Aa
Newby not treated
Recently diagnosed for Hep C.My doctor says based on your ethnic background he feels putting off tx. My question, is there anybody out there who's Doctor told them the same thing? Is there any special diet I should be on? Etc.....
Best Answer
I am (was) young, tall, skinny and Caucasian (no Italian jokes here you guys). I had a low VL of 568,000. I was geni 1a and b ( doesn't matter).
I pretty much double dosed my meds. Still at week 4excellent response until it flat lined and stayed the same. We a had no PIs...but we did what we had to do. Some of us got the extra benefit from extending tx, some didi not.
What I am trying to say is, it's a craps shoot. You have better drugs than we did - and still some of us had a hard time winning. Just listen to what your biopsy says and if you need to treat - do it hard and win.
You CAN.
I pretty much double dosed my meds. Still at week 4excellent response until it flat lined and stayed the same. We a had no PIs...but we did what we had to do. Some of us got the extra benefit from extending tx, some didi not.
What I am trying to say is, it's a craps shoot. You have better drugs than we did - and still some of us had a hard time winning. Just listen to what your biopsy says and if you need to treat - do it hard and win.
You CAN.
Rumor has it someone was looking for me :0)
Welcome. Sorry to hear this news. As we are all assuming you are geno 1, I hope my story will help. I found out I had Hep C in 2009. A total shock and very confusing and heartbreaking. I did not find this forum until 2011, when my doc suggested I wait for FDA approval of the new drugs. My race DOES play a factor in this, as we do have significantly lower results on just the SOC's. Now with the addition of the newer drugs, they are seeing better results for African Americans. Problem is......up until now, the percentages of African Americans being treated at all (for several reasons), was also lower, so the data by comparison, doesn't exist to tell the full story. However, you have some great info listed above, that you can share with your doc.
On triple, I have been somewhat of a guinea pig because of side effects and dose reductions. BUT, my doc says I am still doing much better than they expected. If I were you......I would get a second opinion. I think maybe your doc hasn't given you enough information. I wonder if he/she feels you will have a better chance with future drugs or what? Also, you may not want to be his/her first ethnic patient, since they have already expressed doubt. Wishing you all the best. Here is a link to one of my threads:
http://www.medhelp.org/posts/Hepatitis-C/UND-African-American/show/1619165
And, feel free to look at my journal too.
Bee
Ouchy. Gotta stop typing for now.
Welcome. Sorry to hear this news. As we are all assuming you are geno 1, I hope my story will help. I found out I had Hep C in 2009. A total shock and very confusing and heartbreaking. I did not find this forum until 2011, when my doc suggested I wait for FDA approval of the new drugs. My race DOES play a factor in this, as we do have significantly lower results on just the SOC's. Now with the addition of the newer drugs, they are seeing better results for African Americans. Problem is......up until now, the percentages of African Americans being treated at all (for several reasons), was also lower, so the data by comparison, doesn't exist to tell the full story. However, you have some great info listed above, that you can share with your doc.
On triple, I have been somewhat of a guinea pig because of side effects and dose reductions. BUT, my doc says I am still doing much better than they expected. If I were you......I would get a second opinion. I think maybe your doc hasn't given you enough information. I wonder if he/she feels you will have a better chance with future drugs or what? Also, you may not want to be his/her first ethnic patient, since they have already expressed doubt. Wishing you all the best. Here is a link to one of my threads:
http://www.medhelp.org/posts/Hepatitis-C/UND-African-American/show/1619165
And, feel free to look at my journal too.
Bee
Ouchy. Gotta stop typing for now.
You Go Girl
Thank, I have some of the same factors as you and I
plan to treat. You Go Girl.
Keep in touch...
Thank, I have some of the same factors as you and I
plan to treat. You Go Girl.
Keep in touch...
Sorry .You also asked about diet. For the most part unless you are chirrotic there are really no diet resrtictions ,other than abstaining from alcohol and trying to eat a well balanced diet and keeping weight as close to optimum as possible.
Will.
Will.
I am sorry to hear about your diagnosis. I just want to welcome you and let you know that this is a great forum for obtaining information and answers to questions as well as for support. There are many extrmely knowledgeable people on this forum who are more than willing to answer your questions and offer their experience, opinions, and support.
I agree with the statements above. Although my husband is Hispanic and has other factors not in his favor (Cirrhosis, age 59, male), he has chosen to treat three times thus far.
Advocate1955
Advocate1955
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What is my viral load (it doesn't matter in terms of how little or how much liver damage the Hep C virus is doing, but it's good to know as a starting point)?
What is my stage of liver damage (I don't know if you've had a liver biopsy or not)?
What are my treatment options (I am assuming if he treats you, he will recommend one of the new triple therapies with Interferon, Ribavirin, and either Incivek or Victrelis)?
What does your doctor feel your chances for SVR would be?
Would he recommend a baseline eye exam before treatment?
Would he recommend a dental exam and any necessary dental work before treatment?
Would he check your iron levels before treatment?
How often would he recommend lab work and follow up appointments during treatment?
How would he manage anemia, if you became anemic on treatment?
How will he manage any other side effects that might occur (e.g. rash, anxiety/depression, insomnia, nausea)?
Are there any other procedures or tests that you would need to complete before starting treatment?
Once you and your doctor decide to start treatment and on which therapy, how long will it take to get the medications approved and delivered and be trained by the nurse practitioner to do your injections so that you can get started?
I guess I would be interested in finding out how many patients the doctor currently has being treated for Hep C and who would be directly working with you (probably a nurse practitioner) and how many cases that person is currently monitoring?
These are just some basic questions that are good to know the answers to ahead of time.
Advocate1955