I quit my Harvoni treatment

[julu49]

Hi All, I've decided after 2 tests clearing me of Hep C and facing yet another night of unbearable pancreas pain, to quit the treatment. I was on the low end of everything to begin with and yes, I suppose it could come back but the damage it could have been doing to my belly are not worth it to me.
After only one night without I was back to my "normal" pain level with my panc. We'll see.
My PCP told me I don't have PAD or neuropathy (my big worries) and that I should report it to my Harvoni team. She has many patients on Harvoni who have similar complaints.
I feel somewhat guilty since most of you have fought tooth and nail to clear this disease and I'm ending my treatment. I believe I've cleared it after two tests showing just that. My pancreas and the pain it causes has always been my first and foremost concern. Wish I could buy a rebuilt somewhere. I'll keep you up to date, not going anywhere as far as the board. Too much to learn.
julu

[hope2bcured]

Hi,

I am sorry you had to have that experience. I almost quit mine due to cardiac issues, that really scared me, but, they upped my blood pressure meds and closely monitored me, and I stuck it out. I am just 4 weeks post tx, and feel worse than I ever felt in my life. 2 nights ago, I had severe belly pains, and almost went to the ER but, I stuck it out. Im going to get some castor oil, that I read about on here as well as used them in the past many years ago. If you have 2 cleared tests, I bet you will be just fine!! How long were you supposed to go on tx for? Are you treatment naive?  Hoping you feel better soon!!!

[KimInTheForest]

Hi Julu. I know it was a really difficult decision for you. But on any such major decision, in the end you have to go with what your body and heart and spirit (and in your case pancreas) are telling you is the right thing to do. Our bodies have great wisdom - more than our 'rational' minds. It takes courage to listen to your body.

Best of luck and keep us posted.

kim

[chino1969]

I am really sorry to hear that.  It seems that some have mild tolerable side effects while others have worse.

[julu49]

Wow  am I pleasantly surprised. I thought sure I was going to get blasted but instead got wonderful warmth and understanding. You have no idea how much I appreciate this. I had two frantic phone calls from my Harvoni team when I got home. In the long run, it is my body and they are welcome to step into my pain, if only that would work we'd have more compassion for others than we do. You guys are great! Hope2be, please check out your belly pain. If it's that painful there is something wrong. Try Miralax too if you are constipated. It works and is much more pleasant than Castor Oil. Yuck! Whatever works, still, go see a GI have them do labs to check out your gallbladder, pancreas, etc. it's nothing to mess with. Thanks again, guys

[Mugwump]

Sorry the pain did not ease off! I was very scared as my blood pressure went up during the second half of treatment. The liver pain was much worse than it had been, others here on the forum; like Mario had a similar increases in difficult hepatic pain. I did find that two tablespoons of good old olive oil straight helped me clear out my digestive problems and did help me settle down my guts which were starting to sound like an old washing machine. Strange but years ago I tried using straight pure olive oil when nothing else worked to clear things out after the first round of treatment.

Maybe it is an old hocus pocus remedy but it seems that olive oil is really easy on the digestive tract and the liver for some strange reason. Now every once and a while I get a hankering for just eating straight Caesar salad dressing. I am not Italian but maybe I was in a past life WHO KNOWS. Now I love the old standard pre meal tradition of fine breads dipped in olive oil and balsamic YUMM ..How can you tell I am getting ready to cook dinner 

Go easy on yourself and I fully understand your decision. Like everyone here we want to see you post a happy dance to the SVR threads!

I read somewhere that early trials with lesser periods of treatment were almost as successful as the recommended treatment periods, so if you are clear now the chances are excellent for success. Better than S and O treatment and is the reason why Harvoni was fast tracked.

My thoughts and best wishes are with you
Eric

[julu49]

Hahaha! Too bad you missed out on the Italian heritage. I'm Italian mostly with some Irish and Portuguese, the best of the 3 for sure food wise is my Italian half. I only wish now that I could enjoy it. You give some great tips for cleansings. Unfortunately my troubles are with my pancreas. I thought long and hard about it, have threatened many times but there comes a time when you just know. I'm hoping my undetected status stays this way, my Harvoni team will still me monitoring me. I appreciate your input on the treatment periods. Thank You!

[dragonslayer]

JuLu,  sorry if I missed this in your post, but could you tell us what was your prescribed treatment duration, and how much of that you were able to complete prior to quitting?  Also, post your pre treatment viral load if you know it.... Best of luck to you!

[julu49]

Hi Dragonslayer, Good questions. I had a 12 week treatment ordered because although I've never had raised ALT or AST and my viral load was 1.1mil. (low from what I see here I think) I do have grade 3 tissue damage. I'm currently at 9 weeks. I've also had 2 undetected tests, one at 4 weeks and one just last this Thursday. I'm hoping it won't come back and that the pain won't come back the same as it was while I was on it, after all, it's only been 2 days. Hope hope

[dragonslayer]

Julu,

Since you were well below 6 mil viral load when you started and have completed 8 wks of Harvoni,  I think you likely have a good chance of remaining Undetectable.   Keep us updated, and I wish you the  best.

[julu49]

Thank you!!!!! . I will let you all know how it goes.
julu