Author Topic: Sovaldi/Olysio treatment side effects question. (Read 48911 times)

Mommy2kaci · « **on:** August 07, 2014, 01:21:23 am »

I have seen a lot of you have had similar side effects like my mom has since starting treatment a little over a week ago. Recently she has developed a low grade fever. Is this a side effect of the medicine ? She has no side effects of being sick and hasn't been out of the house to have picked up a bug. She just has a fever. Its odd. She got the fever at night a few hours after taking her dose of sovaldi and olysio. If anyone could help we would greatly appreciate it !!

willie g · « **Reply #1 on:** August 08, 2014, 03:33:11 am »

mommy 2 your back! how did your mom do when she was rushed to hospital? we have been praying for yas, I am on other meds but yes when I take these meds with others my body goes thru a hot period for about a half hour and then subsides. probably because the mixture with my meds,, I was out yesterday ,it was sunny and I took precautions but today im pretty itchy,shoulders, hands, stomach and feet. it was my third week blood withdrawl, I thought I was seeing dr. but I guess that's not for a couple more weeks,, he wants enough samples im figuring to get a good baseline reading. willie g

willie g · « **Reply #2 on:** August 08, 2014, 03:40:13 am »

im sorry momy2 I was talking about bewlish I guess, shes the one that went to hospital with mother,, alittle foggy today willie g

hopefulAries · « **Reply #3 on:** September 09, 2014, 10:11:59 pm »

I have had a low grade temp along with tiredness, muscle/joint pain, and jont swellng. I'm working too and it is hard to work and take s/o treatment.

willie g · « **Reply #4 on:** September 10, 2014, 07:55:41 pm »

Hopeful how far are you along just wondering.I'm ON same stuff Willie g

hopefulAries · « **Reply #5 on:** September 10, 2014, 08:06:02 pm »

I have been taking s/o for 9 weeks now. I have 3 more to go. My dr filled out my fmla papers today. I'm going to be off work for 4 weeks. Keep me and my family in your prayers. I am the bread winner of my home. I'm scared, hoping God will take care of us.

lporterrn · « **Reply #6 on:** September 10, 2014, 11:19:15 pm »

Rest easy - holding you in my heart

hopefulAries · « **Reply #7 on:** September 10, 2014, 11:41:52 pm »

Thanks Lucinda Porter!

willie g · « **Reply #8 on:** September 11, 2014, 04:09:17 pm »

GOD WILL,, Hopeful, if he can take care and provide for the Birds just think what he can and has done for us. willie g

wordforthewise1 · « **Reply #9 on:** September 12, 2014, 06:56:02 pm »

"Like, " to that comment willie g!

ejmonk · « **Reply #10 on:** September 12, 2014, 07:58:44 pm »

I've never been on a forum (other than Facebook) so hello! I've treated twice with the ancient cocktail, Interferon/Ribaviron (horrors) without any success. I'm now starting this new Sovaldi/Olysio plan. First, I'm feeling very grateful for the amazing insurance I have and second very hopeful that this is going to work. What I've read sounds inspiring. Today I had a talk with the virus that's decided to live rent free in my body for so many years. I told it that the depot is fast approaching and it's time to part and say goodbye. I don't know how I'll feel tonight when I take the first dose, but all I know is that I'm much more than this disease, and can take a bit more discomfort for a permanent cure. I'll be checking in!

hopefulAries · « **Reply #11 on:** September 12, 2014, 09:35:42 pm »

GOODLUCK EJMONK! You will do great! Stay out of the sun, take it easy, and don't get too stressed.

willie g · « **Reply #12 on:** September 13, 2014, 08:28:52 am »

CHOO CHOO, hey TJMONK, yup the train has left the station and soon that virus will be on the caboose and then off to the track where the next train will chew chew its ass up, your in the right place and thanks for the humor and the post, keeps me going, 'just'' Willie g geno 1 25million 7.1 iu etc. last trip was undetected at half way point and iam now on my third set of those Glow in the Dark meds it seems like most folks at thier half way point are undetctable, isn't that cool!? later

ejmonk · « **Reply #13 on:** September 13, 2014, 01:37:42 pm »

hopefulAries, thanks. I'm in my cave and taking it easy today. I'm giving myself a relax, reflect and ease on into this treatment day. I'm thrilled by all the positive posts and came to the right place!

ejmonk · « **Reply #14 on:** September 13, 2014, 01:41:54 pm »

willie g, it's amazing that after taking my first dose all i felt was a bit of warmth around my belly and core, a slight lightheadedness, but no discomfort. I woke up this morning and the first thing I told my family was "I feel nothing!" I will keep hydrated and out of the sun and count off the days on my calendar! Best!

willie g · « **Reply #15 on:** September 14, 2014, 08:40:41 am »

HEY ejmonk, i woke up this morning, rolled over and swiped my labtop to get image and i saw this cool butterfly on my screen, i hadn't put my readers on so it was blurry and then the thing started moving,! i swiped my screen to try and catch it,[seriously, because it has been a great year for butterflies[ so i could release it before my chuiwoya could get it and another second went by and then another second or so went by i had my glasses on and the dreamworld i was in suddenly hit reality. i looked over at suzie and said 'hey check this out, there is a butterfly on my computer,[at first she was pi??ed i had woke her] ,now shes blinder than a BAT [thats how i got her, great looker but it was last call and lights were real dimmed,when she woke up the next morning and put her glasses on she saw me as i rolled over and screamed! ha ha , now that part was a joke but not your butterfly] so she is squinting and says '',aah,,, that is so cool and then i handed her ,her glasses and then of course she then said,'' your an asshole!'' and rolled back over and went back to snoring .[i feel asleep with internet on and my screen goes black after a few minutes] so ya you made my morning and that's that and it is a true story. woww i bet your thinking right now,[i picked a winner to send a post too] ANYWAY, IT IS GREAT, all your getting is warmth in your stomach from meds, i actually felt a little euphoric the first few days besides having itching, sweats, pain etc. i was having before, which made me initially go to the Dr. for. now i am on some other meds too, oxicontin real deal, not Tylenol or aspirin with it.[had some bad wrecks and job issues,worked in mental health[perfect for me ha ha] where i was blindsided a few times causing surgeries,, plus i am on other meds so after first week i started experiencing the real restlessness , which i have gotten use to and the gulf ball pain in my side got worse ,headaches etc. but nothing i cant deal with. isn't it cool after hearing all the other horror story's of the poor people that were on old meds? [some didnt even finish the treatment it was that bad] ya,so i am glad i was blessed to be put on this combo and my doc says i am the first one in his practice to start so they are really curious to see how i do. Darn sun though tears me up where some folks it doesn't. i wanted to ride but i didn't want to be completely covered and take a chance because the sun does effect your eyes and rashes and blisters in some cases and i am one of those Some CASES,,so watch the sun, wear sunscreen,sunglasses etc. and don't get too confident about it till you've checked it out, now some folks have to take a ribavarin s/o combo because of other GENO types and insurance reasons, and that can be more intense but still better than old stuff, so great for you again my friend and thanks for the morning rush, and ''A TOP OF THE MORNIN TO YOU AND YOUR FAMILY'' ''JUST'' Willie g PS[see the combo of all my meds and s/o probably are my culprit, my doc checked though to see if my meds would be ok,and he said yes and i think thats why he may have pushed for this combo] later

willie g · « **Reply #16 on:** September 14, 2014, 08:56:47 am »

hey MIKE you still out there or dd you take a vacation so much deserved,,, ejmonk,and other he is a moderator too like Lucinda, and few others and he i believe finished up treatment awhile back. anyway they keep us up to date and are very knowledgeable especially because of their hands on stuff of this hep,,, great people, anyway i am going to give MIKE a shout,,,, SHOUUUUUT!!!!, THERE,, made my day '''just''willie g

badbradley · « **Reply #17 on:** September 16, 2014, 10:55:49 pm »

New to forum, S/O treatment - just started 5th wk. 52 yr age, Geno typ 1. bsln vl = 860,000.
Baseline alt = 89, wk 1 alt = 28, wk 2 alt = 23. Labs today, results tomorrow!
Am praying for undetect. Insomnia has been a bit of a nuisance. Some muscle and
joint pain. Eyes somewhat sensitive to sun. Good diet and exercise habits. Generally
feel good. I am also grateful for good insurance and good scientists and GOD!
Fightin' the good fight! - badbrad

sunrise · « **Reply #18 on:** September 17, 2014, 08:28:46 am »

Good morning everyone
Reading all your posts, and am so inspired. I found out in July that I am geno 1a and am sceduled for s/o tx. Waiting for O. to come to Dr. office so I can get my start date. My biggest concern is the fatigue and photo sensitivity. I am self employed and must work. Will the doc be able to give me something to help my eyes as I need to be sharp for what I do.? Luckily I had shortened my schedule since Jan due to the symptoms had this dragon has given me. Thank you for your responses.:-)

Tammra · « **Reply #19 on:** September 17, 2014, 04:41:18 pm »

Hello, I am new here and just starting treatment with Sovaldi/Olysio. Actually, I just took my first pills about 2 hours ago!! I am so excited I can hardly think straight.
I just completed 6 mths of chemo for Non-hodgkins Lymphoma (diffuse large B-cell), caused by my Hep C, back in April. I am now cancer free

My doctors tell me my chances of the cancer returning is very high unless I am cured of this virus....so I have very high hopes that this will work, as we all do.
So far, about an hour after taking the pills, I have alot of heartburn and I got a "hot flash" that lasted a couple of minutes.
Grateful for all of you here sharing your experience!

lporterrn · « **Reply #20 on:** September 17, 2014, 11:22:45 pm »

Congratulations Tammra - you are on your way to freedom!

badbradley · « **Reply #21 on:** September 20, 2014, 09:14:31 pm »

Hello New Friends - Just want to update on wk. 4 lab results I mistakenly thought I would receive on 9/17. Went on line for results - naturally Quant...not posted.Hope to find out Mon. or Tue. My other labs look good...Ast=17, Alt=22,- It is very encouraging seeing those numbers.
Side effects seem to be disapating gradually.Sleeping better, not as tired after meds. Reading these posts makes me realize how fortunate I am to have access to these meds. Two months ago,treatment wasn't a reality for me. Will post Mon. or Tues. - for sure......see ya! badbradley

ejmonk · « **Reply #22 on:** September 21, 2014, 12:55:16 am »

Hello badbradley, it sounds like you're moving right on to success. Good numbers!

Group, I woke up with a headache today, and I never get headaches. Anyone else feel that? That's the first discomfort I've felt. This was my hell week, Monday early took my car, engine light on (smart car) to the dealership, Tuesday had an MRI at the crack of dawn, Wednesday I went back to the gym ahhh muscle memory!, Thursday had an endoscopy checking for ascites, now have dark arm bruises from nurses poking at me, Friday went back to work!!! Maybe the headache is a result of the weeks stress. Waa-waa!
Sunday I rest!
Best
ejmonk

willie g · « **Reply #23 on:** September 21, 2014, 08:55:21 am »

yes today just be a MONK! a normal person [whats normallol] would have a headache. stress does up the side effect's. harness your strength ha ha ''just'' Willie g you got my heart going just reading your post lol

badbradley · « **Reply #24 on:** September 23, 2014, 09:43:01 pm »

Hi,
Had lab order for - hepatitis c virus RNA quantitative PCR -
Had blood work done on 9/16. This was my 4 wk. viral load test.
Have not received results yet - 9/23. I'm getting somewhat concerned.
It seems like I should've received results by now. Treatment = S/O.

Madbradley

lporterrn · « **Reply #25 on:** September 24, 2014, 11:09:28 am »

Delays rarely mean anything more than backlog or a phone call that has slipped through the cracks. As a nurse in a busy practice, I never minded patients calling with a polite, "Just checking in to see if you have results yet." Sometimes that gave me a chance to just tell them the results on the phone, rather than waiting until the end of the day when I had time to do all my call-backs.

badbradley · « **Reply #26 on:** September 24, 2014, 08:10:20 pm »

Hello -
Thank you Lucinda for slowing me down! I did call at around 4:00 this evening-after reading your reply-and asked politely if there were any lab test results available yet. They did have the results but had not had time to review them yet.
So over the phone she read the results --- " UNDETECTABLE " !!! I don't think it has sunk in yet but I feel like I'm floating! I was diagnosed 1/25/2012. Have had this for about 30 yrs. I will continue doing every thing in my power to help myself.
Thank GOD for these meds. HEP-FORUMS - very cool !!
wk 4 -undetect
------ IN THE WRING WITH THE DRAGON -----
badbradley

lporterrn · « **Reply #27 on:** September 24, 2014, 09:00:09 pm »

I wish you could see my face. I am actually crying with joy - I just love hearing this good news. I am cheering for you to make it to the finish line and to a cure.

willie g · « **Reply #28 on:** September 24, 2014, 11:26:54 pm »

HEY BAD BRAD I am happy for you, real happy,,,,, ''just'' willie g

matradee124 · « **Reply #29 on:** November 07, 2014, 05:38:29 pm »

Started medication today so far excellent thank God and many thanks to this forum to help me tru this

sunrise · « **Reply #30 on:** November 07, 2014, 05:53:41 pm »

Good to hear Matradee!! Best wishes for your recovery! Im 6 weeks in and side efects for me have been minimal.
Increased appetite, alittle prickly feeling on skin here and there, slight heaxaches in beginning and alittle more anxiety, but I have that anyway. The best zide effect is Im undetectable at 4, weeks! Pamper yourself and it will go fast you'll see :-)

matradee124 · « **Reply #31 on:** November 07, 2014, 06:09:09 pm »

Thank you very much I like the pampering part I will do that one day at a time congrats to u

willie g · « **Reply #32 on:** November 07, 2014, 07:42:50 pm »

A NEW LIFE HAS STARTED FOR YOU,, praying right now for you,, 'just'' willie g take care MATRADEE

matradee124 · « **Reply #33 on:** November 07, 2014, 09:06:20 pm »

Willie thank you very much for them prayers it means a lot

matradee124 · « **Reply #34 on:** November 08, 2014, 07:52:02 am »

:)Gd mrn Day 2 woke up little migraine bkf and meds go away sun

sunrise · « **Reply #35 on:** November 08, 2014, 08:36:43 am »

Good morning Matradee
See already passed your 1st day! Doc told you what to take for headache right? They should pass. Mine were annoying , but not paralyzing. They seem to be there as our bodies fight off this dragon. Best of wishes! You will do great ...Sunrise

sunrise · « **Reply #36 on:** November 08, 2014, 08:41:02 am »

Oh one thing with Olysio its really good to eat with it. I don't know if youwere told or read it. Really helps tummy and the action of the medicine. :-D and always take together with sovaldi

matradee124 · « **Reply #37 on:** November 08, 2014, 08:45:24 am »

;sunrise ur great dr didn't tell me what I could take but migraine gone thank you

sunrise · « **Reply #38 on:** November 08, 2014, 08:48:23 am »

Glad to hear. You should call and ask them. Its a very common side effect. Have a great day. Soon you will be at the halfway mark like me and estastic with yourr bloodwork! Blessings

matradee124 · « **Reply #39 on:** November 08, 2014, 08:51:15 am »

You have a wonderful Day and thank you sunrise

sunrise · « **Reply #40 on:** November 12, 2014, 10:25:47 pm »

So hey everyone
Having a tough day today. Have bad headache all day. Haven't heard back from doc yet about getting something for anxiety. Been trying to deal with it on my own, but its getting worse. I just feel angst towards end if my morning at work. Do not want to be around anyone. Need something to take the edge off. Im otherwise hopeful, and cannot be more happy about beating this virus. Im on my 45th day of treatment. Seeing the end of the tunnel.

BattleTheBeast · « **Reply #41 on:** November 12, 2014, 10:50:21 pm »

Hey Sunrise,

Sorry you had a crappy day, when I get the headache I tend to drink a bunch of water and that seems to help me. Sometimes I am forgetting to chug the water and then the headache hits to remind me. I smiled when you said you didn't want to be around anyone because I have felt like that since I got diagnosed, heck even before then but didn't know why. I just found out today I have a serious issue with ammonia in my blood which is crazy because every other number is amazing, go figure. I swelled up like a friggen ballon last week and don't have ascities. This is one crazy journey we are on and I feel like just when one thing starts to get a little better than something else hits me. I am totally thrilled you are seeing the end of the tunnel and I hope your tomorrow is better than your today. Remember today is only 24 hours and you can make it to tomorrow, You've got this and you can do it!

~Mel~

sunrise · « **Reply #42 on:** November 12, 2014, 11:01:16 pm »

Thanks Mel
Im chugging the water. Hope you are doing better as well. Wonder why the swelling? Im in bed now waiting for the new day to rise. Its suppose to get colder here in the Southwest, but not like up in the north 40 brrrrr. At least our skin won't burn with jackets on. Im sorry you go thru anxiety also
It is a wierd feeling. I know... sleep well and continue the battle!

BattleTheBeast · « **Reply #43 on:** November 12, 2014, 11:33:52 pm »

I've decided the swelling is because my screwed up body is in cahoots with my insurance company and I needed to spend more money I don't have on co-pays for tests I have already had that continue to be fine and show nothing. I will finally hit my out of pocket max in December just in time for it to roll into a new year and I can start over again. The irony of it all is really amazing....

~Mel~

Rubye · « **Reply #44 on:** November 13, 2014, 12:37:10 am »

This is funny Mel because every time I read a new symptom that you have I think oh yeah, I also have that going on. At times my stomach gets very bloated just below my ribs to where it actually looks like it could be ascites. And so I got to thinking that perhaps water is the culprit. When you have ascites, they tell you to limit your liquid intake down to only about one liter (only 33.8 oz) a day. I had been drinking about 120 oz a day up til a couple of weeks ago and then thought maybe all the water was the cause of my nausea and big stomach. So, I started only drinking when I am thirsty and the nausea has pretty much gone away - to where I am no longer taking the Zofran. The swelling has also lessened a bit.

Part of my thinking is that my city's water has a lot of chlorine in it and they add ammonia to prolong the affect of the chlorine and sodium hydroxide to reduce lead and copper. I can't afford bottled water. I don't know where the idea came from that we should drink so much water because I have not seen anything in the Sovaldi or Olysio recommending drinking extra water.

BattleTheBeast · « **Reply #45 on:** November 13, 2014, 07:31:51 am »

I am a water snob and only drink pure bottled water, no additives. I read the label; goes back to my IC and how I have to be very aware of anything I put into my body. The last think I want right now is an IC Flare on top of all this other fun stuff.

Oh I know one I forgot to mention to you, I have horrible acid reflux since starting the treatment. I had it a little before every once in a while. Now it's bad bad bad. So I talked to the doctor about that yesterday and he said to make sure I take it opposite of when I take the S/O because the S/O needs the acid. So no dropping Tums or an Alka Selzter, you should have 10-12 hours in between an antacid and the S/O and only use the Prilosec or whatever you choose when you absolutely have to. My Doctor has been participating in all the trials for a while, he did the S/O and the Harvoni and the AbbieV, not sure about the Merck one. He told me that one of the symptoms that was common with the S/O trials was slight headaches but when the patients drank water throughout the day it seemed to help them.

Personally I drink about 64 ounces a day but I have for many years now so I haven't upped my intake. I do tend to drink a full bottle when I take the S/O without even thinking about it.

~Mel~

willie g · « **Reply #46 on:** November 13, 2014, 12:54:22 pm »

my acid re flux has been bad before treatment but when I started the s/o it took it to a whole different level,, so I did talk to Dr. and I do take nexium on a regular basis,, unfortunately if I didn't take the 1 a day pill I just cant eat but mels right about tums alkaseltzer and other, you get relief for an hour or two but its not good on a regular basis. I guess the saying ''THATS WHY EVERYONE LIKES DIFFERNT ICECREAM '' comes into play. your body is a Temple,,, poison in,, poison out,, is what a friend use to say to me after a good drinking night out, and I would be hugging the porcelain or heaving a good one, drinking a glass of water and then off to bed lol oh boy ''the good old days'' lol ''just'' Willie g

sunrise · « **Reply #47 on:** November 13, 2014, 04:37:32 pm »

Well hey everyone
Slept last night Thank God for ambien, woke up with headache so I took 2 aspirin. Felt better today. Thanks for the water idea. Its true, I havent been drinking as much as I should. Off to work in a bit. Its my appt. night. Hope you all are feeling ok. Anxiety is somewhat better today also. Still haven't heard back from doc. Pissed about that

Rubye · « **Reply #48 on:** November 13, 2014, 05:32:29 pm »

I had no idea that S/O needed acid. I started taking omperazole around week 2 and it makes life so much easier. I called both Gilead and Janssen and they said it is okay, but now I will make sure to take it 12 hours before. Most of my problems seem to stem from stomach/gut stuff. Even the fatigue hits hardest after my morning bathroom affair. Once done with the bathroom is when it's harder to breathe also. I guess the s/o maybe creates more acid?

Mel, what is IC?

Has anyone been taking xifaxan while on treatment?

Another day closer. I try not to get too excited because what if it doesn't work. But, I'm excited anyway!

BattleTheBeast · « **Reply #49 on:** November 13, 2014, 06:30:34 pm »

Rubye, I am now taking xifaxan for the ammonia.
IC is interstitial cystitis; the lining of my bladder if full of little "ulcers" is the easiest way to explain, there aren't may treatment choices and I have done them all. Was part of trials back in the day at Stanford, no help for me; there is one drug that helps some I wasn't one of the some
I really don't know how the whole "acid" thing works but I don't for a minute question my doctor when he says space them out, acid is important to the S/O.

I just did a google search and found this on Harvoni: http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_patient_pi.pdf

~Mel~

fredder · « **Reply #50 on:** November 14, 2014, 07:12:51 am »

I take Pantoprazole Sodium 40mg for acid. Have been taking it for years. I take it in the evening and take my S/O in the morning to space them out. Neither my Dr or the Nurse assigned to me by Briova Pharmacy have said it would be a problem. I will check with my Dr again.

willie g · « **Reply #51 on:** November 14, 2014, 10:49:03 am »

HEY FREDDER ,I WASon the same exact med before starting treatment,, it worked ok for me but when I started s/o like I said, heartburn went to a whole norther level so they got the approval for nexium for me 1 a day and its been a game changer for me but remember I had and have problems with throat and especially acid reflux.. ALSO when doing treatment and still now and then I ate in bed half up ,half down, then I would doze off,, I am sure that did and doesn't help but its hard to sit up when you know your on this stuff and people have different side effects,,, but yeah in normal life[if there is one lol] you tend to eat on the run or eat watching TV,up and down,etc. but when you have the flu cold or HEPC your in bed,,so I try sitting up and get up after for a little stroll around the house peeking out the windows at the neighbors lol I think some of them think and thought I had either moved or my body was decomposing in my coffin but I would supprise them once in awhile when I would pop out to have my blood done all covered up from head to toe because of OYLISIO! lol 'just'' Willie g

fredder · « **Reply #52 on:** November 14, 2014, 10:52:15 am »

Quote from: willie g on November 14, 2014, 10:49:03 am

HEY FREDDER ,I WASon the same exact med before starting treatment,, it worked ok for me but when I started s/o like I said, heartburn went to a whole norther level so they got the approval for nexium for me 1 a day and its been a game changer for me but remember I had and have problems with throat and especially acid reflux.. ALSO when doing treatment and still now and then I ate in bed half up ,half down, then I would doze off,, I am sure that did and doesn't help but its hard to sit up when you know your on this stuff and people have different side effects,,, but yeah in normal life[if there is one lol] you tend to eat on the run or eat watching TV,up and down,etc. but when you have the flu cold or HEPC your in bed,,so I try sitting up and get up after for a little stroll around the house peeking out the windows at the neighbors lol I think some of them think and thought I had either moved or my body was decomposing in my coffin but I would supprise them once in awhile when I would pop out to have my blood done all covered up from head to toe because of OYLISIO! lol 'just'' Willie g

I was on Nexium a while back but this is much cheaper and works for me so far. Kinda worried about the Sun UV issue but havent had any problems yet and I am 1 month into treatment. Best of luck to you !

willie g · « **Reply #53 on:** November 14, 2014, 11:00:30 am »

yes your right about cost.. that's why I had to get approval and my situation is a little different than yours,,, keep on respecting that sun,,especially wear shades because many of us had like flash burns effects in our eyes. plus I did my treatment in summer and it was a beautiful SUNNY one [wouldn't ya know it!] but hey some others were out playing golf with hat and shades so just take it a day at a time.. HEY EVILSANTA YU STILL OUT THERE TAKING NUMBERS! ''just'' Willie g

Rubye · « **Reply #54 on:** November 14, 2014, 01:44:28 pm »

I took xifaxan for a month and then stopped because my HE is so minimal and the HE has not returned. However, with the S/O I often feel out of sorts mentally and have thought about taking it again. Will see what the doctor says on Monday. Mel, IC sounds really painful. I wonder if with SVR it will get better. I like to think my neuropathy will get better or at least quit progressing.

Well, thanks to you I'm now only taking one omeprazole at 7am and taking the S/O at 7pm. I had been taking a second omeprazole at bedtime but have quit that.

penny · « **Reply #55 on:** November 15, 2014, 10:05:04 pm »

Sunrise: I am not on treatment and get a massive headache whenever I have taken Ambien So I don't take that anymore..

BattleTheBeast · « **Reply #56 on:** November 15, 2014, 10:37:54 pm »

Hi Rubye,

Please check with your doctor, just going by what my doctor said, basically your normal stomach acids should be present when you take the S/O combo and the prilosec will impact that. Hope you are doing well!

~Mel~

penny · « **Reply #57 on:** November 15, 2014, 11:24:01 pm »

Hope you can give us an update ejmonk. You should be getting rid of that virus by now.

sunrise · « **Reply #58 on:** November 16, 2014, 08:22:17 pm »

Thanks Penny
I dont think its the ambien as I had been taking it since my dx.in June. I started getting them sice treatment. On and off. My bloodwork just came in mail. When doc called lasy week, he didnt say anything about my lymphocytes going up or my bilirubin which still is low but weny from .1 to .3 im gonna have to call him before my appt in December as im a bit concerned. Does any else have higher lymphocyte readings?

BattleTheBeast · « **Reply #59 on:** November 16, 2014, 09:03:23 pm »

Hi Sunrise,

I just checked my results.

My Lymph numbers went down
Pre treatment was Lymph (absolute) .2.9 Lymphs 37
Week 2 Lymph (absolute) 2.3 Lymphs 30
Week 4 Lymph (absolute) 2.1 Lymphs 24

My Bilirubin has gone up

Pre Treatment Bilirubin was .6
Two week Bilirubin was .9
Four week Bilirubin was 1.1 (still not over the mark but getting close and we are watching this number closely)

I get all my labs electronically so I can review the numbers easily and do a compare chart myself for key numbers. 37 of 84 days completed almost 1/2 way and the VL is UD per the doctor however the test results is that <15 which is confusing to me.

~Mel~

sunrise · « **Reply #60 on:** November 16, 2014, 09:18:50 pm »

Hey Mel
Yeah it is confusing. I wonder why the lymphocyte level for me has gone up. Guess I will have to ask doc. I have 35 days to go. Now my lab on my vl load said it will only register 5 or up. Mine is not showing any at 4 wks. Hope yours goes to UD all the way

badbradley · « **Reply #61 on:** November 16, 2014, 11:21:11 pm »

Hello Sunrise,
My absolute lymphocytes have been basically around high normal for a couple of years. During treatment they bounced up to 3.8 (nrml 3.5) a tad elevated.That was at wk 8. End of treatment - back down to 3.1. Immune system is fighting (A Good Thing)! You didn't say how high your level is but it is your immune system kickin' ass! Stay healthy- BTW, Nice to hear you're Undetected!
Have a Great week.
Bad Brad

sunrise · « **Reply #62 on:** November 16, 2014, 11:49:10 pm »

So nice to hear from you Brad. My lymphocyte level went from42 2nd week to 47 4th week. Lymph absolutes went from 2.8 to 4.0 above 3.1 is considered high. Just concerned. Guess its just helping meds fight. Maybe they think the meds are the infection! You have a good night ss well...Sunrise

BattleTheBeast · « **Reply #63 on:** November 17, 2014, 03:41:06 am »

Ok, now I'm worried because mine isn't doing that and just keeps getting lower!! This is all so confusing, no wonder it took so so for them to find cures!!

~Mel~

badbradley · « **Reply #64 on:** November 17, 2014, 11:02:03 am »

Hi Mel, Didn't mean to worry you. Our systems have different things going on and it means that at that particular time, the immune system saw fit to raise the level of lymphocytes. They don't have to increase-only as the immune system sees fit. That is my understanding. You are fine - Don't worry.
Bad Brad

Dkredd53 · « **Reply #65 on:** November 20, 2014, 12:10:10 pm »

I just joined this forum and may be able to help and get some advice on here. I am a liver transplant patient going on 5 years now. I am currently on savali (5 months) and olysio (1 week) treatment. Since I started the olysio so late in the treatment, I have to go 12 weeks longer. So this will take me into treatment for about 8 months before its finished. The viral loads were non-existant after the 1st week with the sovadi. So, everything is good.

I've adapted to side effects.

Be glad when this is over. It's been a long long time since I have had energy. Been many ups and downs though this ordeal. Long story from dying on the surgery table 3 times to going into stage 3 and on and on.

Too much to possibly explain. Anyway, I'm here to see how others are doing on this treatment plan. I see how it effects me, but it's probably different for everyone. $:-\$

sunrise · « **Reply #66 on:** November 21, 2014, 09:39:20 pm »

Hi dkredd
Sounds like you have been thru alot! You are a warrior and survivor! Just know we are here for you. What were you taking with sovaldi before they put you on olysio? They alway have to coadminister sovaldi with another therapy aka ribivirin or dasclastivir or interferon etc. Hope you get cured.

Dkredd53 · « **Reply #67 on:** November 21, 2014, 11:22:54 pm »

Hi, Well thank you for the complement. I'm not sure about being a warrior or survivor ? just taking things as the come and really never felt that it was the end but just another obstacle or test. But thank you all the same.
Yes, I was taking ribavirin with the savaldi. They said it was a (ribivirin) inhibitor. When the olysio was approved: They told me to stop ribavirin and start the olysio with (of course) the savadi. I still have to take the anti-rejection meds (cell cept, progragh) and a hep B matinence pil (baraclude) Left the hospital today after labs and they were very busy. The olysio really improves the percentage of the Hep C relapsing. However, there are other things in play that can effect the percentages that are not mentioned. For example if the viral load drops out a s non existant very quickly that is a good sign that your body is working well with that. There other factors too like taking you meds on time every day without fail. Drinking (4) 16 oz bottles of water everyday helps more than people know. Another thing that nobody will admit to is this. DO NOT take and daily multi vitamans until at least 4 hrs (6 is better) after you take your meds. What happens when you take them all together is that all the irons and such in the vitamins attach themselves to all the irons in your meds and robs them of their full strength. Labs will not tell the doctors why your meds are not working good. Doctors simply don't know why. So, this was a tough lesson that I learned. It almost cost me my life. I truly believe that. I can explain why if anyone wants to know.

sunrise · « **Reply #68 on:** November 22, 2014, 04:43:01 am »

Hi Dkredd
That is an interesting point about vitamins. I always take my meds at 530 or600 pm that way I feel the meds work well while I sleep. I only take powder ascorbic acid diluted in the morning also a few drops of d3 and occasionly b complex drops when I feel tired. Im glad you pointed that out as it is 10 hrs later. I don't do a multi vit as alot have iron. I just specifically want just those I take. I have been tested at 4 weeks UD. Which I am so very grateful. Thanks for your imput. This means my chances of a cure went way up. Best to you for your recovery. ..Sunrise

badbradley · « **Reply #69 on:** November 22, 2014, 09:36:03 am »

Hi
It seems it would be very good for people to know about this vitamin issue with meds. If you could provide more info it would be very helpful. Thanks much.
Brad

Rubye · « **Reply #70 on:** November 22, 2014, 12:44:37 pm »

I think any med or supplement you take outside of your treatment meds has the potential to affect them. Unfortunately, because the meds are so new I don't think they've really had a chance to determine if something like the iron in an everyday vitamin is going to make a difference. I've been worried about my pain meds affecting the Sovaldi/Olysio because I've had a lot more sides than the average person on this treatment. Or actually it may be more like the S/O making my pain meds more intense because my main side effects have been nausea and fatigue. Bottom line is we don't know. So, I've cut as far back as I can on those meds.

I just recently learned that the Omeprazole I take decreases the acid that the Sovaldi/Olysio needs (thanks to Mel and then confirmed by my doctor). Thus, it only makes sense to me to not take anything you do not really need to stay alive or make life tolerable. So, I quit taking my Bone Complex vitamins but continue to take my magnesium. My bones can live without vitamins for 12 weeks but I can't live with the cramps I get if I don't take the magnesium. Just my thoughts.

BattleTheBeast · « **Reply #71 on:** November 22, 2014, 01:16:53 pm »

Rubye,

I hear you about things being so "unknown" and I completely agree with you. I have used the interaction chart http://www.hep-druginteractions.org/interactions.aspx but I have the same issue as you with previous chronic pain from another condition I have had for many years. Honestly I would have had no idea about the Omeprazole myself if I hadn't seen a post somewhere about stomach acid. That triggered me and luckily I was going to the dr the next day so I could ask. I worry every day about the pain medication I have to take to deal with my other issue but I can't not take it on I will be in way worse shape. I did ask my doctor about the medication I take and he gave me the following advice; don't take anything you don't HAVE to take. If you have to take it make sure I discuss it with him so he can advise me on when it's best to take in regards to the S/O. So I take my S/O first thing in the morning, when I absolutely have to take the omeprazole I take it in the evening putting a 12 hour window in between, Dr. said 6 hours in sufficient.

In regards to the pain medication, I take a long-acting version of Oxy with no additives, no tylenol, no advil. He said to try and do a 4 hour window so I do my best to manage that. It can make my mornings challenging because of the bladder pain from my other condition but I will deal with the pain if it means I win this battle. I usually know when I am having a flare with the bladder issue and when that happens I am up all night in pain anyway so I can take it 4 hours before I take the S/O and then 4 hours after.

Then come the side effects I have had due to the cirrhosis: high blood ammonia level, swelling and I had to take other prescribed medications. I tried to do the same exact thing as I do with my other medications by taking the S/O in the AM and the "others, only if I have to" at night. Could all of this impact my outcome? I am sure it can but I am doing my best to be very very cautious with any medications or vitamins.

Do you have a place near to you Rubye that you could try an isolation tank? I posted earlier about them with a link explaining how they work and the benefits.
They are supposed to be amazing for chronic pain and stress relief. There is one near me that is supposed to start taking appointments soon. Now the dilemma of if I go right away and float to get some Zen back and help with my pain or will it possibly impact my treatment with S/O? I just hurt so bad all the time and don't know how much longer what's left of my sanity will stay in tact.

~Mel~

Rubye · « **Reply #72 on:** November 22, 2014, 03:33:08 pm »

No way I could afford it Mel. My only income is social security and it's not much at all. I did try acupuncture for awhile at the Indian clinic and it helped me. The thing is the clinic is clear across town and about an hour each way on the train. The neighborhood I live in is too pricey for this sort of stuff.

However, it sounds like a very relaxing treatment and I don't think the Epsom salts would make any difference in your S/O tx. I say go for it.

Dkredd53 · « **Reply #73 on:** November 23, 2014, 11:48:34 pm »

To Badbrad for more info. about vitamins. This what happened to me. I'm a transplant patient. Anyway, after transplant I was doing good until I started takin the multi vitamins per doctors. My numbers started climbing until I ran out of the multi vitamins, by that time I was in stage2 (took only 3 months) Then numbers started declining again. Doc said the hep c had gone back into remission (wrong). I started feeling better and bought more vitamins and within 3 months, the same thing accept now I'm in stage 3 and the doctors had given up knowing stage 4 would be a month away. I talk to my phamicist 5 minutes after this terrible news and she brought to my attention that you cannot take multi vitamins together with anti rejection meds or the vitamins irons will attach themselves to th other meds and rod the strength. I tossed the vitamins in the trash and everything went right back to normal and no problems since. She said to take vitamins at least 4 hours after taking the anti rejection meds. Again I'm transplant patient, so may be totally different.

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