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Any other geno 3's starting or in treatment?

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Posted 5/27/2014 4:40 AM (GMT 0)
Hi everyone!
I'm 57 and female with geno 3a for 30 + yrs. I recently found out I have cirrhosis as well. I jumped ship on the first interferon/ riba treatments about 17 yrs ago because of the sides. With geno 3, a prior "failed" treatment, and cirrhosis, my cure rate drops to 60-65% as I understand it. I have felt relatively healthy but have been getting a lot more tired in the last year or two. I just recently got diagnosed with the cirrhosis and have varisces as well. Does anyone have experience with these complications? I'm starting treatment this week and need a bit of a pep talk!
Posted 5/27/2014 4:53 PM (GMT 0)
Hi Plant,
Welcome! Exciting news with new Hep C treatment's this year. My husband is geno 3a. He treated twice with interferon/riba, and did become bedridden 4 months the 2nd time treating. He obtained SVR, so it was all worth it. I wish he would have had time to wait for the new drugs. The new drugs seem so much better listening to those treating.

Since you are experienced with the barbaric sides of the the old drugs, you likely will be pleasantly surprised with new drugs that are tolerable. The 3's seem to not be the easiest to obtain SVR, but it is worth it to try. Now that my guy is on the transplant list, the transplant team was very happy he obtained SVR prior to listing. Big Hugs
Posted 5/27/2014 5:21 PM (GMT 0)
Thanks Themiz! I guess my odds at throwing the virus are WAY better with treatment than if I do nothing. I'm crossing my fingers for minimal sides and an SVR. Then we'll see about the condition of my liver. Hug back at ya,
Plant
Posted 5/28/2014 12:14 AM (GMT 0)
Hi Plant. Welcome to the forum. Though protocols approved for each genotype vary we are finding these new drugs to be very effective and less difficult to take than earlier regimens.

Insurance companies are starting to cover the meds, which are very expensive without coverage.

The companies have strict guidelines which allow those with more advanced disease to be treated most quikly.

My partner is taking an off lable combo olysio and sovaldi ( or was, his 12 weeks just finished). He is1a post transplant with high viral load and stage 3 fibrosis who is also interferon intolerant. He had almost no sides but for skin rashes.

Thre are several treatment threads here. Tske a look. Folks are doing well.

MamaLama
Posted 5/28/2014 5:03 AM (GMT 0)
Thanks Mama! Looks like they want to evuare me for a transplant first before they start me on treatment. Wish you and your partner the very best!!
Plant
Posted 5/28/2014 2:32 PM (GMT 0)
Plant, Do you mind sharing which transplant center you are teaming with? And how does your MELD score run?

A bit about us....Themister, my husband, run's mid teens since Dec 2012. He had TIPS, never had acities, had vericies banding every 6 months. Since dx in 2005, which eventually were in the cardia and could not be banded, so ....TIPS. He did have a gastric bleed in 2010. That was his first real crisis. TIPS brought on the dreaded HE. HE has been the worst part of this disease for him, and me. But we trudge through and have learned so many things that can make it worse, and how much lactulose can make it better. Right now, he is running at a low level of HE all the time, but I barely see it. He is able to do quite a bit in the morning hours now.

He takes:
Omeprozole 1 per day
Xifaxan 550 2 per day
Lactulose 30 ml 4 x per day....or more as needed.

His eval was 4 big days at Mayo Clinic AZ last July. It ran smooth, and it looked more exhausting on paper than it was in reality. How is your support system?

Big Hugs...don't be a stranger
Posted 5/28/2014 3:02 PM (GMT 0)
Plant,

I guess they want to find out what is going on with you before they would start any treatment regimen. I hope that they find you well enough to stave off transplant for a while and well enough to handle a treatment as those transplanted Hep C free have much better long term outcomes!!!!

However, if there is something really cooking inside you, you'd want to know that and treat anything ELSE that might be going on.

Mike had his transplant first. He was quite ill and there was no more waiting for treatments to come along, he needed to be transplanted OR ELSE. When they found the HCC tumor, that was the last straw...he needed a new liver. After TP they wanted to treat him, but he almost died on the Interferon/Ribavirin TX in 2003, so that was not a choice. They kept trying to get him in a trial, but that never worked out....he was too sick, showing signs of rejection, had too much fibrosis, didn't have cirrhosis...he never met the study criteria quite perfectly. Then when the Sovaldi/Olysio off lable regimen was approved with JUST his criteria....post TP, high Viral Load, Interferon intolerant...well he is now undetected and none too soon as he has fibrosis stage3.

Good luck to you.

Mama Lama
Posted 5/29/2014 4:43 AM (GMT 0)
Themiz im just being tested more i guess just in case i need a transplant. The varisces concern them and as Mama said above thet likely want to make sure that i dont spring a leak or something if theres something major cooking in there. Theres no transplant center involved or anything yet. I have an identical twin sister who might be able to donate part of her healthy liver if need be. All the info just isnt in yet and they want to make sure they dont need to stop treatment part way theough because ive gone downhill. Themiz i dont know what TIPS is. Do i want to? Also what is HE.?
Thank you and Mama for giving me a bit of info. Im exhausted, trying to work fulltime, and scheduling a ton of doctors appointments and pretty scared. I appreciate you guys a lot!, im wishing bith of you and Themister and Mike all the very best!
Plant
Posted 5/29/2014 5:48 PM (GMT 0)
My husband just finished with his tx and is a 3a. He began early January and did the Ribovirin and Sovaldi. The expense is definitely worth it! He has a zero viral load after having it for 25 to 30 years. He was sick some of the time but he made it. So proud of him. He found out late last year and got his from a tattoo back in 1989 or a blood transfusion in 1986. He was stage 3 with diseased liver but not to cirrhosis yet. But...for the last 5 months, he has had a zero viral load now and it is officially gone! Hang in there and check out the latest treatments. Cure rates are high with minimal side effects - compared to the treatment in the past!!
Posted 5/29/2014 6:09 PM (GMT 0)
Plant, Did I misunderstand? Transplant evaluations are done at transplant center's (hospitals where they do transplants).

For vericies, they will do out patient EGD most likely. If you have vericies that are big enough to band, they do that during the EGD. My husband had them done every 6 months after he was diagnosed in 2005. It was the rare EGD that did not need banding of one or two, at least. When his vericies went into the cardia, he needed a TIPS (which is a shunt ) done to keep him from bleeding to death. The cardia vericies could not be banded.
Now that he has TIPS they watch everything through scans on an annual or bi-annual basis.

HE is hepatic encephalopathy. Do you want to get it? No, no, and no. If you have cirrhosis, it is a good idea to be educated on your disease. Just my opinion. We had no idea, but now I see liver folks going through the same things on this board....not all the same, but many are very similar.

First things first....do whatever testing is needed, get that Hep C treated, and the rest may never be an issue... we are here for you. Big Hugs!
Posted 5/31/2014 8:39 PM (GMT 0)
Hi Themiz!
Well kaiser isn't going to put me on the treatment until I go through an echocardiogram, another endo ( I had 3 varisces banded and have at least two more next time) and a colonoscopy. They said that these must be done since I have cirrhosis with varisces and don't want me to decompensated during treatment as well as to see where I stand in terms of if I need to get a transplant while on treatment.
Posted 5/31/2014 11:15 PM (GMT 0)
Plant,
Sounds like a great plan! And you will get that out of the way so you can focus on slaying the dragon. I am pulling for you, and do hope you will keep in touch as you move forward. Thanks for the info on your pre-treatment testing. So glad you joined us. Big Hugs
Posted 6/1/2014 2:01 AM (GMT 0)
Sounds as if you're on the right track. Welcome to HW.
Posted 6/1/2014 4:59 AM (GMT 0)
Thanks Themiz! Slaying the dragon. I like that. Ok.. The next ten days will give us the info we need to get down to business. Then hopefully I can begin treatment. It seems like these tests will be the final hurdles for me to jump through before starting. I really appreciate the support- and from all who have chimed in. THANKYOU!
Plant
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