Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I don't know of any way to lower the viral load other than treatment. I don't think lowering it would make a difference. If you've got it, you've got it.
My vl was around 17 million when I first treated. I'd had the virus for over 30 years. As you probably know, it's a slow mover. And since you have a new liver, it's most likely in good shape. You're not drinking are you? What does your dr suggest?
I have NO scientific evidence to prove how that happened, but here is what I did after getting diagnosed:
1. Started taking four Milk Thistle pills a day.
2. Cut alcohol down to only 1-2 drinks a week.
3. Ran 1.5 miles, 2-3 days a week.
4. Ate much better than usual.
5. Avoided stress, and got lots of sleep.
Again, no evidence that THIS is what dropped my VL from 12M to 2M, but I know it didn't hurt. I think that if you take good care of yourself and do everything you can to keep your immune system strong, your body will have a better chance at fighting the virus.
Good luck!
I believe that the anti rejection meds required after a transplant essentially have a negative affect on the HCV
After a transplant you obviously still have the virus since its in the blood (it affects the liver but it's a blood issue). So the new liver gets whacked unless you do the hcv treatment along with anti rejection
"My chronic hep c has returned with a vengeance, liver enzymes are off the chart viral load is over 3 million, does anyone know how to lower the viral load and the enzymes?"
Now, just because your viral load is high, it doesn't mean that your liver is damaged yet... Your ALT's & your AST's being off the chart are a better indicator that there MAY be some damage, or at least inflammation to your liver but it doesn't reveal anything specific regarding the extent of any possible damage to your transplanted liver...
The way to find that out for sure is by performing a biopsy or MRE which would give your team enough proof to justify their pushing you to treat ASAP... So you need to find that out first off before rushing into treatment just because your VL is high and btw, my VL was sometimes 18 to 22 million during the times I was treating before I was even on the transplant list...
Get those tests done first before you decide to treat or not...
Now, you also mentioned that you don't want to treat with Ifn and Riba and I completely understand why because I was on it at least nine times that I can remember and ended up stopping because it was no longer doing any tthing useful for me any more and was doing more damage than necessary so I do know why you don't want to go through any of what I have been through already more times than I care to remember!
Still you were asking if there are any alternative treatments available that will at least keep the virus at bay until the new drugs come out - correct? Well Billy, I have got some good news for you...
Now the recommendations given to you by Bivalve are very good alternatives and will be helpful for you should you decide to go that route... I want you to know that the drug you mentioned called Sofosbuvir, otherwise known as GS-7977 is currently available for your team to treat you with under the FDA's Expanded Access program...
Here's the title: "Expanded Access Program of Sofosbuvir With Ribavirin and With or Without Pegylated Interferon in Aggressive Post-transplant Hepatitis C" Here's the link:
http://clinicaltrials.gov/ct2/show/NCT01779518?term=post+liver+transplant+HCV&rank=17
Here's a link to other studies for folks just like yourself and me too:
http://clinicaltrials.gov/ct2/results?term=post+liver+transplant+HCV&Search=Search
If you don't find anything on the first page of the list, keep looking through the next page but most importantly, get on the horn and start getting in touch with any of the studies that may be a right fit for you...
I hope you can put this info to good use but remember to first get the diagnostic test(s) completed first unless one of those studies off a Biopsy or an MRE instead because an ultrasound is not as dependable as the medical community once thought... So first find out the status of your liver before you decide what route you will take to treat the recurring HCV. ;>)
NEVER GIVE UP - NEVER GIVE IN!!!
Respectfully,
HANK
So regardless of the specific type of drug being used by post transplanters like myself as well as others in here too, our immune systems are no longer able to fight off the hcv infection if the Vl's are even @ very low levels where one could be classified as SVR because of the amount initially detected, and in very short order, that very small amount of the virus will multiply via reproduction way much faster than it could in a body with a normal immune system...
That is why there are more studies involving treatment either beginning just prior to the transplant surgery or very shortly after once the amount of anti-rejection drugs have been stabilized & usually no longer on the prednisone, and the patient could better tolerate the treatment also...
Finally, each patient's immune system is unique in it's own sense because of the varied reactions to the different actions taken by each immune response... In other words, some immune systems are either less, or more sensitive to rejecting an allograft (Solid Organ such as a Liver) than for instance, fighting off a viral infection...
And these attributes will change when the immune system is intentionally suppressed as anti-rejection drugs will do, so the immune system is being hoodwinked, bamboozled, and completely fooled into thinking that all is well inside when in reality, there's a very large foreign object in here that really doesn't belong here at all and your immune system goes into defcon one at once as it goes into a fast & furious attack on it by devouring the transplanted organ with killer T-cells to kill it!
Does the immune system kill the organ once it wises up? Most of the time nowadays the answer would be NO but, in the early years of transplantation, the number one cause of death for us post transplanters was rejection of the allograft. that has been changed over the years for the better and is no longer the #1 cause of death for us...
Finally - getting back to my points... every individual's immune system fights the HCV slightly in a different manner andwithout getting into too much details Joe, the result is that the responses are also different due to the health of our immune systems...
So if for instance, a postransplanter used to have a very healthy immune system prior to having to go through the surgery, then their immune system has not been systematically brutalized over time either through fighting off different types of diseases besides HCV previously and will be in better shape to fight off the HCV even if their immune system is no longer as strong because of the anti-rejection drugs...
When you compare that to a person that has gone through many a hellacious experiences fighting off all sorts of nasty diseases and then gets their immune system to be intentionally weaker, then the response towards fighting the recurring virus will not be as good or efficient as one who was relatively in good immune health...
And the variety of the different types of drugs being used to perform this sort of fooling the immune system also contribute to varying responses by their own differences on how they work with your immune system to fight off viral infections while either improving or worsening the way they respond in how they fake your immune system.
Anywho, that's about all I'm gonna explain about this because I notice that I'm starting to repeat myself more than once in here and that tells me that I'm getting tired. Adios Amigo! ;>)
Respectfully,
HANK
Here's another trial that's presently recruiting:
A Study to Evaluate Chronic Hepatitis C Infection in Adult Liver Transplant Recipients:
http://clinicaltrials.gov/ct2/show/NCT01782495?term=HCV&rank=550
Keep looking in this listing of HCV studies going on:
http://clinicaltrials.gov/ct2/results?term=HCV&pg=28
Good luck in finding one the suits you!
Respectfully,
HANK
I'm wondering why Dr. Galati is telling you to start triple in a few weeks, when he told me the same day I can wait until Nov. or so, then go back and see him. But I realize our situations are different, and I believe we have a good, reliable medical team.