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Hi. So I'm getting really frustrated and need to vent...
I have hep C..I need to keep saying that because it still hasn't really sunk in yet. I had to explain it to my 11 year old the other day when he went to use my nail file. That wasn't fun to say the least, but I stayed strong and positive and have kept an open dialogue with him since.
I had my GI visits. The first one my doc ordered all these blood tests and ultra sounds then scheduled me to come back to discuss my results/treatment. When I went back, I was expecting to get my prescription and be on my way..not so much. She told me I need to get a psych evaluation due to a history of anxiety and a retinal exam..have them fax over the results...schedule another appointment so that she can order the meds.
I'm frustrated because I feel as if these people are wasting time. I can understand the retinal exam, but the psych eval..really? Of course I'm freaking depressed! I have this stupid virus and need to start harsh treatment to get rid of it. In the meantime, I have 1 more semester of nursing school to go before I get my license, a child and husband to take care of and hide my internal monologue of freak outs. I've worked too hard to get to where I am now to lose it to a stupid virus or stupid medications to clear said stupid virus. I was hoping to get some what accustomed to the side effects/ find ways to hide them from other people during my summer break before school starts back up. I'm afraid that I'm running out of time.
My first appointment she said that my chances are very high due to my age, race, gender, and very low viral load (three thousand something). My second she said that since I have genotype 1, theres a 50/50 chance that I'll even clear it. I told her I want to do it anyways and thats when she ordered all these eval's.
I had my psych eval yesterday and the shrink said she wants to see me every 2 weeks for monitoring and to see a therapist. She wouldn't give me a straight answer as to whether or not she would clear me, so I agreed. Come to find out my insurance will only cover 20 visits per year. The only way the insurance will give me more visits is if my husbands employer calls the broker or some ****...I don't want anyone to know I have this virus. The office is too dumb to understand how insurance works, and the shrink is very money oriented. FML! With all these appointments I have to go to and insurance bull to figure out I feel as though I have a huge tattoo across my forehead saying HEP C!!!!
On a positive note (I swear I'm usually not this negative), I got my retinal clearance today and watched the doc fax it to the GI doc.
Sooo now I wait...
I have hep C..I need to keep saying that because it still hasn't really sunk in yet. I had to explain it to my 11 year old the other day when he went to use my nail file. That wasn't fun to say the least, but I stayed strong and positive and have kept an open dialogue with him since.
I had my GI visits. The first one my doc ordered all these blood tests and ultra sounds then scheduled me to come back to discuss my results/treatment. When I went back, I was expecting to get my prescription and be on my way..not so much. She told me I need to get a psych evaluation due to a history of anxiety and a retinal exam..have them fax over the results...schedule another appointment so that she can order the meds.
I'm frustrated because I feel as if these people are wasting time. I can understand the retinal exam, but the psych eval..really? Of course I'm freaking depressed! I have this stupid virus and need to start harsh treatment to get rid of it. In the meantime, I have 1 more semester of nursing school to go before I get my license, a child and husband to take care of and hide my internal monologue of freak outs. I've worked too hard to get to where I am now to lose it to a stupid virus or stupid medications to clear said stupid virus. I was hoping to get some what accustomed to the side effects/ find ways to hide them from other people during my summer break before school starts back up. I'm afraid that I'm running out of time.
My first appointment she said that my chances are very high due to my age, race, gender, and very low viral load (three thousand something). My second she said that since I have genotype 1, theres a 50/50 chance that I'll even clear it. I told her I want to do it anyways and thats when she ordered all these eval's.
I had my psych eval yesterday and the shrink said she wants to see me every 2 weeks for monitoring and to see a therapist. She wouldn't give me a straight answer as to whether or not she would clear me, so I agreed. Come to find out my insurance will only cover 20 visits per year. The only way the insurance will give me more visits is if my husbands employer calls the broker or some ****...I don't want anyone to know I have this virus. The office is too dumb to understand how insurance works, and the shrink is very money oriented. FML! With all these appointments I have to go to and insurance bull to figure out I feel as though I have a huge tattoo across my forehead saying HEP C!!!!
On a positive note (I swear I'm usually not this negative), I got my retinal clearance today and watched the doc fax it to the GI doc.
Sooo now I wait...
"hopefully drugs that don't mimic a full-on chemotherapy assault like the current treatment does."
As bad as it was I don't think it's really anything like 'real' chemo for cancer - from what I"ve seen personally that seems like a whole big different shebang. Treatment certainly isn't fun and there can be after effects but from what I've seen of 'real' type chemo meds I'd say we were pretty lucky.
As bad as it was I don't think it's really anything like 'real' chemo for cancer - from what I"ve seen personally that seems like a whole big different shebang. Treatment certainly isn't fun and there can be after effects but from what I've seen of 'real' type chemo meds I'd say we were pretty lucky.
"hopefully drugs that don't mimic a full-on chemotherapy assault like the current treatment does."
That's a negative twist because not everyone experiences that type of reaction to treatment otherwise known as antiviral therapy. You seem to have experienced an abundance of post tx issues and that certainly doesn't apply to the majority.
Trinity
That's a negative twist because not everyone experiences that type of reaction to treatment otherwise known as antiviral therapy. You seem to have experienced an abundance of post tx issues and that certainly doesn't apply to the majority.
Trinity
How come no one's talking about the hemorrhoids? Didn't anyone else get the 'roid rage?
You can always be counted on to put a negative twist on a topic. You never let me down.
"I only know one other person with HCV and I'm advising them to wait up to 10 years if they safely can."
Do you think that might have something to do with your post TX issues?
I don't have any post treatment issues but I don't advise people to treat.
I advise them to find a good doctor and discuss the options.
I'm not smart enough to tell people what they should do.
By the way, there just might be risks associated with having HCV. It might not always be only about liver histology.
Mike
Do you think that might have something to do with your post TX issues?
I don't have any post treatment issues but I don't advise people to treat.
I advise them to find a good doctor and discuss the options.
I'm not smart enough to tell people what they should do.
By the way, there just might be risks associated with having HCV. It might not always be only about liver histology.
Mike
I think it's a natural reaction for most people to be shocked and horrified to discover that they have this invisible visitor in their bodies. I know for a fact that not everyone who has gone through treatment comes out unscathed. Most do, but not all. It's hard to take the risks seriously enough when all you can think of is "Get this out of me". Patience is the key and patience comes with the passage of time in this situation. You've had some very good advice here about assessing your present risks and waiting for less harsh treatment. Researchers are looking at treatments that specifically target the HCV virus and don't turn the whole immune system inside out; drugs that don't involve interferon or injections; hopefully drugs that don't mimic a full-on chemotherapy assault like the current treatment does. I only know one other person with HCV and I'm advising them to wait up to 10 years if they safely can.
I've really appreciated this thread, the way it pulls everything back from the "gotta treat right now" hysteria that we all get hung up in when we are diagnosed. Thanks for posting it.
I've really appreciated this thread, the way it pulls everything back from the "gotta treat right now" hysteria that we all get hung up in when we are diagnosed. Thanks for posting it.
You can certainly let it all out here. Lots have been through the same. Don't be too hasty with a knee-jerk response to kill this stupid virus and be done with it. Your best strategy may be to wait a little and make sure you have all the facts and are making the best decision for you. As has already been said, there are more promising treatment drugs about to be approved that offer much better odds for geno 1 patients.
As far as the psych evaluations, I believe that is standard procedure if there is any history of anxiety or depression.
Good luck to you,
Brent
As far as the psych evaluations, I believe that is standard procedure if there is any history of anxiety or depression.
Good luck to you,
Brent
Thank you guys for your wonderful posts. Its such a relief that others are/were where I am. I was feeling like I was about to go crazy. Thank you for all the advice. It means so much. I have quite a lot to think about and a big decision to make..to wait or not to wait... I don't know if I could continue to have this ugly virus monster inside me and not do anything about it. I also don't know if I could deal with failing my boards..Man!
I'm in nursing school also, and I gotta tell you....I'm so glad I had already finished my 48 weeks of tx by the time we studied HAART therapy for HIV patients. I'da freaked, lol!
As it was, I could totally relate to the sides I read about with that treatment (and I just did SOC,) Honestly for me, tx wasn't bad. Yes, I felt crappy alot. But I managed work and school and even took my entrance exam for nursing school during week 40 and did really well. (I was in a Telapravir trial for tx naives, but was randomized into the placebo arm and did 48 weeks of SOC.)
Your post really struck me because as soon as I finished tx, my daughter wanted to begin hers. I took her to my original hepatologist and to the hepatologist I treated under at the Mayo clinic and both docs strongly encouraged us to wait. The point was that as a Geno 1a, VL 400,000 biopsy 1/1...they felt it would be better for her to wait and tx for only 24 weeks as opposed to 48. While they acknowledged the possible added sx of the PI, their thoughts were that reducing the exposure to the meds by half and increasing the rate of success was worth the wait.
Like you, when I was first diagnosed, I had this nursing plan I had worked very hard for and was not about to let HCV get in my way. My docs initially wanted me to wait also
(I was 1/0) ...but I wasn't having any of it. I got into the first trial I could find. Emotionally, I could not have waited.
I just wanted to let you know that I can relate to where you are right now.
But to get back to the HAART therapy...I am betting that any one of those patients on that course of treatment would love to cut their treatment time in half-which is exactly what the new treatments are doing for us. Just a thought.
So many here have treated with them and can give you better insight to the realities of the sx...it's not always as awful as our textbooks say it can be. Just like SOC....some of us practically slide right through.
If you are absolutely certain you want to go ahead and tx now, I think the plan you have laid out is a good one. Get the PCRs at 4 weeks and 12 to determine how you are doing. It is the same plan my daughter was going to do when we initially planned on her doing the 48 weeks. Personally, I'd get a biopsy...it'd make me nuts not knowing the condition of my liver. (my ultrasound was "unremarkable" as well) And the second opinion Elaine mentioned above sounds good too =)
Good luck to you! Keep us posted.
Isobella
As it was, I could totally relate to the sides I read about with that treatment (and I just did SOC,) Honestly for me, tx wasn't bad. Yes, I felt crappy alot. But I managed work and school and even took my entrance exam for nursing school during week 40 and did really well. (I was in a Telapravir trial for tx naives, but was randomized into the placebo arm and did 48 weeks of SOC.)
Your post really struck me because as soon as I finished tx, my daughter wanted to begin hers. I took her to my original hepatologist and to the hepatologist I treated under at the Mayo clinic and both docs strongly encouraged us to wait. The point was that as a Geno 1a, VL 400,000 biopsy 1/1...they felt it would be better for her to wait and tx for only 24 weeks as opposed to 48. While they acknowledged the possible added sx of the PI, their thoughts were that reducing the exposure to the meds by half and increasing the rate of success was worth the wait.
Like you, when I was first diagnosed, I had this nursing plan I had worked very hard for and was not about to let HCV get in my way. My docs initially wanted me to wait also
(I was 1/0) ...but I wasn't having any of it. I got into the first trial I could find. Emotionally, I could not have waited.
I just wanted to let you know that I can relate to where you are right now.
But to get back to the HAART therapy...I am betting that any one of those patients on that course of treatment would love to cut their treatment time in half-which is exactly what the new treatments are doing for us. Just a thought.
So many here have treated with them and can give you better insight to the realities of the sx...it's not always as awful as our textbooks say it can be. Just like SOC....some of us practically slide right through.
If you are absolutely certain you want to go ahead and tx now, I think the plan you have laid out is a good one. Get the PCRs at 4 weeks and 12 to determine how you are doing. It is the same plan my daughter was going to do when we initially planned on her doing the 48 weeks. Personally, I'd get a biopsy...it'd make me nuts not knowing the condition of my liver. (my ultrasound was "unremarkable" as well) And the second opinion Elaine mentioned above sounds good too =)
Good luck to you! Keep us posted.
Isobella
I understand how frustrating it is to wait... it makes you feel like the whole world is working together to make you crazy or something. I'm getting ready to take my 5th shot tonight, and guess what... every week, after taking the shot, you're waiting for the next one.... counting down to number 48 is a slow countdown.
You say that you are hiding your freaking out from your husband and child... I think you'd be better off, and probably your husband too if you were to share with him what is going on inside your head. You aren't Wonder Woman... and a marriage is made stronger by sharing deep feelings. It sure would make life easier for you. I agree that you can't share your fear with your child... good choice there.
You said that you only have one semester to go to finish school. Then you have the state exams... you don't want to do that with the brain fog you will have from treatment... believe me! Thinking that you will be able to deal with the sx after the summer... some get better after a few months, but some get worse. I'm not having as much trouble from my shots as the first, but more weakness and brain fog. My brain fog caused me to make a $19,000.00 mistake at work that my husband and I have to figure out how to pay. It could make you fail your exams and have to retake them. Also, just the stress of finishing the course and the unknown to follow is going to be hard on you, why make it worse with treatment right now? The progression of the virus is very slow so if your results after the biopsy show little damage, if it were me... I'd wait a year.
You say that you are hiding your freaking out from your husband and child... I think you'd be better off, and probably your husband too if you were to share with him what is going on inside your head. You aren't Wonder Woman... and a marriage is made stronger by sharing deep feelings. It sure would make life easier for you. I agree that you can't share your fear with your child... good choice there.
You said that you only have one semester to go to finish school. Then you have the state exams... you don't want to do that with the brain fog you will have from treatment... believe me! Thinking that you will be able to deal with the sx after the summer... some get better after a few months, but some get worse. I'm not having as much trouble from my shots as the first, but more weakness and brain fog. My brain fog caused me to make a $19,000.00 mistake at work that my husband and I have to figure out how to pay. It could make you fail your exams and have to retake them. Also, just the stress of finishing the course and the unknown to follow is going to be hard on you, why make it worse with treatment right now? The progression of the virus is very slow so if your results after the biopsy show little damage, if it were me... I'd wait a year.
I wish you the very best, may-be get a second opinion?
Yes, 50/50 chance of clearing geno 1 with current SOC
With the newer PI's Boceprevir and Telaprevir your
chances may be greater .
Good luck to you,
Elaine
Yes, 50/50 chance of clearing geno 1 with current SOC
With the newer PI's Boceprevir and Telaprevir your
chances may be greater .
Good luck to you,
Elaine
No, she didn't say they were the same drugs, she said that they worked the same as the PI's used to treat HIV and that when added to the other two the side effects have been shown to be worse...due to the mechanism of action of the drug. She also said that everyone is different and responds differently to treatment.
These PIs (Telaprevir and Boceprevir) are new drugs that are in clinical trials right now. They aren't the PIs they are using to treat HIV. I just finished a phase 3 clinical trial with Boceprevir. They listed the potential side effects as:
LIKELY: anemia, diarrhea, nausea, vomiting, neutropenia;
LESS LIKELY: dysgusia (dysfunction of taste), headache;
RARE BUT SERIOUS: increased heart rate – seen in animals only, increased bleeding time – seen in animals only, increased ALT – seen in animals only, decreased fertility (males) – seen in male rats only.
I had the taste problem (although that was also the interferon/riba), anemia, and nausea.
I don't think your doc is up on the study info.
LIKELY: anemia, diarrhea, nausea, vomiting, neutropenia;
LESS LIKELY: dysgusia (dysfunction of taste), headache;
RARE BUT SERIOUS: increased heart rate – seen in animals only, increased bleeding time – seen in animals only, increased ALT – seen in animals only, decreased fertility (males) – seen in male rats only.
I had the taste problem (although that was also the interferon/riba), anemia, and nausea.
I don't think your doc is up on the study info.
Thank you for your response Trinity. I didn't mean to imply that it was supposed to happen to anyone except me. I'm sorry if you took it that way. I was venting and didn't mean it any other way other than this is not what I saw for my future.
So, as far as the PI's are concerned, my doc told me differently. I have learned through nursing classes the side effects and possible toxicities of all of these drugs..I asked her and she confirmed them. She said that she hopes I can clear it without having to add the PI's...again due to side effects. I'm hoping I won't need to add a PI, but if thats what it takes to get healthy I'll have no choice.
Again thanks for your response.
So, as far as the PI's are concerned, my doc told me differently. I have learned through nursing classes the side effects and possible toxicities of all of these drugs..I asked her and she confirmed them. She said that she hopes I can clear it without having to add the PI's...again due to side effects. I'm hoping I won't need to add a PI, but if thats what it takes to get healthy I'll have no choice.
Again thanks for your response.
"The new drug- protease inhibitor I would use only if treatment doesn't work. Those drugs are the same as the drugs used to treat HIV and the side effects are waaaay more severe"
That is not really true. There are many here who have treated with the PI's in trials and the side effects were no more debilitating than those who have treated with interferon and ribavirin only.
If you can wait for the PI's the likelihood of achieving a sustained virological response is much greater. For geno 1's the odds of SVR with the current standard of care are from 40-45 percent. Add the PI and the odds go to around 75-80 percent.
I did 72 wks of interferon and ribavirin and did not SVR and experienced extreme fatigue and Neutropenia so treating with the current standard of care doesn't mean your side effects aren't going to be waaaay bad. As your name implies, we hope they are not but no guarantees.
For the record, it wasn't supposed to happen to any of us and I promise you I've busted my a-s-s all my life.
Trinity
That is not really true. There are many here who have treated with the PI's in trials and the side effects were no more debilitating than those who have treated with interferon and ribavirin only.
If you can wait for the PI's the likelihood of achieving a sustained virological response is much greater. For geno 1's the odds of SVR with the current standard of care are from 40-45 percent. Add the PI and the odds go to around 75-80 percent.
I did 72 wks of interferon and ribavirin and did not SVR and experienced extreme fatigue and Neutropenia so treating with the current standard of care doesn't mean your side effects aren't going to be waaaay bad. As your name implies, we hope they are not but no guarantees.
For the record, it wasn't supposed to happen to any of us and I promise you I've busted my a-s-s all my life.
Trinity
Honestly you are having the same reaction that many of us had. My thoughts were JUST GET IT OUT OF ME. It sounds like your doc is on the ball. Good Luck
Hi. I'm seeing a hepatologist. She said there was no need for a liver biopsy at this point and that my results from the ultrasound were unremarkable. She did explain to me that new drugs were coming out and made that option available to me. I can't wait that long. I need to move on with my life and get rid of this. My own blood freaks me out. This wasn't supposed to happen to me... I want to be the one who cares for people, not the other way around. Whoa that sounds really snobby... I don't mean it like that... I've just worked so hard to get to where I am now.
The new drug- protease inhibitor I would use only if treatment doesn't work. Those drugs are the same as the drugs used to treat HIV and the side effects are waaaay more severe, especially when added to the interferon and ribaviron. The doc said that they would monitor my viral load during therapy and if it's not working, they would stop. I just want to get through this and move on.
Thank you for your response
The new drug- protease inhibitor I would use only if treatment doesn't work. Those drugs are the same as the drugs used to treat HIV and the side effects are waaaay more severe, especially when added to the interferon and ribaviron. The doc said that they would monitor my viral load during therapy and if it's not working, they would stop. I just want to get through this and move on.
Thank you for your response
Have you had a liver biopsy? Until you know the results of that, you really don't know if there's any hurry to treat or not.
There are two very promising new meds that are up for FDA approval and will likely be available by prescription in 2011. One or the other of these protease inhibitors (telaprevir or boceprevir) will be added to the current standard-of-care (SOC) drugs (interferon and ribaviron) and may reduce treatment time from 48 weeks to 24 weeks while raising the odds of clearance to 80%. You might want to consider waiting for them to become available before you begin treatment.
The reason your doctor ordered the psych eval is that these are drugs that can have a powerful psychological effect and cause depression and rage and all sorts of nasty stuff.
Are you seeing a hepatologist or gastroenterologist?
There are two very promising new meds that are up for FDA approval and will likely be available by prescription in 2011. One or the other of these protease inhibitors (telaprevir or boceprevir) will be added to the current standard-of-care (SOC) drugs (interferon and ribaviron) and may reduce treatment time from 48 weeks to 24 weeks while raising the odds of clearance to 80%. You might want to consider waiting for them to become available before you begin treatment.
The reason your doctor ordered the psych eval is that these are drugs that can have a powerful psychological effect and cause depression and rage and all sorts of nasty stuff.
Are you seeing a hepatologist or gastroenterologist?
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Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
