Aa
completed Incivik treatment, was 0, now detectable again, what to do?
I have moderate Crohns for 20 yrs and diagnosed Hep C for 10 yrs. I'm at stage 3-4 fibrosis. I just finished 6 months of treatment, 135 mg interferon, 1200 mg ribivirn and completed 12 weeks of Incivik.
While on the Incivik my load went to undetectable. The very next month after coming off the Incivik the HCV load blood test showed 193.0 IU/mL and yesterday's showed 666.0 IU/mL.
What can I do?
While on the Incivik my load went to undetectable. The very next month after coming off the Incivik the HCV load blood test showed 193.0 IU/mL and yesterday's showed 666.0 IU/mL.
What can I do?
Yes, 12 wks for everyone who treats with Incivek. Humira can lower the ability of your immune system to fight infections as indicated on the prescribing guidelines.
It's has to be tough, fighting Crohn's and Hepc and I wish you the very best and it my sincerest hope that the Mayo Clinic will guide you in the right direction.
Talking always helps and you may find it very beneficial to speak with a professional about the disappointment and depression you're experiencing. There are other anti-d's that may provide more relief than those you are on now. It's worth a try or at least discussing other options.
It's has to be tough, fighting Crohn's and Hepc and I wish you the very best and it my sincerest hope that the Mayo Clinic will guide you in the right direction.
Talking always helps and you may find it very beneficial to speak with a professional about the disappointment and depression you're experiencing. There are other anti-d's that may provide more relief than those you are on now. It's worth a try or at least discussing other options.
I was undetectable at the 4th week of Incivik and there was some confusion (maybe on my part) as to how long (how many weeks) I was supposed to be on Incivik.
As it turned out I was on it for 12 weeks (3 months).
Is that about right length of time?
As it turned out I was on it for 12 weeks (3 months).
Is that about right length of time?
I consider her comments as helpful and supportive during an intense disappointment but I know that no one here is trying to make a diagnosis.
I am thankful for all of the suggestions and insight.
I am thankful for all of the suggestions and insight.
Actually, the Dr was concerned that the interferon would cause the Chrons to flare up, I already had a small active area in the area connecting the small/large intestine.
So after consulting with a Gastro Dr, they put me on Humeria at the same time as the interferon, with bi-weekly injections.
So going into the 2nd month (5th week) I was on 4 meds-3 for Hep C and 1 for Chrons.
I did understand your suggestion about the lowering of the immune system but not the CYP3A relation to immune system.
A few years ago I decided to try to get into the Transplant dept of the Mayo and get under the care of a Hepatologist, to get me established with them. They are admittedly conservative in their treatment. But what do I know. It's the Mayo so I follow their advice!
They want me to stay on treatment for one more week of interferon (180 mg-1 full shot) and ribavirin (1200 mg-3 tabs x 2 day) and then test for hep viral load and test for resistance to Incivik.
I am on low dose of Wellbutrin and Zoloft.
You all have been SOO helpful and genuinely concerned for me, Thank You All.
So after consulting with a Gastro Dr, they put me on Humeria at the same time as the interferon, with bi-weekly injections.
So going into the 2nd month (5th week) I was on 4 meds-3 for Hep C and 1 for Chrons.
I did understand your suggestion about the lowering of the immune system but not the CYP3A relation to immune system.
A few years ago I decided to try to get into the Transplant dept of the Mayo and get under the care of a Hepatologist, to get me established with them. They are admittedly conservative in their treatment. But what do I know. It's the Mayo so I follow their advice!
They want me to stay on treatment for one more week of interferon (180 mg-1 full shot) and ribavirin (1200 mg-3 tabs x 2 day) and then test for hep viral load and test for resistance to Incivik.
I am on low dose of Wellbutrin and Zoloft.
You all have been SOO helpful and genuinely concerned for me, Thank You All.
"have no reason to believe you wont "make it 3 yrs", it is just normal depression, from the dissappointment you have just gone thru. "
________________________________
The man indicates depression is coming on quickly. He talks about not making it. It is not wise or helpful to downplay what someone says, especially when it concerns depression.
In addition, what is "normal depression???" We are not psychiatrists. Plus, even if we were, we could not make any type of diagnosis over the internet, and we would not be able to determine whether the depression is due to circumstances (disappointment), the Interferon, or to endogenous major depression.
A depressed person does not need us (forum members) diagnosing the reason for the depression, or how severe the depression is. The person needs to be evaluated by a psychiatrist so the person can get the appropriate help.
________________________________
The man indicates depression is coming on quickly. He talks about not making it. It is not wise or helpful to downplay what someone says, especially when it concerns depression.
In addition, what is "normal depression???" We are not psychiatrists. Plus, even if we were, we could not make any type of diagnosis over the internet, and we would not be able to determine whether the depression is due to circumstances (disappointment), the Interferon, or to endogenous major depression.
A depressed person does not need us (forum members) diagnosing the reason for the depression, or how severe the depression is. The person needs to be evaluated by a psychiatrist so the person can get the appropriate help.
It occured to me that people with Chrons are sometimes put on corticosteroids. Were you on steroids while treating? Reason I ask is because steroids lower the body's immune response which would inhibit the interferon from ramping up the immunue system to full throttle and with Incivek systemic corticosteroids such as prednisone and methylprednisolone are CYP3A substrates. Since telaprevir is a potent CYP3A inhibitor, plasma concentrations of these corticosteroids can be increased significantly.
That is a very good sign, that you arent having
the symptoms of someone with decompensated cirrhosis. From what I've read and heard, the main symptoms are fluid retention in the legs(edema) and stomach area (ascites), and bleeding, from areas such as the esophegus and other areas (varices).
I am so sorry you did no respond to the Inerferon
(as was illustrated by your 4 week lead in). The Interferon free TX (GS 7977) should work well with you. When you find yourself feeling depressed, remind yourself of hat frequently, and keep that hope in your heart.
Keep careful watch on your health, and see your
Doctor, if you do have symptoms, because there are medicines that can help. You could also look into a Support Group in your area.
As person wih Stage 3~4, who is asymptomatic, you
have no reason to believe you wont "make it 3 yrs", it is just normal depression, from the dissappointment you have just gone thru.
Dont hesitate to go to a therapist, to discuss
your depression, and have it evaluated, as well.
the symptoms of someone with decompensated cirrhosis. From what I've read and heard, the main symptoms are fluid retention in the legs(edema) and stomach area (ascites), and bleeding, from areas such as the esophegus and other areas (varices).
I am so sorry you did no respond to the Inerferon
(as was illustrated by your 4 week lead in). The Interferon free TX (GS 7977) should work well with you. When you find yourself feeling depressed, remind yourself of hat frequently, and keep that hope in your heart.
Keep careful watch on your health, and see your
Doctor, if you do have symptoms, because there are medicines that can help. You could also look into a Support Group in your area.
As person wih Stage 3~4, who is asymptomatic, you
have no reason to believe you wont "make it 3 yrs", it is just normal depression, from the dissappointment you have just gone thru.
Dont hesitate to go to a therapist, to discuss
your depression, and have it evaluated, as well.
I agree with Will (post just above your last post) that you had a Viral Breakthrough.
You said you took Interferon for a month with no change in VL. That pretty much proves what Will stated in his post, "The usual cause of this in patatients is "insensitivity" to the drug "Interferon" ..."
I also agree with Will that it would be advisable to talk with your doctor about getting in to an interferon free trial with one of the new drugs. I don't know where you live, but if I were in your situation, I would want to be under the care of a Hepatologist who is affiliated with a major university affiliated medical center/transplant center. A Hepatologist will not only have the expertise to manage your care, he/she will also have up to date imnformation about the new trial drugs.
Yes, there is hope for you. There is always hope.
You do have a higher fibrosis stage than someone at Stage 2 or 3, but there are many, many cirrhotics on this forum who have either treated in the past or who are currently treating. You can still treat this disease, even at Stage 3 or 4. And you can be cured.
If you are depressed or you know depression is coming on, please talk with your doctor ASAP and get an urgent or emergent referral to a psychiatrist (if you do not already have a psychiatrist). The psychiatrist can evaluate you and prescribe appropriate medication to treat your depression. Please talk with your doctor soon.
In addition, this is a great forum and you will get a great deal of understanding and support from people on this forum
Best to you, and please, do let us know how you are doing.
You said you took Interferon for a month with no change in VL. That pretty much proves what Will stated in his post, "The usual cause of this in patatients is "insensitivity" to the drug "Interferon" ..."
I also agree with Will that it would be advisable to talk with your doctor about getting in to an interferon free trial with one of the new drugs. I don't know where you live, but if I were in your situation, I would want to be under the care of a Hepatologist who is affiliated with a major university affiliated medical center/transplant center. A Hepatologist will not only have the expertise to manage your care, he/she will also have up to date imnformation about the new trial drugs.
Yes, there is hope for you. There is always hope.
You do have a higher fibrosis stage than someone at Stage 2 or 3, but there are many, many cirrhotics on this forum who have either treated in the past or who are currently treating. You can still treat this disease, even at Stage 3 or 4. And you can be cured.
If you are depressed or you know depression is coming on, please talk with your doctor ASAP and get an urgent or emergent referral to a psychiatrist (if you do not already have a psychiatrist). The psychiatrist can evaluate you and prescribe appropriate medication to treat your depression. Please talk with your doctor soon.
In addition, this is a great forum and you will get a great deal of understanding and support from people on this forum
Best to you, and please, do let us know how you are doing.
I don't understand the Incivek Futility Rules and Treat Duration
doctors follow when they start with a lead in
~ any kind of lead in.
Where you UND the fourth
week you were on the Incivek?
Is that why
the doctor said you only have to treat 12 more weeks?
Sorry I am a bit confused I don't mean
to bum you out I am just trying
to reconstruct the sequence
of events
B e s t o f l u c k
the all orals will be out soon enough so you have to find a way to hang in there!
doctors follow when they start with a lead in
~ any kind of lead in.
Where you UND the fourth
week you were on the Incivek?
Is that why
the doctor said you only have to treat 12 more weeks?
Sorry I am a bit confused I don't mean
to bum you out I am just trying
to reconstruct the sequence
of events
B e s t o f l u c k
the all orals will be out soon enough so you have to find a way to hang in there!
No change in the viral load the first month with Inf & riba and then breakthrough after stopping the Incivek is a good indication that you have a low response to pegylated interferon. Even though the Incivek was able to keep the virus at undectectable levels once you stopped the Incivek the immune system did not work well in conjunction with the interferon to keep the virus suppressed, hence the breakthrough. With triple, all three drugs must work effectively in order sustain UND and eventual SVR.
Have you considered trying an antidepressant to help with the depression and anxiety? They work well for many people. It's going to take some time to get over the effects of the drugs and the disappointment of relapse so be kind to yourself and allow the healing process to run it's course.
Have you considered trying an antidepressant to help with the depression and anxiety? They work well for many people. It's going to take some time to get over the effects of the drugs and the disappointment of relapse so be kind to yourself and allow the healing process to run it's course.
Thanks for responding so quickly.
My Dr. started me on Interferon one month before the peg interferon and ribavirin to see if I could tolerate just the interferon, I did, but there was no change in the virus load. Then at month 2 started the peg interferon and ribavirin along with Incivick.
I was on all three for 3 more months. At the end of the 12 weeks of Incivick, the virus was undetectable and I was told that 12 weeks is the standard treatment time for Incivick. So came off of that and continued with peg interferon and ribavirin. I had one more month of undetectable virus load and then the next month it was back (first number) and retested a week later (second number).
I had very little problem with side effects from the peg interferon and ribavirin but the Incivick got worse (brain fog and depression) as the months progressed.
Any hope for me? I'm feeling like I'm not gonna make it 3 more years. It's not that I am feeling bad from liver failure or yellowing skin-I have neither, but I feel depression coming on quickly!
My Dr. started me on Interferon one month before the peg interferon and ribavirin to see if I could tolerate just the interferon, I did, but there was no change in the virus load. Then at month 2 started the peg interferon and ribavirin along with Incivick.
I was on all three for 3 more months. At the end of the 12 weeks of Incivick, the virus was undetectable and I was told that 12 weeks is the standard treatment time for Incivick. So came off of that and continued with peg interferon and ribavirin. I had one more month of undetectable virus load and then the next month it was back (first number) and retested a week later (second number).
I had very little problem with side effects from the peg interferon and ribavirin but the Incivick got worse (brain fog and depression) as the months progressed.
Any hope for me? I'm feeling like I'm not gonna make it 3 more years. It's not that I am feeling bad from liver failure or yellowing skin-I have neither, but I feel depression coming on quickly!
If the viral load was detectable while you were still doing therapy ,if I understand your post correctly ,then you had what is known as a 'breakthrough"
The usual cause of this in patatients is "insensitivity" to the drug "Interferon"
which is still needed to mop up and suppress viral stragglers so to speak.
There are many Interferon free drugs being experimented with right now,.and given the fact you have advanced fibrosis approaching chirrosis ,I would advise talking to your doctor about possibly you entering a trial that one of these new drugs are being used..
Best of luck and welcome...
Will
The usual cause of this in patatients is "insensitivity" to the drug "Interferon"
which is still needed to mop up and suppress viral stragglers so to speak.
There are many Interferon free drugs being experimented with right now,.and given the fact you have advanced fibrosis approaching chirrosis ,I would advise talking to your doctor about possibly you entering a trial that one of these new drugs are being used..
Best of luck and welcome...
Will
After total week 24 if there is a detectable viral load prescribing guidelines advise discontinuation of peg interferon and ribavirin. If I'm reading your post correctly you stopped treatment after 24 weeks. You indicated you had a viral load of 193 IU/mL 1 month after stopping the Incivek which is a viral breakthrough so it's not surprising the viral load has continued to rise because the interferon was unable to keep the virus suppressed.
If you are completely finished with treatment then you have relapsed and your best bet would be to wait for the next generation of drugs in trial phase now which should be available within 3 or so years.
Sorry this has happened but unfortunately not everyone is successful with treatment.
If you are completely finished with treatment then you have relapsed and your best bet would be to wait for the next generation of drugs in trial phase now which should be available within 3 or so years.
Sorry this has happened but unfortunately not everyone is successful with treatment.
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