Scott, et al... Help!

[Better-Angels]

I need some help from those of you that have either extended treatment due to liver damage, or are on maintenance dosing to help reverse fibrosis.

My husband's PA is insisting that Greg end his treatment at 48 weeks. I want him to stay on 1/2 dose (Pegasys)to see if we can possibly reverse some of the damage, he is stage 3/4.

Scott, I know you've been extending treatment, does your Doc have any objective evidence to support the idea behind 1/2 dosing? That's apparently what the PA wants to see. Until I can provide something that he can "justify" this concept, Greg will be ending treatement May 7th.

For the record, Greg is 1B. He has been undectable since week 3. I'm very worried about his liver and I want to take every step possibe to ensure that we give his liver a fighting chance.

Please help me put something together that will assist us in convincing the PA that this is an appropriate, but more importantly an "acceptable" protocol to fight the fibrosis.

Thank you all,
Debbe

[Med Help]

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[Is_This_Real?]

that last link to the study as discussed at the EASL conference in Berlin was very very very interesting.

I was always discouraged by the 49 or 50% SVR rates (for genotype 1s) as quoted by the studies and drug companies.  I was certain that these quoted SVR rates had to be affected by the non-compliant individuals and the people with side effects so bad that they were forced to withdraw from treatment early.

However, the stuidies always simply reported total SVR rates (or the total number of individuals who STARTED treatment that eventually did acheive SVR) .... I always assumed (& hoped) that these low SVR rates were partially affected and reduced by those individuals who did not complete their treatment regimine as prescribed.  Although I had no proof or statistics to support my thoughts (until this report) I took this assumption of mine to heart and I told myself that I would complete the full course of treatment at the full doseage and I would have a better chance at SVR than 50% ..... or at least that was MY plan!

And now, this study which you posted above does verify my thoguhts.  In the study as quoted and linked above, it states that of 569 patients in the study, that the total overall SVR rate was only 49.2%.  HOWEVER, it further states that of these patients in the study, only 20% had 100% exposure to ribavirin.  (In other words, only 20% of the 569 patients took the full duration of both Pegasys and Ribavirin at 100% of the prescribed doseage .... only 20%, or only 1/5 of the patients).  That, to me, would appear to greatly reduce the value of the quoted SVR rates.  I mean seriously, if a person begins the treatment regimine, they do so with the belief that they will endure the treatment for 48 weeks and still only have a 50/50 chance of success.  So of course, with such a low expected prospect for success, if you do begin to experience any side effects that makes normal life difficult, you are going to 'cut back' or miss doses of treatment ... this results in a 'catch 22' situation wherein you go in with a low expectation for success and as such are not totally compliant, thus decreasing your success and decreasing the overall SVR rates.

Anyhow, to quit rambling, the study as linked by Scott shows that the overall SVR rate in the study (this study only dealt with genotype 1 patients) was only 49.2% ... but this was for all patients, including those who did not take the full course of treatment.  The study goes on to state that of those patients who were treated for greater than or equal to 80% of the recommended doseages and length treatment (in other words for those patients who took at least 80% of the prescribed doseages for at least 80% of teh prescribed time), the SVR rate was 61.9%.

So, Scott ...  thanks for linking that story.  It seems that if a genotype 1 takes at least 80% of his medicine for at least 80% of the time , his prognosis for success is much improved.  I often remember Indiana posting about the 80/80 rule, but never actually read a study to verify it!

Now I will draw a logical conclusion from these numbers ... if 80% of the meds for 80% of the 48 week duration results in a 61.9% SVR; then logically 100% of the meds for 100% of the time should result in even a better than a 61.9% chance for CURE.  So far, I have not missed a single shot or a single pill (took shot 14 yesterday) and hopefully I will not have to miss any medicine for the full 48 week duration!

[harley dude]

Scott if you don't mind me asking, what is your opion or knowledge on 2b's going 48 weeks when the liver has damage as high as Fibrosis stage 3- just would like your opinion on this-- Harley Dude

[twotells]

I was approved for SSDI after initially being turned down due to "duration" (the disability wasn't expected to last more than a year).  My Long Term Disability Insurance Carrier has a subsidiary which has lawyers to handle these cases at no cost to it's benificiaries (they have an interest in recovering the SSDI to offset their payments to the beneficiary).  I requested a hearing and testified about my condition.  In my case, my situation was complicated by a related illness, cryoglobulinemic vasculitis which caused peripheral neuropathy.  As the judge put it, I'm nearing "advancing age" (I'm 54, and never before thought of my age as "advancing"), which worked in my favor.

My impression was that most people get turned down for SSDI at the first level.  My lawyer told me that the applicant's manner and testimony at the hearing bear alot of weight at the hearing, and that seemed to be true in my case.  Some of my answers to the judge's questions were cited in her decision letter to me.  My judge was a stickler for the medical records to be complete and in a clear order, so I suggest you have your own records with you at the hearing in case the lawyer missed something.

I wish you the best,  Dave

[Better Angels]

Thank you Scott. You don't know this but you've come to my rescue many a times and I have been grateful more than you know.

I printed everything, packaged it up and off it goes in the mail tomorrow. I am so tired of fighting these battles... bone and soul tired. Being stage 3 makes it hard to have a moments peace. Greg is taking it better than I am, or maybe he's just pretending to.

I am a fan Scott, always have been and, always will be. I've been getting guidance from you since July of last year so I know your value and contributions to this board. Priceless...

Don't you let anyone denigrate you here. There is probably a lot more like me who just haven't come out of the shadows.

Be healthy Scott,
Debbe

[harley dude]

Thank's for the fast reply, I wonder if everything is looking good( your blood count, your sides aern't bad, you feel ok, I wonder if he would let me go longer than 48 or is that asking to much, or is it just to risky to go longer? I would go another month if he think's it would help my fibrosis reverse more, what is your opinion on this- Thank's again- Harley Dude ps- I won't bother you any more tonight, but can't promise a thing about tomorrow.

[oldhippiechick67]

I have found several articles about applying and getting approved for SSI SSD...with a lawyer you stand a much better chance of getting it.  Your stage 4/3 is certainly one of the criteria that has to be met.  They say you need lots of documentation of the misery/symptoms you are experiencing...here are some links:  

www2.rpa.net/~lrandall/disabled.html

http://www.janis7hepc.com   just scroll down the home page, there is a listing of the different topics, click on the one that says "insurance, financial aid, and free drug assistance"

I also have a file I can send you if you would like, my email is ***@****   Best of luck to you!

[secondtime]

Hi, I am new here... I completed a 48 week treatment in AUG., 2003... DID NOT CLEAR THE VIRUS... I had a biopsy which showed  stage 4 cirrohis @ grade 3. @ this time I felt I cd not go thru another year of treament - Dr. sd alternative wd be to go on maintenece dose, which i am currently on... I started @ 1/2 dose, blood tests after 4 weeks showed alt was in a good place in the sceme of things...Dr. put to 1/3 Dose which i am currently on... IT AINT EASY... BUT, it has to be done..I am geno type 1.   Also, I am currently on ltd frm my former employer but that ins. co. requests you apply for ssd.. which i have been turned down for @ this 2nd level, my dr. strongly suggests and states i will receive ssd but cd take awile.. i now have an attny - am waiting for a hearing date. does any one know the procedure.. i am nervous - especially on treatment.