Author Topic: 6 days left on Sovaldi/ Olysio treatment (Read 22945 times)

sunrise · « **on:** December 15, 2014, 10:48:02 pm »

Hi fellow warriors,
Seeing all these great posts for Harvoni! Best wishes for everyone in their recovery.
I have had more side effects I guess from the Olysio. Anxiety, weight gain ( outrageous appetite) , muscle and joint pain. Other than that just anticipation about end results. I was UD at 4 week mark. 5 ml. at pre treatment.
Kinda feel like the dinosaur with this treatment as it seems to be going by the wayside.
Sure can't believe this treatment is almost over. I've been marking my calendar everyday with xs turned to red ink at halfway mark. Almost out of incarceration! Think the most scarey thing now is relapsing. I'm trying so hard to be positive, but that little nagging worry wart in the back of my head won't go away. Thanks to all of the great souls on this forum that soooo helped me gett thru treatment! Next vl test December 22. Day after last 2 pills. Then the test really begins. Good wishes to all...Sunrise

amy1662 · « **Reply #1 on:** December 15, 2014, 11:46:10 pm »

Hi Sunrise,
Congratulation you are almost done. I know its hard but try not to worry, you have come a long way and your going to make it. The treatment your on is pretty good and has slayed many dragons. This door is closing for you and another much better one is about to open. I have to say I know what you mean about side affects, I am on Harvoni, the first week was pretty good but this past week I have been feeling a little fatigued with some mild stomach issues. Wasn't sure if it was the drug or if I picked up a stomach bug. I guess only time will tell. I also have muscle and joint issues that I had prior to treatment. I am hopeful that this will subside in due time. I hope you start to feel better soon now that your treatment is almost over. I know your going to be back on here telling us your cured. I have the perfect song for you to lift you up when you need it. Its called "Walking On Sunshine by Katrina and the Waves. The song fits you. I want to wish you the best of luck going forward. Sincerely, Amy

sunrise · « **Reply #2 on:** December 16, 2014, 12:02:25 am »

Hi Amy,
Thank you so very much for your words of encouragement. As of right now, so needed.
From what I have been reading on the Harvoni posts, stomach issues seem common. For me with Olysio it was mandatory to eat with daily doage. So maybe that might help you even though the Sovaldi had no requirement. Same for me with muscle and joint issues. I have chronic pain from injuries, but since starting treatment, some swelling in ankles and legs with stiffness that I never had. Hoping they subside after treatment. You are an angel for responding. You are right, we will slay this dragon. One way or another. Thankfully newer, better drugs are being made as we speak. We are so blessed to live in a time where this virus is not a death sentence anymore for most. Bittersweet as so many weren't so lucky. We will live for them huh Amy! Victory is ours! ☆☆☆and you're right"walkin on sunshine" Have a Blessed Holiday. .. Sunrise

badbradley · « **Reply #3 on:** December 16, 2014, 01:40:35 am »

Quote from: sunrise on December 15, 2014, 10:48:02 pm

Kinda feel like the dinosaur with this treatment as it seems to be going by the wayside.

I"m right there with you on that sunrise. Was there a purpose for FDA approval of S/O or did I miss the punchline or what? Has anyone recently began treating with that combo? Seems to me that locomotive is running out of steam!
Sounds like you've got a case of the blues. I'm kinda in and out myself lately.
Sunrise - like most here, our time will come to move on with our new lives but some names on this forum will be etched in my memory forever and your's is one of them. There's a place called "sunrise lookout", it's my favorite spot on this mountain I like to hike up. You can see for miles! When I get back up there this spring, I'm gonna carve on the wooden bench SUNRISE SVR12 ~/~/~ So make sure in March when you SVR12 - let me know the date.
Hope you have a good week. Keep your chin up. Brad

sunrise · « **Reply #4 on:** December 16, 2014, 08:40:42 am »

Hi Brad
Fell asleep just now got your post. I know huh! As soon as it was approved I stopped seeing any posts about it. funny like it was like here and gone. Wow to think my name will be etched on the bench on the top of mountain I'll be thrilled. I guess you're right about the Blues im just so worried, and I know it shouldn't be that way. I should be so happy. Thank you for being there right along with me Brad. You're working on your SRV as well. have a great day and I will definitely keep in touch....Sunrise

JillLynn · « **Reply #5 on:** December 16, 2014, 10:23:54 am »

beautiful souls.......I relate so much with all you share.
thank you for being here
Sunrise......I'll be taking you and Brad with me on my owl safari to sax-zim bog.....you all will be coming with me in spirit. Everyone I've connected on here will be with me always.

I go to Duluth my last week of treatment to bring in the New Year and hopefully a HCV FREE one for us all! Seeing the great greys and snowy owls will be truly uplifting. Being immersed in nature is always the greatest healer.

Jill

Ronaldo · « **Reply #6 on:** December 16, 2014, 01:49:07 pm »

howdy warriors, I finished S/O treatment 11-27-14 and was U/D after labs. I was looking forward to those results. I go back for labs on 2/28/15. I felt positive but the nurse kept it real. She told me after I started they had changed the treatment to 24 weeks for some patients. I only did 12 weeks. I'm nervous about it again after that appt. Harvoni is being used now at the clinic. She also told me a new treatment should come into play very soon. A 4 drug combo that includes riboflavin. I hope I don't have to go that route but will if needed. Prayers and good wishes for everyone undergoing treatment.

Rubye · « **Reply #7 on:** December 16, 2014, 02:12:06 pm »

We've all but made it Sunrise.

I take my last Sovaldi and Olysio tonight. Yea. I'm going to wait a week or two to do my viral load since I'm undetected now I may very well remain undetected tomorrow and the next day. I'd like to have the strength to wait until 4 weeks after eot but knowing myself I won't. Evidently, if you're clear at 4 weeks the odds are something like 98% that you will be clear at 12 weeks. We shall see.

Regardless, it has been a very long 12 weeks for me since I've shared your same side effects plus some pretty harsh nausea.

I think the reason Sovaldi and Olysio didn't gain FDA approval until Harvoni was released was based on money/politics.

Fingers crossed.

sunrise · « **Reply #8 on:** December 16, 2014, 04:03:12 pm »

So great to hear from my S/ O warriors. I give
so many thanks to all of you for being here with me, even though I wish you didn't have to be. Give the owls a big hoot for me ! ah nature. So calming. Yes lets all keep in touch, see how things progress. Im here for the duration. I hear you about the financial end it seems that it's about $60,000 difference between the Harvoni and our treatment. Be seeing you all soon in forumland. have a safe and happy healthy Holiday. ...best wishes......sunrise

BattleTheBeast · « **Reply #9 on:** December 16, 2014, 05:05:16 pm »

Wow all of you guys! I hope you all stay in touch and keep sharing with all of us. I don't know how I will make it through without all of you. I cried when Bucky said he was leaving the forum. You have all become my friends the past 3 months and helped me make it through some really crazy S/O days.

I know I should be really happy to be on Harvoni now but it's starting all again, I am not sure if it will end up being 12 or 24 weeks yet, it's a TBD based on insurance approvals but I know it's at least another 10-1/2 weeks.

You guys have all been my rock and I hope and pray you are all SVR12 and SVR24 and cured but selfishly I will miss you here so stay around and help encourage the newbies and keep me smiling....

Mel

sunrise · « **Reply #10 on:** December 16, 2014, 06:50:57 pm »

Hi Mel
don't worry I'm not going anywhere you're stuck with me. I hope you're feeling better with the harvoni. its funny when I use my speak it says heart Bonnie lol. After tonight five more days of treatment. s o we shall see, I hope for all of us we will be fine. Just so many nice people that I've been talking to on this site. Even though its for a terrible reason it's nice to have support, so nice. I will definitely let everybody know as soon as I get my blood results EOT. be talking to everybody soon... Sunrise

sunrise · « **Reply #11 on:** December 16, 2014, 06:51:12 pm »

Hi Mel
don't worry I'm not going anywhere you're stuck with me. I hope you're feeling better with the harvoni. its funny when I use my speak it says heart Bonnie lol. After tonight five more days of treatment. s o we shall see, I hope for all of us we will be fine. Just so many nice people that I've been talking to on this site. Even though its for a terrible reason it's nice to have support, so nice. I will definitely let everybody know as soon as I get my blood results EOT. be talking to everybody soon... Sunrise

sunrise · « **Reply #12 on:** December 16, 2014, 06:52:11 pm »

Whoops technical malfunction lol

BattleTheBeast · « **Reply #13 on:** December 16, 2014, 07:01:31 pm »

Heart Bonnie!!

hahahaha, great forum name

sunrise · « **Reply #14 on:** December 16, 2014, 07:14:53 pm »

I know right? Its so funny I guess they don't have that word in the Google dictionary yet. How have you been feeling by the way.? Has your rash gone away? You starting to feel better every day? Let us know... Best wishes... Sunrise

BattleTheBeast · « **Reply #15 on:** December 16, 2014, 07:40:48 pm »

I am doing ok, rash is going away and I am just taking it a day at a time. Trying to find me again, I've been pretty lost inside myself for a while and trying to figure out how to climb out of this hole and figure out who I am today...

Mel

sunrise · « **Reply #16 on:** December 16, 2014, 07:53:12 pm »

I hear that Mel. I run home to get away from the public as I work with the public. I am different on these meds. I hermitize. I am hoping to get back to the person I really am. Outgoing and lime to have some fun. Things seem so serious that its hard to break out. Guess the best approach is one day at a time, and for us to be grateful cor the chance to heal. I hope to beat this awful virus and to move on to a better life. Im sure you know what I mean :-/. Buck up little camper :-)

BattleTheBeast · « **Reply #17 on:** December 16, 2014, 08:20:46 pm »

I am trying, feel kinda lost most of the time. Too much responsibility on my shoulders and no escape. Hard to go through this with no significant other then again maybe it's easier. I could use a shoulder and a hug every now and then...

sunrise · « **Reply #18 on:** December 16, 2014, 08:30:03 pm »

Same boat here. I have my little dog he is great for cuddles. Idon't even date as I am well 2 things. Afraid of hooking up with the wrong guy or having to deal with telling him my situation. Wish tbis town here wasn't so small as I would go to a support group, but tbis town is really gossipy and I have to keep this to myself. I am lucky to have a wonderful son , but he is 2 hrs away. We talk everyday, but that isn't enough. Guess we will get a break eventually. Just have to stay strpng and positive and be thankful we don't have a loser in our lives thag makez things unbearable.

Rubye · « **Reply #19 on:** December 16, 2014, 09:30:56 pm »

Even though these meds - the Sovaldi and Olysio anyway, aren't known for causing depression, I have been pretty depressed this last couple of weeks myself and know it's the S/O. I admit the fear of not making it contributes to my depression but I also think the drugs contribute. I work on staying mindful or in the now and that's probably what gets me through my days.

Ah Mel, you will not lose us so easily.

I will be around at least until I know I'm SVR and then I think there is much to be said for giving back. We all have so much knowledge about HCV and treatment that it only makes sense to pass it on.

I am also in this alone in that I have no partner or husband, and sometimes I think it makes it so much harder -- like the other day when I saw a couple in the next exam room at my doctor's I started feeling sorry for myself because there is no one who will take care of me on a day-to-day basis if I get sick. On the other hand, I like not having to relinquish control to someone else. However, we are truly not alone in that we have each other here and on other forums. So, hang in there ya'll and stay strong.

Your buddy in this struggle.

sunrise · « **Reply #20 on:** December 16, 2014, 09:49:01 pm »

Hi Rubye
I know these meds effect my brain. I could feel the difference about a week in. I think the word is intensity. Things I normally felt were magnified. I get lonely too Rubye. It gets old coming home to an empty home cept for my buddy(dog) keep telling myself its better than being with a bad relationship. I have faith that we all have someone out there. Just gotta get out and mingle. Right now thats not an option. It will be though soon ladies... Sunrise

sunrise · « **Reply #21 on:** December 16, 2014, 10:34:54 pm »

Oh and Rubye
I forgot " YOU DID IT!" took all your meds! Congradulations!!!
I wish I could get a 2 week vl eot as well. I will have to settle for one day eot and then 4 week. That will be a stressful time for me as we. Keep in touch with your results. I pray UD for you! ..... Sunrise

Dkredd53 · « **Reply #22 on:** December 23, 2014, 02:18:06 pm »

Last day of 6 month treatment.
Today is my last day of the treatment plan. ( I'm a transplant patient) Did 6 months of sovaldi. The last 38 days were with both savaldi and olysio. Don't ask ? To much to say why that happened. (money - Insurance) I still have some olysio left over. I'll see how it goes in the following months with labs to see if a relapse occurs. I'm praying it is finished ! I have not had energy like this in 10 years ! Unbelievable !!! People take for granted their health and this chronic fatigue really put a whoopin' on me ! lol
I hope the best for all. Anyone that is struggling on this; I can say to stay busy and don't think about how you are now but how you will feel after the battle is over. That is what counts. The more you have adversity during the fight, the sweeter the victory is when you prevail. Trust me, it's true. I don't know if my battle is over or not, but I feel good today, so I'm going to enjoy every day while it last !

sunrise · « **Reply #23 on:** December 23, 2014, 03:25:44 pm »

Amen to that DK I hope you're feeling better every day. I am 2 days out after treatment and patiently waiting for my 4 week blood test. Looking forward to the holidays. Have a wonderful holiday yours. I hope for the best news to for you as well!...ssunrise

Picnic · « **Reply #24 on:** December 23, 2014, 05:07:59 pm »

Dkred53,
How long since your transplant? I am 9 years out!

Dkredd53 · « **Reply #25 on:** December 23, 2014, 07:22:30 pm »

Thanks y'all !!!
Sunrise, Do you feel any different from not taking salvaldi & olysio ?
Where do you live at ?

Larry, On December 25th it will make exactly 5 years to the day !!!

I had one hell of a ride 5 years ago on Christmas night. I died 3 times during the surgery; The surgery team were scared, happy and relieved that I survived. Had a gift of life in the ICU recovery room in Houston and a after death experience that I'll never forget !!! Anybody that thinks that there is no Heaven or Hell, is lying to their self.

Kirk

sunrise · « **Reply #26 on:** December 23, 2014, 08:57:47 pm »

Hey Kirk
Well just feeling like something's missing. Like im forgetting to do something. I feel ok jist worked hard today and got fatigued in afternoon. Nothing to speak of but I will definitely keep you all up on my progress. Im in th Southwest

Picnic · « **Reply #27 on:** December 23, 2014, 10:43:41 pm »

Dkredd53,
What a cool story. I love stories like that. You must be blessed! I had a fairly uneventful transplant but it hurt like hell when healing. This will be a very merry Christmas! Mine was right around thanksgiving day. Good luck!

badbradley · « **Reply #28 on:** December 23, 2014, 10:47:43 pm »

Hey Sunrise, That was the longest and most trying week of treatment for me (so far)- waiting for results while purging meds from your system! Do you get your cbc,lft results earlier than VL results? I can get mine online way before VL results are released. That's gonna be another dilemma for me-peaking at enzyme results before VL. I might do it! Brad

sunrise · « **Reply #29 on:** December 23, 2014, 11:15:27 pm »

Hi Brad,
I have to wait till I get my results by mail and probably the doctor will call me with those results. I get both the VL and my CBC in the same result sheets. I hear you when you say it's been a long week, mylegs are really sore I guess because I stand at work but my hips and my ankles hurt like the dickens. I'm just relaxing now I have to work tomorrow so I'm giving my body the break it needs. Thanks for being so supportive. I will br sure to let you all know my results, buy remember its just the end of tx. I still had the S/ O in my system. The real important tests are in a month and 3 months. Too stressful to imagine.

badbradley · « **Reply #30 on:** December 23, 2014, 11:31:36 pm »

Sunrise My thighs hurt for awhile after also. Kinda feel like you've been tumbled around in a dryer! I forgot to tell you about that! Waitin' on them results is nerve wracking isn't it? They're all big though aren't they? When you see that letter in the mailbox your heart starts pounding every time. 3 more results for you. You will kick ass on each one! See Ya Brad

sunrise · « **Reply #31 on:** December 24, 2014, 12:47:58 am »

Thanks Brad
Yes thats a good way of putting it. I do feel like ive been thru the spin cycle . Yes the next 12 weeks will be tough. I wish my pain on my right side would go away. Although my doc seems to think its not my liver.hmmmm. you stay cool too..

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Author Topic: 6 days left on Sovaldi/ Olysio treatment (Read 22945 times)