Aa
Genotype 1b
Good evening everyone! Just got a call from my doctor and wanted to know how I was doing. I said fine just waiting on the results of the Genotyping and viral loads. He said, "didn't my office call you"? I said no. He told me I was genotype l b and my viral loads were high. (He didn't have them in front of him because he was at the airport). He said he wanted to send me to Philadelphia to a liver specialist. (I live in the boonies of Northeast PA). Has anyone worked with any of the doctors in Philly? And anyone having any luck with Geno lb? Have a great weekend! Finally sunny in the NE!
Just saw your question.
Yes, I give myself the shots.
They are very easy to do. preloaded syringes, very tiny needle.
I really don't feel it.
Yes, I give myself the shots.
They are very easy to do. preloaded syringes, very tiny needle.
I really don't feel it.
I forgot to mention that I also had a very thorough and all inclusive baseline pre-treatment eye exam by my optometrist. That is because the doctors want a baseline eye exam before the Ribavirin is started since Ribavirin can affect the eyes.
I was self-referred to the liver specialist and I think it took a couple of months from the time I called to the appointment time. A liver ultrasound was not done, but I did have a biopsy. I was offered tx but waited till the time was right for me. When I did decide to do tx, it all moved pretty fast for me because I was accepted into a clinical trial, so it was less than a month from the time I said yes to the day I started my meds.
Since I was in a double-blinded trial, I did not know much about how I was doing during tx. From what I've learned since that time, I know now that I had to have responded very quickly to the tx drugs. With Incivek, if you are UND at wks 4 and 12, you can do the 24 wks of tx, unless you have cirrhosis, in which case you do need the whole 48 wks. The rules for tx are very specific and if you want to know more, you can go to www.incivek.com, or look up some of the old posts on here which address futility rules and such.
In the trial I was told to eat foods with fat when I took the Incivek but was not told "20 gms of fat." I did have to change my eating patterns, from 3 meals a day to several smaller meals or snacks, to accommodate the medication doses. I did not gain or lose weight on tx.
Glad to answer any other questions you have. Right, no broken bones today!! Be careful out there : )
Since I was in a double-blinded trial, I did not know much about how I was doing during tx. From what I've learned since that time, I know now that I had to have responded very quickly to the tx drugs. With Incivek, if you are UND at wks 4 and 12, you can do the 24 wks of tx, unless you have cirrhosis, in which case you do need the whole 48 wks. The rules for tx are very specific and if you want to know more, you can go to www.incivek.com, or look up some of the old posts on here which address futility rules and such.
In the trial I was told to eat foods with fat when I took the Incivek but was not told "20 gms of fat." I did have to change my eating patterns, from 3 meals a day to several smaller meals or snacks, to accommodate the medication doses. I did not gain or lose weight on tx.
Glad to answer any other questions you have. Right, no broken bones today!! Be careful out there : )
I actually think my Dr. is moving pretty quickly on all of this. I guess my next step will be to go to Philly and meet specialist. I have to call my Dr. Monday and set up appt to go over everything. So hopefully within the next couple of weeks I can get into see a specialist.
Hi Pooh....I checked myself into rehab back in 2008 for alcoholism. At that time they of course checked liver enzymes and I would have thought they would have checked for Hepatitis. Especially in a live in facility. The liver enzymes were normal at the time, within range, so that is why i am thinking it was withing the last 2-3 yrs. Who knows...doesn't matter.
I didn't know the success rate was 75%! That is very encouraging. Thanks again.....I think i will go outside and do a few cartwheels. Hopefully I would end up in the ER with a broken arm or ankle!!
I didn't know the success rate was 75%! That is very encouraging. Thanks again.....I think i will go outside and do a few cartwheels. Hopefully I would end up in the ER with a broken arm or ankle!!
I am not Lapis but I can tell you the tests I had done:
Blood: Liver panel, Hep screen, chem. panel, hematology panel, thyroid tests, metabolic panel, Genotype
Liver Ultrasound (late July)
Liver Biopsy (Sept. 2)
I also had the following vaccines:
In March (before I was diagnosed) I received the pneumonia vac., tetanus-diptheria vac., herpes zoster (shingles) vac.
In July after I was diagnosed I received the Hep. A vac. I had already had a Hep. B vac. several years ago.
In Sept. I received the Flu vac.
I was diagnosed on July 6th.
I saw the specialist on August 24th (but I did see the nurse case manager on July 22nd).
I started the medications on September 26th.
The time lapse seemed like a long time but it actually gave me some time to get prepared for treatment (stock up on supplies and food, get a recliner, get a new mattress, get better educated about Hep. C., etc.).
I hope this helps.
Blood: Liver panel, Hep screen, chem. panel, hematology panel, thyroid tests, metabolic panel, Genotype
Liver Ultrasound (late July)
Liver Biopsy (Sept. 2)
I also had the following vaccines:
In March (before I was diagnosed) I received the pneumonia vac., tetanus-diptheria vac., herpes zoster (shingles) vac.
In July after I was diagnosed I received the Hep. A vac. I had already had a Hep. B vac. several years ago.
In Sept. I received the Flu vac.
I was diagnosed on July 6th.
I saw the specialist on August 24th (but I did see the nurse case manager on July 22nd).
I started the medications on September 26th.
The time lapse seemed like a long time but it actually gave me some time to get prepared for treatment (stock up on supplies and food, get a recliner, get a new mattress, get better educated about Hep. C., etc.).
I hope this helps.
It is great that your father is coming up to help you.
I may be way off base here, but I think you may have had Hep. C longer than 2 years because your ALT and AST are 263 and 233. I have had Hep. C for 30-35 years and my ALT is 80 and my AST is normal. However, the numbers do not always correspond with the number of years infected. People progress at different rates and other factors can affect the blood results.
You are correct that it realy doesn't matter how you got Hep. C but I think the doctors often assume drug use when no drug use occured. There are multiple ways you may have contracted Hep. C, many of which are often not discussed (IV drug use by sharing needles, cocaine use by sharing straws or dollar bills, receiving any blood products before about 1989 ... including Gamma Globulin, transfusions, etc.; sexual intercourse if any blood was exchanged; health care workers who were exposed to blood or received needle sticks; use of contaminated equipment by tattoo artists, dental personnel, etc.; sharing razors or toothbrushes or other household items that may be contaminated with blood and you knick yourself with the razor or your gums are bleeding and contaminated blood is on the toothbrush; and probably more ways). I don't remember the percentage but there are many, many people who have no idea how they contracted Hep. C.
The most important thing is that you have been diagnosed and will hopefully be receiving treatment after a few more tests are done. The success rate for Genotype 1 is now 75% with the triple med regimen.
I may be way off base here, but I think you may have had Hep. C longer than 2 years because your ALT and AST are 263 and 233. I have had Hep. C for 30-35 years and my ALT is 80 and my AST is normal. However, the numbers do not always correspond with the number of years infected. People progress at different rates and other factors can affect the blood results.
You are correct that it realy doesn't matter how you got Hep. C but I think the doctors often assume drug use when no drug use occured. There are multiple ways you may have contracted Hep. C, many of which are often not discussed (IV drug use by sharing needles, cocaine use by sharing straws or dollar bills, receiving any blood products before about 1989 ... including Gamma Globulin, transfusions, etc.; sexual intercourse if any blood was exchanged; health care workers who were exposed to blood or received needle sticks; use of contaminated equipment by tattoo artists, dental personnel, etc.; sharing razors or toothbrushes or other household items that may be contaminated with blood and you knick yourself with the razor or your gums are bleeding and contaminated blood is on the toothbrush; and probably more ways). I don't remember the percentage but there are many, many people who have no idea how they contracted Hep. C.
The most important thing is that you have been diagnosed and will hopefully be receiving treatment after a few more tests are done. The success rate for Genotype 1 is now 75% with the triple med regimen.
Hi Lapis! Thank you so much for commenting on my post. I am a little concerned about winter coming because Philly always seems to get slammed in the winter these days. Oh well I guess this should be the least of my worries huh?
How long did it take you to get into see the liver specialist? And what did they do ultrasound and biopsies? And then how long before you actually got on the medications? And only 24 weeks? I thought the treatment last 48 weeks. Well that sounds a lot better. Also what is this about eating fat with the medicine?
Congrats on being clear of the Hep C monster! That is extremely encouraging to me. Thanks again and have a great day!
How long did it take you to get into see the liver specialist? And what did they do ultrasound and biopsies? And then how long before you actually got on the medications? And only 24 weeks? I thought the treatment last 48 weeks. Well that sounds a lot better. Also what is this about eating fat with the medicine?
Congrats on being clear of the Hep C monster! That is extremely encouraging to me. Thanks again and have a great day!
Welcome. I also had Geno 1b. I did tx in 08-09 and have remained clear after 24 wks of tx on triple therapy with Incivek.
It's a really good idea to work with a liver specialist as you go through this phase of evaluation and then decide when to do tx. They will have a lot of experience in treating patients with Hep C, and hopefully that will translate into a better tx experience for you.
My liver specialist during tx was about an hour's drive away. I was able to drive myself there for all but one of the visits, and my visits were very frequent since I was in a clinical trial. The one time I could not drive was when my anemia was at its worst and I felt too dizzy to drive for an hour, so my husband drove me there.
My local doctor helped out by drawing additional labs during the time my hemoglobin was low, so I could keep an eye on the anemia without having to make the long drive every week.
This forum really helped me through my tx experience. Hang in there, keep asking your questions, and you will see that many many people have been cleared of the virus, and many more are clearing it now as I write this. I'm grateful for the research which has produced some new medicines to help folks with HCV, and more meds are being researched all the time. My diagnosis was a devastating experience for me, and now I can say that I don't have Hep C anymore. Good luck as you move forward.
It's a really good idea to work with a liver specialist as you go through this phase of evaluation and then decide when to do tx. They will have a lot of experience in treating patients with Hep C, and hopefully that will translate into a better tx experience for you.
My liver specialist during tx was about an hour's drive away. I was able to drive myself there for all but one of the visits, and my visits were very frequent since I was in a clinical trial. The one time I could not drive was when my anemia was at its worst and I felt too dizzy to drive for an hour, so my husband drove me there.
My local doctor helped out by drawing additional labs during the time my hemoglobin was low, so I could keep an eye on the anemia without having to make the long drive every week.
This forum really helped me through my tx experience. Hang in there, keep asking your questions, and you will see that many many people have been cleared of the virus, and many more are clearing it now as I write this. I'm grateful for the research which has produced some new medicines to help folks with HCV, and more meds are being researched all the time. My diagnosis was a devastating experience for me, and now I can say that I don't have Hep C anymore. Good luck as you move forward.
Hi Pooh....thank you so much for the comments! I am 49 and haven't been to a doctor in years. I finally went in just to get some blood work done and see where my cholesterol was at. ( I am a chef and was expecting the worst due to terrible habits of eating). And when it came back I was floored. My ALT was 263 and AST was 233. So he wanted to run another one just to make sure there wasn't any errors. Well the second batch came back even higher. So then Dr. wanted me to come in and see him. I knew this wasn't good. Thats when he asked me if I had ever shot up drugs back in the day. I said no why? He said you have Hep C but not reactive to A or B. He said we need to draw more blood for viral loads and genotyping. That is when I found out l b over the phone but don't know the exact number on the viral load.
So now i have been racking my brain trying to figure out how I was exposed. The only thing i can think of is a couple of years ago i was donating my time to a homeless shelter in food preparation. Some of the people were literally homeless and others were just down on their luck. I am extremely fortunate so I wanted to give back. And i became personally involved with these individuals trying to help them get back on track in their lives. I would try and help them get jobs, apts, etc. So there were hugs from time to time and I just wonder if I had a cut on my hand, they had a cut....yada yada yada. I don't know I guess it really doesn't matter.
Thank you for alll of your support and comments. I truly appreciate it and yes this forum is a "Godsend"! I wish you also the best of luck with your treatment.
Oh, i am single so my father is coming up to help me out with the drives to Philly. I am hoping that i can have my blood drawn here locally and maybe just take a monthly trip to Philly. That wouldn't be so bad. Besides Philly has great restaurants! (Gotta make the best out of a bad situation)! Have a great day
So now i have been racking my brain trying to figure out how I was exposed. The only thing i can think of is a couple of years ago i was donating my time to a homeless shelter in food preparation. Some of the people were literally homeless and others were just down on their luck. I am extremely fortunate so I wanted to give back. And i became personally involved with these individuals trying to help them get back on track in their lives. I would try and help them get jobs, apts, etc. So there were hugs from time to time and I just wonder if I had a cut on my hand, they had a cut....yada yada yada. I don't know I guess it really doesn't matter.
Thank you for alll of your support and comments. I truly appreciate it and yes this forum is a "Godsend"! I wish you also the best of luck with your treatment.
Oh, i am single so my father is coming up to help me out with the drives to Philly. I am hoping that i can have my blood drawn here locally and maybe just take a monthly trip to Philly. That wouldn't be so bad. Besides Philly has great restaurants! (Gotta make the best out of a bad situation)! Have a great day
You are not alone in your reaction. In July my doctor told me I had Hep C when I was in his office for a follow-up appt. on my routine blood work (high cholesterol and elevated ALT. I was stunned/shocked/sheechless. I went home and got on the internets and everything I read was apparently outdated and very bad news. I thought I would be dead in a year (because I knew I had had the virus for 30-35 years based on when I think I got infected ... either from a Gamma Globulin inj. or from a patient I was caring for). I so full of anxiety that I could hardly sleep for 1 week and a half. I started giving things away and shredding papers. I called and got information on grave stones. (I already had my burial plot, just needed the stone.) My appt. with the speicalist was not for 7 weeks. In the meantime, I got my viral load back (via a letter) and it was 14,000,000.
Finally I was able to talk with the GI nurse/case manager of the specialist I was going to see. I also found this site and more information on Incivek (which I had not found when I was first looking for inforamtion). More current information helped get me back to reality and helped me realize I was most likely not going to die this year.
I am also Genotype 1. I started treatment (Pegasys, Ribavirin, Incivek) 2 weeks ago and I am optimistic it will work for me.
You will give yourself the injections with a very tiny needle that you will not even feel.
One problem with living so far away from your doctor is that you may need to make weekly visits to his/her office and you will probably need weekly blood draws/tests. Depending on your side effects and if you have anyone to help you, the drives may be difficult. Maybe others here who have been on treatment longer and who live far away from their doctors have more experience with dealing with the drives.
This forum is a Godsend and everyone is very helpful. I wish you the best of luck with your treatment.
Finally I was able to talk with the GI nurse/case manager of the specialist I was going to see. I also found this site and more information on Incivek (which I had not found when I was first looking for inforamtion). More current information helped get me back to reality and helped me realize I was most likely not going to die this year.
I am also Genotype 1. I started treatment (Pegasys, Ribavirin, Incivek) 2 weeks ago and I am optimistic it will work for me.
You will give yourself the injections with a very tiny needle that you will not even feel.
One problem with living so far away from your doctor is that you may need to make weekly visits to his/her office and you will probably need weekly blood draws/tests. Depending on your side effects and if you have anyone to help you, the drives may be difficult. Maybe others here who have been on treatment longer and who live far away from their doctors have more experience with dealing with the drives.
This forum is a Godsend and everyone is very helpful. I wish you the best of luck with your treatment.
Thanks evangelin for the positive support. After screaming and crying last night like a two yr old I thought this was basically a death sentence. I thought 1b was one of the worst to treat. I will check out the drugs you mentioned. I have never heard of them. Thanks again!
Hi Marty...do you give yourself the shots? I live about 2 hrs from Philly and was wondering if I needed to move closer to Philly or could I just stay where I am at. Thanks
I am 1b also.
I am doing triple tx with incivek.
I took my 5th shot tonight.
Yesterday my lnp called and told me this virus was undetectable.
So far so good.
I am doing triple tx with incivek.
I took my 5th shot tonight.
Yesterday my lnp called and told me this virus was undetectable.
So far so good.
I can't help you with the Dr. but I can say that genotype 1 b has a decent chance of being iradicated with either Incivik or Victrelis. Both are used with Interferon and Ribavirin. Depending on your level of liver damage, the Dr. may tell you to wait a few years because even better meds are in the works that will cure in less time and eventually some won't need the interferon. You will have to wait to see where you are with your liver and then good decisions can be made.
Best wishes,
Ev
Best wishes,
Ev
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