Hep C Discussion Forum

Cheddy · Moderator

RE: New Member - Hep C 1a w/cirrhosis -Many questions!

Susie1 · Member

Thanks !!!!

Susie1 · Member

Thanks. I was more worried about the Ribavirin side effects of anemia AND other effects like headaches, nausea, and psychological factors, that he may do poorly with. I'm concerned that if he does not feel well, it will dramatically affect him psychologically, then having THAT interfere with true healing.

Can the cirrhosis reverse if the Hep C is cured? I believe it can and the liver is really amazing.

mallani · Guru

Hi Sue,

Just an opinion. Ribavirin does NOT reduce the platelet count. It accumulates in RBC's and causes an haemolytic anaemia. If hubby's Hb is 12, it may drop to 9-10 or even lower. This is not really a problem. I spent 48 weeks of Rx with a Hb of between 7 and 8. Mind you, I was rubbish.

Don't be put off Riba just because of low platelets.

If it was me, I'd want 24 weeks of Harvoni/Daclatasvir and Riba. Cheers.

RAGDOLL · Senior Member

Hi Susie, and welcome to the forum. This is a great family and glad you found us. Hope your husband starts feeling better and glad you have a good medical team. CC

Loopy Lisa · Guru

Hi Susie and Husband Susie, :)

I wanted to say hi, and hope you are both OK. Its always a difficult situation when you know life is in the balance, and you have a lot on your shoulders regarding research and decision making. You seem to be doing an amazing job, and there is great advice on here.

I can't give input regarding both your situation, but I can say, we are all here if you need support.

Have a lovely day and keep us updated.

:)

JimmyK · Guru

Susie I think this is actually great news!

Your Doctor seems keen recognizing that the Omeprazol can be taken with Harvoni but not at doses greater than 20mg. If it were my choice I would absolutely hold off for the six week period and go for the 24 weeks of Harvoni at that time. In particular based on your Doctors observations which appear to be quite good and complete.

That also sets aside the need for RBV which based on a low Platelet count going into things is much more tolerable not to mention more effective than Harvoni x 12 + RBV.

I am on Harvoni x 24 following a very miserable attempt at V-Pack + RBV. Let's just say that was not my cup of tea.

This protocol, provided you stay hydrated is very easy.

You asked about UCSD so I snooped around some.

http://gastro.ucsd.edu/Pages/default.aspx You folks are in very knowledgeable hands. If your Doctor is cool with the wait and then the Harvoni x 24, GO FOR IT!

Your Husband will be in the 97% to 99% success rate and in my opinion taking advantage of the absolutely best option out there!

Regards

JimmyK

Linuxter · Guru

Hi Suzie,

I'll let others, more familiar with cirrhosis, chime in but it sounds like you are taking a realistic, paced approach in taking things one step at a time, getting past the higher dose of omeprazol and going the longer 24 weeks Harvoni if possible. The improved blood work is encouraging and with the doctor's blessing it's probably best not to try to hurry things.

We'll all be here along the way to listen and to help if needed, tell your husband we all say Hi and we're all rootin' for his recovery. He's lucky to have you doing what you are in researching and coordinating his recovery, Kudos to you.

Take care, you're doing great and he will too. smile

Dave

-- Edited by Linuxter on Tuesday 21st of June 2016 12:20:37 PM

Susie1 · Member

I spoke with the doctor today. After my husband's 2nd endoscopy and banding, she felt there was improvement and now wants to wait 4 weeks before doing another endoscopy (which could be just to check). We told her we would prefer to wait until all the endoscopy/omeprazole stuff is finished before starting treatment and our preference (gut feeling) is to do the 24 weeks of Harvoni w/o Riba. Note: Although you can take omeprazole with Harvoni, he needs a specific, higher dose for the healing of these varices banded ulcers. He does not do well with the "aggressive" or rushed approaches to anything. The doctor felt it would be OK to wait to start the drug treatment because she did see some improvement. Blood number have also improved in the last 2 months. My motivation for starting sooner well, is because this is his life and I don't want to make a mistake, but I also don't want to make a decision out of fear and have it be the wrong decision - he looks to me for guidance because I do all the research. So we could potentially begin the Harvoni in the next 6 weeks. Our gut feeling is to take this one step at a time and give the body time to adjust to each thing. The doctor is willing to work with us and is not pressuring us, so I guess that is a good sign. I am thankful for this forum as it is helpful and inspiring to hear all the success stories and community support is beneficial for healing. SO thank you all. I will be posting some helpful nutrition tips in the Nutrition section you mentioned. With much gratitude, Sue.

Susie1 · Member

If anyone here has worked with doctors at UCSD in San Diego, I'd love to hear privately from you. So far we really like our doctor but I'd be interested in hearing others' experiences.

Susie1 · Member

Thank you so much for sharing! Your experience is so valuable. THANK YOU THANK YOU.

Pablito · Senior Member

Hi Suzie

Welcome. As the others have said if your husband can get 24 weeks of Harvoni all the better. If not then ribavirin is not much fun but the bottom line is that it is do-able, and it does add a few extra percentage points to your husband's SVR success chances for a 12 week regime, which may be important given cirrhosis is present.

I did 4 months of it previously and whilst I didn't enjoy it I coped. It takes a few weeks for the Hb to drop. And 12 isn't particularly low. He could try it and if it was a real problem then his doc could lower the dose or even stop it. Further, my hepatologist says the anaemia is less without interferon....there was talk at one point of it being prescribed for me (before I got offered a trial) and I was certainly prepared to take it again if it was needed.

Either way I really hope it works out for him.

Pablo

wendyo · Guru

so glad you are here Susan. Can't add much to what the folks have said but wanted to welcome you and your husband

Sydhanrahan · Guru

Hi Susan,

i have a decompensated liver which was diagnosed last October when I developed ascites. I had the oesophageal examination last week which found grade one varisces. ( I was quite pleased by that). My fibrosis score was also very high. I went on 12 weeks of Ribaviron, Sofosbuvir and Daklinza at the beginning of last December. By week 8 I was in the no virus detected category, however another specialist advised me to insist on a further 12 weeks of treatment because my my condition was poor and cirrhotics don't achieve viral free status as easily as those with less advanced liver damage.

i ended up only doing the Sof/dac/RIBA.for 12 weeks as physically and emotionally it was too harsh for me. Then I did a further 12 weeks of Sof/dak. Now of course I wish I had tried harder. I am in the waiting zone between EOT and the 12 Week test.

I had virtually no symptoms with the Sof/dak but agree with the others when they say maybe Harvoni is a better option for your husband. Certainly beginning with low haemoglobin levels would make Ribaviron problematic.

Whatever decision you and your husband make with your doctor's advice, we are all here knowing how difficult this must be for you both at the moment, ready to lend an ear when you need it, and hoping that by this time next year your husband will be free of this disease and improving in strength and health daily.

Syd

wmlj1960 · Moderator

Hi Susan and welcome to you and your husband from me also. You have received some good information so far and if you need an example of Harvoni without ribavirin being sufficient for your husband to achieve SVR then you can use me. I am now 55 years old. I was Dx'ed decompensated cirrhotic 1/2014. I failed 24 weeks of sovaldi / ribavirin (7/2014-1/2015) then re-treated using Harvoni w/ no ribavirin (7/2015-1/2016) with a successful SVR this past April. That is with me being HIV+ with a weak immune system. Ribavirin did have a big effect on my Hemoglobin during my 1st treatment starting at ~13.6 down to 7.9 at the end of 24 weeks. (my example attached). Based on my experience and the Harvoni guidelines using omeprazole, I don't see any reason why your husband would not be successful with 24 weeks Havoni without riba.

Tig · Admin

Thank you so much for the offer to assist and advise on the nutritional/natural medicine. I'm certain you'll receive many questions along the way. Nutrition is vital before, during and after treatment, so your expertise will be greatly appreciated. I'm sure you know already that they recommend stopping all supplementation during treatment, it can alter the test results and Tx effectiveness in many cases. Nutrition is a different story and we've got a lot of good thoughts on that, but then, so do you! You'll have to forgive me, you're our first Nutritional Biochemist and I'll have to wrap my brain fogged mind around that first, lol! Very glad you're here smile

Susie1 · Member

Thank you. I already read the Dak info sheet. I'm actually a writer/researcher in functional and integrative medicine, so I have a good medical foundation - I'm just not as familiar with pharmaceuticals as I am with the biochemistry of natural medicine. I will appreciate ALL of the info I get from the many on this forum who have already navigated the medical system, and if anyone has questions about natural medicine, diet or supplements, please direct them my way. I have a Master's in Human Nutrition Biochemistry and I'm trained in Functional Medicine. I appreciate your suggestion of the genetic test as that really jumped out at me and yes, I will insist on learning the stage of fibrosis. Anyway, I will be well-prepared for our next visit and I look forward to learning more from the many who have been through the treatments. Thanks a big bunch everyone!!

Tig · Admin

Hi Susan,

I'd like to welcome you and your husband to the forum too. I think you'll find a lot of information and help with just about anything related to HCV. We don't have all the answers, but we'll sure try to find out!

I'm going to provide you with a link to the Daklinza manufacturers data. It's full of information, maybe too much, but it's got all the technical research and trial results pertaining to the drug and the ALLY trials that studied it's effectiveness.

I think it's vital to have your husband's fibrosis stage accurately evaluated before deciding what treatment regimen is most appropriate. The Sov/Dak/Riba 12 week protocol for GT1A is excellent for non cirrhotics and cirrhotics alike. You mentioned the possibility of your husband being decompensated now. If that's true, then Daklinza may not be the best choice. The higher the Child-Pugh score, the lower the rates of success are. There is no 24 week protocol for this regimen. You also (in my opinion) need to have his RAV (Resistance Associated Variant) status checked. These are viral mutations that can resist the effect of a specific DAA drug. I'm adding a link to some info here on the forum when we discussed it in more detail.

These are all great drugs and they all do an excellent job, when they are used correctly and for the right period of time. You're doing the correct thing by doing your homework and I recommend taking all the notes you can before you see the doctor. When you approach them prepared, level headed and make it obvious that you're in this to win it, they shouldn't resist your questions or requests for other options. If you're not completely comfortable with your doctor and confident that you're receiving the correct care, seek another opinion.

We'll do our best to help you along the way. If you have any questions, don't hesitate to ask.

DAKLINZA

RAV'S

PS: With an already low platelet count and hemoglobin of 12, along with the possibility of decompensated cirrhosis, 12 weeks of Ribavirin would be difficult to tolerate. I'm sure he has little energy now and it will get worse with Ribavirin. Back to the RAV's, if you start and have to stop treatment because of an adverse effect or reaction, the RAV's will have an opportunity to form against the new DAA's. Some can take a lot of time to resolve, which would then limit retreatment options. With his level and severity of cirrhosis being in question, it's best to get this disease stopped now. There are new drugs on the near horizon that may make these RAV dilemma's mute, but at this point, that's not a given. He wants to do this right the first time....

-- Edited by Tig56 on Saturday 18th of June 2016 10:09:51 PM

Linuxter · Guru

Hi Suzie,

Just wanted to welcome you to the forum.Glad you found us, lots of friendly folks here and access to lots of information. Ya, we're just one big family here so make yourself at home and feel free to ask questions or discuss what you like.

No one here can or will give medical advice, of course, and for that will refer you to your doctor but we can and sure will point you in the right direction(s) and to current literature as needed.

Sounds like you are quite familiar with the medical terminology re. HCV but if you need reference to any of the abbreviations used here you might check out this link. Abbreviations used on this site

Here's a link to adding information to your signature line such as genotype, Viral Load, Stage of liver damage, Dates of Start/End Treatment etc. (It helps keep us from asking the same questions over and over and helps you get the information you need. ... when you get time ... some of us don't have as good a memory as others, LOL)

Signature Line Set Up/Abbreviations

Dave

-- Edited by Linuxter on Saturday 18th of June 2016 09:59:02 PM

JimmyK · Guru

Generally speaking there is always someone around or soon will be. Lot's of informed people and we just like helping each other.

We are glad you are here and hope to be of service to you and your husband.

Regards

JimmyK

Susie1 · Member

Thank you. I do see the omeprazole prescribing info. Will print this, highlight and show the doctor. I can see this forum is going to be very helpful to us. I am encouraging my husband to join too for the additional support, which looks fantastic.

JimmyK · Guru

Sometimes they do 12 weeks Harvoni with RBV. Due to platelet count and cirrhotic the 24 weeks straight Harvoni is a better option. The 24 weeks with RBV proved not to add to success.

See page 1 of that same file I sent.

JimmyK

JimmyK · Guru

See page nine middle section. Proton Pump Inhibitors. Print it and show him. These are the official Gu9idelines for Harvoni.

JimmyK

Oh and welcome to The Family here! wink

Susie1 · Member

Thank you SO much! Is this stated in the package insert? I will ask her to reconsider. Also the Harvoni people give a coupon and cover the copay, which is important for us. My sister also did Harvoni with good results. Do you think it can work without the Ribavirin? Originally they wanted to prescribe Harvoni with Ribavirin - that's the scary one for us.

JimmyK · Guru

Greetings,

Harvoni can be taken with Omeprazol. Even the dosing guidelines states such. Must be taken first thing in the morning, empty stomach and both Omeprazol and Harvoni at the same time.

Both my wife and myself take Omeprazol and both treated with Harvoni. She is post treatment and Undetected. I am 39% into treatment and Undetected.

Omeprazol must not exceed 20mg a day.

See if the Doctor will reconsider Harvoni for 24 weeks. That is what I am doing, I take Omeprazol, the treatment is working and I have an extremely knowledgeable Doctor who is well respected in the industry.

All the best!

JimmyK

Susie1 · Member

I am new to this forum. My sister referred me as she found it very helpful during her Hep C treatment with Harvoni, which is now cured. My husband is a 54 year old male with Hep C and cirrhosis. He received only natural therapies in the past 20 years. With cirrhosis getting worse including portal hypertension we began seeing a Hepatologist. He was approved for Harvoni, but then during the endoscopy, the doctor saw esophageal varices and placed 6 bands. He just underwent a second procedure for this yesterday. The doctor wants to do one more in 3 weeks. Since this procedure requires him to be on Omeprazole for 2 weeks for each endoscopy, the doctor is changing his medication to Sovaldi withDaclatasvir (Daklinza) with Ribavirin. My biggest concern now is the Ribavirin. His platelets are low (55) and he is already anemic with out any treatment (HGB 12). Could this treatment work with without Ribavirin? Is it worth a try? We are afraid to take the risk. He has no other health conditions, eats a perfectly clean, almost vegetarian diet (I'm a nutritionist). They still have not told us how serious the cirrhosis is, but we think its decompensated which is why they want to proceed with treatment now. Anyone with experience with this - I'd love to hear from you please!

Hep C Discussion Forum

Legal Disclaimer: