Off to see Dr Bacon at St. Louis University this morning..

[Donnie54]

Haven't posted in awhile cuz I was a ways out to see Dr bacon, takes 4 months to get in, My liver is between 3/4 cirrhosis and I am geno 1a so I am praying I will be able to take the new meds. I was one seeing a local dr and lot's of you said I needed to see a heptologist at a university, when I went to the local dr and ask him about new meds coming out he knew nothing so I got my records and I ran from his office as he wanted to start me right away on Interferon, Ribavirin and Incivek and the nurse at the pharmacy is the one who told me to wait cuz a drug was coming out to replace Incivek and had less side effects and he knew nothing bout that either so anywho here I go to see Dr Bacon, I will keep posted on how it goes, And again thanks to all for the advice about seeing a reputable heptologist... It's been a long 4 month wait. And hepcat1954 haven't forgot ya, I will tell Dr Bacon you said hey...

[pooh55811]

Good luck with your appointment. Hopefully you will be able to start the new meds soon. Let us know how things go.

[nan535]

Hey Donnie!
I have been wondering how things were going for you. Very happy to hear you will be seeing Dr. Bacon.  I know it will be worth the wait you had.

My husband is 1a and now has cirrhosis of the new liver. He is starting Sovaldi and Ribavirin shortly for 24 weeks.  He Has to get his red blood cell count up so he gets a once a week shot of Procrit. We have these expensive Hep C meds in the house already. Just waiting for the go ahead to start.

I'll be very interested to know what Dr. Bacon decides for you.

Please keep us posted.

All the best,
Nan

[Donnie54]

Sitting in waiting room now, Nurse taking my vitals said Dr bacon has been starting everyone on new meds, really excited bout that, let ya'll know more later :}

[nursehepc]

Wow, the FDA did a good thing expanding on-label use beyond what was expected early on...

Wishing you the best...

[Donnie54]

Ok here it goes, First of all I have to say Dr Bacon is a cool dude, he listens and explains things very well,  I have PCT (porphyria cutanea tarda), I get these blisters worse from sunlight on just the tops of my hands and it is a direct symptom of hep c! Anywho he said we have to treat that and the high iron in my liver then we treat the hep c and he said he would then start me on  Sofosbuvir/Sovaldi he said he had over 100 people on it right now and the kicker is only 12 weeks with 90% success and no side effects, I told him that the local dr wanted to start me on the triple tx and he said well he treating me

[Donnie54]

What in the hell just happened and how did all those people get in on this post! Wow

[Donnie54]

Anywho he said local dr was treating me backwards and Icame to the right place and he will treat me, He really did not get into discussing my liver condition because the cd with the biopsy stuff on it was just the results and he was sending for the slides and sample to have his guy look it over before he would really say anything and said my liver felt ok, I go back April 3rd cuz hes goin on vacation

[nan535]

Did he say whether he is putting your on Sovaldi with Ribavirin/Interferon/Ribavirin or just Solvaldi and Ribavirin?  I believe its the first because you wrote its only for 12 weeks.

If I recall correctly, you have never taken treatment before (treatment naive) so that would be the proper treatment for genotype 1a.

It will be hard to wait but so worth it. Meanwhile, take good care of yourself and your liver.

Nan

[Donnie54]

Sorry so long nan535, my mind was going in so many directions because he mainly talked about how we had to treat the pct and the high iron in my liver, I was telling me about the new meds where I only had to take two pills and there would be no side affects I know he talked about the Solvaldi but I did not even hear him mention Ribavirin, I know he mentioned Sofosbuvir but I thought he said it with Sovaldi and a 90% cure rate, he really did not talk too much about my liver condition because he wanted his team to look at the biopsy first the he said next visit he would treat my pct but extracting lots of blood to let my system replenish it was the only way to cure pct..He did send me down and they drawed like 7 big tubes and 3 small tubes of blood and he said next visit he would be prepared to give me the full detail on what to look for, I will say he also told me that the older triple tx meds were $70,000 and these new meds were $150,000 and he has not had any trouble with my insurance company approving them so fingers crossed there as well..., I hope this helps..

[Donnie54]

Opps my bad I beleive the Sofosbuvir/Sovaldi are the same, so not sure what he is going to recommend for me till he reads the slides but I just know he said I would be taking 2 pills at a time and would be no side effects...

[nan535]

Pooh posted a link earlier today on another thread where I found this:

http://hcvguidelines.org/full-report/initial-treatment-box-summary-recommendations-patients-who-are-initiating-therapy-hcv

Should be helpful for you.

Nan

[Donnie54]

Yeah nan sounds bout right, he only mentioned Sofosbuvir, but if taking Ribavirin will there be side effects? And mabee he was just talkn bout the Sofosbuvir.. I am just hoping he looks at slides and not as bad as the locals are saying...

[klonny55]

Hi Donnie,

I am 12 days into a 12 week course of Sovaldi/Ribavirin. Absolutely no side effects so far. I am in good health with no HCV symptoms and no cirrhosis so that may have something to do with it.