Hep C Discussion Forum

Thanks Malcolm    I trust you are doing well and really appreciate all of your help over this journey. I will always check in to say hello and offer some emotional support to those that are feeling a little down because we both know how that felt.. You take care !

 Well I just had my second to last test and at 40 weeks I am still SVR so that makes me feel good and one more test in two months and I was told that it would be up to my doctor to keep testing for cancer from there.

 My energy level has come back and the only thing that I developed from the treatment was I am told I have irritable bowel syndrome so I am hopeful that will go away with time.

  I still come on the site to check on everyone but Tig56 is doing such a great job there is no need for me to have any input. It sounds like a lot of people are doing very well on the treatments so that is a great sign for all concerned.

  I love reading some of the success stories because I am very aware how long a lot of us waited and how hard we worked to get through treatment. And again I would like to thank all of you that showed such great support over what seemed like a very long journey.

Focus on you, your example is what will help him, he is just in his last drinking days, the drinking is teaching him but he cannot say this out loud but I believe he hears that voice every second of his life, I drank heavily till treatment with i terferon and riba in 2004 then never again, I do not miss it one bit either. Today on olysio and solvaldi and cycling 35 mile treks! Life suddenly changes for many. Wishing you the very best!

 I want to thank you all for the help throughout the long journey and I know you are right about the few beers. I had limited myself to 2-3 per week but this could be why my results are not progressing so I guess I will find something else to drink.

 I still don't have the energy back that I once had but now that I have come back from a bit of vacation I will start jogging again and see if the increased exercise helps. Still golfing and that helps with getting out for some fresh air and rid ones self of the frustrations. Ha Ha  And thx Jill for merging that for me as you know I am not a computer wiz by any means. I have been following the site a lot just not posting and it seems a lot of people are having good results so that makes me very happy.

 Times are good with the new drugs on the rise but we need FDA approval so the competition will drive the prises down. Take care all !

Hi Terry, great to hear such good news, congrats on your SVR 24! 

Give your liver chance to heal and it`s quite likely that in time you`ll see a much improved fibroscan result.  It takes years for Hep C to cause damage to our livers and once the virus has been defeated it takes some time for our livers to recover.

Take care and look after yourself, the hard work it done!!

By the way, my drink of choice nowadays is tonic water with ice and a slice... and that`s how I plan to continue! 

(PS- I`ve merged your last 2 threads together so we can see the details of the Abbvie trial you did, to save people having to refer back.)

yayyyyyyyyyyyyyyyyyyyyyyyyy

Hi Terry,

Congrats on the SVR 24. As Tig mentioned, my Fibroscan score improved dramatically, but I had to pester my doc to do one, and he waited for just over a year after EOT. He said it would take 2-3 years for further regression.

Mate, a few beers and cirrhosis don't mix. A liver 'flush' is a waste of money IMHO. Cheers.

Hey Terry,

Good to hear from you! I have to agree that any improvement in your fibrosis will likely take a year or more and there aren't any promises with that either. Our member Malcolm has seen some improvements but I remember him mentioning it was over a year since his EOT that any progress in that area occurred. There's quite a bit of information on the web, but I think the best chances for success will depend on time post treatment. The liver is an incredibly resilient organ and will in time recover some of it's lost elasticity and vigor, but time will be the most important factor. 

The thought of having a few beers might seem enticing at times, but I've decided that like HCV, it's part of my past and I don't want to do anything that might give it the foothold it needs to return. The chance of relapse at our stage of recovery is less than 1%, and even though the chance of relapse is low, it's still possible.  The single worst things we can do to a liver infected with or damaged by the HCV virus is to feed it alcohol in any quantity. Whatever we can do to keep the possibility low, is worth the effort IMO. I know there are two schools of thought on this, and you're well aware of them. I'm sure you've given them both plenty of consideration. If I should relapse for any reason, be it a wily old virus hiding under a rock somewhere or due to an immune system failure, I'll know that it wasn't because I did something as easy as giving up drinking. 

Thanks for checking in and letting us know how you're doing. Fibrosis will likely take a long time to turn around and in the meantime, just do what you can to keep things moving in the right direction! Good luck Terry....

Tig

 Well I have not posted for some time as I waited for the results from my 24 week tests. I just gave blood for my second to last test and received the 24 week ones and everything seemed really good.

  BUT the part that had me concerned was the fact that I also had a Fibro Scan done and my results from that were not any better then when I started treatment. I have had a couple of beers a week with the boys but even my guy told me it should not have any effect on the reading. So not feeling to good about that because I had quit drinking for over a year and was exercising regular so I was hoping that it would drop a bit.

 I am looking at doing a liver flush so hoping for some tips on how I should do that.

Hi Terry,

I wouldn't worry too much about your neutrophil count. Actually, the lymphocytes are the ones that reflect autoimmune capacity.

Also, being cirrhotic, your platelet levels are OK. Anything over 100 is par for the course. They will gradually edge up towards 150. Enjoy life. Cheers.

terry,

sorry to learn that your immune system isn't doing so well.

i'm 3 months eot & have jumped w/ my white blood cells & neutrophils.

perhaps you should speak to your dr. i believe there's a rescue drug for this.

i know for a fact that Tig was on it.

actually, read my new post for i fought off strep & all other bacterium while on vaca in manhattan!!!!!!

wishing you all the best life has to offer. at least we're 3mo. UND!!!!!!

sandy,ucbgal

Great news, Terry, congrats on your SRV12!!  It must have been frustrating for you having to wait since Dec 23rd but you`ve responded very well all the way through so this result is no real surprise.  A big relief for you to get that call though I`m sure! 

Your platelets are still quite low but as Matt said I wouldn`t worry too much about them, your body is still recovering from treatment and they should start getting back to normal soon.

Thanks for sharing your journey through this trial with us, we appreciate it.

Wishing you all the best! 

Well I have not posted much in quite some time because I had my 12 week EOT blood samples given on Dec 23rd but my next appointment is not until March 21st so I have tried to get results and there was no answer..lol    But I received a call today because they want to do an ultrasound and I found out my 12 week test was in fact still UND so that sure took the sweat off my forehead. My ALT and AST have been normal but my Platelets dropped again to 109 so that concerned me a bit but the UND after 12 weeks sure was a great thing to hear about. I also had been mentioning the constipation problem and after seeing my doctor a short while ago he suggested a product called Normatrol . It seems I have IBS or Irritable bowel syndrome and this product works very good. I have been reading lots of good results from everyone so it seems we are all on our way to a better lifestyle and that is sure great to hear. I wish you all the best and keep fighting !

Hi Terry,

Just finished 18 week Merck trial two days ago.   I had a lot of stomach issues the last few weeks--mostly very bad gas pain.  Couldn't take antacids of any kind with the trial.  Seems some people just have gastric issues with the meds.  No pain yesterday and just a little today.  So it must have been the meds.  Wish I could offer suggestions, but I finally just decided "grin and bear it"  was all I could do.  And I took my meds with food as required. They did a gall bladder scan, but it was normal.  

Congratulations on 8 week UND.  I don't have my EOT labs back, but I've had the same numbers as you during the trial and was UND at week16.  My trial coordinator is very optimistic that I am and will be fine.   

Hang in there!  At least it is not interferon.

SuziQ 

Terry,

I also did the turquoise trial. I just received my 6 month laB & still UND , all liver enzymes normal and for the first time in I don't know how long,my platelet count is 226.WNL!!!!!!!!

it too was all over the place. Before tx they were hovering around 100/110 .

On nov 4 I had a hip replacement, lost 700ccs of blood and my platelets dropped to 86!!!!!

But in a week bounced right back , which an only mean my system is back to working

My History:

I was a G1B 2005 IFN/Ribo non responder. My viral load actually tripled after 3 months!!!!

On Jan 11, 2013 I started the trial, went UND 4 weeks in. The first 2 weeks were <25

I was in treatment for 24 weeks

best of luck to you, eat some psyllium husks and increase you water intake. :)

UND at 8 weeks is a really good indicator that you may have HepC in the rear view IMHO

Mike

Hi Terry, great news about your 8 week result, congratulations!  Your platelets are a bit on the low side but I don`t think you need to be too concerned at that level.  I expect they`ll go back to normal again after your treatment has finished.  The main thing is that you`re still UND! 

You`re doing the best thing seeing your GP about the discomfort in your stomach, that must be quite unpleasant for you.  I think it`s natural to be a bit anxious, especially while on tx when we`re so aware of what`s going on in our bodies.  You`re doing very well though so try not to get too stressed.

Keep in touch, and thanks for sharing your good news! 

Well I hope everyone had a great Christmas !   I was in to this time give 10 vials of blood and my 8 week test came back as UND so that was great news. But the part that had me worried was my platelet count went from 149 the last time to 120 this time and he is not sure why this happened but told me a lot of factors could have skewed the readings . But over the last while I have had gas and my stomach has had small pains and feels uncomfortable so I am going to go see my own GP and see if he might have any answers for this . It might be the stress for all I know.  My next visit is now 3 months away so I am hoping that it of course comes back negative as well. Funny how just one small ache and I start to diagnose the worst and I guess that comes from being panicked for so many years . My running has been curtailed because we are in to rainy season in Vancouver so no need to get a cold..lol   

Terry, sounds good. Best of luck to you, and hoping for a good Christmas for you

Thx Matt and Malcolm     

   I am starting to feel a bit more energy at times but I never though it would take this long. I will give my 12 week sample and receive my 8 week results on Dec 23 so I am hoping for a nice Christmas present.  lol 

  And Malcolm I was told after an ultrasound that I had a bit of a fatty liver and I did discuss the next Fibro Scan and he told me they like to take it about six months after treatment so your information is right on the money.

  At times I was worried because I was still tired and started to get itchy on my chest and back like I had from the riba but I also think that I let my mind work me over as well so just need to relax because I can't do anything about it now. Just need to wait and see what happens. You guys take care !

Hi Terry,

Good to hear from you. Good luck with your 8 and 12 week VL tests, but I don't think you have much to worry about.

Up to 20% of cirrhotics can have a normal ALT.  As you say, a range of 2-3 times normal upper limit is more usual.  In cirrhotics there is a lot going on in the liver, with regeneration, remodelling and hepatocyte damage when nodules outgrow their blood supply.  In itself, this is enough to raise the enzymes, even in the absence of HCV activity.  The fact that your ALT is normal indicates a fairly quiet liver, which is great.

Your Fibroscan reading of 33 kPa is just a bit more than mine was. It measures liver stiffness, which equates to fibrosis, but the reading can be higher when there is fatty infiltration. I obviously had quite a lot, as I have seen from my recent MRI.  Using the new fat-suppression sequence, it is now possible to quantify the amount of fat.  Mine has decreased markedly, so I expect my next Fibroscan reading to be a lot lower.  It'll probably still be >17. You may be the same. Wait 6 months after your SVR and get the Fibroscan repeated. I'm willing to bet the reading will be a lot lower. Cheers.