Aa
Aa
A
A
A
Close
5658923 tn?1372208376

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!!!!
112 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hi, folks,

It seems that the poster's original questions have been answered, so we'll close this lengthy thread now.  If there are new questions or developments, please don't hesitate to start a new thread.

________________________________________________

                ** CLOSED DISCUSSION**
            NO MORE COMMENTS PLEASE
________________________________________________
Helpful - 0
Avatar universal
  Thanks, klonny~  My Tx Dr gives us a Hep C lecture once a week, and mentioned Simeprevir also.
  I am amazed at the progress the medical field has made, with Hep C
Treatments!  And just in time...I can only imagine how many new cases would turn up, if Hep C testing was something mandatory we did, once a year, at our Physicals, especially for Baby Boomers
Helpful - 0
Avatar universal
Hi BG,

Yes there are lots of new things in the pipeline. I mention simeprevir mostly because it is likely, as is sofosbuvir, to be approved very soon, by the end of this year or the beginning of 2014. The bulk of the others are probably more like mid-2015 from what I gather. Of course we are talking FDA approval and what will be available to the HCV market at large. Those who can get into a trial have a shot at some of the others sooner.
Helpful - 0
Avatar universal
And here is some more imfo on the AbtVie meds, which are working on everybody: naive, relapsers, or null-responders, and works equally on all ethnicities (Interferon stats are lower for African-Americans, and to a lesser degree, Latinos)~

    "NORTH CHICAGO, Ill., May 6, 2013 /PRNewswire/ -- AbbVie (NYSE: ABBV) today announced that its investigational direct-acting antiviral (DAA) combination with and without ribavirin for the treatment of genotype 1 (GT1) hepatitis C virus (HCV) infection has been designated as a Breakthrough Therapy by the U.S. Food and Drug Administration (FDA).
The designation is based, in part, on positive data from AbbVie's clinical development program, including the Phase 2b clinical trial M11-652, known as "Aviator." The Aviator study was conducted in 571 patients infected with HCV GT1.  Results from the treatment arms evaluating ABT-450/r + ABT-267 + ABT-333 with and without ribavirin demonstrated that the regimen provided high sustained viral response rates (SVR) with 12 weeks of therapy in patients who had not been previously treated (treatment naive) and in those who had failed prior therapy with pegylated interferon and ribavirin (null responders).  
According to the FDA, Breakthrough Therapy designation is intended to expedite the development and review of drugs for serious or life-threatening conditions. The criteria for Breakthrough Therapy designation includes preliminary clinical evidence demonstrating a drug may have substantial improvement on at least one clinically significant endpoint compared to available therapy. A Breakthrough Therapy designation conveys all of the fast track program features, as well as more intensive FDA guidance on an efficient drug development program.(1)
"AbbVie is pleased that the FDA has granted Breakthrough Therapy designation to our 3-DAA combination with and without ribavirin. We feel it reflects the potential of this regimen to be important in the treatment of HCV," said John M. Leonard, M.D., senior vice president and chief scientific officer, AbbVie. "Our HCV program is one part of our advancing pipeline which is focused on delivering innovative therapies to address pressing areas of unmet clinical need."  
New results from Aviator were recently presented at the 2013 International Liver Congress® in Amsterdam. These results continued to demonstrate high SVR rates against GT1 HCV with the 12-week, triple-DAA regimen with ribavirin, across patient types. Specifically,
99 percent of treatment-naive patients (n=79) achieved SVR12, 96 percent achieved SVR24 in an intent-to-treat analysis
93 percent of prior null responders (n=45) achieved SVR12 and SVR24
A single relapse with this regimen occurred at post-treatment week two
Of the 247 patients treated for 12 and 24 weeks with triple DAA with ribavirin, four patients (1.6 percent) discontinued the study because of drug-related adverse events. Serious adverse events were noted in four patients (1.6 percent), with one (arthralgia) considered possibly drug-related. Other events reported in more than 10 percent of patients included headache, fatigue, nausea, insomnia, and diarrhea. Grade 3-4 laboratory abnormalities in total bilirubin (six patients) and ALT (one patient) were noted; all resolved with continued dosing.
AbbVie's all-oral, triple-DAA combination is currently being studied in Phase 3 clinical trials."
    Okay, enough "copy-pasta", hah...but as klonnymentioned,  it's not all about the Sofosbuvir,  this AbtVie regimen is on "fast-track", woot!
  P.S~  my Hubs says if Keith looks us up when he gets out, he will help him to find a job with one of his lawyer friends :D
Helpful - 0
Avatar universal
Well, there are SO many new meds "coming down the pipe-line" as my Dr says, and as we can see from one of the links posted above,which explains the various combos, etc.
  And @teirat, I do agree, if someone doesn't enjoy this thread, then they dont
need to read it.
  THis Forum can be rough, from an interpersonal perspective, but I have still learned tons of life-saving imfo, from some of the more "gruff" members, so please dont be scared off, by any misunderstandings or intended or unintended "slights".
  I'm sure Keith knows "the drill"..there is stigma associated with Prisoners, and with Hep C, and 33% of the Inmates in California do have Hep C.
   It is very important for us to educate people on Hep C, so we can hopefully completely eradicate it, by 2020.  That is why we need to go to "ground zero", a place where Hep C is still being spread (by people actively using, or people in prison, doing prison tattoos, etc), and get everybody cleared up, regardless~
  Anyhoo, please stick around, for your friends sake. The Clinical Trials may be his answer, as soon as he is released.
Helpful - 0
Avatar universal
Sofosbuvir is not the only game in town. There is also simeprevir which could be approved around the same time and has shown to be effective with genotype 1 treatment experienced patients.

http://www.internalmedicinenews.com/single-view/simeprevir-keeps-hcv-at-bay-in-treatment-naive-and-experienced-patients/1dfa9308fdd1aa236878b11cbb8281ac.html

Helpful - 0
Avatar universal
Not only has it been out there but is quite clear...

The important part........." and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection."
----------------------------------------------------------

FOSTER CITY, Calif.--April 8, 2013--BUSINESS WIRE--Gilead Sciences today announced that the company has submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for approval of sofosbuvir, a once-daily oral nucleotide analogue for the treatment of chronic hepatitis C virus (HCV) infection. The data submitted in this NDA support the use of sofosbuvir and ribavirin (RBV) as an all-oral therapy for patients with genotype 2 and 3 HCV infection, and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection.
Read more at http://www.drugs.com/nda/sofosbuvir_130409.html#F6mg1MjfVL0khd3A.99
Helpful - 0
Avatar universal
  WHY is Sofosbuvir only being used for Tx Naive, and I think I missed the
link to that imfo~that sounds disappointing for geno 1's indeed.
Helpful - 0
5658923 tn?1372208376
Hey there, this is from Keith, I just gotta say, I do love the stuffins out of cutting and pasting.

Actually Can-do I didn't take it as bashing either. Just for an FYI, I had received from my father the AASLD's clinical practice guidelines and their most recent up-date, for that time period, for treatment, management, etc. for hep C.  I knew that the SOP for dual treatment was 24 weeks.  Put yourself in my position.  If I tell my doctor to take me off treatment, then if I ask for future treatment, I could have been hit with, "denied for refusing prior treatment".  I mentioned it to him.  He called someone at some hospital somewhere and they decided that since my viral load had gotten so far down (around 5,000) to keep me on.

I don't think I realized that the sofosbuvir (spelled wrong) was only for patients that have never been treated before.  I can handle the interferon and ribavirin.  I didn't start getting anemic or have low ANC counts until later on in the treatment. Now whether or not, for example, sofosbuvir excerbates anemia or low anc counts I don't know, but it does't appear I could get it anyway if the treatment naive is set in stone. Thanks for all the information. Keith
Helpful - 0
5658923 tn?1372208376
Hello mzkity, how are you doing? I missed you and hoped nothing was wrong. Good to see your mzkity name. You know how I do love cats, take care and thanks again for everything, t
Helpful - 0
5658923 tn?1372208376
That for giving me another link to check out. I copied the page and sent it to him. Thanks for doing this for him, t
Helpful - 0
5658923 tn?1372208376
                                   Good Morning to All

I just copied everyone's posts and I'm very sure when he reads them his thinking will go into overdrive. I agree with Idyllic, I am very frustrated with the whole system. God knows I appreciate all of you folks who have spent time reading everything he's said and responded with kindness. I know it can be a lot when you have your own problems. So again, let me thank you all so much. As soon as I hear from him I know he'll be disappointed about the new drugs. One thing I can say about him is, he'll never give up and that's what he'll need to beat this.
Helpful - 0
317787 tn?1473358451
Keith I am really sorry to hear that the new drugs coming out will be for naive only.  I did not know.
Helpful - 0
317787 tn?1473358451
Thank you for your post, I did not realize that the new drug would be for naive only.  That is huge information. So the medical person who told him that the prison might wait for new drugs was wrong to think it would be soon
I think this thread has been very helpful

Helpful - 0
Avatar universal
Being that I was not able to offer much that was positive at the current time there is one thing I would suggest he could do. See if they will run the IL28b test on him. That seems to play and important factor with treatment. Knowing what his type is and how each type works with these new drugs that are in trials could give him a step up when retreating becomes possible... Doing some research on this and by following these trials would be time well spent.

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/61702
Helpful - 0
4670047 tn?1375730401
I just PM tiertat to make sure she paste/copies your post. I didn't see your post as bashing in anyway. I think it's the bottom line as far as his treatment in choices. I think all of you were so helpful to him. As it was in his original post, he was asking for advice on hep c. I think it got off course and might of got a little harsh. He's has good info now so maybe he can feel like he did what he could to get all his questions answered. Thanks to all!!    Kitty
Helpful - 0
766573 tn?1365166466
I completely agree. It frustrates me and even sort of angers me the Hepatitis C does not have the infrastructure that HIV and Cancer seems to have. When I see all the programs, support, opportunity and/or awareness that is more readily available for those two conditions it is so disheartening that Hepatitis C is so different.
Helpful - 0
Avatar universal
I completely agree with what you said about the drugs and the fact that he cannot treat before his release. That cannot happen, court case or not.
I appreciate how clearly you explained that because it is a dead end.

I am talking about looking back and considering the responsibility of the patient vs the responsibility of the practitioner...
Helpful - 0
Avatar universal
Cando darlin, you were not bashing anyone, that was a very good post and Idyllic's was spot on as well.
What bothered me was she blamed herself for her doctor's mistakes and it related to the very statement about how we need to be proactive.
I completely agree with that it is just that in many cases ppl are not able to be proactive and I don't think the responsibility is *all* on them.
Not to say that you meant that but there is the implication.
Helpful - 0
Avatar universal
Well I hope Keith doesn't think I was bashing him in any way, I just felt he needed some realistic answers, his options are very limited. And being these new drugs that might be approved for geno 1 are for naïve only the only difference between him and someone not in is current position is  clinical trials......
Helpful - 0
Avatar universal
I agree that it is important to be proactive and do the research and I commend both you, Idyllic and cando for being the kind of people who are able to do so. (I am sincere)
I am not really speaking about Keith here, but about a lot of people who become incapacitated by extra hepatic manifestations, or who are incarcerated or just very green.
Many people besides being conditioned to trust their doctors do not have the ability to do the necessary research . This is why we have a medical establishment...like teachers in the classroom who are supposed to know their stuff and have our best interests at heart. It doesn't always happen that way. Do we blame the patient? The student? How much responsibility is theirs and how much belongs to the medical est.?
Not everyone even *knows* they can, let alone *should* do their homework.
What I am saying is while you guys are correct, in a perfect world we will all be our own effective advocates but our world is not perfect.
I think his expectation was reasonable under the circumstances.
Helpful - 0
Avatar universal
After reading much of this thread I have to say I am confused. There seems to be no reason for one to even attempt current treatment as it just won't work, still being detected at week 24 makes that quite clear, as for the new drugs that are close to being approved they are not for you as it will be for treatment naïve geno 1, besides interferon will still be a part.

As for the all oral for geno type 1 we are looking at maybe 2 years as they are still in trials and it sounds like you will be out of prison at that time. I really don't see what even a biopsy at this time will do, best to wait when it's closer to being able to treat. By the time of your release it should be more clear on what will be the best combo for you being you know you are stage 3 or maybe 4 as both are at the current time harder to cure...... Wishing you the best.
Helpful - 0
5658923 tn?1372208376
This is from Keith,

Thank Ceanothus for me.  Actually, the Bureau of Prisons is getting a lot better at providing treatment.  The problem is, I just do not have a lot of confidence in them with all that has occurred to date.  In 2008 one told me after looking at my live enzymes, "Oh, your liver is in better condition today than it was 5 years ago. You have healed yourself," then refused to my first biopsy.  2 years late when one was finally ordered, I found out I was stage three.  Then when I got on duel treatment, they kept me on for 44 weeks even though at week 24 I was still detectable (viral load).  then this last time when I vehemently told him "its the effexor", then them taking me off without even speaking to me....It is a cluster f...well you know. :-).

Yes I will bring up the liver biopsy and see what they say. Since it was already approved, it should be a done deal. However, since these people haven't mentioned one iota about it, I wonder.

Thank you very much. If I had had access to zofran (maybe spelled wrong) it might have made a difference.  Thanks again!
Helpful - 0
5658923 tn?1372208376
Thank you for your thoughts. I just sent it to him and I'm so sorry you had to go thru this. I hope you are doing better. As soon as I hear back I'll let you know, t
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
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.