New to this Forum, Finally a Happy Place!

[Roger McGuinn]

A quick introduction is in order!  At this point, I am waiting for papers from my new Heptologists office, with the paperwork necessary to begin my quest for these drugs.  I received my rejections, very quickly, even by Health Insurance standards, (ten days, perhaps a record) but, now I can get to work to obtain the drugs necessary to feel better, finally.  Any suggestions would be helpful!  Words of wisdom, absolutely!  Its been so long since I was even on one of these  Hep C  forums, because it was way too depressing, and not afresh statement could be made anymore; we had heard them all!  And the positive statements weren't exactly making a landslide appearance either!  So after being away from Janus, and a couple other sites for at least 6 years, I bumped into this one, and so glad the I had.  It's so upbeat, its so nice to hear about such wonderful successes, story after story.  And to be able to laugh, and almost cry on hearing that somebody had a runny nose, and a bit of a rash.  And I new that anyone who had already dealt with and failed Interferon, and Ribavirin, or not; still understood so well the contradiction of what a hellish time it was then, as compared to this hopeful and happy time, for so many more. 

So, you tough bunch of brave people; if you have any advice, I would appreciate it!   Thanks for being here to spread the word of hope and joy to so many of us!   We have dealt so long feeling fatigued (how do you explain fatigue to somebody?), had such a lack of desire, ambition, or just not always given a damn anymore !  None of these undesirable traits are all too attractive to someone that hasn't been in that position!   Good luck, and all my love and hope to everyone!

[Mike]

Welcome Mr. McGuinn,

Looks like you're on the way to a cure - slaying the dragon as it were.

It would be helpful to know a little more about your condition: geneotype, viral load, past treatment, extent of liver damage (if present), length of infection and so forth.

Unlike the old days, current treatments are tailored to the geneotype and so forth, making this information important in identifying the best treatments options for you.

Best wishes, Mike

[Roger McGuinn]

Thanks for your interest!  Things have certainly changed haven't they?  My situation is like this: I was diagnosed in 2003, and went on Peg-interferon, and Ribavirin for 48 weeks.  Two weeks later, it was back!  Genotype 1 a, last viral load, 400,000 or so!  It was never much over a Million!  Stage 2/4 several years back.  My doctor feels at this point we are into early stage cirrhosis!  I feel like crap every day, and its getting worse!  Maybe its a bit psychological too!  After a while, its not as easy to fight and do the right things for yourself.  I have taken milk thistle for many year, and for the last year, have been grinding my own seeds, and taking about 1000 to 1200 mg. per day.

My doctor wants me to begin treatment asap, a makes me feel like one way or another, I should be able to get the Sovaldi, and Olysio, at a doable price, or less!

I probably contacted the virus in a six year period! (1969-70)  That's about all I got right now, my friend!  Thanks for the interest!

McGuinn

[Anette]

 Hey, when the day comes when you start your medication, you will notice the change only after a few days I believe and hope. This has been true for me. I am on my 29th day today and get new answers on friday this week. From the bloodtest i meen. I have now virus 2430 thousend and i must beat that!

[lporterrn]

Hi Roger,
Meshell93 just asked the same thing. I'll cut and paste my post, but I just thought of one more thing - Take the sun exposures very seriously - stay out of the sun completely if you can.

Here is the post:

Oh my goodness, you are going for it! Good for you. I have a jillion suggestions and have written 2 books on the subject (you can read a lot for free on Amazon). Here are two for now:
1) Keep posting here - lots of great support, ideas, and info
2) Check all your drugs, supplements, and OTC meds for possible interactions: http://www.hep-druginteractions.org/

If you are like me, there may be a bit of fear and giddiness. This is normal. May you breeze through to a cure.

[lporterrn]

Roger - perhaps this will be helpful: http://blogs.hepmag.com/lucindakporter/2014/06/hepatitis_c_treatmen_1.html

[Mike]

Hi McGuinn,

I started 48 weeks of PEG+RIBV in 2001 (and I failed to clear the virus at week 36 and tx was ended). That was the most miserable period in my life and it took almost a year for the side effects to wear off.

Fast forward 13 years: I just completed 12 weeks of SOL(Solvaldi)+INTF+RIBV. I cleared the virus at week 2 of treatment and was clear at week 4 & 12. I just had my 12 week post treatment blood work, and achieved a SVR12 (undectecable virus 12 weeks after completing tx). With SOL+INTF+RIBV, this means I'm cured and my medical records have been updated to reflect this status.

I had a pretty complicated clinical picture (previous failed tx, VL of 9 million, diabetic, GT 1a, moderate fibrosis, mild hemochromatosis and male).

Solvaldi is a real game changer and an amazing drug. Sure, there were side effects - but 12 weeks is a breeze compared to what both you and I went through in previous treatments.

I hear Solvaldi+Olysio (S/O) has less side effects then SOL+INTF+RIBV.

Make sure, however, that you review your clinical picture with your doctor and compare it with the research.

With me, S/O combination reduced my chances of a cure (SVR) by 10-15%, which help me decide to go with SOL+INTF+RIBV.

Regardless, there is real hope now for a cure! ♪♫♫♪

Best wishes, Mike

[jberlin]

Welcome Roger!  As you went through the dual therapy, this time will be a breeze!  In 2004 it took me 24 weeks of dual therapy to go UD, completed the 48 weeks, and my doc made me wait six months to find out I relapsed.  It was at that point he said he was not surprised, as my chances were less than 40%.  I wanted to kill him, and went to a specialist for my next treatment (Incivek triple therapy, 24 weeks) in 2012, now cured.  You need to peep us posted and go get cured! 

Sidebar - Mike, that was the 1st time I had heard you got your 3 month post treatment bloodwork results.  Congrats man!  Welcome to the cured club!  Roger will join us soon!  -jack

[Mike]

Thanks, Jack! Was a long struggle; but I finally slayed the dragon!

Can't wait for Mr. McGuinn to join the club in a few months!

Best wishes, Mike

[iana5252]

Hi Roger,

Here's a page with information on Patient Assistance and Co-Pay Programs for Viral Hepatitis Drugs (http://www.hepmag.com/articles/hepatitis_paps_copays_20506.shtml). There are various options from getting the drugs completely covered by pharma to getting their help on the co-pays.

You are right to keep looking for a path to get the drugs as many folks have posted here that with some persistence they were able to secure the drugs in an affordable way.

Good luck with your quest and please keep us posted so others can learn from your experience.

- Ian

[yag1064]

Hi Rodger,
    Welcome. Things have certainly become brighter because of the recent new meds. Everyone including myself can be free of this virus. I was diagnosed in 2007. Failed the treatment of the day after going through it for sixteen weeks. Today is my last day of meds. I'm done and undetectable. Before these treatments the best you could do was live with it as best you can.
    So I hope that there will be more forums like this filled with uplifting views. And maybe someday these forums wouldn't need to be here anymore.

Best Wishes
   
   yag1064

[willie g]

EIGHT TH DAY,NOW YESTERDAY I WAS SAYING HOW GREAT I FELT. WELL UNFORTUNATELY TODAY WASN'T GOOO EVEN THOUGH I DID GET SLEEP.  MAY E BECAUSE ONE HOUR HERE ONE HOJR TBERE FINALLY CAUGHT UP.SO THAT WAS A POSITIVE BUT THE REST WAS FLU LIKE,ITCHING AGAIN,HEADACHE,NO PAIN INrtSIDE BUT LIKE OLD DAYS IT FELT LIKE I WAS LAYING ON A GULF BALL. (Four!) Just a crazy opposite day.OH WELL WE WILL SEE WHAT DAY 9 brings.  HEY ROGER WELCOME. I TOO TAKE MILK THISTLE.I HAD A CLIENT WHO HAD HEP B AND I HAD TO GIVE HIM THAT SO I GOT ON THE WAGON BECAUSE ME AND MY BOYS WERE ALWAYS JOKING ABOUT HOW WE HAD BRUISED OUR LIVER FROM THE NIGHT BEFORE,RIDING AND CONSUMING WHATEVER.I STOPPED TAKING IT SOMEWHERE DOWN THE LINE BUT DUE TO MY #real#BRUSIED LIVER I STARTED AGAIN.  LATER WILLIE G