relapsed, high alts and ast, iron overload, type 3

[dutchie]

Hi everybody,

I last year did the interferon alfa-2b (3x a wk) and 1000 mg rebetol treatment for 24 wks. Had an excellent EVR; negative PCR and my alt and ast were perfect (resp. 23 and 20, referance ranges 9-52 and 14-36). My 3 months post tx PCR was very disappointing (big understatement), not only was I positive again, but my ALT and AST were resp. 227 and 137 and my transferrine saturation was 20% too high.

It was a very hard 6 mnths, lost 34 pounds (and I'm not that big ;)), due to constant vomating, nausia and an overall sickness. But after thorough consideration I decided to go another round to beat this. This time in a pegasys studie (I live in Belgium, and the pegylated interferon isn't standard procedure) with copegus and possibly amantadine (I don't know yet which group I will be in).

But my hepatologist isn't sure if he will put me on another 24 weeks or will lenghten it to 48. He says that the last studies show that the additional 6 months will make such little difference that it isn't worth the misery. Everything I read online on the subject is mostly about treatment of naive patients, not relapsers. And than the 24 wks treatment is the most appropriate.

My question to you is, has anyone been in the same situation (so a relapser, not a non-responder), genotype 3 and which length of treatment was chosen? I really, really want the best possible chance this time arround.

For everyone confronted with this terrible disease: hang in there!!! I know tx can be bad. Drink lots and lots of water and for getting enough vitamines I used a juicemaker

[dutchie]

That's realy great news, hope his liver will continue to get better during/after tx. I'll keep you informed!

[tina b]

His ferritin right now is 12.3 (low) after the 10 draws. It has been about 4-5 months since a draw and feritun has stayed down and his is eating about anything he wants. He does try to watch some of the iron intake but if he wants a steak he has one. Got some good news yesterday at the dr's office ( I have all the copies) His liver is in wonderful shape according to all the labs! All liver enzymes and functions are normal! Doc even did some other markers and all were neg. WHEW! Clotting time is normal. He will start the meds in about 2 weeks when they get here. His viral load is about 454,000 and was 256,000 about 45 days ago. Doc says it is low. He will be doing peg-int w/ the dreaded reba 1400mg (same as befor but longer) a day for 48 weeks though. He lost about 60 lbs during the first round on tx. He is a big guy so the weight loss actuall made him feel better. He looks and feels great now.  Geno 3a. He is going to start Lexapro (sp) this week (anti-depressant) so it will be in his system when the devil rears its ugly head from the meds. Doc says ok to continue with the milk thistle while on tx. He has a healthy attitude and I have his back so he will get through this and win!
I a praying all goes well for you with your next round, let me know how it turns out. God's Speed to All!

[dutchie]

Thanks for your explaination. What a terrible situation you and your husband are in. I can understand the way of thinking of your doctor and choose for the 48 wks in your husbands case. And I hope of course it will work!!! My fingers are crossed!

I'll see with what my hepotologist comes up (will see him february 9th) about the length of treatment. I'll call him sooner to hear how my transf. sat. is (was 65%, and realy has to go down). Is your husband on a special diet or so? I avoid eating the obvious ferriferous foods, but has anyone given you any iron reduction tips?

I promise to let you know how it turns out and again; my best whishes for you and your husband.

[dutchie]

What a tough ride you two have been going trough! It's unbelievable that the doctor didn't follow up on the iron overload in the first place! I can imagine that your husband is not looking forward to another round (understatement!). I wish him and you the very best, and hang in there! I'm glad to hear you now have a new doctor!

Your post was very enlightning. So he's going to do 48 wks now. Is that because of the hemochromotosis? Or 'just' to beat the virus this time. Dispite the fact that he's a 3?
I don't think it's hemochromotosis in my case, because I was tested before on tranferrine saturation before and then it wasn't an issue, also during my treatment. The doctor explained the certain increase in iron as being the high acivity of the virus in the three months whithout the medicine. But he will test for hemochromotosis if my last bloodwork comes back the same (allthough a 20% iron overload isn't symtomatic for hemochromotosis).

My hepatologist is very reluctant (spelling?? sorry that my english maybe not that well, I'm dutch ;-)) to do any blood draws during treatment because my red blood cells dropped increasingly.
I'm very curious what your doctor suggest to do during the treament.

My best whishes for you and your husband!

[tina b]

He is doing 48 weeks because his internal med dr. of 25 years ignored high iron and high liver enzymes (from 1997 when he knew ) combined with infected gallbladder  (damn near killed him last year) caused cirrhosis. His liver enzyems were high all through out the tx for hep c until the iron came off after the tx. Right now his transferrin sat. is 22%, not really high but is hemochromotosis pos. just the same. The tx promotes liver repair and I really think it has helped heal his cirrhosis. The dr says 48 weeks tx even with the "good" 3a genotype to help the liver. The first gastro dr that treated him did it even though his ferritin was 1002 - unbelievable! At the end of 24 weeks tx his ferritin was 2006! He was sick! The iron made him mean as hell and the very idea that iron was the problem was out of the question to him, fortunately (spelling) I can through a bigger fit than he can so he went to the ER and was tested......it took 3 more weeks for the results..the results were sent to his gastro dr and when we saw him again he told us......"hemochromotosis is pos. and I am moving to Chicago" and passed us on to another gastro doc in the hospital. I later learned he was an intern. I had to buy all the med record results to learn this, but hey, it was a learning experience for me. Like college LOL! ALWAYS ALWAYS get a copy of your labs and test all kinds and check yourself, never leave it to faith that someone else is going to look out for your best interest because they will not. Ask ?'s and demand answers. Like they says "Trust everyone, but always cut the cards." Good luck Dutchie and let me know how this turns out. We go to the new "World Renound" (I'm not kidding) doc today for the rest of the $2,500.00 lab results and you can bet, I will have a copy of all the results when we leave his office. My husband also take milk thistle, green tea, billberry (for the eyes) flax oil and Vit E. This hep c thing is sure a wild ride! God's Speed Everyone!

[tina b]

Hello everyone. I have read for many many months on this forum but never posted. It has been very informative. Thanks for all the information. Husband is Hep C 3A. Did 24 weeks Peg-intron w/rebatol, no virus found @12 weeks. Aweful sides ( any and all possible, especially mean temper). Relapse @ 6 months. I asked dr's until I was blue in the face to have him tested for hemochromotosis before tx, Dr's thought I was nutz! He did tx for 24 weeks and relapsed because he was fighting an up hill battle with the iron. Turns out I wasn't nuts after all, he has hemochromotosis with his hep c and the C on the liver. Liver enzymes are normal now. He is looking at 48 weeks of tx starting in the next couple of weeks.... we go to new Dr. again tomorrow. New doc says even with geno 3a he must do 48 weeks because of the liver c (it has improved) It took 10 phlebotomies in 10 weeks to get his iron to normal. He looks and feels great but is not looking forward to doin tx again for even longer than before. Dutchie: Have you been tested for hemochromotosis? The test for checking is called HFE gene type.  Doing blood draws BEFORE tx is the only way. The tx won't work with to much iron. You still may need a draw during tx, this iron has to be kept in check at all times. Iron is toxic. Anyway, I will keep reading and thanks to all you who share your stories. Keep up the good work! Even if you think you are rambling or griping.....it is helping someone else. To all on the meds....hang in there and God's Speed!

[dutchie]

Another question: has anyone had a phlebotomy before treatment because of an iron overload? Interferon seems to be less effective on persons with too much iron, so my hepatologist is considering it before (not during) treatment.

[dutchie]

@ Indiana: Wow, thanks for your time to find all this! But...  I did also, unfortunately there are no data on specific the length of treatment for the 3's (or 2's). In some of the studie's everyone is treated 48 wks. I know I have a realy good chance (again 80 - 85%) on SVR (same as a naive patient on the 'old' inf. with the rebetol). And for naive patients there's only a few (3 or so) % more chance on SVR with 48 wks. That's not worth the misery. My hepatologist thinks it the same with the next re-treatment with pegasys, but he will look into it for me further. I've been very sick, so 3% is not worth it.... you see?

@ Blueskies: I have my reasons not to wait and whereas maybe (!) in de USA a new drug is found or tried, it might take a long time (or maybe not, but that's trouble with this all) before it is tried in my country and is available for me.

@ Dirac: Thanks for your good whishes. I had the 80 and somewhat % chance allready, but..... that doesn't says it all. So it seamed. But I'm going into the next round with the same positieve attitude as I had before. And fingers crossed :)

[Indiana]

I KNEW I saw someone askin about a Psych eval somewhere!
First off...No, not everyone has had one. But those with really GOOD doctors usually get one. Psych problems are one of the biggest reasons that folks are dose reduced or taken off tx completely. This eval will give them a baseline and may help them decide if you might need to start AD's before you start your tx. You really should do it if they are gonna offer it.
These mads can cause severe...SEVERE depression in those who are prone to it. Depression to the point of suicide. Now, that isn't to say that all folks will have this reaction. About 1/2 of all of us who do tx are on AD's. It is important to try to start them bEFORE the tx if you're gonna take them so they can evaluate the effects and the effectiveness properly. That is hard to do AFTER starting tx because of all the other sides that can crop up.
Here are some articles that I looked up for you on this....
http://janis7hepc.com/hepatitis_c_research21.htm#aggressive
http://janis7hepc.com/hepatitis_c_research22.htm#reasons
Hope this helps you...........

[new-sojourn]

Schring Plough paid for all my meds.  I only paid for blood work every 2mo.  I had no other MD appts or Rx's.  I kept my blood in normal range thru nutritional, herbal and supplemental regimes.  Exercise and a very strong partner who understood and helped in any and every way rounded out my treatment plan.

[Indiana]

If your tx before was indeed interferon alpha(not 2b) 3x/week...meaning the non-pegylated version AND you were a "relapser" then re-treatment with the pegylated stuff has shown to have some good success rates. The usual tx seems to be for 48 weeks reguardless of genotype. The success rates are best for non-type 1's,females,non-chirrosis,and those who tolerated the prior tx well. Here are a few articles I looked up about it for you.....
http://www.hepcassoc.org/news/article79.html
http://www.hepcassoc.org/news/news.html
http://janis7hepc.com/hepatitis_c_research22.htm#chc%20patients
http://janis7hepc.com/hepatitis_c_research22.htm#nonresponders%20and%20relapsers
http://janis7hepc.com/hepatitis_c_research23.htm#treatment

These all apply to Pegasys or Peg/intron type retreatment. As Tess marie said there are other types of interferon availiable(consensus) that can be considered if they are availiable in your country.
These are just some of the articles availiable on this. In your case....it seems to be worth a shot. I do think I would consider doing the full 48 weeks though.
I hope this helps.....

Chevygal....I see no reason so far that should hold you back from doing tx right now. Unless you have some other medical condition you have an excellent chance to beat this thing NOW...and probably in a shorter duration of tx time than many of us. There is nothing right now worth waiting for in your case. We will not see anything all that different comming out for the next few years.

[katch20]

hey, check this out:  
The two currently approved drug regimens by Roche and Schering Plough both have assistance programs
to provide their treatments to patients without healthcare insurance.  You should try and contact them directly to find out if you might qualify for
free or greatly reduced cost therapy. The contact phone numbers are: Schering Plough Commitment to Care  1-800-521-7157 Roche Pharmaceuticals
PEGASSIST  877-734-2797 Another resource is the American Liver Foundation and their phone number is 1-888-4HEPUSA.

[new-sojourn]

I was wondering the same thing about the psyc eval.  That's really 'old thinking' and, staying mainstream, nothing that an AD can't handle. (I don't do AD's, I smoke pot)

Since I had no insurance or extra  $$'s, I got in a study.  B/even if I had had either or both of the two, I wouldn't have done it.(eval thing)

I was in hard core, multiple times a wk, therapy for over 7yrs or so.  On every AD made by man.  Even checked into Betty Ford to get off all the meds.  B/I never cheered up until I was dx w/hep c.  I was delirious at the chance to tx.  And zened out when I cl'd @ 18ds.  I've read that any one in long term therepy for depression should be checked for hep c!

So, I probably would have flunked a psyco eval.  dito on a bx.

I just treated and made all the changes nec to keep what amt of liver left functioning.

[Tess Marie]

I too am considered a relapser after 48 wks. of Peg-Intron / Ribavarin. I am a 1b, grade 3, stage 4. At this point retreatment is vitally necessary. I have found a Hep. C Specialist, in Lakeland, FL., who has had better success rates with non-responders and relapsers with Infergen / Ribavarin. I am in the process of an insurance appeal process & waiting to start therapy. I have done extensive research and have decided that Infergen is the correct chose for me. As for waiting for the development of more potent antiviral drugs or immune modulators which are primary resistant to alpha-interferons, you must evaluate the extent of your liver damage and decide if waiting is alright for you. Good luck with your decisions, and as we all know each case is individually different, but we must fight it. I hope everyone has a good week-end and as sides free as possible.

[new-sojourn]

Why wait?  A 2b has almost certain cure rate.  I'm 56+ and all those pains, aches, etc are gone.  It was so bad before tx, I coudn't open a door. hold a pen, sign my name.  I couldn't take a bath b/c I was too weak to get out (not too fat), I cried all the time.  The water weight gain was put down to the change.  ditto loss of sex drive.

I cl'd in 18 days.  I was infected by transfusion in emer c-sec in '79.  If I had been able to dx and cure hep c in '79, my life would have been dramatically different.

My life is dramatically different now.  I feel and move like a (no not a teenager-I have an 18 yr old and don't want that again) a 30ish yr old.

I haven't felt this good since I was in my 30's.

Why wait?  Why hesitate?  True health is 'just a shoot away,' as Mick would say!

[Dirac]

I am sorry to hear that you went through this, but there is a very encouraging data related to your case. Your genotype is an easy one to treat and for people who relapsed with intereferon, they have an excellent  chance of reaching svr with pegaltated interferon and ribavirin. I remember it reaches almost 80% success rate in your case. I wish you the best of luck.