This is my second time on tx. The first time was Pegintron combo for 48 weeks, after months I relapsed. I am now on week 71 of 72 taking Pegasys, copegus combo. While I still have plenty of sides effects including hypothyroidism (due to tx)they don't compare to how sick I was on the pegintron.
The insurance company gave me a harder time getting approved the first time than when I started round two. They never questioned having to do tx over or when I had to start procrit and neupogen.
Unfortunately I am not to familar with Zadaxin or its side effects but I still don't think it is wise to do two different types of therapy at the same time especially when there are so many sides and precautions that the doctors have to watch for.
Good luck to you. Kim
Miles Andrew would be a good person to talk with about this. His website is full of information on xadaxin (thymosin) and he's been through the tx wringer, so is knowledge is fairly encyclopedic: http://www.mkandrew.com.
You should definately inform your doc. They need to know what your taking. I was going to take it also if I didn't have a 2 log drop by 3 months and my doc was ok with that. I had the 2 log drop but wasn't clear so I opted for extended tx. My hepatologist recommends 48 weeks from clearing. I did 71 weeks. I chose pegasys combo for the same reasons you mentioned. Zadaxin is very expensive and insurance won't cover it. I think back then it was about $800 a month from the pharmacy I spoke with. My insurance com[any was fine with how long I was on tx but others are more restrictive. It should tell you in your policy. I wish you the best. Making all those decisions is just so hard. LL
I live close to Las Vegas. Know of a good doctor? One like Layla's, that might be cool with Zadaxin? I would go to Dr. Cecil in Louisville, if he wasn't so far away. I read that you have better odds of responding to interferon if you haven't taken it before? For this reason, including possible insurance issues, I want to take my best shot, pun intended. My Doctor retired. The Gastro group in my local small tourist town shoves you off to his nurse. I haven't met him in the 2 1/2 years that I have been going there. That won't work for me. I put a note out to Miles, thanks for the tip.
iam going on shot #5 iam 1b 11 million vl, mind if i ask what your vl is
My husband (3a) relapsed after a year of Infergen treatment. Then he did a year of Pegintron alone (this was right when it first came out, he was not offered Riba) and cleared and sustained after that year. He is still clear today 2 years after his last injection.
He had very few sides--or if he did, he didn't complain about them and just kept working.
Did you have a biopsy and if so,,,what does it show?
Stage 2 fibrosis. I am 52 years old. Infected at 16, transfusion. 1993, no fibrosis, 400,000 viral load. 1998, no fibrosis, 700,000 viral load. My enzyme levels are 90/45 which is lower than it has been in 5 years. All other blood levels are normal.
By the way, has anyone had, or know of anyone that has had very high viral load and cleared?
My viral load was 8 mil and I cleared at 12 week mark and still undetectable at week 41. You do need to be honest with your dr about what you are on so they can monitor your health while on tx. But yes,,,people do clear the virus with high viral loads and you should think about going 38 weeks past your "undectable mark" in tx and in this case for some,,,,means 72 weeks. Lots of people have had this disease for 20 to 30 years and viral loads flucuate at different times so next year if you didn't treat and checked your viral load,,,it may be down in low mils at that time or even lower,,,,its hard to say but viral load is not the most important factor here...Also being 52,,,I would want to go ahead and treat,,,Just my opinion and good luck to you!
oops again -- very briefly -- whare you see the <> in between my comments, that's where i copy/pasted portions of your message to comment individually on each portion -- but they disappeared, leaving a <> with nothing inside....oh well, sorry, but you'll get the gist......i don't think my browser is fully compatible with the entry form....gotta go
one last time -- more weirdness -- even the brackets i typed that time vanished after sending -- so that one looks odd too -- i'm going to try typing brackets here to see what happens: <<<<<<<<<<<<<<>>>>>>>>>>>>>>>>
<<It seems some people have relapsed or did not respond after interferon treatment. When this happens do you then try Pegintron vs Pegasys or visa versa? Does the insurance company usually go along with this?>>
you'd have to check with your insurance company because policies vary widely. as far as picking either the schering or roche product for your initial treatment, your carrier may have a "preferred product" they steer you toward and your doctor may have a preference -- you can tell your doctor what you've read about the differences and see what he thinks. don't get wrapped up too much and over-complicate matters by worrying about potential follow-up treatments before you've even started your first -- you might want to pose a "what-if" scenario to your insurance company asking if they provide benefits to patients who want to try treating again after failing or relapsing after the "standard" regimen of 48 weeks of interferon/riba -- some will flatly say "no," no matter what the doctor's opinion, while others are more flexible -- they may cover a second treatment cycle if a different approach is taken and the doctor strongly recommends it. others are super stingy; they won't cover anything beyond 48 weeks for an initial treatment and deny benefits for a follow-up in failures/relapses, even if a new "twist" is introduced. finding a doc who is willing to consider extended treatment is doable (and something to check into while you're thinking ahead) but many still have the outlook that 48 is enough to see if the treatment will take and will refuse to rx meds beyond that.
<<Has anyone tried Zadaxin? I know it's not approved in the US but apparently OK for personal use as prescribed by a foriegn pharmacy.>>
foreign "pharmacies" found online and elsewhere do a lot of things they're not supposed to do and many are gradually being shut down. for a doctor linked to one of these pharmacies to somehow prescribe an non-FDA approved injectible antiviral med for you on the basis of what i presume would be a phone or email consultation, and then ship this to you in the U.S. for "personal use," and have it be "OK,"....hmmm....sounds fishy....i'd think there'd have to be regulations broken in there that could cause legal problems on both ends. i'd double check with U.S. authorities before trying that and not rely on foreign pharmacy advice.
<<I have 1b with very high viral load ,which apparently is hard to treat. Anyone able to clear with my condition? I hear Pegasys is the better one, easier to tolerate and slightly more successful. I don't want to make the wrong choice and have the insurance company turn me down for further treatment.>>
lots of people in your circumstances clear.....i don't know the exact percentage....maybe 40-50%? as far as the schering vs. roche debate goes, i have heard as you have that pegasys has side-effects of slighty lower intensity than pegintron and might work a tad better. a lot of docs will tell you "they're both essentially the same."
<<What to you think the chance of telling a doctor that you have Zadaxin and have him turn a blind eye while treating you with Interferon/Ribavirin? I would'nt want to take Zadaxin without him being aware of it. I feel like this is my best shot, since Zadaxin is approved in 34 countries and showing very good response for the hard to treat group>>
if you want zadaxin, i'd suggest hunting for a clinical trial. if i were a doctor, i wouldn't let a patient inject another non-FDA approved antiviral alongside the approved treatment with a wink and a nod. that puts me "in cahoots" with you and if there were complications, how do i know that you won't blame the problems on the zadaxin and tell the lawyers "he knew i was taking zadaxin and said it was ok."? in the current environment with malpractice premiums already soaring and doctors being forced out of business every day and constantly looking over their shoulders, i'd think it would be tough to find a doc willing to take that chance. they're out there though, cos others here have posted about them. some are willing to take the risk in the interest of helping their patients and that can be admirable; others will be very careful and play it close to the vest.
oops i have to go suddenly, and send this right now -- wasn't quite finished -- of course what i wrote consists largely of opinions and personal speculation, so take it with a grain -- good luck with your eventual tx (treatment) take care, stan
Dear Califia, thank you for turning me on to Miles. Miles gave me great lead for a Doctor. His name is Dr. Gish. He is based in San Francisco, but has an office in Las Vegas, where he meets paients twice a month, which is very close to me. For those not familiar with him, and in need of a internationally known Hepatologist (only works on Liver Patients), you might consider him. He has outreach clinics all over Northern California and Nevada. He will be meeting with me personally. I was impressed how detailed he is. The Dr. wants to see all of my records including the slides, with all stains, of all my liver biopsys. I can't set the appointment until he receives them. I really feel like I am in good hands. Thanks again to everyone.
Oh man, did you land up! I didn't realize that Gish has an office in Las Vegas or I would have mentioned him as one of the great improvizers--but thankfully it's all worked out just fine. Bravo! He was my doc for 10 years. I absolutely adore him and have huge respect for him as an intellect and as a compassionate clinician. Insurance changes forced me to leave his medical group but I'm consulting with him during treatment nonetheless. He gets the last word on everything. Yes, highly detailed, unbelievably conscientious and infinitely trustworthy.
I'm really happy it's worked out for you. And Miles is a little saint in his own right. Cheers!