HCV AFTER TRANSPLANT

[gegi]

I TRANSPLANTED 9/15/99. I DON'T KNOW WHAT MY VIRAL COUNT WAS AFTER AND NOTHING WAS EVER DISCUSSED ABOUT THAT.I HAVE BEEN DOING WELL.   2 MONTHS AGO IT WAS 900,000. THIS WK IT WAS 4 MILLION. CAN I BRING IT BACK DOWN IN ANY WAY? I AM GOING TO GET MY PROGRAF CKD MONDAY BECAUSE FOR SOME REASON THAT WASN'T DONE AND THEY SAY THEY MAY HAVE TO INCREASE THE DOSAGE.  IS THAT BECAUSE THE BODY WILL SENSE A PROBLEM AND TRY TO REJECT?  SHOULDN'T I HAVE TRIED TO GET RID OF THE HCV RIGHT AFTER THE TRANSPLANT? I WAS ON THE WAITING LIST FOR 3 YRS AND FUNCTIONING. MAYBE I SHOULD HAVE TRIED SOMETHING ELSE BEFORE THE TRANSPLANT? WE THINK I GOT IT FROM A BLOOD TRANSFUSION IN '73. I AM PRESENTLY HAVING PROBLEMS WITH MY JOINTS AND KNEE. I AM ALSO HAVING PROBLEMS THINKING CLEARLY . I GUESS MY DIET HAS NOT BEEN THE BEST. WOULD THERE BE ANY THINGS LIKE FOOD OR ANYTHING TO KILL THE MEAN VIRUS. MY AGE IS 70 NOW BUT I DIDN'T FEEL IT UNTIL THE JOINTS STARTED HURTING. MY LAST BLOOD WK WAS DONE IN NOVEMBER. I HAD FORGOTTEN TO GET INTO THE HOSPITAL TO DO MY MONTHLY THING. I AM IN A NEW TOWN AND AM IN REAL ESTATE SO I JUST FORGOT THAT PART. MY COORDINATOR EMAILED ME THAT THE LAST TIME WAS NOVEMBER AND THE RESULTS OF THE VIRAL COUNT WHICH MADE ME START CLEANING HOUSE AND SORTING PAPERS IN CASE SOMETHING CAN'T BE CLEARED UP.   I WISH SHE WOULD HAVE NOTICED THAT THE TESTS WERE MISSING BUT I WILL NOT DO THAT AGAIN THAT IS IF I GET THE CHANCE. WHAT IS A NORMAL COUNT RIGHT AFTER LIVER TRANSPLANT IF YOU CAN TELL ME THAT. HOW COULD I HAVE KEPT IT DOWN? I KNOW PEOPLE WILL SAY WELL YOU LIVED YOUR LIFE...

[NYgirl]

I don't know how to verbalize which ending you are on to tell you the truth, but knowing this is it - because you have SVR at this point...I just called this the second half :)

It's amazing that it took this long for those sides that levelled you to start to go away.  I wonder if it was like this the entire time how much better your road to recovery would have been.

You've fought so valiantly that you really just don't realize how much you've done for so many of us. Personally I am indebted to you forever and will always try to repay it by being on here to help others.  You changed my entire course and attitude with treatment you know.

You deserve nothing but the GREATEST life ahead now. Back to enjoying the simple things.  I just realized we are off from work tomorrow and it's a Monday and I won't feel like **** and i'll be home. It's sort of like just that simple. Wow a day where I can appreciate life and living.

You deserve Disneyland my friend and I am sure that you are on your way.

[PKCO]

gegi,

There is no 'normal; count for hcv vl after tx. Your main concern is disease progression and vl is not an indicator of that. When was your last biopsy ?  Isn't there anyone on your transplant team who can answer your questions ? I ask this only because it is the first place I would start if I were you. Can you call the GI or hepatology clinic at your transplant hospital and ask to speak to someone who can give you some answers ?

I can pass along some general info, but that's about it.
For the treatment of hcv in OLT patients the concern was, and still is, how to treat someone with two drugs that do opposite things to the immune system,i.e.,suppress and stimulate at the same time.

Untreated, on average, the progression of damage from hcv is faster than it was in the original liver. As a result, if left untreated, the average time of progression to cirrhosis is shorter. That said, I know many (and I do mean MANY) people who never treated and they are doing great post-tp. Many 10,11,12,13 years post-tp and still counting. (I am on the tp list and attend support groups for both pre- and post- transplant patients).

It would be ideal for someone to treat and be undetectable for  the hcv virus before tp, of course. But was treatment appropriate for you ? I don't have a clue. Alot of info is needed to make that kind of assessment.It's a complicated matter. An experienced hepatologist could read your records and give you an answer on this.

The makers of IFN do not advise treatment at your age. As a result, age may be an issue when it comes to treatment depending upon the hepatologist you have. So, if you do consider tx in your future this might be a stumbling block. Or it might not come up at all.  ;) It should be noted that even though the makers do not recommend treatment for your age they are basing that on a full dosing regimen. They do not delineate between full dosing and maintenance dosing, which can be significantly different amounts of IFN. So, this advisement may not apply. This precautionary warning concerning age and IFN also does not take into account the use of a low accelerating dose regimen (all you titraters out there be happy). It's LADR,for short. Useful in certain tx populations to determine tolerability.

I hope you call your tp team. They should be able to answer all of your questions. And since answers can lead to more questions it would be the easiest and safest way to get your info. If there is a reason why you can't obtain these answers, let me know. A tp team should be a lifelong connection.

Best regards,
PK

[Xenigma]

Here is an article you may want to read...

http://www.medicalnewstoday.com/medicalnews.php?newsid=37090&nfid=rssfeeds

It's from Feb.9, 2006 but interesting
enigma

[Tallblonde]

Sorry for hijacking your thread, Gegi.  

I thought DoubleDose and others might find this study interesting. It was published in this month's Journal of Infectious Diseases:

High serum hepatitis C virus (HCV) RNA load predicts the presence of HCV RNA in saliva from individuals with chronic and acute HCV infection.

Department of Medicine, University of Washington, Seattle, USA. ***@****.

The detection of hepatitis C virus (HCV) in saliva was studied. Twenty-three subjects with chronic HCV infection and 1 subject with acute HCV infection were enrolled in a 21-day study. Roche COBAS Amplicor and Bayer VERSANT HCV RNA qualitative assays were used. For the 23 subjects with chronic HCV infection, 72% of 474 saliva samples were positive (or were imputed to be positive) for HCV RNA. Serum HCV RNA load predicted the detection of HCV RNA in saliva (odds ratio of 378.7 [95% confidence interval, 18.9-9996.6] for each additional log(10) value). This association was also observed in 1 subject with acute HCV infection. Thus, our data demonstrate that salivary HCV RNA detection was associated with serum HCV RNA load in individuals who were chronically or acutely infected with HCV.

[Tallblonde]

I love your prayers.  Thank you.  I'm sorry you're feeling depressed.  I hope with God's help, and perhaps some medical intervention, you'll find relief soon.

Take care,
Susan

[beamishboy]

hey gegi-yu sure sound 70 yrs young to me!! still selling real estate&taking care of business...I am in no position to offer advice,besides- don't give up on fighting the virus..Mike Simon did have 'similiar situation' and cleared..GoodLuck& please keep posting....
Rocker: i wish yu all STRENGTH fighting depression&anxiety..i've sure been there...given the road we r traveling i expect it is only normal to have times when we feel weak,overwhelmed & just lowdown bad...peace

[GoofyDad]

Age not withstanding, in his article 'HCV- A case for Selective Treatment', Dr. Robert Gish claims pre-tp VL to be very much a predictor of long term tp outcome. He advises post tp tx for patients with a pre tp VL > 1,000,000.

[jmjm530]

My understanding is also that an antibody test would have around 20% false positives, but no false negatives. If it's accurate, a very important step to bring hep c screening to the masses. If and when it come out, I'm sure the test will clearly state a positive result is not conclusive, and direct person to their doctor for a conventional PCR.

Thanks for asking re tx ...

Which second half of tx are you referring to :) Currently, I'm on my third 10-week countdown :) Many of the sides are better -- reflux, respiratory infections, psoriasis (possibly due to  adjustment to the drugs or possibly to a just completed  six-week course of broad-spectrum antibiotics for prostatitis)-- yet, the interferon still hits me pretty hard which seems surprising  so late in treatment as others talk about actually feeling better after the shot with withdrawal symptons the day before.

At this point, not surprisingly, I'm starting to get concerned about relapse --  but at a certain point that decision is not in my hands. Whatever goes down, at least this chapter in my life will be over soon be over.  For the past thirty-five years, I never let hep-c interfere with my life -- hardly gave it much of a thought -- yet treating the disease has totally consumed my life for the past 52 weeks. Cure or no cure, my main priority now is to try and go back to what  up what was a pretty normal, productive and happy former life.

-- Jim

[Tallblonde]

Congratulations on your fabulous news!  That has to be very uplifting and motivating to you.  

I think you're confusing me with the another Susan.  I've never treated and, luckily, I've got time to wait since I'm only a Stage 0-1.  

Best wishes to you, Rocker.

Susan

[OnAPrettyPoison]

Rocker, I always love prayers on Sunday morning!  Thanks for spreading the peace and love!  

If the saliva test is testing against viral load, it isn't an anti-body test is it?  I would think if you are in SVR or cleared the virus spontaneously you would only have the antibodies, not the virus.  I wasn't aware the test screended for the virus itself.  Now they initially screen against the antibodies and then against the virus itself.  It really could save time for a quick diagnosis.  

In a bit of good news, I talked to a friend who just had her 2 year post treatment PCR and was still clear - she doesn't have to go back, just have the test run with her regular physical and forwarded to the GI.  I am so happy for her!

[NYgirl]

Thanks for the lovely prayer.

Id just like to remind the not praying types in here - just skip if you dont like or better yet realize...Rock is just sending a great big cyber hug to us all using words.

Since we can't techincally hug - it's the next best thing.

Rock, praying for you. Big time.

[NYgirl]

I did read that article and I believe it said they HAD developed the test already.

While it sounds easier than a blood test - it also sounds like it could confuse actual active Hep with antibodies. For that 20% that kills it off naturally that could be sort of upsetting.

Really just wanted to say hi and find out how you've been doing on the second (last) leg of your treatment.  I'm glad you decided to err on the side of caution - wasn't my place to say before but now that you are...you've been through SUCH a tough war that I am glad to know you WILL succeed.  And I know you will.

[mikesimon]

Hi there. I was transplanted in June 2000 with HCV type 1b as my underlying disease. I treated and eradicated but it took me 3.5 years of treatment to do so. The first thing I will say is though Prograf is probably the most prescribed drug for controling rejection ther is evidence that Cyclosporine may be better for hep c transplant patients. see thread at Medscape- you have to regsister but it's free and quick:
<A HREF="http://www.medscape.com/viewarticle/522995?src=mp/">TP</A>

Cyclosporine may be a better drug for you regardless of whether you treat. Read the article and ask your people about it.

At the time you were transplanted little was known about how interferon would affect tolerance of the organ - would it cause rejection? The answer appears to be that it doesn't generally result in acute rejection. I started in July 2000 with regular interferon injections 3x per week but at a reduced dose and ribavirin at 600 mg. per day(again a reduced dose). My surgeon was afraid of rejection. I did a year and didn't clear. Then I did a year of Peg-Intron at normal dose and 800 mg. Ribavirin (still a reduced dose)and cleared late and relapsed within 3 weeks after stopping treatment. A month later I did full dose Pegasys and 1000 mg. Ribavirin(full dose for my weight) and cleared at 12 weeks and did 73 weeks total. I stopped treatment in June 2004 and I am still clear. So, it can be done by transplant patients but it is not a common result. There are sites where you can read about this but I will say that often patients stop due to side effects. You age is a negative factor but I don't know your health in general and I would not say you are too old to treat. I will say that Pegasys was much easier as far as side effects go and that there is no way I could have gone for 73 weeks with Peg-Intron but different people react differently. It is too late to address or worry about whether you should have treated before TP or right after so my advice is to not engage in self recrimination or finger pointing on that issue. You have to determine how your liver is doing and whoever said that viral load is no true indicator was right about that. You may be advised to undergo a biopsy or a less invasive test to determine the state of your liver. There is no normal viral load. There is low, average and high and degrees of each but the only inference to be drawn from vl is that the higher the load generally the more difficult to treat and your load of 4 million is 2.8 million lower than mine was 1 month before treatment. The more important aspect of the virus is your genotype which you didn't mention. Really, if the virus is doing a lot of damage I would expect to see soaring, or at least, elevated enzymes but this isn't always the case. Nevertheless it is often a strong indication of your liver health. One thing I will say is don't count on your coordinator to remind you about labs - that is your responsibility and take it very seriously! If I can tell you anything else I will watch for your name. Good luck to you, Mike

[jmjm530]

Thanks for posting. I believe they're developing a saliva-based hep-c *antibody* test in Israel, but this seems to talk about detecting the virus directly in a large per cent of HCV infected individuals. Haven't read the complete article yet, but the viral detection in saliva  seems directly related to viral load. Wonder if saliva has been tested for same in those who are SVR? Maybe DD knows.

-- Jim

[can-do-man]

Hello and welcome,hopefully mikesimon will see your post and can give you some answers. One thing i can tell you is that no one here will say "well you lived your life" Best of luck to you. Sorry i can't be of more help.