Hi welcome to the forum
I would recommend you get an appointment with a hepatologist of at minimum a gastroenterologist familiar with treating hepatitis c and see what they say.
You should see either a specialist experienced in treating patients with the newest non-interferon based treatments or connect with Emory in Atlanta and they can help you to find an experienced doctor. You can then work with the doctor to come up with a plan to treat your hepatitis C infection.
Since you have only stage 1 liver disease, you can wait for better treatments that will be available later this year or next year that are more effective and have less side effects than the currents treatments.
I'm sorry i should have explained, i am seeing a gastro doc and he wants me to so Sovaldi + ribavirin + interferon for 12 weeks. I just wanted everyones opinion cause some have told me i shouldn't do interferon. Please tell me your opinions. Thanks
there are even better treatments coming out in November. You only have stage 1 disease (like me) why he ask you to do interferon? That's just my take. I'd get a second opinion. Oh, and I'm no expert nor am I a doctor. Genotype 1a or 1b?
Im not sure if its 1a or 1b. Whats the difference between the two?
I just called my nurse after talking to her earlier today. I since got my mail and there was alot paperwork from Humana, my medicare supplement. They approved me for Solvaldi and not pegasys or Ribapak. The nurse had told me earlier Olysio denied me. She just told me now doc is trying to get the ribavarin and interferon approved on appeal. I am not happy about having to do all three but my viral load is 17 million and it has been 5 yrs, since my only biopsy and it was F2. I would like to tx but also have fibromyalgia and disc problems so I hope the three drugs will be tolerable for me! I am 1A.
I just found my paperwork and im genotype 1a
These are the latest recommendations for medical professionals for HCV by
AASLD/IDSA/IAS–USA. HCV testing and linkage to care. Recommendations for testing, managing, and treating hepatitis C.
excerpt from the INTRODUCTION of the full report
(the Infectious Diseases Society of America (IDSA) and American Association for the Study of Liver Diseases (AASLD) have developed a web-based process for the rapid formulation and dissemination of evidence-based, expert-developed recommendations for hepatitis C management. The International Antiviral Society–USA (IAS–USA) provides the structure and assistance to sustain the process that represents the work of leading authorities in hepatitis C prevention, diagnosis, and treatment.
Accessed April 24, 2014. (always go back to see if anything has been updated before consulting with your doctor and/or considering treatment recommendations)
Step 1. When you go to the above link scroll down to the green box that starts with
Persons with current (active) HCV infection should receive education and interventions aimed at reducing progression of liver disease and preventing transmission of HCV.
continue reading below the box to get an idea of the recommendations for medical professionals for Chronic HCV patients
Also you can read this green box and the detailed text below
Evaluation by a practitioner who is prepared to provide comprehensive management, including consideration of antiviral therapy, is recommended for all persons with current (active) HCV infection.
Rating: Class IIa, level C
Step 2 Since you are Genotype 1 and have never been treated before. Scroll back up near the top and then click on the link on the left side that reads
INITIAL TREATMENT OF HCV INFECTION IN PATIENTS STARTING TREATMENT
Notice this text near the top of the page
"This section assumes that a decision to treat has been made and provides guidance regarding optimal treatment. In many instances, however, it may be advisable to delay treatment for some patients with documented early fibrosis stage (F 0-2), because waiting for future highly effective, pangenotypic, DAA combinations in IFN-free regimens may be prudent. Potential advantages of waiting to begin treatment will be provided in a future update to this guidance."
Now scroll down to the First green box
Recommended regimen for treatment-naive patients with HCV genotype 1 who are eligible to receive IFN.
Daily sofosbuvir (400 mg) and weight-based RBV (1000 mg [75 kg]) plus weekly PEG for 12 weeks is recommended for IFN-eligible persons with HCV genotype 1 infection, regardless of subtype.
Rating: Class I, Level A
This is what your doctor is recommending if you treat now
Second Green box
Recommended regimen for treatment-naive patients with HCV genotype 1 who are not eligible to receive IFN.
Daily sofosbuvir (400 mg) plus simeprevir (150 mg), with or without weight-based RBV (1000 mg [75 kg] for 12 weeks is recommended for IFN-ineligible patients with HCV genotype 1 infection, regardless of subtype.
Rating: Class I, Level B
Notice the text in the last paragraph below this treatment just before the next treatment box
This regimen should be considered only in those patients who require immediate treatment, because it is anticipated that safer and more effective IFN-free regimens will be available by 2015.
This is probably the reason your doctor is not recommending this treatment for you at this time.
"I'm genotype 1, Grade 2 , Stage 1 " Was this a biopsy test report or other? When was it done. If more than 6 to 12 months ago then you need to ask your doctor what their diagnosis of your current liver fibrous stage and grade is at this time and what criteria was used to make that diagnosis.
My non-medical opinion.
If you are still F0-F2 then you need to ask the doctor why they want you to treat with the treatment he's recommending now rather than waiting till 2015 to treat when newer drugs without Peg/Inf and possibly RBV will be available?. Is it because of other related conditions?
Hope you get the best treatment whether soon or next year to give you the best chance of achieving SVR without serious side effects.
Hi Jimmy, thanks for the info. I had a biopsy about 2 or 2 1/2 years ago so thats how i know the grade and stage. My doc now just did bloodwork a couple of weeks ago.
I was Stage 2 Grade 2 biopsy in 2012 up from Stage 2 Grade 1 in 2000 12 years earlier. In 2013 FibroSure. showed FS-FIBROSIS STAGE* (V2) F3 FS-ACTIVITY GRADE* (V2) A3 - Severe activity. my doctor opinion was I was F3/F4 and before treatment very early F4
After 20 to 30 years the rate of fibrosis can accelerate more rapidly for many who have had chronic HCV for that long.
Just posted a comment to another question a few minutes ago with a link
a link with more detailed information about Evaluation and Staging of Liver Fibrosis
Hopefully that blood work included one of the better indirect markers scores like the FibroSure test.
"My viral load two years ago was 350,000 and is the same as of two weeks ago..."
Your VL really doesn't tell the Stage & Grade of fibrosis. It could just be coincidence that are about the same as two years ago. It could have been 1.2M 18 months ago 200,000 one year ago 560,000 6 months ago and 1.5M 3 years ago. or something else..
VL at time of treatment over 800,000 has indicated greater chance of failing treatment with some of the meds used in the past.in some clinical trials if I remember correctly..
That scares me to think my stage and grade might be higher now. But i dont wanna do another biopsy, which my doc said i dont need one.. i have had hep c about 24 years and i know it can move faster the more years you have it.
Don't get scared it's only a possibility for some, many others are still F0-F2 even after 30+ years. And you may still be.
Even those with F3 early F4 have very good chances of SVR with the new meds and/or some liver improvement over time after treatment. Some with decompensated liver can achieve SVR or at least keep their liver working awhile longer by treating and waiting for a transplant if needed.
My personal non medical opinion is you shouldn't have another biopsy either. I would ask the doctor if they have a current diagnosis (professional opinion) of your current Stage & Grade of fibrosis. A good gastro doctor should have some idea just by a physical exam of your abdomen, symptoms and some blood test results.
Questions to ask your Gastro
If unknown their experienced in evaluating, treating patience with HCV, liver disease, Cirrhosis, and new treatments. They may not have a fellowship in hepatology but they they should be quite knowledgeable about it
As previously mentioned, be sure to ask about the pros and cons of treating now with Sovaldi + ribavirin + interferon for 12 weeks. What about Olysio & Sovaldi now? The pro and cons of waiting till next year for the new non PEG, non RBV treatments. If you are not satisfied get a second opinion.
I would also ask about what non evasive test(s) have or could be done recently, like a transient elastography (FibroScan) or at least a FibroSure blood test. Have you had an ultra scan, MRI CT?
In the mean time do you know the results of some or more of your recent blood tests like for AST, ALT, platelets, hgb, Albumin, Creatinne, BiIirubin, INR whether normal or not and other ones if abnormal?
AST to Platelet Ratio Index (APRI) Calculator
Fibrosis-4 (FIB-4) Calculator
The FIB-4 is an easy-to-use, quick, and inexpensive test that provides results immediately. Results are generated utilizing age, AST, ALT, and platelet count
Using a lower cutoff value of 1.45, a FIB-4 score 3.25 would have a 97% specificity and a positive predictive value of 65% for advanced fibrosis. In the patient cohort in which this formula was first validated, at least 70% patients had values 3.25. Authors argued that these individuals could potentially have avoided liver biopsy with an overall accuracy of 86%.
None of these markers are not a primary means to assess liver fibrosis
"None of these markers are not a primary means to assess liver fibrosis
"None of these markers have yet to evolve as standard of practice as the primary means to assess liver fibrosis."
Evaluation and Staging of Liver Fibrosis hepatitisc.uw.edu
I did ask my gastro did he have alot of experience with hep c patients and the new drugs. He assurred me he does and has had good success with patients SRV. I didnt ask he to explain in detail my blood work results, but he looked over them and said it all looked good, with the exception of my iron being low. Ive always had low iron every so often due to my heavy menstrual cycle. So he said his plan is for me to get my iron up. And when i start tx he was gonna keep a close watch on it in case it drops due to the ribervoron, i think thats the one he said. He said if it goes to low he would decrease the dosage and there could be a possibility of a blood transfusion. But thats a maybe.. i did research him and he seems to have a good reputation. Good reviews on him. I cant go anywhere else cause i dont have insurance so i go to a place called Mercy Center. They had doctors , dentist, and Specialist that come and see patients that doesnt have insurance or money to pay.. but they are awesome doctors there. I had to have a tumor removed in my saliva gland and i saw a ENT doc there .it was a 35,000 dollar surgery but it was done free. They all have their own offices but come to the clinic after their office closes to see patients. Anyway, what do you think about him saying my bloodwork looked good? Oh and he has a group of nurses at the clinic for his hep c patients and they work in conjunction with him and us. They have a certain amount of patients doing tx and then when they r finished they start another group. I thought i would start August but it will be around October. . Thank you Jimmy for talking to me. Please respond with ypur opinion on what he said about my bloodwork.
Thank you for providing more detailed information about your doctor and situation.
I can only assume what he meant about your blood work, that is he didn't see any indication of any immediate or near future concerns other than getting your iron up. Sounds like you have about the best medical care that's available for you in your current situation. My non professional personal opinion.
I'm not sure if you have a way to secure message your doctor.
My non medical suggestion is to follow the recommendations for those with chronic HCV as far as food, exercise, sleep and any condition specific instructions from your doctors.
At your next visit with your gastro or if another form of communication can be used is to ask.your doctor just a few questions.
1. What is your most recent diagnosis (professional opinion) of the grade and stage of my liver fibrosis based on recent tests and observations
2. Based on your assessment of my overall condition how strongly do you recommend this treatment in October as opposed to waiting up to a year for expected new non PEG & RBV treatments? pros and cons?
3. Do you have any other concerns not already mentioned or that I should be aware of?
(approval expected between Oct & Dec for some new ones) It will probably take time for those new drugs to become available for more and more patients who need them, like up to a few months or longer in 2015..
I really can't offer any opinion at this time as to whether you should treat in October or or wait.. . The final decision to accept treatment that is offered or to wait is ultimately yours to make.
My hope and prayers are with you.
I was supposed to leave earlier today to go camping at a music festival for the weekend but will have to wait till morning. btw if you click my name and look at my journals you can see my history, treatment and post as I wait for my expected SVR results at the end of Sept. It can be a little wordy and detailed. I try to keep important and some fluff updated there and easier to find than going through my posts and comments history.
"ask.your doctor just a few questions".
These questions are my suggestions to be considered, along with any other ones you may have or that have been suggested that you want to use..
Thanks jimmy. I really appreciate it.. i will be following you for your results..I pray good results ...i will also ask my doc those questions when i can and let you know what he said. Thank you
"'m genotype 1a, Grade 2 , Stage 1"
There is no urgency for you to treat having stage 1 or 2 liver disease when more effective and safer treatments will be available in the next few months. Hasn't anyone told you this?
The first step in the process is figuring out if you even need to treat when we know that treatments are only getting more effective and having less side effects. Your proposed treatment will soon be obsolete in November or December when Gilead's new one pill a day drug is available. Not only can you avoid all of the side effects from interferon and ribavirin but you may only need to treat for 8 weeks, the shortest treatment duration anyone has ever had. Even if we forget about all of the side effects from treatment you can treat for only 2 months and have a higher chances of cure.
How can anyone recommend a treatment that is know to have severe side effects when you can treat for less time with a treatment with minimal side effects?
SOVALDI + Peg-IFN alfa + RBV 12 weeks - SVR 92%
Ledipasvir/Sovaldi 8 weeks - 94% SVR (no interferon or ribavirin)
Is your doctor aware of the medical guidelines for the treatment of people with hepatitis C?
Has your doctor told you that there is no need to treat now and that most people with with your mild liver disease are waiting for newer more effective treatments?
Why treat with a treatment with many known side effects and have to inject yourself weekly for 12 weeks when you don't have to?
2. Why treat with peg-interferon when we already have a safer non-interferon treatment (Sovaldi/Olysio) now and there in the next few months that have better cure rates and less side effects?
What will you do if you can't work or perform your daily responsibilities because of side effects from the treatment?
Unfortunately your doctor appears to be unaware of the latest medical developments being made in the field of hepatitis C treatment.
I would suggest getting a second opinion from a doctor who is knowledgeable and experienced with the developments within this field so you don't have to suffer needlessly..
Here are warnings about the side effects of using peg-interferon based treatments incase you are not aware of them.
The most common, but less serious, side effects of PEGASYS (peg-interferon) include:
* flu-like symptoms
* tiredness and weakness
* stomach problems
* loss of appetite
* skin reactions
* hair thinning
* trouble sleeping
IMPORTANT SAFETY INFORMATION
PEGASYS, like other alpha interferons, may cause or worsen fatal or life threatening problems (like mental, immune system, heart, liver, lung, intestinal and infections). Your doctor should monitor you during regular visits. If you show signs or symptoms of these conditions, your doctor may stop your medication. In many patients, but not all, these conditions get better after they stop taking PEGASYS (see the Medication Guide for more information and Warnings).
Ribavirin, including COPEGUS®, can cause birth defects and/or death to an unborn baby. Female patients and the female partners of male patients should avoid getting pregnant. Ribavirin is known to cause anemia (low red blood cells), which can make heart disease worse (see the COPEGUS Medication Guide for more information and Warnings).
What is the most important information I should know about PEGASYS alone or in combination with ribavirin?
Ribavirin in combination with PEGASYS may cause birth defects or death of your unborn baby. Females must have pregnancy tests before, during and for 6 months after PEGASYS/ribavirin combination therapy. During treatment and for 6 months after treatment, female and male patients must:use 2 forms of birth control, one being a condom with spermicide
inform their healthcare provider if pregnancy occurs while taking PEGASYS/ribavirin or within 6 months after stopping PEGASYS/ribavirin therapy. Patients or their healthcare provider should contact the Ribavirin Pregnancy Registry by calling 1-800-593-2214
Mental health problems and suicide.
PEGASYS therapy may cause you to develop mood or behavioral problems, including:
irritability (getting upset easily)
depression (feeling low, feeling bad about yourself or feeling hopeless), and anxiety
former drug addicts may fall back into drug addiction or overdose
thoughts of hurting yourself or others, or suicide
Heart problems. Some people who take PEGASYS alone or in combination with ribavirin may get heart problems, including:
high blood pressure
fast heart rate or abnormal heart beat
Stroke or symptoms of a stroke. Symptoms may include weakness, loss of coordination, and numbness.
New or worsening autoimmune problems. Some people taking PEGASYS develop autoimmune problems (a condition where the body’s immune cells attack other cells or organs in the body), such as rheumatoid arthritis, lupus, and psoriasis.
Infections. Some people who take PEGASYS may get an infection. Symptoms may include:
burning and painful urination
coughing up yellow or pink mucus (phlegm)
PEGASYS alone or in combination with ribavirin can cause serious side effects. Some of these side effects may cause death. Tell your healthcare provider right away if you have any of these symptoms while taking PEGASYS.
Seems to me that Solvadi and Riba would do the trick. Or better yet S/O. Or wait a month for S/L.
Aren't there lawsuits going on over lasting damage from Interferon?
Why isn't the doc appealing for S/O? Or S/R instead of ribavarin and interferon approval on appeal.?
My max viral load at any given time was 15MM. That's when I had jaundice, etc. With your viral load it seems S/O would work.
I'd get a second opinion. Interferon is being pulled off the shelf. Those currently on it can finish tx but they aren't issuing it anymore.
Personally, I refuse to take riba and Iterferon is not suited for anyone much less those with low Iron anemia. It's a no no.
PS-so far as all the reports and info out there, women do well on S/O.
I agree, I have read that people with anxiety or panic attacks should not treat with interferon.
When I treated there was no choice, I was going in to cirrhosis, there was only interferon/riba.
There were trials for Incivek(VX950) but I could not get on it.
When there was no choice I had to do it. If I were not cured now and I needed to treat I would try for the latest tx I could get.
WOW! eight weeks! I had no idea. I think that is so good!
Hi there i would wait for the newer meds with less side effects because i agree people with panic attacks& anxiety depression should not treat with interferon.Wishing you all the best for whatever you decide to do. Jules