Criteria for stopping treatment

[Gallette]

I am genotype 1, diagnosed 9 years ago, just had 6 weeks of triple therapy, I had to stop yesterday due to rash over 60% of my body and anemia, had 2 unites of packed cells on Monday.  I am so discouraged.  When will the rash leave, no Riba since last week, no Pegysys since last week and last Incivek yesterday morning.  I did test viral zero at week 4, early cirrhosis by liver bx.  Should I continue with the Riba and Interferon when I recover or is this the end of the road for me. I am so discouraged.

[shocked60]

I had to stop Incivek at 9 weeks due to severe rash. It really worried me even  as I was UND at 4 weeks. The nurse reassured me they had patients who went only 6 weeks before having to stop and still finished 24 weeks UND. My Dr had me continue on with the riba and pegysys. I was again UND at 24 weeks. I would certainly not go against your Dr, but might consider a second opinion or as Hector said have a talk with your Dr. This medication is strong and and effects some more than others. These great people here made me understand my symptoms were not unusual as miserable as they were and if at all possible to to stay strong. I am not advising you to go against your Dr but maybe talk to him. All the best!

[can-do-man]

While I sure wouldn't advise anyone that has been pulled from treatment to go against their doctor and continue with just SOC from one internet post, thats just flat out wrong advise and could be very dangerous.

Since time is very important here I would suggest you either get into another doctor as quick as possibe or have a talk with your current doctor.

Waiting a few years on new meds that are not even approved in your condition might not be wise, besides nobody even knows how well these meds will be with cirrhotic people. There was just some news about these drugs for genotype 2 and cirrhotics did not fare as well as was hoped for.

Best to you.

[BoceprevirGal]

  Sometimes continueing with just the Riba and the Interferon shots,
while your viral load is at zero, can still do the trick, anyway, with 48 weeks. There is about a 44% chance of clearing for Genotype 1s, with just the Interferon and the Ribaviran, but less chance, for cirrhotics, not sure the #
   The difference here, is you did have the 6 weeks of Incivek, and were Und,
What did your Doctor say about you continueing with just the Interferon and Riba (called SOC) ?  
   Every Treatment Doctor is different. I am in a Support Group,  where the same thing happened to a guy in my group, and my Doc did continue him, with just the Riba and Inf, after he had to discontinue the Incivek.
   His rash went away, but his anemia did continue, and he has had to have a few blood transfusions, but he is still Undected virus, at week 42. Like you, he is also cirrhotic. But like I said, each Doctor has a different way of doing things, and my Doctor is unconventional.
   Like Hector says, a Hepatologist would be preferable, but if you cant line that up immediately, then your viral load will most likely come back quickly~
  If I were you, I would continue with the SOC, it's the Incivek that usually
causes the serious rash you are describing, and also many times anemia improves, after the Incivek is discontinued.
  

[HectorSF]

There is always hope. But it takes work to make it happen. Just like treating hepatitis C. It is not always easy but it is well worth the outcome.

I don't know how advanced your cirrhosis is but waiting 2-3 years while having cirrhosis at your age is highly dangerous as liver disease progresses more quickly as we age.

You should be being treated at a liver transplant center. They are the only ones that can manage your cirrhosis, manage treatment and perhaps get you into a clinical trial for cirrhotics. Treatment is rough for many cirrhotics and our chances of cure are less than others with less liver disease. If you wait longer to treat side effects and blood level abnormalities will only get worse I'm afraid.

Anemia is common during treatment with interferon based treatment. There are measures that can be taken to manage anemia during treatment. Dose reduction, Procrit and transfusions. The next generation of non-interferon based hepatitis C treatments do not have these extreme side effects and treatment is only for 12 or 24 weeks instead of 48 weeks. Perhaps the transplant center can get you in a trial?

Please get expert care (transplant center) while you still have options. Unfortunately if you don't stop your hep C and liver disease you may not have the option of a liver transplant as they usually don't transplant patients over 70 years old. So time is of the essence. You may not have years to wait. Only a transplant center after a full evaluation can determine your best options at this point.

YOur closest transplant center is Tampa General Hospital
1 Tampa General Circle
Tampa, FL 33606-3571

Liver

Assessment and treatment of advanced liver disease and liver failure are available. TGH is a designated Liver Transplant Center for the west coast of Florida. Medical treatment with Interferon for individuals with chronic hepatitis is available. Our advanced treatment for ascites and portal hypertension has received national acclaim. Surgery for liver tumors and liver cancer is available for even the most serious problems. Modern surgical treatment for gallbladder disorders has reduced pain and shortened hospitalization.

How To Refer A Liver Patient
Please call or have your physician call Tampa General Medical Group at 813-844-8686.

To help us evaluate your case, your doctor will be asked to send your records to the transplant team so we can review your medical history.

The records should include demographics with insurance information, progress notes, a history and physical, lab results, and procedure reports. These records should be current from the last six months up to a year.

Our physician will review these records and send a written decision to your doctor about your eligibility for an initial consultation. If you are going to be seen here, your insurance will be verified. Once that’s completed, we’ll contact you for an appointment and send you a new patient packet that includes a medical history survey, map and directions to our facility, a list of area hotels offering discounts, a transplant candidate registration request form, consent form, and pamphlet with general patient information.

In case of emergency or a hospital-to-hospital referral, the transplant coordinator will review your medical records with the physician who will oversee your care. If there are no contraindications to transplant, you will be transferred to Tampa General as soon as possible.

If your condition is stable, you will have an initial visit at LifeLink to determine whether transplantation is an appropriate therapy for your illness.

Best of luck! Hang in there!
Hector

[Eki1]

I know you are discouraged.  I had to stop treatment last spring and I felt like my heart was breaking.  I know this is very difficult.

I can't tell you what to do.  Only a doctor can do that.

I can tell you that GREAT drugs are around the corner.  Gilead and Abbot are 2 - 3 years away from releasing drugs that will cure hep C in probably 80 - 90% of the people.  A few more years after that and I believe we'll have a 100% cure.  The Gilead drugs seem to have little side effects, unlike the triple therapy that you've been on which have massively debilitating side effects, like the ones you experienced.

So keep your chin up!  Help is on the way!

Ike