HealingWell
Search Close Search
☰

Need contact info for new hep c drug study.

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/30/2014 5:12 AM (GMT 0)
New to forum,hep c diagnosed since 97, failed tx in 98(rebetrol)had to reduced dosage due to thrombocytopenia.Heard about new drugs for type1.looking for info about getting in to one.Feeling pretty bad now.
Posted 3/30/2014 12:27 PM (GMT 0)
Welcome to the forum Hep97

There are treatment centers all over the US, whereabouts do you live? Have you been to a hepatologist? Have you discussed any new trials or treatment at all? Do you have insurance to cover the new drugs that are out and working well for many people? If not there are some that have been given treatment free-of-charge.

Depending on how sick you are, your hepatologist should be referring you for treatment or to a transplant center. Do you know your MELD score? Do you have decompensated cirrhosis?

These answers would help our forum folks to give you better advice (others will be along). You came to the right place for all things liver. Sorry you had cause to find us though, but this is an exciting time for many who are receiving the new treatment.

Hang in there, we will help you down that Hep Highway :)
Posted 3/30/2014 1:45 PM (GMT 0)
Hep 97...What Mae said.

And welcome to the forum. No need for a trial any more. Even the GI docs are prescribing hte new drugs. Read the thread on here from Canada and US...steve, music, allan, mike, tracy...so many are getting treated. Even Medicaid is covering the drugs. Some are having to pay hugs copays, but the manufacturers are helping out. There is finally a cure in the wind...and this wave of patients are pioneeres!

Let us hear from you.

Mama Lama
Posted 3/30/2014 6:30 PM (GMT 0)
hi hep 97, with your genotype, and being treatment experienced, tx at the moment with new combos is reliant on your liver damage. do you have a recent biopsy? if there is no urgency to tx NOW, i would wait 6 months.

the only tx available to you is interferon/riba/protease inhibitor. the PIs are very sucessful, but they need int/riba for 24 to 48 weeks.

geno 1 will have a couple new txs by years end, that will fill the tx centers all over the world.
barry
Posted 3/30/2014 11:06 PM (GMT 0)
Thanks for the response,I have had 3 biopsies,last was 2007,each one had more damaged,last one was cirrhosis,but I was told by a nurse practioner of a hep specialist at Uab that she would not ok treatment,didn't get to see doc,my gi said new drugs would eventually come out around 2015, I notice the commercial on tv a couple of weeks ago and looked up the hepatic hope info,studies sounded positive,high percentage of hep c 1,cured.i do have insurance.last labs 1 yr ago,lifts ok,but vl was over 6 mil. then,been feeling pretty bad last month or so,need to go get new labs.
Posted 3/30/2014 11:58 PM (GMT 0)
that last biopsy makes you eligible for the off label sovaldi and olysio combo. very effective for geno 1 cirrhotics. hopefully you are still compensated. if your dr says no; bring this with you.


hcvguidrlines.org/full-report-view

you need to tx now and insurance will pay. your dr needs to push a little and it may take up to a month, but it is good for all.
best to you, barry

Post Edited By Moderator (MamaLama) : 4/1/2014 11:13:24 AM (GMT-6)

Posted 3/31/2014 12:04 AM (GMT 0)
that last biopsy makes you eligible for the off label sovaldi and olysio combo. very effective for geno 1 cirrhotics. hopefully you are still compensated. if your dr says no; bring this with you.


www.hcvguidelines.org/full-report-view


you need to tx now and insurance will pay. your dr needs to push a little and it may take up to a month, but it is good for all.
best to you, barry

Post Edited By Moderator (MamaLama) : 4/1/2014 11:13:58 AM (GMT-6)

Posted 3/31/2014 11:28 AM (GMT 0)
Welcome to the forum Hep 97, sorry to hear you're feeling so bad now but keep visiting the forums and hopefully we can all point you in the right direction to get your treatment started or assist with providing info you might need.

Good luck and again welcome to our forum, great group of support people here!
Posted 4/1/2014 4:28 PM (GMT 0)
Thanks guys,going to get labs today,having some bp problems never had before,I think causing some weakness,going to primary,going to see if he will run complete chemistry and CBC,had heavy nose bleeds last 3 days,trying to get in touch with gi doc about study.
Posted 4/1/2014 5:15 PM (GMT 0)
Hep 97, where are you. In US you can get meds from your GI or Hep doc. Many insurance companies are paying for the treatment. Do it! ML
Posted 4/2/2014 3:11 AM (GMT 0)
I'm in bham,al,trying to get in to see gi doc,pc took labs today,should get results by Friday.I do want to start on new meds,been waiting a long time.its hard to believe numbers decreasing so fast,I'm glad they are,I know everyone has to be excited,hope everyone can be cured.
✚ New Topic ✚ Reply