Aa
mandamus
I am in prison and have numerous questions I am hoping someone can provide me with the answers to:
1. The forns index for determining fibrosis/cirrhosis is= 7.811 3.131 x In platelet + .781 x In GGT + 3.647 x In Age .014 x cholesterol. I comprehend the equations that have the plus and multiplication symbols, but I do not understand what the gap between 7.811 and 3.131 and In Age and .014 represents. Since I have to come up with "one" number what do the blanks represent?
2. Although my ALT and AST have never been "significantly" elevated, except during the few times I drank over the years, I still have developed significant fibrosis. My doctors keep on bringing up "Oh your liver enzymes are not very high" which, they are interpreting you are doing well. However, since it was determined in 2009 that I was stage 3 grade 3 (metavir scale), I don't hold a lot of faith in my liver enzymes. Moreover, I read in the AASLD's guidelines that some percentage of individuals who have normal ALT levels have sustained significant fibrosis. Anybody got anymore on that?
3. I also had hep B. It is resolved, however, I read somewhere that persons who have had hep B and get hep C that their disease progresses faster than otherwise. Any information on that?
4. My ferritin levels were, approx. a year ago 455. I know that 300 is the upper level of normal. My doctor was going to send me to a phlebotomist (spelled wrong maybe) but Bureau of Prison doctors in Central Headquarters shot it down. I have no idea if I have hemachromatosis (probably spelled wrong) but I don't think so. However, should it be treated and why?
5. I failed treatment with interferon and ribavirin. I also developed anemia and was close to going under 500 on my ANC. When the protease inhibitors came out I was put on Incivek, interferon and ribavirin. Although I was taking duel combination for 3 months before I started feeling bad; after my first shot of interferon it felt like I was hit by a bus. I concluded that I was having a drug to drug reaction between the effexor and interferon (EXTREME nausea). My doctor refused to listen to me and said "It's not the effexor" and I said, "it is the effexor". I discontinued the effexor. 95% of the nausea went away. However, I started getting seriously depressed. Rather than prescribing an antidepressant I could tolerate with interferon, they ended up discontinuing my meds. Needless to say I went off.
6. Now, the last doctor I saw said that he believes that the treatment would kill me because in 3-4 weeks my platelet count dropped from 225,000 to107,000 and significant drop in my white blood cell count (I don't know the numbers). My opinion is that I need to see a specialist. I don't know if there isn't some way that the platelet count and white blood count can't be rectified while on treatment. Moreover, since my doctor is not a specialist and the bureau of prisons does not employ a specialist (neither a hepatologist nor infectious disease specialist) I want to see one but they don't want to approve it. I am seeking some input on this. It's not that I necessarily question my doctors here, but they have provided me false information in the past and I don't know. It's not like I can go out and see one on my own, but I am thinking about filing a "mandamus" with the federal court in Washington, DC and asking them to order the doctors in Central Headquarters of the BOP to direct that I am seen by a specialist. Anyone have any information on filing such a mandamus?
7. I know there is a super protein on the horizon that wipes out Ebola hepatitis, and all viruses. What else is coming out on the hep c and what kind of time frames are we looking at.
I actually have more questions but these are the most pressing ones. Thanks!!!!
1. The forns index for determining fibrosis/cirrhosis is= 7.811 3.131 x In platelet + .781 x In GGT + 3.647 x In Age .014 x cholesterol. I comprehend the equations that have the plus and multiplication symbols, but I do not understand what the gap between 7.811 and 3.131 and In Age and .014 represents. Since I have to come up with "one" number what do the blanks represent?
2. Although my ALT and AST have never been "significantly" elevated, except during the few times I drank over the years, I still have developed significant fibrosis. My doctors keep on bringing up "Oh your liver enzymes are not very high" which, they are interpreting you are doing well. However, since it was determined in 2009 that I was stage 3 grade 3 (metavir scale), I don't hold a lot of faith in my liver enzymes. Moreover, I read in the AASLD's guidelines that some percentage of individuals who have normal ALT levels have sustained significant fibrosis. Anybody got anymore on that?
3. I also had hep B. It is resolved, however, I read somewhere that persons who have had hep B and get hep C that their disease progresses faster than otherwise. Any information on that?
4. My ferritin levels were, approx. a year ago 455. I know that 300 is the upper level of normal. My doctor was going to send me to a phlebotomist (spelled wrong maybe) but Bureau of Prison doctors in Central Headquarters shot it down. I have no idea if I have hemachromatosis (probably spelled wrong) but I don't think so. However, should it be treated and why?
5. I failed treatment with interferon and ribavirin. I also developed anemia and was close to going under 500 on my ANC. When the protease inhibitors came out I was put on Incivek, interferon and ribavirin. Although I was taking duel combination for 3 months before I started feeling bad; after my first shot of interferon it felt like I was hit by a bus. I concluded that I was having a drug to drug reaction between the effexor and interferon (EXTREME nausea). My doctor refused to listen to me and said "It's not the effexor" and I said, "it is the effexor". I discontinued the effexor. 95% of the nausea went away. However, I started getting seriously depressed. Rather than prescribing an antidepressant I could tolerate with interferon, they ended up discontinuing my meds. Needless to say I went off.
6. Now, the last doctor I saw said that he believes that the treatment would kill me because in 3-4 weeks my platelet count dropped from 225,000 to107,000 and significant drop in my white blood cell count (I don't know the numbers). My opinion is that I need to see a specialist. I don't know if there isn't some way that the platelet count and white blood count can't be rectified while on treatment. Moreover, since my doctor is not a specialist and the bureau of prisons does not employ a specialist (neither a hepatologist nor infectious disease specialist) I want to see one but they don't want to approve it. I am seeking some input on this. It's not that I necessarily question my doctors here, but they have provided me false information in the past and I don't know. It's not like I can go out and see one on my own, but I am thinking about filing a "mandamus" with the federal court in Washington, DC and asking them to order the doctors in Central Headquarters of the BOP to direct that I am seen by a specialist. Anyone have any information on filing such a mandamus?
7. I know there is a super protein on the horizon that wipes out Ebola hepatitis, and all viruses. What else is coming out on the hep c and what kind of time frames are we looking at.
I actually have more questions but these are the most pressing ones. Thanks!!!!
I can finally understand why you were so convinced it was the Effexor that made you so sick, but I hope you also understand why no one was believing this when you said it, because the Incivek (without any Effexor) made MANY of us unbelievably sick, just as sick as your description of your own sickness. I was put into a state of perpetual gagging and was unable to keep anything down, not even water, and certainly not my pills or the fat required with them. I was given an immediate Rx for Zofran, one of the very strong anti-nausea meds used with chemotherapy patients, and it worked well but only because it didn't require swallowing - it was simply dissolved on the tongue (and it was a challenge to keep it in my mouth even the minute required to dissolve it). I'm one of those people who rarely get nausea or vomiting, even stomach flu rarely affects my stomach and generally just hits my intestines instead, so I was really shocked at what severe nausea I had from Incivek. I'm very thankful for the Zofran, as I never could have completed treatment without it. I did complete it though, and I did achieve SVR!
I do think you should ask about the biopsy that was ordered, to remind them. It is usually recommended to have a new one every 3 to 5 years, and whether you are stage 3 or stage 4 can make a significant difference in your treatment because the virus is harder to eliminate at stage 4. I think it is because the increase in scar tissue in the liver provides the virus with more refuges where it can hide out and the drugs can't reach it as well because the blood flow is decreased in those areas. I don't know as much about the newer treatments, but with the current triple tx one has to treat longer if at stage 4. Stage 4 also raises the risks of increased severity of side effects, so it really is pretty important data to have. That said, not all doctors on the outside would agree, or care enough, to order another biopsy for you at this point, so if they don't want to do one you might have trouble arguing it, but it can't hurt to ask and remind them that it had been ordered.
You are in such a tough spot! I agree that it would be far easier to get your new life together if you didn't have to spend your first year out of prison trying to treat yourself for the HCV. If you are stage 3 or 4, it probably means you will feel awful a lot of the time and will need lots of support, and its not going to be conducive to building your self-suffiency back up again. To me, that year of treatment was almost like a year in prison, or at least like a year that was mostly not really living in a full sense. On the other hand, prison sounds like an exceptionally difficult place to get the treatment. On the outside many people receive sub-optimal treatment by doctors who are not as well-informed as they should be, but at least they can usually speak up, make demands, and change doctors if necessary. In prison it sounds like it is difficult to even know what they are giving you, much less control the what or when. Are you given access to your own medical test results in a timely fashion? If so, I would strongly recommend you acquire and keep copies of ALL the results and of any medical reports you can acquire as well. I wish you good luck!
I do think you should ask about the biopsy that was ordered, to remind them. It is usually recommended to have a new one every 3 to 5 years, and whether you are stage 3 or stage 4 can make a significant difference in your treatment because the virus is harder to eliminate at stage 4. I think it is because the increase in scar tissue in the liver provides the virus with more refuges where it can hide out and the drugs can't reach it as well because the blood flow is decreased in those areas. I don't know as much about the newer treatments, but with the current triple tx one has to treat longer if at stage 4. Stage 4 also raises the risks of increased severity of side effects, so it really is pretty important data to have. That said, not all doctors on the outside would agree, or care enough, to order another biopsy for you at this point, so if they don't want to do one you might have trouble arguing it, but it can't hurt to ask and remind them that it had been ordered.
You are in such a tough spot! I agree that it would be far easier to get your new life together if you didn't have to spend your first year out of prison trying to treat yourself for the HCV. If you are stage 3 or 4, it probably means you will feel awful a lot of the time and will need lots of support, and its not going to be conducive to building your self-suffiency back up again. To me, that year of treatment was almost like a year in prison, or at least like a year that was mostly not really living in a full sense. On the other hand, prison sounds like an exceptionally difficult place to get the treatment. On the outside many people receive sub-optimal treatment by doctors who are not as well-informed as they should be, but at least they can usually speak up, make demands, and change doctors if necessary. In prison it sounds like it is difficult to even know what they are giving you, much less control the what or when. Are you given access to your own medical test results in a timely fashion? If so, I would strongly recommend you acquire and keep copies of ALL the results and of any medical reports you can acquire as well. I wish you good luck!
How right you are, it's like Greek to me. I did send him all you said and I went to the page 5 you spoke of and was able to copy and paste to Word but when I was at his site and I copied, it would only like me paste the very last sentence. So strange that. So I told him about it and I guess if I need to type the whole page I will but he may already have this info. I'll need to wait till he lets me know one way or the other. As always thanks so much for taking the time to help us. I wish there was something I could do for you. If you can think of anything all you'll need to do is ask, T
I looked at the BOP eval and tx and it seems pretty extensive. It even says in there that tx with Incivek or Victrellis can not be reduced or stopped for any reason.
One thing I find funny is that it says if riba can not be taken then inf can. That doesn't seem right but maybe it is better than nothing? Not really sure.
I tried to find something about specialists and it just says that because Incivek and Vict are complicated a doctor with extensive knowledge needs to tx. I also see nothing about rescue drugs. It does talk about stopping drugs in platelets fall etc. Nothing about rescue drugs.
Did you ever get blood work that showed you UND?
One thing I find funny is that it says if riba can not be taken then inf can. That doesn't seem right but maybe it is better than nothing? Not really sure.
I tried to find something about specialists and it just says that because Incivek and Vict are complicated a doctor with extensive knowledge needs to tx. I also see nothing about rescue drugs. It does talk about stopping drugs in platelets fall etc. Nothing about rescue drugs.
Did you ever get blood work that showed you UND?
Hi T, I cut this from the post above from Idyllic, she had mentioned the web sit about the Bureau of Prisons sit for treating HCV, I am sure at one point you were getting so much information you could not see the forest for the trees :)
Ironically one of the most informative places that has great info about the diagnosis and treatment of Hepatitis C and Cirrhosis is called, "Federal Bureau of Prisons. Evaluation and Treatment of Hepatitis C and Cirrhosis."
http://www.bop.gov/news/PDFs/hepatitis_c.pdf
I mean it ranks up there with the info on the VA website.
As far as statistical indicators you might want to consider using the measures they mention they use in order to build any type of rational for what you want:
(This is step 5 from the site)
http://www.medhelp.org/user_photos/show/301398?personal_page_id=1282072
I knew it was the effexor because when I was on dual treatment, I accidently took my room mates effexor and it made me feel extremely bad. Then when I began triple therapy, the first shot of interferon, it made me feel exactly like I felt when I had previously taken my room mates effexor.
I don't want to confuse you on this issue. During dual therapy, I was taking a different antidepressant (wellbutrin). Didn't start feeling bad until about three months into the treatment, except for the one time I accident took the effexor.
When I began triple therapy, I immediately felt sick, exactly like I felt when I had previously taken my room mates. If the it had been the incivek, I would have suspected it would have taken more than acouple of hours to hit me like a train. Ultimately, as soon as I discontinued the effexor, all the nausea went away, or most of it...so I was ultimately right.
At this point he hit the send and hadn't finished so that's why he said the next sentence.
Opps, I accident emailed the last one before I completed it. Yes, I am allowed to send and receive emails via "corrlinks.com" . I have no access to the internet and I wish I did. I might never get off of this thing. :-). I am thinking the same thing that you are thinking. When I saw the physicians assistant the other day she said that they were trying to hold off treating anyone else because there are better medicines coming out. That sounds good, but when I brought up a specialist, she said, "oh you aren't going to see a specialist." Then went on to say that the doctor has a lot of experience treating patients with hep c.
I will have to figure out what I am going to do. I have not spoken to the doctor yet, but I plan to let him know my feelings. At the last place, they ordered another liver biopsy and said depending on the outcome that would decide if I would see a specialist. Now at this new prison I am at, I don't even know if they are aware another liver biopsy was ordered. Not that I even understand what this is supposed to accomplish except maybe showing I have cirrohosis, or not. I was stage 3 in 2009 so in my book, another liver biopsy is redundant and should not matter at all whether or not I see a specialist.
I do thank you for your words of wisdom. Keith
I don't want to confuse you on this issue. During dual therapy, I was taking a different antidepressant (wellbutrin). Didn't start feeling bad until about three months into the treatment, except for the one time I accident took the effexor.
When I began triple therapy, I immediately felt sick, exactly like I felt when I had previously taken my room mates. If the it had been the incivek, I would have suspected it would have taken more than acouple of hours to hit me like a train. Ultimately, as soon as I discontinued the effexor, all the nausea went away, or most of it...so I was ultimately right.
At this point he hit the send and hadn't finished so that's why he said the next sentence.
Opps, I accident emailed the last one before I completed it. Yes, I am allowed to send and receive emails via "corrlinks.com" . I have no access to the internet and I wish I did. I might never get off of this thing. :-). I am thinking the same thing that you are thinking. When I saw the physicians assistant the other day she said that they were trying to hold off treating anyone else because there are better medicines coming out. That sounds good, but when I brought up a specialist, she said, "oh you aren't going to see a specialist." Then went on to say that the doctor has a lot of experience treating patients with hep c.
I will have to figure out what I am going to do. I have not spoken to the doctor yet, but I plan to let him know my feelings. At the last place, they ordered another liver biopsy and said depending on the outcome that would decide if I would see a specialist. Now at this new prison I am at, I don't even know if they are aware another liver biopsy was ordered. Not that I even understand what this is supposed to accomplish except maybe showing I have cirrohosis, or not. I was stage 3 in 2009 so in my book, another liver biopsy is redundant and should not matter at all whether or not I see a specialist.
I do thank you for your words of wisdom. Keith
I'm not sure about that one. I know I sent him all of the data on one of those site mentioned. The one with all the new things coming out. Is this the one you're talking about, http://pi.vrtx.com/files/uspi_telaprevir.pdf if that is the one, I will do it now. However, you are correct, I may have already sent in this data. I have sent so many things, I've lost count as to which one. But if this is the one you're referring to, let me know and I'll do it now. He'll know if he's read it before. Thanks, now to mow the grass in the 100 degree heat. I really don't mind though, it kinda makes me think of it as a work out. The only thing is once I start, I wonder if I'll make it till the end. I do love the challenge, thanks, t
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