Post Treatment with Solvaldi an ribavirin question,

[Mmorgan856]

hi everyone,  I have a question, hoping someone knows the answer.  EOT was sept 10th.  I've picked up every little bug from intestinal problems to diagnosed flu.  An episode of a nasty cold, followed by bronchitis.  I've also had an episode of pretty bad upper right quadrant, felt like liver was swollen an tender.  I'm wondering if my immune system was thrown off from the RIBA an maybe all the antiobiotics an steroids AND tamiflu plus albuterol treatments. Was just taxing my liver function. Any thoughts??  Thanks in advance   Take care.  Mary

[susan400]

You are probably undetected.. (there's a positive thought for you), but, you are right, you do need to get a 12 wk post treatment viral load. You're doctor is either misinformed or mistaken if he did not already recommend it to you. As you know I tested undetected on my 1 wk post treatment viral load and also on week 4 and week 8 during treatment. But, most of the viral load tests don't go all the way down to 0 copies and they are only testing a 'sample' of our blood in the vial. There is no way that w/o the extra post treatment viral loads, that we can be confident of our SVR.  I mean we have lot's of blood in our body and if like my lab, (where it's sent out to), only goes down to 15 copies (IN THAT SAMPLE), what if there are a couple of extra copies floating around that are still being a bit suppressed in our bodies by the lingering Ribavirin and they don't end up showing up in the sample or aren't detected for some reason?  My theory is, if we aren't completely cleared, they could technically resurge and replicate.  Which is why all the scientists/HEP C big-wig Dr.'s recommend the 3 mon. post treatment viral load. And like my Dr. even had me scheduled for a 6 mon. post treatment viral load-just to be extra careful since I had this long history of not clearing.  But, aren't you a genotype 2?  I might be mistaken, but I thought that's what you had said.  I think G2's are supposed to be easier types to clear.  Don't despair.  You may be having right upper quadrant pain for other reasons. Like gallbladder? Or even some old damage that the liver is working hard to repair (now that you're clear)?  I hope so. I will keep good thoughts for you.  Susan400

[Mmorgan856]

hi everyone, just checking in, see how everyone's doing.  Like I said earlier, at my insistence, I'm going for 12 wk. VL. After the holidays..I know from being educated on this forum my GI dr. Is obviously misinformed about waited 12 weeks for confirmation of SVR .to be honest, my nerves are shot.  I know I was in a false sense of security after doc said no worries, I'm cured.  But my intuition and maybe common sense is getting me worried again.  I've had another bout of upper right side pain over liver area.  Pressing on liver area sends excruciating pain thru me, has lasted about 24 hrs this last time.  I keep telling myself this could be damage already done by virus,  dx. Since early 90s an haven't had biopsy since that time.  Maybe all the meds from bout of flu...maybe not even related to hep C.  Find out soon enough.  On the ironic side, get one problem fixed hopefully, an now dx. Of severe osteoarthritis in hip...ugh.  So here we go to physical therapy..on the bright side, never bored with all new things I'm experiencing because of another year older. Praying for SVR for everyone.  Take care.  Mary

[sue4hula]

Sista, your attitude is amazing.  Keep in touch!  Be well!!!

[patra_]

I LOVE your attitude!  You are an inspiration to us all!  I pray that we can return the blessing some day!

Pat

[susan400]

Thanks, Sue 'sister'.  Please don't feel bummed.  I don't want to bum anybody out.  Sure, I am disappointed, but I'm not giving up. Just waiting on the guru's (a.k.a.  Doctors), for figure out what to do with somebody like me...

Susan400

[sue4hula]

Hi Susan.  I haven't been on the board to much of late.  Today, I started thinking about you and decided to check it out and see if you'd had a test.

Crap!  I am so sorry to hear your news of relapse.  I totally get the "tired" statement.  You are fortunate to be non cirrhotic and have some time to wait and recover.  Also time to see some more real world results.  

I decided to wait until 6 months to check my VL as my doc wanted.  I was all set to call and insist on my 12 week EOT test in Nov and then found I just really wanted to wait. Partially, because living with that "UND" for awhile has been great.  I am also concerned that I may have relapsed-just cuz it seems that's how I roll,.  I decided to wait and see what happens with the new treatments instead of just jumping in to another one, as that would be my natural reaction.

I'm bummed for you.  We all so deserve to be cured.  Sending hugs from me.  

[hepc4Sandi]

Hey Susan, I bumped the SVR or Relapse thread if you want to post your result there. You have been such a support on the forum, it is not fair you didn't achieve SVR. Rest and recover, best wishes to you.

[susan400]

Thanks Mary, but I'm not evening considering doing anything about treatment again for a good while.  I know that the new TX's are doing great things for a lot of people, but I have been thru (this last one was my 12th) treatments.  My body has been exposed to protease inhibitor (Telaprevir/Incivek) and now a Polymerase Inhibitor(Sovaldi).  The whole emotional unheaval it does to me each time I've gone through this is just taxing.  All the labs and waiting and stress of wondering about it, it just it's just too much.  I've been doing this for years and years of my life with these treatments.  I am blessed that I've not progressed to cirrhosis and for that, I'm happy, maybe all these treatments at least gave my liver a rest and that has kept my HCV from progressing to the cirrhosis.., is my way of thinking.  The whole thing is also expensive (as far as insurance and the patient assess program), this time, fortunately, I didn't get left with a co-pay, but the next time the insurance company may not be so willing to pay for it considering that I don't have any late stage fibrosis.  So, there are so many factors to consider.  I've gone this long and managed to 'live with' Hep C, so it will be alright for me to follow with my doctors and just let these new drugs play out in the real world for awhile, and see that happens with them in the long haul.  Anyway, I am not devastated, just tired....so tired and weary of doing this bandwagon.  I know you can see where I'm coming from...  Take care and I wish you the very best in SVR!  Susan400

[Mmorgan856]

i am sad to hear you relapsed an I'm hoping that you can take Harvoni.  I see a lot of people starting it.  I'm wondering if the percentage rate of Solvaldi is accurate.  I thought it was like in the high 80s an 90s.  I'm scheduled to have VL done after the holidays at my insistence.  Susan, still my prayers are with you of course an you have a positive hope for SVR which goes along way.  Your a strong Lady an you will beat this .   Take extra care of yourself.  Mary

[Sarah1949]

Oh gosh Susan, what disappointing news. I'm sorry to hear this, but your attitude sounds great about being ready to start a new treatment.

I was reading about your knee flare-up and wondering if you've been checked for CPPD.Deposition Disease. It shows up as calcification on your joints and some people refer to it as psuedo gout because the symptoms are the same except that your uric acid is fine. Pain from flare-ups is the worse pain I have ever had in my life so I hope you don't have it.
http://www.orthop.washington.edu/?q=patient-care/articles/arthritis/cppd-deposition-disease.html

[nursehepc]

I am soooo sorry. At least the treatments now and coming soon have easier side-effect profiles than those that you have had to endure in the past.I admire your strength...your time is coming...(I hope you know that)

I am truly sorry...Joanne.

[AWorriedMom]

Susan, I am so sorry to hear this news. Everyone deserves a cure, but none more than you. I chose not to do Incivek because My IL28b was a TT and I was a total non-responder to any interferon. I cleared with Abbvie. I know you would also. And I bet you would with Harvoni, as well. I am glad to hear that you are not giving up. I hope you have a good rest from treatment and a very Merry Christmas. Then you can jump back in. You will be amazed at how easy the DAAs are compared to triple therapy with Incivek.

[susan400]

I am so sorry to have to report this news:   I have relapsed.   I had my 12 wk post TX blood draw last Tues. am  They called me Fri and said that it had come back in early and it was detected again, that I had relapsed.  I thought something was odd because when I looked at the LFT's posted on the patient access link, from that same blood draw.., they were 10 points higher than in Sept.  I also have been feeling exordinarily tired. I assumed it was because of the holidays, stress, dealing with the back/joint pain, etc.  Anyway, I'm not feeling devastated, just disappointed. Oh well.  I've been through this before.  It just means that I'm not done with it.  Still have to be in this 'game' of monitoring it, watching it, waiting or it, etc., etc.  Thought I'd get to be done with that, but I guess not.  Anyway on a better note.  Have a Merry Christmas!  Susan400

[Mmorgan856]

hey,  my hats off to you for waiting.  I was exactly opposite.  I would have been obsessing having to wait longer.  But, that is smart thinking..hope you get that flu bug under control...sending prayers for speedy recovery. ....I spoke with GI. dr. An told him my concerns an insisted on a VL now, so he's scheduled labs after the holidays..he still says I'm cured, maybe because of GT 2  an undetected at 4 wks, but said fine, if it would put me at ease.  Now, if insurance will pay for another VL, I'll be set.  I'm not stressing at all, an have not had another episode of liver area pain.  Like people mentioned, I think it had to do with all the extra meds, like tami-flu an steroids, ect.  Thanks, EVERYONE for setting my mind at ease about this concern I had.  Everyone so helpful as usual.. Every night I try to check in an see how everyone is doing,    SVR TO ALL OUT THERE... stay cool,,,,mary

[Mmorgan856]

hey, of course I remember you, we ended treatment same day!!  Excited for you that u should be posting soon that you " killed this dang virus". I also got a flu shot, but apparently didn't help this year.  I'm also back around my 3 yr. old granddaughter who was diagnosed with flu just the day before I was so I know where I picked it up.. Gosh, I hate to hear you're having so many flare-ups but just think, hopefully, wonderful news is just around the corner, can't wait to see u post SVR!!!!!    U take good care of yourself.   Mary

[Frank J. Perrotta]

Great advice on the filtered water pitcher!
Many people don't realize that MANY bottled water comes from the city water just as your home tap and it also just filtered - read the labels!

Amazon has some great deals out there for filtered water pitchers including the filters on subscription which greatly reduces the price (15% off)!

mavea is one I totally recommend. I found the basic XXL one nearly half off the Amazon price + the customer service is great! Free used filter returns! UGH, end of the ad.

[dkus]

I relate to the liver tenderness. I seemed to have felt that right after sov/riba EOT 10/12 but seems to have passed. As of tomorrow 12/18 I will be into my 11th week of EOT. Have not had blood work done at 4th nor 8th week. Had the paperwork to do so but declined because of my ability to obsess. Will have my 12 week EOT blood work done on 1/2/15. Have felt great EOT until yesterday. Am feeling flu like symptons. Hot and cold,no nausea. My first thought has been that the hep c is back. The sensations in the tummy area seem all too familiar.

[HopeInPA]

It's alight, Dee. Let me explain myself. My opinion was shaped by an argument I had  long ago with a person who claimed that antibiotics stayed in the system for years. I knew that was not true, because some antibiotics have to be taken 4 times a day, because of very short half-life. While I'm familiar with most common antibiotics and their mode of action, I am completely new to antivirals. I thought the same applied to them. Now I know better.  Thanks Dee :)

[Dee1956]

Sorry for my knee jerk reactions to you.
I am here trying to help others as I was helped during my tx.

[Dee1956]

I wanted to say that in the prescribing instructions that come with the medication it says that Ribivarin can take up to six months to completely leave the body it also states people should use double birth control during that time.
I did not mean to imply it takes everyone 6 months.
I was trying to help, which is what I do when I "post all over"

[dontworry_behappy1]

I drank "lots" of water to get the treatment drugs out of my system.  Lots of water isn't suggesting that others drink  "excessive" amounts of water.   Most people don't drink the recommended daily amount of water.  In fact many are in a consent state of dehydration because of drinking to little water.  Headaches, dry skin, dry eyes, dry mouth etc. can be from just not drink enough water.   I personally stopped drinking bottled water because water stored in plastic bottles over time tastes like plastic.  So after reading about water in plastic bottles I stopped drinking it.  I now have a filtered water pitcher that works very well and the water tastes great.  It comes straight from the tap and into the pitcher which I leave on my counter to remind me to drink water.  It works great absent the "not wanted additives" in tap water.  Oh and the cost is a whole lot less than bottled water.  

I don't have cirrhosis but regardless I practice eating and drinking as little additives as possible.  I noticed by doing so I have always felt better.  So drinking filtered water instead of water straight out of the tap or plastic bottled did and does make me feel better.   Your liver and blood needs water to filter out the toxins from your body.   Drinking water is a very important everyday practice.  Especially important to those who are taking toxic drugs to treat hepatitis C.  Reminding others to drink lots of water is just a reminder to those who are not drink enough.

Should we drink more water or less water for our body weight?  Should we drink filtered water, bottled or from a filtered pitcher?   These are all personal preferences for getting the best personal results for are own body.  If you are in question of how much water you should be drinking everyday than do ask your doctor.

Your liver needs water to do its job

[AWorriedMom]

Sarah, you make an important point. All of us tend to generalize our suggestions and patients need to be cognizant of the fact that everyone is different and no one on this discussion board knows anyone else's medical history. Always, always check with your doctor before acting on someone's advice.

[Sarah1949]

I think 8 8-oz glasses a day is fine for most people but some people on the forums have recommended drinking more.For me, I think I was drinking way too much water. My tap water is loaded with chlorine and other chemicals that are really not all that great for you. I finally switched to bottled water and didn't go over 64 oz daily and started feeling much better. (I had been having pretty bad side effects.)

I've also heard people with ascites say their doctors limit their liquid intake quite a bit. So, lots of water is not the best advice for everyone.  

[dontworry_behappy1]

There has been many who have had treated their Hepatitis C who have Cirrhosis.  I do not.  But in all the communication on this forum on drinking
water I have never heard that drinking 8- 8 oz. glasses of water everyday
is bad for you if you have Cirrhosis.  Ascites is a complication of cirrhosis and its my understanding that you should be treating that complication with medication due to water retention.   I looked on the below referenced forum
and found nothing about drinking less water when you have cirrhosis.  Maybe when you have ascites you should be careful.  

http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

Sorry this happened to you