
it pains me to hear you wonder if you really deserve proper health care. .
Your doctor is right, a penny saved now could be a foolish number of dollars down the line.
You are entitled to robust care, your role in your health problem is irrelevant.Are we going to punish you by refusing to help you get well? Imagine saying to someone, because you made that mistake, we don't want you to be able to get well, we want you to stay sick? If you think about it, we all want you to get well, it's in all of our best interests, even if we're being selfish.

I was interested to hear about your sailing. I come from a land of sailors...N.Z. Everyone in my middle school sailed little yachts. My most hair-raising time was sailing in Sydney Harbor, where the tip was: "If you capsize, jump into the sheets to avoid the sharks".

Sailor · « **Reply #149 on:** May 10, 2015, 03:30:01 am »

kauri - I'll say more about sailing some time.

I am going to ask for a copy of my report to see exactly what it says. I vaguely recall reading something about under 15, and I don't recall the details. I have been assuming that when I was told I was undetected, that I was at 0. I would be extremely upset if I felt a Dr. was intentionally giving me misleading information.

Here is some useful info below: In a nutshell a guess you just have to assume Harvoni works and that somehow the medical establishment knows it does. I don't think we as patients get the full picture very often..

When I saw a orthopedic specialist about back surgery, I left feeling that I had been given very good advice. A few days later I wished I could ask him 10 more questions. My back is getting better just as he predicted. I still think I received good advice.

Excerpts:

To everyone except physicians who treat hepatitis and fastidious researchers, the range of tests that someone with the Hepatitis C virus (HCV) endures can be dizzying. Unless you are lucky enough to have a hepatologist sit down and explain the differences and implications of each blood draw, it is easy to be misled by the barrage of lab test results. Especially important for individuals who are currently enrolled in or who have finished HCV antiviral therapy, understanding viral load tests can bring clarification to an otherwise confusing lab result.

Hepatitis C RNA tests are tools clinicians use to confirm a diagnosis and guide treatment. The challenge in discerning between the kinds of HCV tests likely lies in the similar sounding words to describe the tests: qualitative and quantitative. Even the most seasoned healthcare practitioners frequently flub these categories. Below you will find a brief description of the two HCV RNA (the genetic material for Hepatitis C) tests and a helpful mnemonic technique to differentiate between the two:
•Qualitative Test – This kind of test detects the presence or absence of HCV RNA. It is reported as either detected (positive) or not detected (negative). The qualitative test is useful to confirm an active HCV infection. The L in qualitative can be equated to a label – as in it is used to label someone as having or not having the virus.
•Quantitative Test – The quantitative test measures the actual number of copies of HCV RNA in the blood. Commonly referred to as the viral load, a quantitative test is typically used to monitor how a person is responding to HCV treatment. The N in quantitative can be equated to a number – as in it is used to report the number of HCV viral particles present.

More About Qualitative Testing

To report whether or not HCV is present in the blood, the qualitative HCV RNA tests use either a process called polymerase chain reaction (PCR) or a process called transcription-mediated amplification (TMA). If such a test is positive, or detected, then chronic Hepatitis C infection is confirmed. Although it does not compute a number, the qualitative test is more accurate than the quantitative test because it can detect very low levels of the virus.

More About Quantitative Testing

Quantitative tests that measure the actual level of Hepatitis C virus in the blood may use the processes of PCR, TMA or signal amplification (branched DNA). These viral load tests compute the number of HCV RNA particles present, and are expressed in either international units per liter (IU/L) or copies per milliliter (mL). The quantitative HCV RNA test is used to monitor individuals who undergo antiviral treatment – prior to beginning therapy, during therapy and upon its completion.

Additional Viral Load Test Facts

The following seven facts about Hepatitis C viral load tests help deepen our understanding of the testing process.
1.If someone has a positive qualitative test but a quantitative test showing no detectable virus, then that person has a very low level of the virus in his or her blood.
2.If someone has a negative qualitative test following antiviral treatment, they are clear of the Hepatitis C virus.
3.In order to obtain a sustained viral response (considered a successful conclusion to HCV treatment), a qualitative test should be negative following the completion of treatment and then again six months later. Most physicians will use a qualitative test (as opposed to a quantitative test) to confirm a sustained viral response.
4.Viral load as measured by a quantitative test does not correlate with the severity of Hepatitis C.
5.The viral load measurement does not correlate with the severity of liver disease. Only a liver biopsy (or equivalent method) can determine the health of the liver.
6.Because HCV viral load will normally fluctuate, repeated viral load tests are only indicated for those on or considering antiviral treatment.
7.If a quantitative HCV RNA result is reported as <615 IU/L, then the test is unable to measure any of the virus. Thus, such a result should be followed by a qualitative test.

Upon reviewing the differences between quantitative and qualitative Hepatitis C tests, there will be a little less mystery in deciphering lab results. Although HCV RNA quantitative tests are mostly used to gauge how someone progresses with antiviral therapy, the qualitative test is the only way to know for sure if the Hepatitis C virus is still taking up residence in your body.

What Are the Different Ways of Measuring HCV Viral Load?

Dr. Pearlman: RNA is the genetic material all these tests measure. Most experts measure it by a technique called RNA polymerase chain reaction or PCR. There's also a technique called branched chain DNA, and a newer technique called transcription mediated amplification or TMA. These are just different ways of measuring HCV RNA. TMA probably gets down to detecting the fewest number of copies, but most labs use PCR.

HCV Viral Load Used to Be Measured in Number of Copies. Now They Use International Units. Why?

Dr. Pearlman: Different laboratories don't use the same standard for counting copies of HCV RNA. So we're now moving to an international standard.

Dr. Anania: You can still get a copy number. But using international units (IU) is a way to uniformly report data throughout the world. Many lab tests are reported in this way. It standardizes test results between different labs."

Sailor · « **Reply #150 on:** May 11, 2015, 02:18:55 am »

Day 57 - I don't notice any difference one day after finishing Harvoni. I don't notice any difference from before I started Harvoni. I wouldn't have known I had Hep C if my Dr. hadn't figured it out. Now I have the hope that I won't suffer any negative impact from Hep C in the future. It is possible my liver will repair itself.

Sailor · « **Reply #151 on:** May 12, 2015, 11:40:51 am »

Day 60 I don't notice any difference since I finished the Harvoni.

Getting well · « **Reply #152 on:** May 12, 2015, 01:58:50 pm »

I took my last pill this morning and am looking forward to not taking it in the morning.

The past week or two I have had a tiredness that I didn't have before but still not the bone aching fatigue I experienced before treatment.

I suppose the 12 week time clock starts tomorrow.

Sailor, did you have any physical symptoms of the virus before treatment?

If you don't have cirrhosis, I think your liver will regenerate new, healthy cells. How quickly would depend on several factors including medications, diet, weight, genetics and who knows what else, is my opinion.

Debula · « **Reply #153 on:** May 12, 2015, 02:17:39 pm »

Congratulations to Sailor and Getting Well for being at EOT!

Good luck to you all and hoping for everlasting SVR!

kauri · « **Reply #154 on:** May 13, 2015, 12:09:27 pm »

Hi Everyone,

Thanks Sailor for the support over my doctor's ego and for the in-depth explanation of measuring quantitative and qualitative viral loads.
It's true that there is an important difference between the load being too small to count, and it being gone altogether. A leading hepatitis specialist at Cedars Sinai told me that the Hep C virus can be absent in the blood and still be hanging out in the organs. There is no way of truly ruling out that possibility, other than looking for it in the blood for a sustained period of time, and then hoping that means its really gone.
And, on the subject of virus count, I had 20 million IUs per mL a couple of years ago and only 10 million before I started Harvoni, but had no treatment at all. So the quantity in my blood halved, during a time I had no treatment. Suggests that it fluctuates significantly (halved) independent of treatment.
Anyway, I just take the med and am optimistic.
Lots of luck to everyone.

sr110435 · « **Reply #155 on:** May 13, 2015, 09:56:54 pm »

WOW, just got my results from being on harvoni and rib for 2 weeks and my viral load when i started was 4 million and now it is less than 100 !!! wow praise the lord !!
keep plugging along and it will get better

Sailor · « **Reply #156 on:** May 14, 2015, 02:05:14 am »

I'm starting to lose track of when I took my last pill, I think last Thursday. I don't know if I ever felt any effects of having Hep C. I think I have had it for over 30 years, so I don't recall any difference. If I felt any effects, it wasn't progressive. I don't feel much different now other than a sense of relief. It is likely that the virus is gone. I never experience any significant side effects from the Harvoni. So at a minimum in my opinion the virus has been beaten down and my liver has been given a break.

I have been fortunate not to suffer any other significant lasting health issues. My back is greatly improved.

Getting well, I'm interested to hear if you notice any changes now that you have completed the treatment. I am lucky because I am 1b and F2 and had a relatively low viral load.

Thanks a lot Debula for your kind words.

sr110435, congratulations on you test. May you go to zero soon!

kauri, you are welcome. I am going to discuss the type of test with my Dr. when the 3 month one comes up. I hope that it is undetected and that it is safe to conclude that if it were in my organs that it would have appeared by then.

I base some optimism on the report to me by the AETNA nurse that they have yet to see a relapse. I don't know how much history they have as Harvoni is pretty new

All please remember that I started this blog to inform prospective candidates for treatment of my experience with side effects and post your experiences so they better know what to expect.

mtbkr1030 · « **Reply #157 on:** May 15, 2015, 11:13:32 pm »

I'm on day 2 and the only side effects so far was some diahrea today and my legs, heels are a little achy. That could be from my 4.5 mile run I did earlier. So far, so good.

I'll keep you posted. Good luck to everyone.

Tom

Sailor · « **Reply #158 on:** May 17, 2015, 02:23:47 am »

Its' been about a week since I finished the Harvoni. I feel about the same and about the same as I did before I started treatment.

mtbkr1030 - good luck. I hope it goes well for you. Please keep us up to date on your experience. Were you apprehensive before you started your treatment because of possible side effects?

Thanks,

Sailor

How is everyone else doing?

KimInTheForest · « **Reply #159 on:** May 17, 2015, 02:37:11 am »

I'm on Day 12 of 84 days (12 weeks) of Harvoni+Ribavirin (a clinical trial for geno 3 people). So far sides are very minor or short-lived, and life is basically normal. I get a nice energy boost from the Harvoni which lasts 4-5 hours.

Good luck to everyone!
kim

mtbkr1030 · « **Reply #160 on:** May 17, 2015, 06:31:58 pm »

Day 4 no real side affects.

Getting well · « **Reply #161 on:** May 18, 2015, 04:51:34 pm »

It's been almost a week since my last Harvoni and the itching has finally subsided.

Other than that, no big revelations. Still have some ear ringing, shortness of breath, and tiredness.

I think I'm feeling a little better every day.

mtbkr1030 · « **Reply #162 on:** May 18, 2015, 05:15:18 pm »

Day 5, a little tired but that's about it.

Sailor · « **Reply #163 on:** May 26, 2015, 02:20:25 am »

It has been about 2 weeks since I finished treatment. I don't notice any differences from when I was taking Harvoni. Mentally I've moved on and don't think about it as much. As I approach the three month test, I'm sure I will become more focused on it. Right now it is just nice to not have to worry about taking the pill each day.

I hope things are going well for all. I'm curious Getting well how you are doing and I assume mtbrk1030 that you aren't experiencing anything different. How about everyone else?

Getting well · « **Reply #164 on:** May 26, 2015, 08:32:19 pm »

Today marks two weeks since end of treatment for me.

I still have some shortness of breath and tinnitus but it seems to be getting a little better all the time. My blood pressure is about where it usually is.

I have more energy, but still have to pace myself.

I am much better than I was before I began treatment.

I still have some RA symptoms/aching joints but those days are fewer and farther between.

When I have my 12 week end of treatment blood test I think I will also have my Rheumatoid Factor checked to see if those numbers are lower.

Keeping my fingers crossed.

For anyone following this, the first month was great on Harvoni, the second month was some, mostly minor, side effects and now two weeks later they seem to be mostly gone.

Thanks for letting us know how you are doing, Sailor.

Wishing all the best to us all.

Sailor · « **Reply #165 on:** May 26, 2015, 11:02:39 pm »

I still have tinnitus, too.

Sailor · « **Reply #166 on:** June 09, 2015, 10:42:08 pm »

I think is fair to say that I am sleeping better. As a matter of fact I woke up this morning and decided to comment here about it. Then when my wife came downstairs, she said she thought I was sleeping better. Quite a coincidence.

Getting well · « **Reply #167 on:** June 10, 2015, 08:49:51 pm »

It is now 4 weeks since end of treatment. I am still on the mend. My blood pressure is now back to what it was, the tinnitus is still there but not as frequent. If I overdo it I get really tired the next day but I am still better than before I got treatment.

Sailor · « **Reply #168 on:** June 11, 2015, 02:43:39 am »

Good to hear you see improvement, Getting Well.

I've been living with Hep C for so long it was hard to think it could be any different. There is no question I'm sleeping better and that helps a lot. I'm working extremely hard, 7 days a week 12 hours a day. Sometimes I get irritable, but I don't think that has anything to do with Hep C or the (hopefully) lack of it. If my improved sleep continues after the project is over in about 2 months, then I can attribute it to the cure.

My diet is horrible, but somehow I manage not to be at the right weight. When the project is over, the exercise and hopefully improved diet begins.

Two months until the 1st test since completing the Harvoni treatment.

Good luck to you, Getting Well.

Sailor · « **Reply #169 on:** July 27, 2015, 12:27:36 am »

I'm going to try and schedule a viral load test for August 8th, just before I go on a 2 week trip. That will be close to 120 days since I took the last pill. In general I continue to sleep better. Lately, I haven't given much thought to the status of my HEP C infection as I've been waiting for the time to elapse for the 90 day test. Hopefully, it is gone.

I'm going to ask my Dr. to get me the best test possible. I think it is a good idea to prompt the Dr.

Sailor · « **Reply #170 on:** September 10, 2015, 02:42:26 am »

My 1st blood test since finishing treatment is this Friday.

KimInTheForest · « **Reply #171 on:** September 10, 2015, 11:37:29 am »

Quote from: Sailor on September 10, 2015, 02:42:26 am

My 1st blood test since finishing treatment is this Friday.

Good luck, Sailor! I am sure all will go well on your results.

kim

Sailor · « **Reply #172 on:** September 11, 2015, 02:54:19 am »

Thanks Kim In The Forest. I see your results were just fine. Congratulations. I should get the results next week.

Sailor · « **Reply #173 on:** September 18, 2015, 02:54:53 am »

Got my test results today after stopping Harvoni about 14 weeks ago - nothing detected. One more test to go and that should be the end of it.

Bree · « **Reply #174 on:** September 18, 2015, 03:03:17 am »

Good on ya Sailor!

Sailor · « **Reply #175 on:** January 21, 2016, 01:06:08 am »

I just got my 6 month blood draw today. I'll hear in a few days if I am still clear. I should have gotten it sooner, but I just got around to it.

Bree · « **Reply #176 on:** January 21, 2016, 03:32:22 am »

I'm sure it's all good!

Let us know...

Sailor · « **Reply #177 on:** June 16, 2016, 02:40:44 am »

I went sailing and didn't return until May so I got my results from the blood test in December just recently. It was earie wondering for 4 months about the results. Well they came back negative. I may be tempted to get another test in a year or so. I don't feel much different than before I started the treatment. The hep c has been with me for such a long time, it is hard to believe it is gone. I'll write my "kind of" final thought one of these days.

All I can say now is there was a lot of build up to the treatment and it really was a non event. I doubt I would have been aware of the medicine if I had been given it without my knowledge.

Bree · « **Reply #178 on:** June 16, 2016, 03:23:01 am »

Congrats Sailor! I would have gone crazy wondering about the test results... although we all have to wait anyway so what difference does it make, I suppose.

Living without HCV is a big event for me, even though it seems like it never existed now, except for the memories... more like nightmares of knowing I had it but I just went on anyway. I'm happy it's gone and it feels like it was supposed to be gone. I knew it's time was up. I even told the virus it had to go now.

I agree, the whole hassle about getting the meds was the biggest part. ... that and the hope of a living free of this stupid virus. I was a lucky one on every level... finally getting the meds and sailing through the treatment for the most part. I feel like I'm just living, the way it's supposed to be, without the extra baggage. Again, congrats!

Sailor · « **Reply #179 on:** November 11, 2016, 03:01:06 pm »

Thank you, Bree, for your comments and congratulations on your results. I received the results from another blood test about 30 days ago and all is good! I don't think it's coming back.

I'm a believer in Harvoni and I had an easy time with it.

Sailor · « **Reply #180 on:** September 03, 2017, 01:02:44 pm »

It has been a couple years since Harvoni treatment. I haven't had any problems and rarely think about HEP C anymore.

RoMo · « **Reply #181 on:** September 03, 2017, 04:01:42 pm »

Hi Sailor,
I'm happy to hear that. I was reading your tread on summer 2016 after I was found with hep.C. I manage to find in Mongolia (I'm from Romania) the Harvoni generic LEDVIR a lot cheaper.
After four weeks of treatment the virus was undetectable, till now it is also undetectable.
On October I will be six months after the treatment, I hope that will remain undetectable.
I'm also a sailor (offshore big vessels) and I was taking the treatment during the sailing without side effects.
Sorry for my English, I hope
Thank you for your helpful tread.

KimInTheForest · « **Reply #182 on:** September 09, 2017, 10:54:26 pm »

Quote from: RoMo on September 03, 2017, 04:01:42 pm

Hi Sailor,
I'm happy to hear that. I was reading your tread on summer 2016 after I was found with hep.C. I manage to find in Mongolia (I'm from Romania) the Harvoni generic LEDVIR a lot cheaper.
After four weeks of treatment the virus was undetectable, till now it is also undetectable.
On October I will be six months after the treatment, I hope that will remain undetectable.
I'm also a sailor (offshore big vessels) and I was taking the treatment during the sailing without side effects.
Sorry for my English, I hope
Thank you for your helpful tread.

Congratulations RoMo on your success with Harvoni and clearing the Hep C from your body!

kim

Sailor · « **Reply #183 on:** May 17, 2020, 02:07:20 am »

It's 5 years later and I have only thought about hep c a few times. All evidence is that I have been free of hep c for 5 years.

KimInTheForest · « **Reply #184 on:** May 17, 2020, 01:18:29 pm »

Quote from: Sailor on May 17, 2020, 02:07:20 am

It's 5 years later and I have only thought about hep c a few times. All evidence is that I have been free of hep c for 5 years.

That's awesome Sailor! Me too as far as I know. We both treated with Harvoni in 2015. Yay!

kim

Lynn K · « **Reply #185 on:** May 18, 2020, 02:42:10 am »

Hey congrats to you Sailor and Kim. I’m also hep c free since four weeks after starting treatment in Nov 2014. Had a couple of viral load tests long after finishing treatment. One was spring 2018 and still no viral load so I guess I’m also hep c free. Still have liver cirrhosis though but at least it seems to be stable.

Best to all

I fightis thetitis · « **Reply #186 on:** May 24, 2020, 04:49:32 am »

Awesome everybody!
Congrats!

I just past my 212th week EOT, thats 4 years+. and hep free,
Occasional left flank pain and prob still F4 but hanging in.
Ultra S next week.

Stay safe everyone.

Best always,

Greg

KimInTheForest · « **Reply #187 on:** October 22, 2020, 12:06:13 am »

Quote from: Lynn K on May 18, 2020, 02:42:10 am

Hey congrats to you Sailor and Kim. I’m also hep c free since four weeks after starting treatment in Nov 2014. Had a couple of viral load tests long after finishing treatment. One was spring 2018 and still no viral load so I guess I’m also hep c free. Still have liver cirrhosis though but at least it seems to be stable.

Best to all

That is awesome Lynn! You have gone through so much treatment-wise. So great that you are finally free of Hep C. I am seeing this message months late for some reason. oh well! Thanks for all you do in answering patient questions here all these many years!

kim

Lynn K · « **Reply #188 on:** October 22, 2020, 01:23:49 am »

Hi Kim long time no see I hope your doing great!

Me still hanging in there

KimInTheForest · « **Reply #189 on:** October 22, 2020, 03:42:09 am »

Quote from: Lynn K on October 22, 2020, 01:23:49 am

Hi Kim long time no see I hope your doing great!

Me still hanging in there

I'm doing pretty well these days! we are survivors!

kim

Lynn K · « **Reply #190 on:** October 22, 2020, 02:24:36 pm »

Quote from: KimInTheForest on October 22, 2020, 03:42:09 am

I'm doing pretty well these days! we are survivors!

kim

Amen Sista high five

Sailor · « **Reply #191 on:** February 28, 2021, 01:06:39 am »

Now it is 2/21 and I rarely think about hep c. It is a thing of the past.

I got my covid vaccine 2nd shot 3 weeks ago. Life moves from one drama to another.

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