Author Topic: Just started Harvoni tonite! (Read 24759 times)

harvonitoo · « **on:** November 21, 2014, 01:12:18 am »

I just started with my first pill of Harvoni tonite! Hope is gonna kill the beast! Knock on wood!:) then I'll have to worry about cirroshis afterwards but hopefully that will get a bit better if I clear hep c...

BattleTheBeast · « **Reply #1 on:** November 21, 2014, 01:30:17 am »

Hi Harvonitoo!

Welcome, I hope you and the rest of us win this battle with the beast. I have cirrhosis to deal with as well but we will beat the beast and then deal with that.

~Mel~

harvonitoo · « **Reply #2 on:** November 21, 2014, 02:23:37 am »

Thank you Mel it's always nice to be able to share on here our experiences and fights against the beast! Best of luck to you and everyone else !

harvonitoo · « **Reply #3 on:** November 25, 2014, 02:15:22 pm »

Took my Harvoni about 6 times and I sure hope I won't have any side effects land it stays like this! I don't even have any headaches or feel tired from it. I even went to exercise yesterday day for two hours! All the anemia I went through with interferone is history, this Harvoni is a breakthrough! Happy Thanksgiving everyone wishing you good health and happiness!

emmett · « **Reply #4 on:** December 15, 2014, 01:40:05 am »

Started harvoni thanksgiving day, f3, 1a and prior use of rib/interferon but quit 2 months in due to side effects, hiv as well. I thought this would be a breeze but feeling really weird, especially after I take the drug, almost like a spacyness that I can't explain and I did start getting low grade headaches, that I can handle. It's the anxiety I get at night, my skin feels like it's crawling and I get really hot, start to sweat and feel a burning sensation over my body. I feel a tightness in my chest tonight and greater anxiety than usual, hope I feel better tomorrow, a little over 2 weeks now. Who knows how accurate any of the tests really are, I was f2 a few years back and then I had a liver biopsy that showed no fibrosis and now the fibro test shows f3. I'm more prone to believe the f2 a few years back since i have been feeling worse and worse and not surprised by the f3 but none the less scared and hoping for the best, the cure. For so many years I avoided drugs and alcohol, I wish better drugs had been around years ago so I could have had a more normal life. It's been a bear trying to date and tell folks I'm HIV let alone HEP C, it's been hard...people always ask if I'm in AA when I tell them I don't drink or refuse to do the toast with alcohol, not that I wouldn't like it.

BattleTheBeast · « **Reply #5 on:** December 15, 2014, 08:39:09 am »

Hi Emmett,

Sounds like you are on your way to the cure! I hope you continue to do well on the Harvoni and at least get that clear. Then you can focus on keeping the HIV under control. I can't imagine how hard it must be to deal with both.

Keep your chin up and know that once you beat the Hep C you will have once less challenge to deal with and you can also help others with your experiences. Perhaps by sharing you will find that perfect someone going through the same challenges as you.

When people ask me about drinking, I just say it's a personal choice and I am working on being more healthy which doesn't include alcohol for me. Heck, if they aren't important people I would just let them think what they want. I am also to the point where I would tell someone I have HEP C. The shame that accompanies this infection needs to go away.

Mel~

emmett · « **Reply #6 on:** December 16, 2014, 05:43:03 am »

Thanks Mel for the wonderful reply to my post. It took years of shame to finally tell one of my closest friends why I'm always feeling so terribly drained and sick feeling, maybe it was him getting sick and feeling so down recently but I was afraid that he would judge, I already told him about the HIV, how much more did I want anybody knowing. People do judge harshly and it took telling one friend a few years back and his reply that shut me up. I told him about my HEPC and he said, "I'm sure glad I didn't sleep with you". Unfortunately I had heard him talk poorly about people with HEPC, he'd say they were promiscuous or using drugs and while I always argued against this short sited belief I knew a lot of people felt this way and my fear did not let me own the disease. Heck, even my family doesn't know and now that I look back it was adding to my stress and probably making me sicker having to do this alone.

I've been spiritual, meditated, helped others as sick as I am continue to do so, taught music therapy classes and play music on the street to help my stress but still was afraid and lacking the courage to help myself completely. It has only been recently that I've begun to deal with this, never too late some say but I say why did I wait. I guess as humans we are strong in some ways but weak in others and it takes us a bit of time to work on our greatest challenges. It has been a relief to tell my story to my good friend and he has been very supportive...this time my fear was uncalled for. Slowly now I'm beginning to not be so afraid of what others think, being gay has a lot to do with this and the reactions I have gotten through the years, (another story) but I'm still afraid of death and HEPC was forcing me to deal with that fear. I remember living in Arizona and calling an ambulance when having a scary asthma attack, when I told the arriving help that I had HIV one of them pulled away and refused to treat me, luckily her colleague started my IV and took control but it made me reluctant to divulge my status to others and that was many long years ago.

One of the good things for me is getting back to mindfulness meditation again and relearning how to deal with old fears, shame and all the big ones that kept me down but not out. Coming so close to death that I could taste it and I've been there before kind of made me feel that I wanted to give up and let nature take its course, Harvoni was a real kick in the hope bucket again for me but the wait was excruciating. Thinking I was going to die soon made me think it wasn't worth the good fight once again, did I even have the strength for it but I saw everything changing including my health, stopped my volunteering and a lot of the fun things I used to do, everything that is but my music. I'd feel so much stress, fatigue and then the hopelessness would set in but often I'd pick up my drum and go out to the streets and play for myself and others, it often took me out of my pain and despair and it was those countless collection of moments that brought me safely to Harvoni and today. I sure hope that many of us beat this disease, life is hard enough without it, even though it doesn't always have to be.

BattleTheBeast · « **Reply #7 on:** December 16, 2014, 06:59:24 pm »

Emmett,

Your strength is amazing and your journey has been really tough. I hope you continue to gain the peace inside you need. Not everyone will understand your challenges and may turn their back but if they do then they were not really there for you in the first place. It's not shameful to have an infection, it's shameful that we feel we have to hide what lot in life we have been given. I am learning more and more every day to accept that I am who I am and today I am UD but in a few months it could come back or I come get something else. I'm only as strong as the people I allow myself to be around and share who I really am.

Keep on keeping on Emmett, life is a journey and we need to make the best of it no matter how many boulders we have to climb over.

Mel

emmett · « **Reply #8 on:** December 20, 2014, 09:25:57 pm »

Thanks Mel, let me know how you're doing. Your reply was spot on and appreciated.

BattleTheBeast · « **Reply #9 on:** December 20, 2014, 09:37:58 pm »

Hi Emmett,

Glad to be here for you and make a little bit of a difference.

Today was a great day and I am happy to report that I think I get more human every day I take Harvoni. I don't think I am going to want to stop it when the time comes because I haven't felt this good in a really long time.

Tomorrow well, I will pray tonight that I feel as good tomorrow as I did today and if I don't I will deal with it. Make sure to get plenty of rest and eat healthy. I just realized that yesterday was my 1 year anniversary of quitting smoking, hooray for me!

Hope today was a good day and tomorrow is a little better...

Mel

badbradley · « **Reply #10 on:** December 20, 2014, 09:42:53 pm »

Hello Emmett, Just saying Hey from one drummer to another - Welcome to the group.
Brad

emmett · « **Reply #11 on:** December 21, 2014, 02:57:56 am »

December 26 will be one month on Harvoni and time to do the blood draw to see if I'm undetectable...hoping for good news. I did labs checking on alt etc. and all are in the normal range, good news there. Yesterday night was the first night I did not get sweats and extreme anxiety but still aching all over my body, things seem to be getting better but I can't wait to be off of the drug. I haven't experienced the great feeling others have had but I still think I'll reach that goal soon, the only place to go from here is up. Went out and had a good steak tonight, I've tended to say away from beef the last few years and other things that are bad for me but at the same time my desire for coffee has gone through the roof and I crave it all of the time which is unusual for me. I've always drank my coffee black but craving cappuccino now. I love sitting outside this time of year in Palm Springs and people watching, more coffee required for that, :-).

I was worried about being on truvada for HIV since the reading material for Gilead Harvoni mentioned there may be a drug interaction but so far nothing wrong so I'll continue HIV meds same as before. I have two great doctors helping me out, one of them calls me honey and gives great hugs, the other guy is a warm and energetic guy that fights hard for his patients...I'm lucky to have them both.

BattleTheBeast · « **Reply #12 on:** December 21, 2014, 05:30:38 am »

Emmett,

I will say a prayer for you but don't get disheartened if it's not UD, I wasn't UD until week 9, as long as there is progress it's a really really good thing. I was all upset when I first got my results and it wasn't gone but after asking around and talking to people it's not all that unusual. So just a heads up, that it may take more than 4 weeks to be completely gone!

Mel

emmett · « **Reply #13 on:** December 21, 2014, 09:49:53 pm »

Thanks, it's good to hear because I might have been upset if it wasn't undetectable. I feel so spacey today, have had trouble staying awake, harmony makes me so tired. Maybe it's a good think, I've always been a guy that does a million things at once and even if I feel tired as hell. You're very good soul, :-) Mel.

BattleTheBeast · « **Reply #14 on:** December 21, 2014, 10:24:53 pm »

Quote from: emmett on December 21, 2014, 09:49:53 pm

Thanks, it's good to hear because I might have been upset if it wasn't undetectable. I feel so spacey today, have had trouble staying awake, harmony makes me so tired. Maybe it's a good think, I've always been a guy that does a million things at once and even if I feel tired as hell. You're very good soul, :-) Mel.

Hey Emmett,

If you are reacting anything at all like me those first few weeks I was tired but I think it was the battle fighting the virus. Try to think of it more like HOORAY I am fighting this beast inside of me!
Just listen to your body, maybe switch to take the meds in the evening, quite a few people on the forum went that route. You will want to slowly add a couple of hours each day till you get it to the time you want to take it per my Dr's instructions.

Just remember you are fighting that virus inside of you with the help of some serious medications. The spacey is a little brain fog, I am 11 weeks in and still have it come over me a few times a day. Especially when I am trying to think of certain words or how to spell something, super annoying!

Get some rest, tomorrows a new day to celebrate that you are on your way to UD and SVR!

Mel

emmett · « **Reply #15 on:** January 03, 2015, 03:11:49 am »

Hi Mel,
I was on pins and needles all day, matter of fact I was a nervous wreck all month waiting for the 1 month milestone to get my results to see if Harvoni was working. To be honest the side effects are nothing like interferon/rib. but not easy either, I've had some irritating side effects from Harvoni and feel like crap but it isn't killing me like the other crap and I can handle it. Today was the day I went to the doctor to get my results and my stomach was a mess and it was maddening waiting in the doctor's office. The doctor gave me the good news, I'm undetectable after 1 month, I'm elated and I actually cried when I got in the car, not my usual MO. Sounds like I have a pretty good shot at curing this beat and with F3 it couldn't have come soon enough. I went out in the desert today and played my drum like a bat out of hell and let all of the stress out, I even played my drum in my doctor's office as the staff wanted to hear me play, not that many people have heard West African drumming and I can't refuse an audience but I still love being alone out in nature playing by myself and for me.

Thanks for some of your wonderful replies, I always enjoy hearing from people and you are a very nice and positive woman, :-).

BattleTheBeast · « **Reply #16 on:** January 03, 2015, 04:55:54 am »

Emmett!!

Happy Happy New Year to you!!! What great news to start 2015!!

I really couldn't be happier for you, it's such an amazing feeling when you get that news! I actually have saved that bloodwork in a special jewelry box of mine. It was some of the best news for me to hear personally.

People are starting to tell me how much better I look so wait until that happens for you. It's as if we suddenly start getting our stolen spark back! That's taken me a while to get to but I am getting there more and more, you are going to get there as well!

Thank you so much for the kind words and let's hope for SVR in 2015 for everyone!

Mel

emmett · « **Reply #17 on:** January 03, 2015, 05:26:00 am »

Hi Mel, I know it is funny, I keep looking at the results and feel like I need to put it in a frame and hang it on the wall. I've looked at it probably 50 times since I got it earlier today. HCV not detected, ammonia normal, alt ast, normal, matter of fact most of my blood work is in the normal range. I know it will take some time to start feeling better, I've had this disease for quite some time and with F3 I've got some healing to do. I did have a day where I actually had energy again, it was the nicest feeling I had in years, like a gift from the gods, may it come and take residence in my body permanently.

Hope you have a fine weekend.

BattleTheBeast · « **Reply #18 on:** January 03, 2015, 06:12:15 am »

Back at you Emmett! Now if we could just fix the insomnia we would be amazing!

Mel

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Author Topic: Just started Harvoni tonite! (Read 24759 times)