I seek boots on the ground help

[Gonna53]

I am a 58 yr. old male.  Diagnosed in 2004 genotype 1a stage 2 grade 2 at that time by biopsy. I am told by hepatologist I am between stage late 2 and 3 now. I also have pancreatitis. I also take ativan for anziety... oxycodone for back and neck pain and flomax for prostatitis all daily.  I do not smoke or drink.  I contracted the hep c in 1978.  I have not yet taken therapy.  I was scheduled to start the trio of meds this past August, I tried several anti depressants which I could not tolerate in preparation for treatment so I had to postpone treatment until Febuary.  Now I  find out I will likely lose my health coverage this Dec.  I feel like I am in quite a pickle.  I need someone to help me figure all of this out and to help me find my way thru.  I thankyou in advance.  This site is a Godsend.  

[orphanedhawk]

I don't have insurance and am going to start treatment soon. The medical center I go to has an assistance program in place called charity care. Its based on your income not assets.
They will pay for all my labs except for the viral load.
My doctor belongs to Sutter health and they too have a program in place which will cover my doctors fees.
I'll be getting my interferon from pegasys through the Access to Care program, phone: [phone]
And I've found how to get neupogen, a rescue drug for white blood cells, as well.
There are alternative ways to go but you have to ask for it. Even Quest labs will reduce a bill but only when you ask.
Feel free to ask me, I'll help when and if I can!
I agree with the others, in your situation, don't wait.
OH

[working dog]

i really don't know about the pancreatitis.....as far as ads go....i read enough here to feel more comfortable getting on one before tx....i never did anything like that before...first started with paxal...that ended in a week with blood poring out my nose from dehydration i think...also made me too sleepy...then i started zoloft..50 mil for 4 weeks then up to 100...now i do 150...i think it helps a lot...i know if you look it up theres a list in order of ads to take that are better to worse during tx.....i would try hard to get going asap like copyman said...everyday i would work on it....if your willing to make the phone calls and stay on top of everything including the rescue drugs you'll most likely get there.....keep asking questions here...theres some folks here that are really good at understanding hep c..things like do you have support at home....what do you do for work...and of course any health issues that need to be addressed...good luck....billy

[crossroadsec]

I echo the above. I tried paying fir cobra n ran outta $. Oklahoma has a good sliding scale Medicaid type program. Check it out in ur state. I went back to work n now keep both. I went to g4/s4 FAST. Finishing 12 week now.
They insisted I needed ads (antidepressants) and I refused. Still have the script but never filled it. They put me thru a psych eval.. Etc. I'm not saying I won't ever need it. But I tried one in 2009, the year before I was diagnosed n it made me a mess. I've got situational depression some days. Lol. Oh yeah. And I take .25 xanax to sleep, but you don't Have to take em. You know urself. Welcome to the group. It's been a God send for me. Karen :)

[toby47]

Way down on your list, but still an item to be handled-- the flomax would be a concern as it is a alpha blocker similiar to uroxatrol which is not to be taken with incivek. hope it all works out.

[coeric]

like curiouslady, i also know of a woman that was on interferon/riba and developed pancreatitis during treatment. she had to quit.

responses can be slow on the weekends here.  you could try posting a specific question that includes pancreatitis and treatment in the question and hopefully members that have had experience with pancreatitis will post.

hector - great point about the cobra.
blessings
eric

[HectorSF]

I forgot....
If you have no history of depression or other mental issues you can start treatment without an antidepressant. Of course there are some people with no previous history that do become depressed but it isn't as likely.

From your background info you should be fine.
----------------------------------------------------------------------------------
"Patients Who Are Not Candidates for Boceprevir- and Telaprevir-Based Therapy
Telaprevir and boceprevir are not appropriate options for a subset of patients with genotype 1 HCV. Some treatment-naive patients have a priori medical or psychiatric conditions that preclude even initial consideration of interferon.

In individuals for whom adverse events were serious and led to premature treatment discontinuation or for whom pegIFN or RBV is otherwise contraindicated, triple combination therapy with a backbone of pegIFN/RBV cannot be used (this may include individuals who have experienced severe depression, uncontrolled anemia, or autoimmune phenomena)."

Hector

[HectorSF]

You are in the right place. People on this forum will help you navigate your way through this crazy thing called hepatitis C.

"Now I  find out I will likely lose my health coverage this Dec."
You always have an opportunity to continue health insurance coverage once you have had it. So you should not lose coverage. You have the option of paying COBRA payments. Yes, I know that it is expensive compared to what you are paying now, but if you are not able to stop the virus, you have a chance of developing cirrhosis if you already haven't. Without insurance cirrhosis management and treatment will more difficult then you can imagine to deal with. YOU DON"T WANT TO BE IN THAT POSITION. I have been dealing with cirrhosis and its complications for 5 years now and spent at least $100,000-$200,000 and I still have a long way to go. In the next few year I will probably be a million dollar man. Either that or I won't be alive. Yes, cirrhosis of the liver can be fatal. It is nothing to take lightly if you value living. It appears you still have time to treat your hepatitis C. Focus your energy on curing yourself before you end up like me. Its no bed of roses I assure you.

I know you are new to all this but cirrhosis is a pre-existing condition that no insurance will want to insurance you for unless you have $100,000s to pay for it. DO NOT LET YOUR INSURANCE END pay for COBRA at least until you get a biopsy. You may never get insurance again unless less you go on Medcaid or Medicare. If I were you I would do it ASAP as others have said regarding other tests and treatment. A biopsy 7 years ago is way too long of time to rely on. Remember liver disease progresses more quickly after the age of 50.  

Get a referral to a gastroenterologist or hepatologist and have them do all the tests others have mentioned. Get your money's worth of insurance now that you have it.

As far as antidepressants there are so many these days you can surely find something to work for you. Also realize side effects are common when starting antidepressants and can fade away when your body gets used to them. If you feel worse over a period of weeks then obviously the med doesn't agree with you and you need to clear it from your system and try another. I one spend 9 months trying antidepressants before I found one that worked to me. No fun but at least I have one that works if I need it.

I hope this helps.
Hector

[curiouslady1]

Pancreatitis is an issue with everything.  That is an acute situation which needs to be managed first before anything else is considered.  A friend had a major attack shortly after starting the triple and had to be hospitalized.  They were close to removing him from the therapy.  Severe depression may also be a deal breaker with ifn. The value of the interferon free trials is that many have less side effects.  That was partly the point of studying them.  I am sorry if I gave a confusing message.  The trials don't take 3 to 5 years for you to get into.  They are available now or over the coming months.  However, there are risks.  But that is true also with the SOC.  I agree with the others and sure you agree too that time is of the essence and waiting for 3 - 5 is not a good idea.  

[coeric]

another test worth considering while you still have insurance is the il28b genotype.  it will give you an indication of how well the interferon will work. some feel this is unnecessary with the new approved drugs. but in your situation, with pancreatitis, it may give you hope for a shorter duration, 24 weeks, of triple therapy.

[Gonna53]

I have been reading about the trials......  I see the pancreatitis may be an issue as I have been having bouts with it allready.  I am glad I signed up here as I have already been helped with which way I might go and where to look.  I am going to fight hard to keep my health coverage.  If I fail,  I will discuss with my Doctor about  free meds and a referral for interferon free trials to counter the pancreatitis.  I am going to try to get more detailed info on exactly where my condition stands.  I need to intensify my efforts asap.  I will take this new anti depressant and hopefully I have the right one this time.  Know that I will likely ask for more advice as this all proceeds.  Gratefully I will share what develops for me.  I imagine I and others need this site.  

[coeric]

let us know how the new AD is working.  i imagine all the good doctors that are treating hcv are very busy right now.  it sounds like you have a good attitude concerning your doctor's case load.

[Gonna53]

curiouslady 1 thankyou for the site.... I see anything new is at least 3 to 5 years away.  To wait is a big gamble and I am sure none of the treatments could be worse than end stage.... I must say that I feel my Doc cares... she has a lot of patients.  This is a heavy load but I know my load is not the heaviest.  I....... get frustrated with this virus sometimes.  I am to try a new anti depressant this week.  She does not want to treat me unless I am on a anti-depressant first.  I have a decision to make and some thinking to do.  I will fight this virus.  I will find a way thru.  Thanks to you and be blessed.

[coeric]

opps, brain fog strikes again.  add 10 years to the dates above.
eric

[coeric]

i think copyman has good advice.  i probably waited to long to treat.  in 1997 i was diagnosed with cirrhosis and read about telaprevir.  at that time the president of Vertex and Dr. McHutchison, who was involved in the trials, were saying telaprevir would be fda approved in 1999.  like a dummy i waited.  i probably should have at lease tried peg/riba combo in 1997.  
eric

[curiouslady1]

Maybe difficult.  Maybe not.  I had many maladies and still got in.  Just check out the criteria on clinicaltrials.gov Here is one for interferon unable/intolerant for example NCT 01278134 Again, something to discuss with your doctor.  I think you have to be referred; not sure.  

[coeric]

with stage 3 there is bridging fibrosis.  then there is stage 4, cirrhosis, where nodules form and the liver's synthetic abilities slow down.  also at stage 4, portal hypertension causes the spleen to swell and fill with platelets, causing the circulating platelets to decrease. platelets are often used as an indication of cirrhosis in the absence of a biopsy.  my main concern about stage 3 is that you can progress rapidly to cirrhosis, especially at your age.  this is why i would want to repeat the biopsy.  if you are stage 2 you may have wiggle room and can perhaps wait, with your doctor's approval. i know what you are saying about busy doctors, that do not have time to answer questions. if you are uncomfortable with your doctor, it might be helpful to speak with another.  the depression piece is a tough one though.  i would want to be under the care of a psychiatrist that is communicating with my treating physician.  

[Gonna53]

Copyman.... Thankyou.  That is something I could meet the requirement for.  I will give it a shot if I cannot salvage my health care.  I would not be reluctant to enter some of the interferron free clinical trials but I imagine those are hard to get into.  However if I must I will take my chances with the interferon plus the other 2 meds ....  but everyone... doc included says it will do a number on me and I may have to take for 2 years maybe.  Thanks again..... Be Well    

[curiouslady1]

There are no interferon-free drugs on the horizon; at least not for a predicted 3to5 years.  Here is the web site for the trials but it is something to really discuss with your doctor and with an understanding that some conditions may exclude you from consideration.  Still SOC is not without risks.  Pick your poison. http://hcvadvocate.org/hepatitis/hepC/HCVDrugs.html#IFfree

[Gonna53]

Thanks for your reply Eric.  No,  I have had no new biopsy since 2004.  I have had an eus, mri, ultrasound in last 6 months.  I think I am progressing slowly inspite all the other meds I am taking.  Says she will really monitor my pancreas and anziety once I start treatment.  She says however that I could be cirhottic in 3 to 5 years with no treatment. Says I must treat this year.  Sometimes I suspect she just wants to treat me - another notch on her gun so to speak.  That is probably just me worrying yet  my doc always seems hurried and getting detailed info is sometimes hard.  I wonder if there are new interferon minus treatments on the horizon.  I am 0 for 5 on anti-depressants and I am reluctant to try a new one.  I would not want to start treatment and not be able to finish.  How bad is somewhere between stage 2 and 3?  I will try interferon if I must but hope to have a chance at dodging it.  Thanks Eric.... for your help with this. Oh,  can treatment be taken without the anti depressants?

[copyman]

I would start treatment ASAP.

Sorry to hear about your insurance. I would apply to the treatment drug companies for assistance. If you qualify you can get all the drugs for free. I think the requirement is your income has to be under $50k a year.

I don't think another biopsy is necessary. It don't matter if you are a stage 2 or 3.

[coeric]

did the hepatologist determine the stage 2 to 3 from a recent biopsy? i would want to repeat the biopsy.  are you currently experiencing pancreatitis?  the problem with the fda approved therapy is that in rare instances interferon can cause pancreatitis.  i hope that you are under the care of a skilled hepatologist. there are many treating here that do not have insurance, hopefully they can give you some guidance.
blessings
eric