Aa
Aa
A
A
A
Close
254544 tn?1310775732

"Suppressive" Therapy, Shands at the Univ. of Florida

I was seen by the head of hepatobilliary disease at Shands at the University of Florida on 7/21/09.  The first thing he said was the fact that I relapsed after 72 weeks was devastating, I really think he was as disappointed as everyone else. I have done 2 rounds of treatment.  48 weeks from May, 2006 through April, 2007 and 72 weeks from December, 2007 through April, 2009.

I was told that I am not eligible for any trials and never will be because of my auto immune issues (rheumatoid arthritis and thyroid disease) and was given two options.  The first option was to just wait for Telapravir and Bocepravir to be approved by the FDA.  They are expecting this to happen in early 2011.

The second option, was to try something that he termed as “suppressive therapy”.  This would mean going back on full dose treatment and at the point that I clear the virus (he anticipates that I will respond and follow the same path as the first 2 times I treated) reducing both the Interferon and Ribavirin to half dose.  I would remain on half dose until Telapravir is approved and then toss that into the mix.  They may or may not stop and re-start the treatment before they initiate the Telapravir, they won’t be able to decide that until it’s time to start it.  The wording in the report from Shands specifically stated
==================================================================================
"... the HALT-C study showed no benefit of maintenance interferon which was looking at interferon for non-virologic endpoints.  However, a subgroup analysis from that study and others have suggested that patients who have viralsuppression have improved clinical outcomes (less HCC and decompensation)."
==================================================================================

I decided to go with the second option.  I do fully expect Blue Cross/Blue Shield to give me a hard time approving the meds so I probably won’t be able to get started for a couple of months.  In the mean time, while I’m waiting I have to get an endoscopy and a colonoscopy done.  I am a geno 1a, stage 4, with early cirrhosis.

Just like before, I have to go into this understanding  if my rheumatoid arthritis goes bezerk from the interferon I will have to come off the meds.  We are all pretty optimistic that I can get through this since I did so well during the second round of treatment.   The doc did also agree that is time to try to come of the Methotrexate for the arthritis and see if I can get by with just the Humira.    He also has absolutely no problem with me going back on Celebrex and using it long term.   The year that I took the Celebrex while on treatment was the most comfortable time I have had with respect to the rheumatoid arthritis.

So, yes, as insane as it sounds, I’m going to do it again.  I just don’t have the sit and wait personality, I always have the option to quit, I respond well to treatment (just can’t seem to make it stick), I tolerate treatment better than most, and I will do whatever it takes to avoid progressing to the point of winding up on a transplant list.

I know Willy50, LadyLauri and several others here can attest that the doctor I see at Shands is one of the best hepatologists in the US, and as my local GI puts it “he writes all the stuff that the other GI’s read”.  He stated with certainty and assertion that Telapravir will be my cure.

Mouse
19 Responses
Sort by: Helpful Oldest Newest
412873 tn?1329174455
My heart goes out to you.  You're a strong and determined woman and I wish you the very best and am praying for telaprevir to get released so that we have better ammunition.

All the best,

Isobella
Helpful - 0
Avatar universal
I wish you all the best! You are one tough cookie! Doing 72 weeks once was more than enough - can't imagine what you are going through.

Hugs,
Za
Helpful - 0
Avatar universal
Are you seeing Dr. David Nelson?  He was who I saw up there when I did my last clinical trial.  However, now that I'm in an HMO, I can't go see him because he's out of network and I can't afford to pay his fee out of pocket.  I like my insurance plan, I'm just bummed that I can see Dr. Nelson, you know?  The last time I saw him in Aug. 2008, he wanted me to come back in one year, Aug. 2009, but just absolutely can't afford it.  I realize that he's worth the fee, but unless I was to see him as a clinic patient, (i.e. in a trial), it's just not something that I'm able to do.  Anyhow, I can totally understand where you're coming from.  That's my reasoning for why I kept on treating all those times, to try and keep from developing cirrhosis.  None of the trials will accept me because I'm a Telaprevir failure, that's what they call me.  So, I guess I'll be waiting for another 1-1/2 years for the Boceprevir and then, hope and pray that my doctor here in Melbourne will convince the insurance company that it's in my best interest..., he said that he would definitely fight for it for me.

Susan400
Helpful - 0
Avatar universal
This seams like a reasonble approach you have already given your liver a break with last 2 treatments.I relapsed 3 times once from 72 weeks then treated with telapriver went neg 2 weeks treated 24 weeks negative 3 months post best wishes
Helpful - 0
Avatar universal
like the other poster said you are one tough lady. i don't think i could do 48 weeks yet alone 72 + 48. you will beat this, you definately deserve it.
best of luck and God bless
Helpful - 0
254544 tn?1310775732
Susan,

I do indeed see Doc Nelson.

Thanks for the well wishes everyone.

Mouse
Helpful - 0
Avatar universal
That is great news, Jackson! Encouraging for Floridamouse as well!
Helpful - 0
Avatar universal
It makes me hurt when reading about your relapse. I went thru 3 rounds of tx and know how bad it feels when it happens. I believe I would wait for Telapravir and spend the time waiting and getting/keeping my body/liver as healthy as possible, diet, exercise, etc..... as little stress as possible! On my third round I went for broke and got lucky! A big hug to ya for fighting!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Helpful - 0
96938 tn?1189799858
Personal experience and smart advice don't always lead to easy decsions but they tend to lead to good decisions.  Good luck with it.

Looking over your time line there are a few things I noticed.  I'm sure that it's all part of your decision making.  If you re-start in the fall it seems that you will be on tx for about 12 weeks of '09, 52 of of '10 and some part of '11.  Then, mix in the tpr for another 24 (presumably) and you are facing a long-*** haul.

Given your circumstances, I get your thinking and I'd probably do the same.  But, if you could just introduce the tvr several months sooner, that would be a well-earned break for you.  Did the doc hint or mention any opportunities to pursue a compassionate exemtion, or other,  to maybe get the tvr earlier?
Helpful - 0
Avatar universal
Hi there-
I applaud you on so many different levels.

Your perserverance and strength will surely get you through this. You've done your research, sought out a great doctor and made an informed and intelligent decision.

My very best to you...I'll be rooting for you.
Helpful - 0
223152 tn?1346978371
This seems to be a well thought out decision, but I am not sure I would come to the same conclusion.  How long have you been cirrhotic?  Are you still compensated?

http://webcasting.clinicaloptions.com/p41385522?session=1388873374

Please take the time to go through this Clinical Care Option presentation on fibrosis progression.    If you haven't registered, you will need to but it is free.  When you get to the beginning of the program you will probably have to scroll down to the very bottom of the page to accept the statement.  If you have a problem getting in, pm me.

Look particularly at slide 16 - "Survival Probability of HCV Patients with Cirrhosis"

If you are compensated there is a pretty good chance of remaining stable for 10 years;  However, once you have a major event -- acites, esophogal varices-- the survivial rates drop dramatically.  So to me, whether you are compensated or decompensated would be the decision making factor.

Like fl guy said, your option #2  would mean committing to an awfully long time on the treatment drugs.  You have already been on them 2 1/3 years.  With your auto immune problems it may be tough.  You are committing to almost 2 more years.  How are your teeth holding out?  What about neuropathy?  So many issues to worry about.  

I wish I remembered if you were compensated or not.  I support you in whatever you do.  I (not cirrhotic) am going to wait for the Telaprevir or Boceprevir party in 2011.  There will be a lot of us old salts treating right up at the top of the list.

my best, frijole
Helpful - 0
Avatar universal
Frijole, you are smart as always.
Helpful - 0
Avatar universal
...good point.

I think whatever you decide, Mouse, we are here to support you!
Helpful - 0
254544 tn?1310775732
thanks for the info.  I'll be checking it all out.   I seriously anticipate the insurance company giving me a hard way to go over all this so I'm not holding my breath.  Not to menation I have to get scoped at both ends before I start and I have to get established with another rheumy (mine decided to retire).

I had both ascites and encephalopathy back in 1985 during my acute onset of HCV (I was on chemo for Leukemia at the time so I had a bit of a violent reaction to the virus LOL).   As of right now, I am very well compensated and in the early stages of cirrhosis.  As far as  my teeth, I have 17 of them pulled while I was on tx this last time.   So I guess they didn't hold up to well between chemo and hcv tx LOL.  

Yeah I'm looking at a really long haul on this stuff, but at least it's half dose. most of the way.  And of course I can always stop or change my mind about starting to begin with.  I can't get tlpvr any earlier because the only way to do that right now if via a trial.  I'm not eligible for trials because of my auto immune issues.

Really interesting stuff, this "suppresive" therarpy, eh?

Mouse
Helpful - 0
223152 tn?1346978371
Wow.  You have a tough decision.  Every time I hear things (like your history) it makes me realize how little I know and reminds me I am no doctor.  You had acites and encephalopathy 24 years ago but apparently did not have cirrhosis.- or your liver healed after the acute phase.   Now you have cirrhosis but are compensated.  That is a good thing.  From what susan400 said, you are in very good hands.  Did you ask the doctor what he would do if it were him - or his mother - or his daughter?

Yes the suppression therapy is interesting, but I thought that low dose interferon did not do much to stall the progression of cirrhosis.  Again, there was a presentation of Clinical Care options that discussed that.  So many things to consider.  ISsit at all possible to find a new Rhematologist with experience in Hep C and the treatment?  Could your hepatologist recommend someone that he will work with?  I hate to see these other conditions get worse.  Still, it could be that we are hoping too much that the PIs are the magic elixir.

Frijole
Helpful - 0
Avatar universal
I would trust Dr. Nelson with all my heart.  He treated me (worked together with my treating Dr. for over 10 years).

It is a difficult treatment, but I understand you whole heartedly -- I was on almost continuos treatment for many years and I have only stage 2 fibrosis.

Good luck to you, Sweete,... and like you said ... you always can stop, but if it helps, it is somewhat easier on 1/2 dose on long-long treatment.

What kind of Blue Cross plan do you have? -- they treated me from 1995 and I did not have even a single refusal for medicine.

All the best
Helpful - 0
254544 tn?1310775732
Frijole,

I'm seeing a new Rheumy on Thursday.   This new guy was one the one that my GI actually recommended 2 years ago, but unfortunately he was not on my insurance plan at the time.   My insurance changed over to Blue Cross the beginning of this year and fortunately, this fella is now on my plan.   Yeah, I'm kind of relieved know that my GI think highly of this fella.

Oh and I didn't even have to ask Nelson what he would do.  He offered it me.  He just came out of the gate and said "If it were me..."   I guess the difference between this and what we all know as "maintenance" is that this includes Riba.  Yeah my acute phase of infection was pretty bad because I had no immune system from all the chemo they had me on.  I actually wound up in a coma for 11 days.

Tallahassee,

I have Blue Cross of Florida PPO.  They have been an absolute nightmare since they took over our plan the beginning of this year.  They actually tried to cut my treatment off at week 58 (I had to do 72) stating there was no proof in better eficacy beyond 48 weeks.  It got so bad Roche had to donate a month worth of meds to me.  (I was not eligible for drug assistance from Roche)

Mouse
Helpful - 0
Avatar universal
Yes,  I have the same: BCBS of FL, PPO... I guess they changed their policy... Sorry...
I used to have basically unlimited Infergen from 1998 (when this drug still was under "Investigation").

May be if Dr. write an appropriate justification: sort of either this drug or a liver transplant... may be they will re-consider and will stop harassing you with this issue...

All the best
Helpful - 0
223152 tn?1346978371
good advise from Tallahasse on the insurance (hi, Tallahassee).  I never do understand these insurance companies when the comparision is a transplant.  they need to get real.

If Dr Nelson led in with ....If it were me..... I think it would be enough for me to consider it seriously. Sounds like the way to go.  I do hate to see you lose the rest of your pearly whites, though.

frijole
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
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.
Can I get HIV from surfaces, like toilet seats?