Relapse 8 weeks harvoni

[Maxima]

Hi!
I try to find someone with similar problems. In Germany there is nobody I found.
With great optimism I started 8 weeks of harvoni on November 12.
Genotyp 1b , viral load 2 million before treatment. In previous years much higher, up to 8 million. IL28B CC.
End of treatment January 6. Now, very shocked I am, the virus is back. ALT and GGT extreme high.
Unusual were heavy side effects during treatment. Diarrhea and nausea. Whereas all harvoni remained inside my stomach, thanks special remedies and diet. I could not work since week 3 of treatment and am still very weak and tired. Joint pains. Problems to concentrate, known as brain fog.
Virus was undetected in week 4 and 7 during treatment.
Unusual was the high GGT end of treatment and, surprisingly, iron overload about 900ng/ml. Slightly lower after 4 weeks, still 600 ng/ml.
Triglycerides meanwhile 550 mg/dl. Normal BMI, healthy diet, no alcohol, no cigarettes.
I am looking for an answer for my relapse.
Sorry for my bad English, hope I could explain. Reading is better...glad to have found you.
Greetings from Germany
Maxima

[Philadelphia]

Hi Maxima, I am sorry to read your news. I will preface e everything  I say with the statement that I am not a doctor and I have only a passing knowledge of HCV.

Reasons for relapse can often involve some sort of RAV - resistance associated variants. Basically some part of the HCV is resistant to the direct acting anti viral you took. Doctors can test for RAVs and I would suggest you talk to someone about that. It will help guide further treatment options.

The good news is HCV research is shining a light onto developing new treatments that overcome these RAVs. There are a number of new drugs that are tipped to hit the markets soon which are designed to get  those tricky little virii.

There's a significant amount of talk at The International Liver Congress in Barcelona right now about this problem - having developed cures for the easier geno types, they are moving onto the harder ones and the patients that are resistant to current treatment.

Keep your ear to the ground and keep pestering your doctor.

Also it's not unusual for liver function markers to shoot up after a relapse, many people report it.

Good luck, keep searching for a cure.

[FutureThinker]

Hi Maxima, and I am very sorry to hear your news.  I am 7.5 weeks into my Harvoni treatment. I'm not a doctor, but my understanding is this is likely due to your DNA &/or the development of resistance during the treatment.  It can happen to any of us and we don't know if we'll develop these "RAVs" until we try the treatment. The cure rate is still not 100%, and a 3-5% group can relapse due to the above. I did not test "undetected" at my 4 wk labs and am anticipating next week's report with crossed fingers. This, too, happens to some people, not testing UD sometimes until after end of treatment.  There are several scenarios to getting cured.

Philadelphia is right, new drugs are on the horizon so talk to your doctor and find out what the next step will be.  There are other posts here on this forum from relapsers, so take a look as there is some very good info posted. Again, I am so sorry to hear this, but what we have going for us now is that there are options when this happens, unlike even 5 years ago. Let us know how this goes.  Take care, FT

[beto]

What Philly said re RAV variants.  I guess the "I'm not a doc" disclaimer  too.  Your English is fine.

From my own experience, getting the iron under control is essential.  I would have your doctor check all of your iron numbers.  Ferratin, Transferin, saturation, binding capacity etc.  I would have your doctor check to see if you have the genetic marker for hemochromotosis (genetic iron overload disease).  Your doctor will know all about this.  Iron overload will raise GGT, ALT, AST remarkably.  Iron is liver toxic.  Ask your Doctor about plebotomies (letting blood). 

[Philadelphia]

Glad you stepped in Beto - I knew you did a heap of research into iron overload.

[Maxima]

Thank you all!!!
I' m so devastated. Reading and reading and reading you are all very encouraging and strong.
My greatest fear at the moment is that the harvoni impaired the fibrosis. On therapy, my Hep doctor never took liver enzymes, only pcr which let me believe everything would turn out fine. Only one  day after last harvoni I let my gp test the enzymes and was very shocked that the ggt was much higher than before treatment 3 to 4 fold). By the way: she never checked ALT.

This was the occasion when I asked for a private paid test for vitamins because I felt so lousy. I didn't want to take extra vitamin which as well could do harm to my liver. By chance, she checked the iron - I guess she had the old therapies in mind - and even congratulated me for the high iron (today still around 600...dropped by 200 points since January ). At once I phoned my Hep doctor and a new test confirmed ggt about 200.  ALT was about 40. Not too good but not bad for ALT. As to the iron he ordered a genetic testing. Negative for three gene mutations, but the laboratory suggested further testing. For the PCR I had to wait until April.  My father died at the age of 60 for unknown reasons. Heart, renal issues, elevated liver enzymes... Nobody could find out in the 80s...it sounds like hemochromatosis.
I believe that the virus returned during the last week of harvoni when I could barely keep the pill in my stomach. But I did thanks remedies.
I admit I lost confidence. Confidence in my Hep doctor, who refused to take enzymes during therapy and confidence in my gp...
Next week I have an appointment in hospital to discuss further steps.
Can I trust? I once had great confidence. Shouldn't the testing being more often? Shouldn't be listened more carefully when telling my doctor such unusual side effects and shouldn't the iron issue be checked before therapy? I learned that high iron is common in heppers. Without regard to hemochromatosis, another serious issue. Had they checked and found out before, much money could have been saved. Not to mention deep sorrow and misery not only for me but as well for my family.

Keep your courage! I hope not having frightened with my story.
Maxi

[beto]

Max.

Your iron reading...is that total "serum" iron or "ferratin?  I don't know...just wondering if high iron saturation could affect the properties of Harvoni...some how block its effects. A liver biopsy in your case could tell you the concentration of liver iron.  There are also blood tests that are specific to that.  Your doc I am sure knows.

[Maxima]

Hi beto,

guess I'm little bit confused after bad news....
Once again I checked:
January,  2016 immediately after last pill:
Ferritin 667 ng/ml
February 1st, 2016 Ferritin 589 ng/ ml
That means, nothing has changed
At least no change within about 3 weeks after harvoni.

Maxi

[beto]

As you mentioned, one does not need to have hemochromotosis to have iron overload.  There are lots of causes, Hepatitis chiefly (but also, consumption of red and organ meats, alcohol, supplements with iron,etc.).  Oral vitamin C causes iron absorption when taken with food.  Cast iron pans can contribute.  If you add up a bunch of those things they could all conspire to raise levels.  I always struggled with high iron values and had ferratin up over 800 once.  So part of my HCV protocols was getting phlebotomies. They worked really well and before I started treatment they were just over 200 and after four weeks of Harvoni they mysteriously dropped to 83 (i think) .  This was not your experience.  I of course did not do phlebs during treatment and I am sure that would not have been OK.  Funny, recently I had a very high serum iron number but ferratin was not high. 

Of course you could be having some kind of reaction to the Harvoni.  I have also heard from folks on this forum who had a really tough time with the drug.  obviously you and your doctor have a few smoking guns to follow up on.  I am sure you are looking at everything that you are doing.  You will get it figured out and I just know there will be a cure for you in no time.

Good luck...I am sorry for your troubles...keep positive and keep us posted.

[Maxima]

Congratulations on your success and many thanks for your VERY encouraging story  .
Tomorrow I'll see new specialist in hospital. My hep doctor is at his wit's end and sent me. Probably it's because testing RAV's.
By the way: no alcohol, no drugs. Very healthy lifestyle. Meat, of course and vitamin C for immune system. Lemon juice every day...Not the best idea with this condition, I assume.
In the meantime Gilead answered. They say there is no proved or known connection between harvoni and ferritin.
I'll keep you posted. 

Maxi

[Maxima]

Hi beto and all,
yesterday they took blood for RAVs testing. I'll get the result within 3 to 4 weeks.
As to the high ferritin the Hep specialist meant it's normal with HepC.
No idea what it was before harvoni.
To make best and be best prepared before new therapy I want to rule out everything.
My father probably died from hemochromatosis. Not proven but his life long symptoms and his early death are a strong hint.
The doctor said the ferritin would be much higher with this disease.
Gene testing was done with so far negative results but the laboratory suggested further testing.
Whom can I trust?

Greetings
Maxi