Author Topic: Anyone on dual Sovaldi and Olysio describe the side effects? (Read 298946 times)

Evil Santa · « **Reply #100 on:** July 11, 2014, 08:52:34 pm »

For the first 2 weeks no matter what I ate it left a bad taste in my mouth. I could taste everything but it was kinda nasty after taste. If I brushed my teeth or chewed peppermint gum it helped. It went away after a couple weeks. Same with the itchiness and headaches. I'm just starting my 6th week Sovaldi and Olysio, there really isn't much left for side effects. If I get to hot and sweaty I feel queasy. If I go to long without eating I get the same feeling. A little more lack of stamina maybe. I have no problem eating anything spicy or not. It really is so easy compared to the Interferon and Ribaviron. My 4 week blood work said all my liver functions, alt, ast, etc. Are normal. My viral load has not come back yet but I'm expecting good news. I'm thinking the only reason they are still prescribing Interferon is ignorance or $$$..
Jim

Jim · « **Reply #101 on:** July 12, 2014, 10:57:28 am »

Hey everyone life is so so so good on these new drugs.. Day 45 on S/O and I swear I m in Disney Land. LOL with hopes of taking my Grand Babies once these drugs kill this MONSTER that has been attacking my liver for 43 years. After going thru the PEG/RIBV study in 2001 this is nothing short of miracle drugs sent from the Heavens. I have to laugh a little reading these reply s about what food tastes like, runny noses for a few minutes , a slight itch problem etc , OH if only you knew what side effects were on the previous treatments you would be saving your time instead of talking about such little things. To the Guy thinking they continue this treatment for money could not be more in the wrong. The HEP C is not in your blood if you texts come back UNDECTACBLE but it is still in the liver so that's why we all are to take the drugs for the 84 days. I thought the same until a very smart lady set me straight. To all my HEP C WARRIORs friends on here good luck and spread the word " We will be cured" So Head up , shoulders back, crank up some good tunes and look forward to life without HEP C... Jim

amocuatli · « **Reply #102 on:** July 12, 2014, 11:30:30 am »

I had a runny nose in the first couple of weeks-in the am then it would stop. I have been eating better than ever, no taste change, I do feel a little "swollen", but I have been eating a lot! (And staying inside a lot due to the photosensitivity issue).
Also, I was wondering--on the first blood test out did anyone have elevated white blood counts?
If you want to know, the reason I ask is that I have been having pain in my back which "felt" like an infection, but my doctor said it was due to constipation--I found that a little difficult to swallow as the constipation only lasted about a week and the pain has persisted all the way until now As a matter of fact, it got really bad when I started the Olysio and Sovaldi, (right around the time I took the blood test)but for the last week or so it has leveled off (this is week 5 for me).
One of the reasons my doctor gave me for not thinking my back problem was an infection was because my blood results came back pretty normal-no elevation for wbc's--until, as I mentioned earlier, I got the one for the first week back and noticed that it was flagged in several places for high white blood cell count. When I asked my doc he said it was probably due to the Hep C meds--but I haven't read anywhere about change in wbc count being an effect. As a matter of fact I have read the opposite that blood counts tend to be normal.
All this because if I do have a lingering infection I would like to get rid of it.
So if you would let me know about your blood results normal for wbc or not--I might make a decision to pursue the matter with my doc; or not
Thanks for reading this
And thank you all for your posts I feel so much less alone and connected with a group of people who are going through the same thing I am. Most of my friends do not have a clue about Hep C and my children think I'm being a hypochondriac! Hahaha
So my wish for you is the strenght and fortitude to Fight the good fight! And carry on!
Amo

Anette · « **Reply #103 on:** July 12, 2014, 11:34:54 am »

Hi Jim and all you others!
First of all congrats of your new feeling you have, i have the same. Its a beautiful world i live in now.
The topic of this subject is sideeffects, that why i told about my rinnning nose, i think its a sideeffect of this medicine, i have never had that before.
And i also agree about the PEG/RIBV. i did 2 times with not good resault. The last time i almost die because im livertransplant and after 3 month with PEG/RIBV i got a huge rejection. Beside that i was sooooo sick of the sideeffect. So i was quit scary to try this combo. It took a while before the sideeffect start to show of PEG/RIBV for me, so im curios to hear about it more of ppl that has started this new with Olysio and Sovaldi.
Take care!

amocuatli · « **Reply #104 on:** July 12, 2014, 12:59:31 pm »

Oh ok so I need to ask did anyone else have the side effect of white blood count going up in their first week, or any other week for that matter?

doug · « **Reply #105 on:** July 13, 2014, 08:58:39 am »

ok, now I feel silly for complaining about a bland tasting taco after knowing what all of you who have had to endure interferon have been through. 3 days later it seems better now. how about depression, anyone? is this treatment going to make a difference in quality of life? will I notice any difference? I am wondering if this was the right decision to try treatment at all. even if the hep C is cured 100% it won't undo the chirrosis etc. am I being ungrateful? I don't know

amocuatli · « **Reply #106 on:** July 13, 2014, 09:42:46 am »

I hope that no one thinks that I am complaining about the treatment. I am so thankful and grateful that it exists at all! I have waited a long time for it, maybe not as long as others and no, I didn't do the interferon treatment- my doc told me I shouldn't because of other meds I take (ADHD), also because I am a single working mother and there wouldn't have been any way for me to take care of the bills or my kids! But I have read all about the interferon treatments and I feel sad for the many people here and other places did not get a cure for all their trouble.
So when I am talking about side effects with this medicine I'm really letting ms Porter know ANYTHING at all in case it is helpful to other dragon warriors.
On Saturdays I normally work all day outside in the grueling Alabama heat i have gotten side effects which with the help of this forum I recognize as probably being related to photo sensitivity-I get itchy isolated bumps, my eyes swell up and I'm super fatigued the next day. I wear sunblock a hat sun glasses with a long sleeved shirt and long pants. Ever couple of days I get a little queasy stomach and I get headaches not too severe except on the first day after being in the sun. I was getting super hungry and eating like crazy but that has subsided; I was diagnosed with insulin resistance this year and that was one of the reasons -- ravenous hunger. Also as I mentioned earlier my first week blood test the white blood cell count was very high, much higher than the one previous when I wasn't on the meds.
Good effects my BP which was just hovering on the high range has settled down to an average of 117/76 which is excellent. I was really foggy headed and having lots of trouble with remembering simple tasks I am a teacher I have to remember things-so now I notice a marked difference in that ability. I was startled at how much my vision has improved from within 30 minutes of my first dose.
Well that's all I know for right now. As I said I'm not complaining - I'm ecstatic, but since we were asked to comment, I am commenting. My heart goes out to those of you who hVe suffered or are suffering from the interferon treatments, and I wish everyone well. My life certainly has other areas where I have not been so fortunate as I feel that I have been with this tx.
I am a 56 year woman and my 4 week test came back with a reduction from a high of anywhere from 15million to 6 million to 1.5 million.
Maybe the next forum could be on detailed experiences of those of you who have undetectable blood results to see if there is any kind of correlation to be found like did you all stay completely out of the sun?
Y'all have a blessed day!
amo

lporterrn · « **Reply #107 on:** July 13, 2014, 10:59:00 am »

Thanks everyone for this info. Amo - I am going to message you with some questions. I sure appreciate hearing peoples' experiences.

canythingbutaverage · « **Reply #108 on:** July 16, 2014, 01:43:52 pm »

The photosensitivity has decreased significantly for me, I'm near seven weeks in, and it's a shadow of it's former self.

I just got my zero yesterday, and my fight with the sun has been aided by umbrellas, lots of water, sunscreen, near blackout sunglasses, rest and wearing mostly workout clothes.

Amo,

Also, you don't need to be concerned about complaining, treatments are rough. This virus is rough, let off what emotional steam you can.

The measure of our struggles is not by events or the fires within it, but by our perpetual existence, our defiance and ultimately our resilience. We share our troubles so that we may find common ground and grow and fight together

Anette · « **Reply #109 on:** July 16, 2014, 02:25:12 pm »

Today is the day 25 of treatment. I have felt sad all day today. do not know if it's because the drugs because I have no reason to feel like this

Jim · « **Reply #110 on:** July 16, 2014, 05:44:56 pm »

Anette, and fellow HEP C warrior so sorry for the sad day but being on the best two drugs ever made to fight this liver killer is a time to reflect on the fact that life will be the best you and I have had once the disease is gone... Put on some good tunes and crank it up. Shut your eyes and dance . good luck Jimmy t

Anette · « **Reply #111 on:** July 17, 2014, 04:49:07 am »

Day 2 of sadness. I know I have nothing to be sad about but feel like this anyway. what do you think, is it the medication that causes it to me?

willie g · « **Reply #112 on:** July 17, 2014, 11:15:18 am »

hi, I FINALLY RECIEVED MY PACA IN THE MAIL TOOK MY FIRST SOLVADI AND OYLISIO AT 9;30 SO I WILL KEEP YAS POSTED. LESS WORRYING NOW ABOUT WHOLE DEAL. THX EVERYBODY AND ILL GIVE YOU A DAILY UPDATE/ 9;30 AM TODAY 150K TO GET MEDS GENO 1 1200000 7.1 IU WILLE G

Mike · « **Reply #113 on:** July 17, 2014, 12:14:35 pm »

That's great news, Willie. Your sword arrived and you're read to slay this dragon!

Best wishes, Mike

Anette · « **Reply #114 on:** July 17, 2014, 12:47:03 pm »

Good luck Willie to your journey to become virusfree!!!!!

willie g · « **Reply #115 on:** July 18, 2014, 01:10:10 am »

thanyou Annette and mike, the journey has begun, I took med s 930am 1047 I felt queasy and I drank a half of a liter of flavored water with it, I got real tired, crashed till around 830 pm at 6pm I ate healthy kinda crashed from my meds at 830 pm I kinda crashed till 10pm now I am up cant sleep and have that pain in my right side and a little hyper,plus I have a pulsing pain in left side up by breast, drinking again and here I am, I had those symptoms before plus more like itching in feet area and arms. no itching as of yet which is cool are solvadi and olysio considered like a form of chemo only oral. its a nucleate right which is used in chemo right. I don't think I spelled that right. thx again and that constant itching before is now so far a relief. willie g

willie g · « **Reply #116 on:** July 18, 2014, 01:40:17 am »

sorry to hear about that depression Annette,that's a tough one because I have been on depression meds for quite awhile, the Zoloft and clonazepam together has always done well for me plus I take temazepam for sleep for quite awhile and also lamictal plus my pain meds from severe trauma and many injuries which is oxcicotin, its funny when you take opiates for the right reason instead for a buzz I have never abused it.in old days my riding buddies use to take what we called "trailmix' ,we take whatever the girls brought back from quack drs. most controlled drugs and then we would smoke up get on our Harleys and off wed go! crazy I know and as the commercial says DONT TRY THIS AT HOME! LOL, I WISH I WASNT ON ANTIDEPREESENTS AND I HAVE TRIED TO GET OFF THEM BUT THATS A BAD RIDE IN ITSELF. I DONT KNOW IF WEED IS LEGAL IN SWEEDEN BUT IT SURE WORKS WITH DEPRESSION. I NORMALLY DONT SMOKEIT ANYMORE BUT BET YOUR ASS I HAVE SOME NOW JUST IN CASE. I KNOW ILL BE APPROVED FOR IT ONCE IT GOES THRU CHANNELS. CUOMO [GOVENOR[ HAS SAID ITS AGO BUT IT WILL BE ONLY IN PILL AND LIQUID FORM . I THINK THAT IS THE LESSER EVIL THAN ANTIDEPPRESSANTS AND YOUR 59 SO YOUR A BIG GIRL TO MAKE THAT DECIDION. ANYONE OUT THERE THATS TRUTHFUL AND WANT TO SHARE IF YOUR DOING WEED OR NOT/? IT SURE MAKES YOU LAUGH AND IF YOUR LOSING WEIGHT IT GIVES YOU THE MUNCHIES WHICH IS ANOTHER PLUS. STICK AROUND POSITIVE FUNNY PEOPLE, AND IF YOU WERE SOCIAL BEFORE GET BACK OUT THERE AND BOOGIE. DONT LET THIS THING WE HAVE MAKE YOU FEEL ANY LESS THAN OTHERS. FRIG EM IF THEY DO! WE SHOULD ALL HAVE A HEP COOKOUT, SEE I MADE YOU SMILE. NO BOOZE THOUGH BUT WE COULD TOKE UP A LITTLE! LOL DONT TRY THIS AT HOME LOL NITE.GOODMORNING, AND GOOD DAY. WILLIE G

willie g · « **Reply #117 on:** July 18, 2014, 01:51:37 am »

I AM PRAYING TO MY CREATOR RIGHT NOW FOR YOU. PRAYER WORKS, JUST START ASKING AND TALIKING LIKE YOU WOULD NORMALLY TALK TO ANYONE. HES BEEN MY BEST FRIEND THRU LIFE AND THE CREATOR HAS NEVER LET ME DOWN. BURN SOME NICE INCENSE AND A NICE CANDLE OR BOTH PRAY, TALK AWAY AND ENJOY YOUR SPIRIT BEING ENERGISED. LATER SWEEDEN AND YOUR RIGHT AT TIMES I WISH I HAD MADE THAT DECISION TO MOVE THERE, BUT ILL BE BACK! AS ARNOLD SWISHINIGLER SAYS! MAN DID I SCREW HIS LAST NAME UP! LOL WILLIE G

Anette · « **Reply #118 on:** July 18, 2014, 02:24:53 am »

Willie.....ARNOLD SWISHINIGLER....there you got me, i really laugh out loud. Thank you for that!!!! Its morning here now in Sweden i i woke up normal...that means i feel no sadness at all. And no Willie, marijuana is not allowed here. You cant even buy alcohol anywhere you want. The goverment decide that we must buy it under controlled forms. Specialstores only open 09.00-18.00 Sunday closed.
Hang in there Willie and please uppdaterad your story. Together we all here are stronger. Its good to have feedback.

Edit i dont take drugs or drink alcohol.

willie g · « **Reply #119 on:** July 18, 2014, 03:07:50 pm »

good for you about booze and drugs and im so glad you woke up happy, after I got offlime 130 am I tried sleep no luck and then about a half hour later itching and not comfortable in my own skin, its been a rough day but its only day 2 so ill and my body will need to get use to this,ive been drinking a lot of good stuff and im up and down and up and down to bathroom,its my bathroom workout lol willie g

Anette · « **Reply #120 on:** July 18, 2014, 03:29:55 pm »

Willie...i hate taht, when the body itch. I had a huge rejection last year and my Bilirubin went up to 150. Back then i thought i loose my mind, couldnt sleep itching til blood came on my legs and feet.
I have small tips. 1. Fill small plasticbags with water, put in a fridge, let them be really really cold. Then nighttime if your feet itch, put the bags in big socks and put on. The cold makes the itch fade a way for a while and are you lucky you fell asleep.
2. I bought horseliniment....im not joking. When i put that on my body it went so cold and nice and i could relax from the itch in about 30 minutes or so.3 Put water in a bucket and alot of ice inside, put your feet hands whatever inside and sit so until you cant stand it. The bodyparts will be numb for a while and you can relax. If it itch on other parts i took the plasticbags with cold water and put them over the itchingarea.

lilsis · « **Reply #121 on:** July 19, 2014, 10:54:31 am »

Quote from: lilsis on July 01, 2014, 10:11:11 pm

Hello everyone. My brother is type 1a with cirrhosis and MELD 20; treatment naive and started Sovaldi/olysio a few weeks ago. About a week later he had eruption of multiple blisters on hands/feet/face. After reading through this thread I am now more convinced the blisters were a result of photosensitivity. He has since been taken off the meds and will follow up with transplant program next week. I am hopeful that he can go back on the meds with extreme sun precautions. He would sit outside to warm up as he is often cold but not longer than 10 mins or so. Complicating matters is he has vitiligo where he has lost pigment in several areas of skin.......not surprisingly it was the unpigmented areas that blistered! I appreciate being able to read first hand experiences as this is fairly new treatment and as a previous poster mentioned this combo is not yet FDA approved.

Hello all,

Just wanted to update as I am amazed.....I know it may be short lived but at this point will take any positive news. My brother was on S/O for a total of one week and had to discontinue b/c of the above. Two weeks later the he had his RNA checked and it went from 60,000 to less than 15!!!

We know this may be short lived but to see such tremendous response after just one week gives so much hope and that his levels were still low even two weeks after discontinuation! Thanks again for sharing your stories it helps to know that he is not alone!

lporterrn · « **Reply #122 on:** July 19, 2014, 06:48:01 pm »

That is fantastic lilsis - I've seen a couple of these persist against all odds. Hope for a miracle or that he can go back on the meds.

willie g · « **Reply #123 on:** July 20, 2014, 10:18:25 pm »

HEY FOLKS, DAY 4 SOLVADI ,OYLISIO, GOOD DAY OTHER THAN STILL NO PATTERN FOR SLEEPING, EACH DAY IS DIFFERENT, BUT I CAN HANDLE IT, IF YOU CANT SLEEP HAVE A GLASS OF MILK AND RAEADING IN DIM LIGHT HELPS, YOUR EYES FALL AND YOUR OFF TO 40 MINUTES TO 80 BEFORE WAKING,BUT COME 3 DAYS OF THAT YOU CRASH LIKE I DID FOR 3 AND HALF HOURS,THAT WAS GREAT! LITTLE ITCHING, LITTLE BITCHING, GOODDAY, MAN AM I LUCKY. LITTLE CONSTIPATION BUT EVERYTHING COMES OUT ALRIGHT. SO ANYONE WAITING FOR THESE TWO PILL COMBO WAIT! ITS WORTH IT. I WAS GOING TO JUMP RIGHT INTO INTERFERON TREATMENT.WELL I WAS ADVISED WILL JUST HANG ON SO I DID AND WITHIN 6 WEEKS I STARTED[SOMERWHERE IN THAT TIME PERIOD.I HAD TO MAKE SOME CALLS AND ONE WASNT SO PLEASENT ON MY END BUT A FEW FREAKY THINGS HAPPENED WHICH DELAYED IT. THX EVERYONE, I HOPE THIS HELPED A LITTLE, 2 HOURS ILL BE ON DAY 5, GENO 1 7.1 IU 12000000 MILILION VIRAL LOAD, MEDS TAKEN AT 9;30 AM EVERY DAY

WILLIE G

willie g · « **Reply #124 on:** July 20, 2014, 10:29:45 pm »

THANKS ANETTE,SOUNDS GREAT FOR MY FEET IM ON IT BUT IM HAVING A LOT OF ITCHING ON MY UNDERCARRIAGE TOO, ILL HAVE TO FIND A GOOD SISZE SOCK FOR THAT LOL AND YES :MY WHOLE UNDECSRRIAGE NOT JUST GROIN AREA ETC,LOLO PILLOW CASE? HE HE THANKS, WILLIE G

steve · « **Reply #125 on:** July 25, 2014, 11:33:59 am »

I have been on the combo for almost 2 weeks and the only side effect so far was itching all over but only for week one and the sun knocks me out when I am in it for a while.

lporterrn · « **Reply #126 on:** July 25, 2014, 02:46:08 pm »

Thanks for sharing Steve. Please be careful of that photosensitivity, as it can get quite serious and difficult to get under control. Here is a blog I wrote about it, but honestly, staying out of the sun is the best measure. http://blogs.hepmag.com/lucindakporter/2014/06/hepatitis_c_treatmen_1.html

Roger McGuinn · « **Reply #127 on:** July 30, 2014, 02:17:47 pm »

Hi fellow, and "fellowette", Hep C fighters! I have a question, and realize that there are probably a bunch of different answers, but that's all good as far as I'm concerned! I have gotten my rejections from my Insurance Company, which my Hepatology Team, seems to think is not such a bad thing, since it is so prevalent, with many of the new policies! They seem to feel that the sooner one receives their rejections, the sooner they are able to ask the other sources, such as Sovaldi's "My Path", as well as other patient assistance groups. I understand this, but am curious what sort of situations, others have had in securing their medication. My story is probably not any more remarkable than anyone else. I failed treatment for IA, Hep C, with Interferon, and Ribavirin, about 11 years ago! Like many others, it was horrendous, and made me consider suicide several times, but somehow got through the course of treatment (48 weeks) Yes, I also had about three years of side effects, and to this day, don't really know how much is from the original treatment, or my liver which was stage 2, eleven years ago. But now to happier thoughts! I am so excited by the prospect of these new drugs, but find that the wait is so rough. You would think after being diagnosed in 2002, and going through a failed treatment, that this would be an easy wait! Not so, because the anticipation of feeling like a human being again,(how ever that feels) is making me crazy! Feels like a kid waiting for the last day of school before summer vacation begins!

So, please tell me your stories! How long it took you to secure drugs, after you were rejected by your insurance companies, or how long it took, for those who had no insurance policies! I feel that the wait is no doubt, worth whatever it takes, but when a person is so sick for so long, waiting becomes most difficult! I'm just looking for the truth, and so happy to hear all the wonderful stories! Can't wait to help others to feel good after hearing my success story, when ever it is that it happens! Anything helpful clues to help me reach my dream would be most appreciated! And I know that there is always the chance of failure again, but I would be standing in line to any Casino that gave me a 90% chance of winning! Beat the Hell out of the fifty/fifty crap shoot I took back in 2003! Thanks all of you brave souls!

steve · « **Reply #128 on:** July 30, 2014, 06:09:25 pm »

Hang in there Roger. I was rejected by my insurance company back in February 2014 but my doctor and his office staff were right on top of it . They got J & J to supply me with Olysio first and after a few letters back and forth with Gilead I was accepted to their path program and have been on the meds over 2 weeks now. Hope this helps you and good luck

MWS · « **Reply #129 on:** July 30, 2014, 11:58:47 pm »

I started Solvaldi and Olysio July 10th, no real side effects so far. I thought maybe a mild headache but now believe it is my sinus/allergies. I feel good and workout most everyday. I was diagnosed in 1993 I think. I have never done any other treatment than this. I get my first bloodwork done next week and see the Doc the following week for the results. I have just turned this over to my higher power, because otherwise I will go insane with my thoughts of impending doom

. I really believe my attitude is better as I have read other people say also. My opinion, other people in my life may not think so.. I hope this really is a cure, I have lived under a cloud of fear for so long, but I really feel this is my time to smiley..

maineman · « **Reply #130 on:** July 31, 2014, 12:14:37 pm »

Good Morning

I am on week six with all three meds. I can say that the side effects are noticeable and changing. I have days of intensity and other days that I find it hard to stay awake. The sun issue is very big but with a lot of sun screen and a new larger hat I have solved that issue.That being said my liver functions are normal after my first round of testing. Did not test for viral load. All said it seem to be working and I can't wait to finish.

Kschaff · « **Reply #131 on:** July 31, 2014, 12:39:48 pm »

I have been on them for eight weeks, after four weeks I had my blood work done the hep C Virus was undetectable!
The side effects are very minimal, I have red hair and use two types of sun screen both SPF 50. This keeps me from any over exposure from the sun.
I do get head acks, one Tylenol 50 mg is all I need.
I was on interferon and ribavirin three different times it was very bad to say the lest.
If you are lucky enough to get on Sovaldi and Olysio do it, I have four weeks to go and i feel great. Good Luck

Anette · « **Reply #132 on:** July 31, 2014, 12:51:37 pm »

What a coincidence Kschaff, your story could be mine. We have done the same things and have the same side effect and kept on as long I can be snotty immediately after a meal, but that's all.
Sorry for my english, im from Sweden

JohnJ · « **Reply #133 on:** July 31, 2014, 02:02:04 pm »

My story same. Been on S and O for 8 weeks and virus non detectable. Side effects even sun have not been a problem. After three times on interferon this scares me it has been so easy. Actually going fishing this afternoon. Should not say that as now it's sure to bite me in ass. Good luck to all of you.

kareng28055 · « **Reply #134 on:** August 02, 2014, 07:27:39 pm »

began SOV/Olysio 12 days ago, No side effects; am Gen 1a. Cried the day my ins. called and said they were covering, all I pay is total of $85 co-pay. Did interferon but quit as I wanted to croak. I am 57 yo female (nurse) dx in '91. Praise God for this cure! Also, I take these meds in evening, which I think helps. Best of luck to you all, and again, Glory to God!!

drayd4 · « **Reply #135 on:** August 04, 2014, 10:18:31 am »

My significant other is on fourth week of sovaldi abd olysio and ribaverin. first two weeks were great now the fatigue has been terrible and the last four days she's had like seizures not grand mall but last about 30seconds. has anyone else experienced this.she's like stage 4 level 3 and has a lit of confusion due to ammonia in her blood.any help ?

steve · « **Reply #136 on:** August 04, 2014, 12:42:44 pm »

Starting week 3 today and got my second what I assume to be anxiety attack today for no reason. Has anyone else gotten these which for me consisted of sweats,increased blood pressure , hyperventilating?

kareng28055 · « **Reply #137 on:** August 04, 2014, 06:38:35 pm »

Dear Steve,
Before I started tx I saw my PCP and he gave me Rx for alprazolam (anxiety-which I haven't needed yet) and zolpidem (Ambien) which I do use. I had read from previous folks tx that insomnia and anxiety might result. I am very careful about taking things. I also told him about poss. rashes that have occurred w/some people and told him to be on "standby" if I need something for that. I am just a proactive (a/k/a OCD) nurse so wanted to have my ducks in a row...LOL

kareng28055 · « **Reply #138 on:** August 04, 2014, 06:40:31 pm »

Steve,
Oops, I would be remiss if I didn't advise you to contact your PCP re: the high blood pressure, since that is never anything to ignore. I don't remember reading about that being a significant side effect so better to check it out.

Karen

steve · « **Reply #139 on:** August 04, 2014, 07:18:49 pm »

Thanks Karen.. I went to the er last week when it happened but after ekg and 2 hours at 130/74 they sent me home. I wasn't sure if I was getting Anxiety attacks all of a sudden or the meds caused them

drayd4 · « **Reply #140 on:** August 06, 2014, 04:52:22 pm »

I need to retract something in my first post.my partner Carol has had hep c for many years. she was a RN for 28 years and was exposed as a nurse.she's been really sick for the past year. she has encephalopathy and has a problem with ammonia in her blood .we have had a difficult year . about. 5 months ago her gastro dr. told us that her liver would never stand the meds and that there was nothing they could do. basically just monitor her until the disease killed her...then about 2 weeks later we got a call from the dr. and they wanted to try her on the new meds sovaldi olysio and ribavirin. i started researching and was excited it was about 4 months getting approval so here we are friday will complete her 4th week .i thought other day she was having seizures but now i realized it was low BP when she would stand to walk she would collapse jerking . she was dehydrated after i have poured the gatorade to her she's doing better
she's taking lactulose to help with ammonia so i have to be careful with hydration .but we again have hope. thanks for all sharing your struggles it really helps good luck all

relicman · « **Reply #141 on:** August 08, 2014, 12:51:54 pm »

I went through clinical trials of interferon in 97 did not work .tried again with riberveron in 2010 did not work. could not work , wiped me out. have been on sovaldi & olysio for 12 days this so far is easy. like many of you I am taking my meds at night. I got up the next morning feeling as if I had more energy. so far no rash or headaches. I have felt a bit more tired this week than last. believe me if this is as bad as I will feel this will be a breeze. good luck to all even if it does not work for me, I will be pulling for YOU!!!!!!!!

Anette · « **Reply #142 on:** August 08, 2014, 01:30:14 pm »

relicman, believe me when I say that with almost 99% certainty say that it will work for you too. because the odds are bad, I dare not bet!

drayd4 · « **Reply #143 on:** August 08, 2014, 04:02:44 pm »

I had to bring Carol to the hospital ER yesterday today completes 4 weeks of S and O she really got weak could barely walk . after seeing the e r dr. he said she was very anemic so she's had 3 pints of blood. I know that's a side effect. but has anyone else had to have blood after 4 weeks. ? Just curious . don't know if I'm doing this right I haven't had anyone respond to my posts

JohnJ · « **Reply #144 on:** August 08, 2014, 04:38:23 pm »

Sorry but it sounds like Carol has a much advanced case. I have had HepC for almost forty years. I went thru Interfuron and Riv 3 different times and my blood dropped so low last time I had to come off. Is Carol on anything besides S and O? I'm 9 weeks into S and O with very little side effects. Hopefully Carol will pull out of this and she will recover.

kareng28055 · « **Reply #145 on:** August 08, 2014, 06:27:35 pm »

drady4,
It does sound like Carol has a more advanced disease; however, I would have thought that her physician would have ordered standard blood test (CBC, liver panel) after 2 weeks of treatment, again at 4 weeks, etc, particularly given her history. These meds have to be powerful enough to kill and keep the virus from replicating, therefore, a person without advanced liver disease and other co-morbidities will probably experience less side effects and issues than someone with advanced disease. When they indicated there was nothing else to do, had they never talked about a transplant or was she not a candidate??

lporterrn · « **Reply #146 on:** August 08, 2014, 06:46:32 pm »

Draydy4 - I am confused as to why Carol is on ribavirin - most of those who are taking Olysio+Sovaldi have advanced disease and can't handle ifn/ribavirin, thus they are taking O+S. Ribavirin has lots of side effects.

JohnJ · « **Reply #147 on:** August 08, 2014, 07:04:27 pm »

My doctor has me taking blood test every two weeks? Do not understand that not being for everyone at least for the first six weeks. I am not taking anything but S and O. Riv is terrible.

drayd4 · « **Reply #148 on:** August 08, 2014, 08:51:12 pm »

Hi guys so glad someone replied to try and answer questions Carol is advanced we were told she was stage 4 level 3 she's had hep c for 30 plus years and has never before had any treatment she's taking sovaldi olysio and ribavirin i don't know why she's on ribavirin.could that be why she lost so much blood ? We have been doing blood work every week.at the end of third week her viral count went from 1.3 million to 86,000 today is end of fourth week but something is really kicking her butt. she's been afraid they may take her off meds. we were supposed to see gastro dr. today but she's here in hospital . they had at one point told us there was nothing they could.do without mention of transplant she is 58 and has used alcohol but she's been quit for over 3 years without any relapse I'm si proud of her.let me know what you all think or if i didn't answer any questions. and thanks guys

JohnJ · « **Reply #149 on:** August 08, 2014, 10:06:05 pm »

The Riv is probably what is causing most of problems. Believe that was what my problem was. Her Count has come down that much I would think they would take chance and leave her on her current meds. Good luck and hang in there

drayd4 · « **Reply #150 on:** August 09, 2014, 09:28:28 am »

Thanks JohnJ i tend to agree that they should leave her on. I rescheduled her appt. with gastro. dr. for Tuesday so guess we'll know then. another thing that has me concerned is her liver is decompensated if we get rid of the virus will her liver get any better ? Maybe lporterrn you might shed some light on this. they kept carol at hospital another night because of the ammonia level is 70 and they want it lower. so do i but we have struggled with ammonia for almost a year and all they're doing is giving lactulose we do that at home. the blood has really made her better . this is a terrible disease and i pray that this medicine will heal all you guys and defeat hep c forever .until then we will fight the good fight..

Finbar · « **Reply #151 on:** August 09, 2014, 09:59:35 am »

Hi all I started S/O treatment on 7/31/14 so far have had no side effects, but must stay out of the Sun other people have warned me of Severe burns on this treatment This is a walk in the park compared to Interferon ribavarin by the way I would like to tell everyone there is another drug which will be available shortly which is ledipsavir combined with Sovaldi which will make treatment even shorter Don't know why doctors r still using S/O with ribavarin but that's not my call will keep you posted

JohnJ · « **Reply #152 on:** August 09, 2014, 10:02:23 am »

I'm certainly not a doctor but the liver will regenerate itself if there is not too much damage. If S and O can cure the Hep C and the liver has time to regenerate, it could be your answer. Right now she has to fight thru current issues. Will keep you and Carol both in our thoughts. Keep charging. No retreat.

drayd4 · « **Reply #153 on:** August 09, 2014, 10:16:50 am »

Thanks JohnJ i understand we aren't dr.s but i feel the same that's what we're praying for.and yes we will fight this beast .i do appreciate your concern we also be thinking and praying for you and all on this forum . i have read about all posts and it has been helpful.have a great day JohnJ

drayd4 · « **Reply #154 on:** August 09, 2014, 01:30:10 pm »

Thought we had missed our chance to go home from hospital but we're soon to be released .The dr. told me that he believed the ribivirin was kill her red cells . so I'm waiting to see what gastro. dr. has to say Tuesday . if anyone has had this issue let me know . Knowledge is power. Carols feeling much better .God is good.

JohnJ · « **Reply #155 on:** August 09, 2014, 04:02:02 pm »

Exactly what Riv did to me last time I was on that treatment and had to stop after two months. Only on S and O now and no problem. I would think if continues they could take her off Riv and just continue with S and O? Just keep putting one foot in front of other. She can do this.

rainbowray · « **Reply #156 on:** August 09, 2014, 04:50:19 pm »

Ribavirin has a 12 day half life, which means 1200units turns into 600 in 12 days.
So it remains that long. Then 12 days into 300 units. So if taking 1200 units a day then it builds up to a tremendous amount. Be educated, I am on this regimen now
and am monitoring my symptoms closely, as I will not see my Doctor till 9 weeks into
treatment, he is in Italy. The rash is first, then strong fatigue with sweating and shortness of breath. If this happens don't wait for your doctor to return to the office.

drayd4 · « **Reply #157 on:** August 09, 2014, 06:01:22 pm »

Carol was experiencing the strong fatigue and shortness of breath .of course blood being 3 pints low would cause this I'm sure. one thing I want all to know while she was experiencing these problems for 3 or 4 days before I finally said enough we're going to the hospital . we were trying to make it to the gastro drs. appointment which was supposed to be friday and we went to ER on Thursday .Point being I shouldn't have waited around . If something like thiss is happening get to the dr. the hospital dr. told me today before releasing her he felt the ribavirin was causing the anemia. thing is Carol has been doing blood work every week and i thought if blood work was that bad someone should have called us in to dr. I'm not going to blame the dr. but kinda feel someone dropped the ball.take care rainbowray. and have you had your blood checked ?

rainbowray · « **Reply #158 on:** August 09, 2014, 10:15:34 pm »

Hi Dray,
Thanks, I will get a blood draw for liver panel and metabolic panel Wednesday. My 2 week draw showed good numbers so I am always watching. It is not easy but a necessity to be on the watch tower so to speak. Keep an eye on hemocrit and hemoglobin numbers. Platlets is important. Albium is a key number.
I might be over vigilant but better than not being prepared. I am the type of person to here what the doctor says, and then look up all the info myself cause I need an assurance. Many times in my past did I walk out of a Doctors office and seek another
because I did not like what I was told. But that is me, if you talk to your doctor and he gives a valid point and listens then you judge the situation.
HepC is not a straight up deal, everyone reacts in different ways, even if genotypes are the same sometimes other factors are involved.

Bucky · « **Reply #159 on:** August 11, 2014, 10:52:54 am »

"I have five weeks left on Sovaldi & Olysio only. My doctor doesn't use Ribiviran or Interferon any longer. According to the latest studies Ribiviran only increases the cure rate by around 5% and prescribing just the two alone is considered off label. The clinic I attend is at a very large teaching hospital that is heavily involved in clinical trials. At 4 weeks I was UD and I had my first normal liver panel in 23 years."

I had previously posted the above in my introduction post to the forum. I am in a F4 state of fibrosis but in much better shape than a lot of people who turn up at my clinic because they handle the worst cases in my state. Since Ribiviran is hard on red blood cells and Interferion is a platelet killer and both can have terrible sides, is the reason my Dr. now only uses S&O when she can get a patients insurance to pay for it. She told me that if I am one of the 5-7% that fail to clear it that several new meds are coming out in the late fall with a 99% cure.

As for my own side effects, I have had a minor few but nothing to even consider stopping. I switched to taking my meds at night with a snack because they make me sleepy. Also, and this one has me puzzled, as my mind is very clear and without the fog some describe, I am having trouble with spelling and typing. It is almost like I am dyslexic. When I type some words come out backwards or completely misspelled. I have to spellcheck everything I post so people want think that I am an idiot. I still speak correctly and can do complicated math equations without any problem so my Dr. has ruled out a stroke or some kind of dementia problem.

On the positive side, my GI system is working great without any problems. I stay hungry and I have been eating like a hog. I have already gained 8 lbs
in 7 weeks.
Bucky....not Becky

rainbowray · « **Reply #160 on:** August 11, 2014, 11:03:14 am »

Bucky,
I wish all Doctors were like the one you have, sounds caring. I'm on Sol/rib and watching symptoms closely since day one.

Anette · « **Reply #161 on:** August 11, 2014, 11:22:34 am »

The last experiment with rib / interferon was summer 2013 to avoid anemia, I received a so-called blood doping in the form of a syringe. do you have it in the United States as well? The same doping as is common in skiers.

Bucky · « **Reply #162 on:** August 11, 2014, 03:25:02 pm »

Quote from: rainbowray on August 11, 2014, 11:03:14 am

Bucky,
I wish all Doctors were like the one you have, sounds caring. I'm on Sol/rib and watching symptoms closely since day one.

Hello rainbowray,
Yes, I really lucked up when I was assigned to her all those years ago. She had just come to the hospital from Colombia, South America and her English wasn't that great but now she has a lovely Southern / Latino accent. She has been heavily involved in research trials for both HIV & HepC medications and is one smart person. She told me about DDAs several years ago when the first trial started.
Bucky

FRED220 · « **Reply #163 on:** August 11, 2014, 09:48:08 pm »

MMMIAMI, like to know what Dr. you are with in Miami. Thanks

Finbar · « **Reply #164 on:** August 12, 2014, 08:24:46 am »

Error he is not a transplant surgeon

lporterrn · « **Reply #165 on:** August 13, 2014, 10:12:45 am »

Hi Everyone,
I am moving a few of the most recent posts, so if you are wondering where your post is, you will see that it is now a new topic. I want to be sure your issues get the attention they deserve. Sometime they get lost in these long posts.

Thank you all for your participation in this forum. I have been in many online hep C groups since 1997, and this is by far the nicest, most supportive group I've encountered.

happy hepper · « **Reply #166 on:** August 13, 2014, 06:21:12 pm »

I'm going on my 4th week of s/o. Side effects are changing, I had more energy for the first couple of weeks, now I feel more fatigue but not overwhelming. I am, however, experiencing super hot flashes, and my hands are hot. The weather is very hot but I have never felt it this much. Also, my feet burn. I haven't spoken to my Dr. about this. Maybe someone else has experienced this? I feel like the virus is burning out of me.
Will be tested in 2 days, hope to be "undetected". I am extremely grateful to every one involved in creating this cure and making it available. What a miracle!!

mitpabon · « **Reply #167 on:** August 14, 2014, 02:14:28 am »

Roger,

I got denied my first attempt. My situation is probably different than most though...
I pushed my doc to resubmit stressing the fact that my platlet counts were averaging 70,000 because I have Lymphoma.

Truthfully I thought that desperate excuse would surely result in a second denial! I figured they would not want to approve a new drug with my other complications. Shockingly my insurance called 4 days after my doc resubmitted!

My liver condition was chronic, ammonia issues / encephalopathy, cirrhosis... I take Xifaxan, Pantaprozal & was taking Lactulose too. I had Hep-C for 30 years but, never had issues until the last 5 yrs.

Now the good news!
I get my next viral load test in October. That will mark 3 months after completing Sovaldi + Olysio. I am virus free & all my liver panels are NORMAL! Praise God!
I feel great, my thinking is crystal clear, my acid reflex has subsided, no more liver swollen feeling, bowel movement issues are almost perfect...

I'll let you all know my results in October...

I pray all have similar results!

relicman · « **Reply #168 on:** August 14, 2014, 09:44:48 am »

does anyone know how effective these meds. are on geno type 1a

JohnJ · « **Reply #169 on:** August 14, 2014, 09:58:32 am »

My understanding is 90 plus percent. Pretty good odds

willie g · « **Reply #170 on:** August 14, 2014, 12:21:55 pm »

hi relicman, I am Genoa 1 twentyfive million ,7.1 geno 1 and I have been in treatment for four weeks, just started a new bottle two days ago, I get itchy, have headache here and there , not a lot of steady sleep, and sensitive to sun and I get a flair up still on my liver and still have that golf ball feeling there but not as much. I am on solv. oylisio and I am on other meds besides that for other stuff, my
palms itch once in awhile[so I am still waiting for a winning lottery ticket lol] so things come and go just like this disease I hope. but if your not comfortable in your own skin, and really having a hard time then heck ya, give the doc. a call. cant hurt and you may have an allergy towards it or something else your taking. drink good fluids, eat well, I now have healthy snacks during the day. that stuff has really helped for me, hang in there,,,,,, willie g

relicman · « **Reply #171 on:** August 15, 2014, 07:58:58 am »

I have been on sovaldi & olysio for 18 days, saw my doctor this week for first time since starting, no results yet on blood work. he told me not to get my hopes too high. that there is a possibility this may not work. so far I haven t had any side effects . I am also on other meds for lower back pain, herniated disc. also watching me for lyme disease, I tested positive for lyme antibodies.

Bucky · « **Reply #172 on:** August 15, 2014, 09:41:31 am »

Quote from: relicman on August 15, 2014, 07:58:58 am

I have been on sovaldi & olysio for 18 days, saw my doctor this week for first time since starting, no results yet on blood work. he told me not to get my hopes too high. that there is a possibility this may not work. so far I haven t had any side effects . I am also on other meds for lower back pain, herniated disc. also watching me for lyme disease, I tested positive for lyme antibodies.

relicman, It sounds like you have a pessimistic doctor. Without knowing him/her personally I shouldn't judge, but a 90-93% cure rate has my doctor and me very excited since the old Interferon & Ribiviren treatment had a cure rate of less than 50%. That is almost double the old treatment! This forum has many members who failed or relapsed after treatment using I&R and have cleared the virus using S&O.
Do you think that your Dr. made the comment because of the lyme antibodies? There are people successively being cure who are HIV+ with less than perfect immune systems. And on the outside chance you are one of the 7-10% there are other meds coming out this fall with an even higher success rate.
Please post your results from your blood work if you feel comfortable doing that.
Bucky

relicman · « **Reply #173 on:** August 15, 2014, 10:16:03 am »

he did say that if its working we should see a significant decrease in viral count. have no problem letting you know what blood work tells. I also went through I & r twice, once Int. only next time both. this so far has been very easy.

Bucky · « **Reply #174 on:** August 15, 2014, 10:57:17 am »

Quote from: relicman on August 15, 2014, 10:16:03 am

he did say that if its working we should see a significant decrease in viral count. have no problem letting you know what blood work tells. I also went through I & r twice, once Int. only next time both. this so far has been very easy.

You certainly have my respect and admiration for your past attempts to treat your C. I wouldn't do it because of the low success rate and side effects of I&R. I waited several years for these drugs since I knew they were in trials.
My Dr. told me that a very large percentage of people go from a high VL to UD in the first month and she sees a lot of patients in clinic. The very few who didn't were rechecked at two months and were UD.

Bucky

lporterrn · « **Reply #175 on:** August 16, 2014, 12:28:59 am »

Hi KC56,
I am fairly new at this moderating, and in a moment of trying to be helpful, I thought I'd move your post and start a new topic so it can get the attention it deserves. I moved Bucky's response to it - It's under "New on dual Sovaldi and Olysio" - I moved Bucky's reply, so be sure to see that.

Hope you get more feedback. Good luck on your treatment.

marivirginia · « **Reply #176 on:** August 18, 2014, 08:52:06 pm »

Eighteen days ago I started Sovaldi and Olysio. The first 5 days, I felt horrible. I couldn't understand why I felt like the last 2 treatments. I found out I had strep throat.
Today is day 18. I felt horrible again. I was working on a ladder today for work and the joint pain was crippling.
It is important to me to be grateful. Today it was difficult to feel gratitude.
It seems most people don't experience the sides that I am experiencing.
I'm 1a, CT Il28B, no Q80Kpolymorphism. 1.3 million viral load. Maybe tomorrow will be better. I am not usually on a ladder for work, but it is necessary to paint a mural.
I have noticed the joint pain is worse.
It makes me happy to see so many people cured!

marivirginia · « **Reply #177 on:** August 18, 2014, 08:53:01 pm »

And I am 62 year old female

kc56 · « **Reply #178 on:** August 18, 2014, 09:08:23 pm »

We'll my second day on sovadi and olysio and feel bad. Sinuses are burning bad. Sinus headache. Any one else? Seems we have extreme high pressure system and dry hot air right now in Houston, sure is coincidental though. Feels like winter in my head. Was hoping to be non eventful, but I am very thankful for this opportunity.

marivirginia · « **Reply #179 on:** August 18, 2014, 09:11:25 pm »

Kc,
I am sorry you don't good, but I appreciate your share. It makes me feel less crazy. I bet you'll better soon!

relicman · « **Reply #180 on:** August 20, 2014, 07:35:50 pm »

well folks, I got the results of my blood work from last week. at the time of testing I had been on S & O for 16 days. I had told my wife that ( it may be in my head but I feel as if I have more energy) now I know it was not. hep-c is undetectable gone , no more, by by old buddy, hot damn! I do know 6 months after treatment ends will be the real test , but at least it gives you hope. thanks so much to the R & D people for trying to help us all. GOOD LUCK EVERYONE!!!!!!!!

happy hepper · « **Reply #181 on:** August 21, 2014, 12:06:34 am »

Congratulations, relicman! Ain't it grand! I just got my undetected yesterday and yeah, it's a wonderful life! Good work!!

rainbowray · « **Reply #182 on:** August 21, 2014, 10:04:51 am »

Nice!

lporterrn · « **Reply #183 on:** August 21, 2014, 10:55:38 am »

Wow relicman - that was fast and powerful!

Anette · « **Reply #184 on:** August 21, 2014, 11:27:31 am »

relicman.....both tumbs up from Sweden. I know the feeling. Its great!

Bucky · « **Reply #185 on:** August 21, 2014, 11:29:20 am »

Quote from: relicman on August 20, 2014, 07:35:50 pm

well folks, I got the results of my blood work from last week. at the time of testing I had been on S & O for 16 days. I had told my wife that ( it may be in my head but I feel as if I have more energy) now I know it was not. hep-c is undetectable gone , no more, by by old buddy, hot damn! I do know 6 months after treatment ends will be the real test , but at least it gives you hope. thanks so much to the R & D people for trying to help us all. GOOD LUCK EVERYONE!!!!!!!!

Relicman, Really great news!!! My Dr. had me wait a month before the first vampire attack, and I was UD then. Some of your feeling are in your head but in a good way. The fact that there is finally a good effective treatment with a 90%+ cure rate was enough to make me cry when approval came though for me to get S&O.
Going from thinking that I would die from liver failure to possibly receiving a cure lifted what seemed like a 1000lbs off my shoulders and really put a spring in my step. That alone gave me incentive to plan some long range projects. I really believe that the cloud that lifted off of me was the cloud of depression, dispare and impending doom. I had considered myself to be terminal.... but not any longer!
When your energy level is high take advantage of it. When you have an off day then rest. I really do have a couple days week where I feel a little more tired, but it generally follows a day where I worked really hard at something.
Bucky
Only 3 weeks & 3days left on meds

relicman · « **Reply #186 on:** August 21, 2014, 03:51:52 pm »

I know we all have a way to go, but after all is clear it would be nice if some how we could all get together . who really knows how this has worried us but us. good luck everyone ,we have got to pull for each other,

happy hepper · « **Reply #187 on:** August 21, 2014, 04:06:16 pm »

Sounds good to me! How about Hawaii? Good place to meet!

relicman · « **Reply #188 on:** August 21, 2014, 04:30:03 pm »

10-4 on that, wife would love it

FRED220 · « **Reply #189 on:** August 21, 2014, 06:35:28 pm »

Hawaii sounds great, hang out in the beach all day and get lots of sun.

relicman · « **Reply #190 on:** August 25, 2014, 08:00:32 am »

going to the doctor Thursday the 28th for my 4 week check up . still no side effects. will post results later. hope everyone is doing well , or better.

.

wordforthewise1 · « **Reply #191 on:** August 25, 2014, 08:31:33 am »

Congratulations to all of you with your good news! I started treatment last Monday, August 18, I haven't felt this good in a long time until I starting treatment! No side effects. Ive been in spine therapy for 8 weeks prior to starting S/O treatment and the very next day after my first dose of S/O my neck and spine pain practically left and is still gone unless I overdo it, plus I have more energy. Praise God for this miracle treatment and thanks to the medical researchers for receiving the knowledge and getting it to us. I get my first viral load check at 4th week, can't wait! Hoping and praying for all of us to feel better and better and to be cured real soon! Keep drinking plenty of water, that does seem to help.

Sharon

Aldora · « **Reply #192 on:** August 25, 2014, 07:33:35 pm »

Starting next week s/o. In training for squash trials. Hope i can maintain stamina.
New to board. Anyone know how Daclastavir is in combo with Solvaldi compared to simeprevir?

oldmarco · « **Reply #193 on:** August 25, 2014, 09:53:01 pm »

I'm in my third week of sol/oly combination feeling tired I don't feel like getting up in the a.m. my appetite is so so some foods smell intolerable, I do get headaches and muscle and joint aches. I do live in FL so I do stay out of the sun. The heat in the summer down here never bothered me until now. Is there any good food supplements I can take?

wordforthewise1 · « **Reply #194 on:** August 26, 2014, 03:36:00 pm »

Hi Aldora,

I am sure you'll do fine on the new treatment, but I'm sorry I am not familiar with daclastavir, I'm on my second week of Sovaldi and Olysio combo, virtually no side effects! It's been so much easier than the past two times I treated with interferon/ribaviron. I read somewhere that we should prepare for the treatment as though we are preparing for a marathon, so that's what I did, spiritually, physically and mentally, you'll be a winner!
Sending all positives your way,,,!

Sharon

Aldora · « **Reply #195 on:** August 26, 2014, 03:56:45 pm »

I have declined treatment with Olsio and have decided to wait it out for daclastavir. Cosmos being the only one to cover company is suspect given their history. Also, the clinical trials for O/S without interferon and ribavarin are ongoing nad not yet approved. For me given all the research i have done it is clear that S/O combo is an inferior treatment. Just me and my liver's 2 cents.

Aldora · « **Reply #196 on:** August 26, 2014, 04:08:34 pm »

Don't mean to be negative, it has been a tough choice as I need to be treated sooner than later. Over 30 years of chronic C g1 and never having been treated before I just want to do it right. I was supposed to originally be treated with Daclastavir, but it's not available right away and i was told i would begin tuesday next week O/S combo without interferon and Riba. Doc's say O/S combo works in the end. Fact is, I am in Florida most of the time taking care of a boat. Photosensitivity issue was huge for me. I prefer to wait. It's all good..question of nuance and which of new meds suits each individual person. Enjoy. Aldora

Aldora · « **Reply #197 on:** August 26, 2014, 04:11:19 pm »

Aldora, wordforthewise1, Anette and 3 Guests are viewing this topic.

Excuse me!!

Bucky · « **Reply #198 on:** August 26, 2014, 04:57:41 pm »

Quote from: Aldora on August 26, 2014, 04:08:34 pm

Don't mean to be negative, it has been a tough choice as I need to be treated sooner than later. Over 30 years of chronic C g1 and never having been treated before I just want to do it right. I was supposed to originally be treated with Daclastavir, but it's not available right away and i was told i would begin tuesday next week O/S combo without interferon and Riba. Doc's say O/S combo works in the end. Fact is, I am in Florida most of the time taking care of a boat. Photosensitivity issue was huge for me. I prefer to wait. It's all good..question of nuance and which of new meds suits each individual person. Enjoy. Aldora

Aldora, S&O are not in clinical trials and both have been approved. They are prescribed off label together which is an entirely different thing. I think that maybe you were referring to the use or not of ribivirin with S&O. Using ribivirin did not increase the cure rate but a very small percentage which is why now S&O is being prescribed without ribivirin. The problem has been with insurance companies paying for the off label use of the two together.
If you have private insurance, S&O both have excellent patient assistance programs and I only pay $30 per month total copay for both.
There are a lot of people that will disagree with you that S&O is an inferior treatment because it has cured them or has them well on the way, myself included.

Bucky

wordforthewise1 · « **Reply #199 on:** August 26, 2014, 05:49:10 pm »

The research I've read is very, very positive for S/O treatment. Also, it's great that so many on this site are posting their successes and challenges while treating with O/S.

Aldora I can relate to the sun sensitivity issue, I live in the Midwest so this is our prime "sun time," which I love. It's not easy giving those things up but it's only for 11 more weeks. I'll really enjoy being outside after it's over, I might even enjoy being out in the snow on a sun shining day once this is over, lol. Having had hep C for half of my life (31 years), I am so looking forward to it being a thing of my past. But you will know when the time is right for you.
This forum was extremely helpful in my deciding to treat with S/O.

Oldmarco,have you tried protein & fruit smoothies as a meal supplement? I struggle to eat a healthy breakfast so I'll have a protein smoothie with lots of fruit in it as a meal replacement. Hope that can help and hope you get more energy soon. Sending best to all"

Sharon

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