Sofosbuvir FDA Approval

[ChrisDDD]

My question is whether anyone else saw an actual TV commercial on prime time saying the words Hepatitis C and talking about there being options now on how to treat, and that we (HepC patients) may want to reconsider treating again with the new drugs, particularly Sofosbuvir.  I almost fell off the couch!  The ad was by Gilead, the company that makes Sofosbuvir.  I want to thank all of you dragon slayers who go through the clinical trials, myself included, can't get well and just keep fighting for the right drugs to cure us.

I'm genotype 1b, infected in 1976 (tattoo), diagnosed in 1992, failed all three treatment attempts since 1995.  I now have cirrhosis.  I have an excellent doctor who wants to wait for some reason and treat me this fall.  He's the head of the Liver Center at Beth Israel Deaconess in Boston.  I see him next month.  I'm having an ultrasound at Beth Israel and then a consult with him about treatment.  I'm glad to hear these drugs aren't as difficult as that nasty Interferon and Ribavirin.

Anyway, I wanted to tell everyone I saw that commercial and I hope these drugs work for all of us.  I get very emotional because I can't believe I'm ever going to get well.  I now have a 19-month-old grandson I'm afraid I'll never get to see grow up.  I'm trying to ignore my urine getting darker and pains in my back as I stress over the fact that my mother and her father both died of kidney failure.  I have so much going against me now (health-wise) I feel pretty hopeless at times.

I'll end with this. I saw my doctor in Boston (two hours south of where I live) in December and when he mentioned treatment in September I told him about the friends I travel to Europe with in September, and he said to go on the trip and I'll get treatment when I get back.  I'm too scared.  If I can start treatment next month, why not start now?  I haven't been on any treatment for 9 years, no biopsy.  I just don't want to take a silly trip and come home and my liver decompensates.

Well, this got way longer than planned.  Good luck to all of you and I'm cheering for you here, hoping I'll be joining you in the fight in the very near future.  Your comments are very helpful.  Take care.

Chris

[kiteboarder]

  Hi So happy for you. I am new to the world of hep c and I just found out about 2 weeks ago when a doctor said do you know you have hep c . I said no but that I will check passed blood test that I keeped and see what it says. But where they typed it on the blood test it showed but in a like red strip on the paper that was not inline with the other 2 hep types, where hep 3 was it was blank there. so I looked at the previous test that I collected, it goes back to 2009 and it was positive on them .But the docs never really got my attention as to even what it was and that I would have a problem . Anyways I am glad to hear that the meds have been good for the your condition and that ins covered it for such expensive drugs. For it covering do you have any advice as to what level of insurance that I should carrie ? I make about $3000.00 a month. should I buy the most expensive or was your insurance a moderate cost so to say 500.00 to 1000.00 a month. Being a newbie to this I am now scared beyond believe. That I carry to cheap of ins. by mistake and they don't want to carrie me because of it. I know I am possibly imposing on you and your ins. is really none of my business, but im kinda in shock. And hope you will answer me.Thank you Elmoswife

[hepcandme]

how do you diet for the melon belly? I always assumed that was ascites and that you couldn't really get rid of the fluid build up unless it was enough to warrant parecentithis?
I am not overweight by any means but the poochy belly *****

[ChrisDDD]

Hi.  This is coming a little late as far as answering, but it is good to remember (for me anyway) it can take up to a year to feel normal again.  I'm seeing my hepatologist a week from today.  Fasting ultrasound, then walk across the street to discuss treatment.  I don't know why I'm so stressed out about this.  I'm just afraid to get my hopes up again and then there won't be any options left, but that's true of many people and many diseases.

I can only watch and try not to react to physical changes I'm seeing and feeling.  I think that's why I'm stressing.  Two of my toenails have turned black.  They look like I dropped an anvil on them, and I don't remember hitting them.  It does hurt, though.  I'm back to dieting for the "melon belly".  I got rid of it before, but it does make me nervous.  I'm feeling chilled lately, like it just washes over me.  My poor liver.  I really hope this works.  Good luck to everyone.  Post soon.

[ChrisDDD]

Thumbs up to that!

[colorpal]

Thanks Can-do-Man!

Waiting until July..  May not be so bad, as long as I am a good gal and do not tax the liver to cause any more problems... He said I was in good enough shape to wait.. I am 150% confident in my doctor.

According to the office more "good news" is expected in August,
So, if it is the news I am waiting for.. There also are quite a few preliminary tests that need done first.. So, then August looks good to me!

Thanks for the caring Nan..it is appreciated..

Sorry for the late reply, but keeping busy keeps the mind from dwelling

Colorpal

[nan535]

Thanks, can-do- man.  Glad to hear she is in good hands.  Her doctor must know her liver can wait for the right treatment.

Nan

[somuchmore2]

Yes I saw the add on CBS channel and then later in week on ABC.

North Carolina RDU

[can-do-man]

Nan colorpal is in very good hands, besides there is a huge difference between Ones NEXT appointment and getting into see a doctor.

[nan535]

Just read your post above and wondering if there isn't another hepatologist in the same practice you can see before July.  That seems like an awfully long time to wait for an appt.  You could be half way through treatment by then.

Just wondering...you may have very good reasons for waiting.

All the best to you
Nan

[colorpal]

I have seen the commercial in general about more of us having HCV and that we should seek the test.. But, within it have heard no mention of a particular drug.. I live just outside of Chicago... seems odd and I have my local CBS, NBC etc.. thru Direct..

I missed an opening for a clinical by about 2 hours... My Dr is in Indianapolis and is good. Recommended by friends on this forum. Until I joined, I had no Hepatologist.. Next appt is July.. So as I read all the posts above, I can only hope!! I am Geno 1b naive. My prayer is that he knows what is best for me. 3 pills / 2 pills, I don't care.. Interferon & Riba is not to his liking... for me..

Wishing all in tx the best outcome.. SVR and to remain that way...

[dolpher]

Get another Dr.s opinion.        And request all your test results and
  other material from your present Dr. Doesn't seem right to wait.

[elmoswife]

The pharmacist mentioned that she had learned that an even better treatment was coming out later in the year, but hepatologist is retiring this summer and I want to get this over with. The only expected side effects are photosensitivity and minor headaches.

[elmoswife]

I didn't mention that I went thru interferon and ribavarin treatment in 2009. My viral load went to 0 at 12-18 weeks, but came back up a few months after treatment stopped. Except for my bones being a little thinner, I've been in good shape. All liver tests have been normal. I did not tolerate the first treatment well. Became very anemic and had to start using an inhaler because of shortness of breath, and I had a cough that tore me up. All has been good since, but I keep the inhaler because I am bothered by smoke (especially cigars) and some other unpleasant, strong odors. I understand that inhanced sense of smell can be a result of chemical treatments. The Solvaldi and olysio are what I've been waiting for. Apparently, They were both designed to be used with the interferon/ribavarin as a third drug, but it was found they they work extremely well together on those whose viral load went to zero during traditional treatment. I'm in it for the cure!

[ppmguy]

      i applaud gilead for the awareness they give to curing this awful disease.  they dont really make there name stick out.  just small print at the end.  kudos to them!!

[elmoswife]

I started Solvaldi and Olysio a few days ago. 1 pill of each a day for 12 weeks. I was told by the pharmacist, who is extremely excited about this drug combo, that the rate of cure is 95-98%. (She had just attended a conference where these new drugs were the focus). My treatment was approved within a couple of days by insurance. I'm stoked and ready to be rid of this monster in me!

[momof2jewels]

Well, as far as feeling better...yes and no.  Do I feel better than when I was on treatment?  A resounding yes!  Am I back to feeling healthy?  No on that one.  I guess I should have put two and two together and realized that taking those treatment drugs would not leave me unscathed but it sure would have been nice to have a hint from the beginning.   I had it in my mind that once I had cleared my body of all that stuff, my body would automatically bounce back to pre-treatment condition.  Not so much.  But clearly it's not all gloom and doom!  The treatment has worked so far and I am at least able to function on a daily basis.  This new treatment being talked about...do you know much about it?  Any chance it will come with fewer side effects?  Have you made any decisions as to your course of action yet?

[ChrisDDD]

You said what I was trying to say much better than I did.  I am keeping an eye on the stockmarket.  Be well.

[ChrisDDD]

I'm pretty sure that number you mentioned is somewhere in the hundreds of documents I have, but I don't know where.  I know my last AST/LFT numbers were in the normal range!  I know it's not always reliable as an indicator of liver function, but I like it.  My viral load is over 15,000,000.

I've never drunk alcohol because I've always had a sensitive stomach, so that's probably helped slow down the damage to my liver.  I eat a very healthy appetite, regular exercise, mostly raw organic unprocessed foods, veggies and fruits, lots of good stuff.  I think I can wait a little while.  I have a well-compensated liver, but it's so impaired I need the Lactulose to pull toxins away from the liver and dispose of them that way?

[ChrisDDD]

I'm glad you mentioned August as another possible hurdle that will be crossed.  Maybe that's what my doctor is going to do.  You troopers are the best.  You're who I turn to for support, for info, and to support others as well, though I don't do as well on the latter as I should.

[ChrisDDD]

That damage post-treatment is what you've got to watch out for.  A couple of friends mentioned getting treated now and should be good to go for September.  Nope, I don't think so.  It took me at least a year to feel normal again after each of the three treatments I failed.  Congratulations on your UND, though!  Do you feel better?

[virt111]

I've seen the Gilead commercial a few times now.  I think the it's very well done and will grab the attention of a lot of us Boomers, as well as others, who've been waiting patiently on the new meds.  The market potential is staggering.

Best of luck to you.

[Upbeat]

That ad from Gilead runs in AZ all the time.  For people with 1b Sovaldi and Riba seems to be the ticket.  Later this year the FDA should approve the companion drug for Sovaldi and do away with the Riba.  Do you know what your IL28B Polymorphism is?  You could wait until later this year and do the 2 drug combo or do Sovaldi and riba now. It al depends on how your liver function is and if you can wait,

[Groupergetter]

My doc says there is another new med that is supposed to be available in August that appears to give better odds than this combination.  With an 80 to 90% SVR rate with Sovaldi and Olysio, I chose not to wait.   If something happened where I became uninsured.........well the risk was just too great.    Praying for SVR.

[momof2jewels]

Hi Chris,  Yes, I saw the same commercial and I couldn't believe my eyes and ears!  I'm from a suburb of Boston too!  I completed treatment with Victrelis, Interferon, and Ribovirin on 10/19/12 and am undetected so far.   I am suffering with quite a few lingering effects of the treatment as have some pals who treated during the same time frame.  I have been praying for a treatment to come along that did not have so many side effects and damage post-treatment.  I don't know enough about this new drug but I sure hope it is easier for folks to tolerate.  I wish you didn't have to choose between a great trip and treatment but I would probably opt for treatment.  The journey to wellness holds far more benefits than any trip!  

momof2jewels