I kind of went through the same thing. My doctor was a really nice guy but during the course of treatment I realized from being on here how little he knew. At one point at the end he admitted that I knew much more about treatment than he did - and when I wanted to extend because of the studies I had read he didn't know really what to say. AT that point I went to a famous heptologist for a second opinion (heck the cost was a lot) and he offered to talk to my doctor right then and there and to consult with him whenever he needed. Nice nice intelligent wonderful doctor (Dr. Jacobson in NYC).
The way I see it you have two choices. One being spend the money on the doctor that knows it or two - learn everything you can and make sure he is going to do that list of things for you (ie: 4 week PCR minimum, weight based riba minimum, 10 hemo count minimum etc) and then you go to the guy who is in network and closer.
It takes work on your part but if you can do that you can navigate the course of treatment and succeed. Everyone on the forum is willing to help with the big questions (ie: will you give me procrit and neupogen if I need it? When will you test my thyroid functions?) but you have to really really do the work.
It worked for me and I've been cured for almost three years.
Good luck on your decision.
Had a consultation with Dr. Jacobson beginning of Aug. For starters he does not prescribe ADs
beforehand which I hear on this forum is something good to do.
If I remember correctly he also made biopsy a requirement which I do not
need if I decide to treat now (FibroScan,FibroSure both F2 , bloodwork reflects the same)
The liver center in Germany that did the FibroScan for me is doing it for 5 years
and the professor there was very confident with results and told me not accept
a biopsy at this point.They said if I treat now all my damage would still be reversable
which is what makes feel I should roll the dice now since for geno 4 there is
nothing at the horizon other than maybe retreat with PIs later?
You started answering some of my questions and I would like to make a list
maybe you and everyone else can help. This would be something that we can pass
along to everybody new that faces the same issues as well:
The tx list:
1) first PCR at 4th wk than 12 wk
2) Will I get rescue drugs and when will I get them (Procrit,Neupogen) ?
3) When will you test thyroid function ?
4)Can I start anti depressant (Celexa) before starting tx ?
How does this work ?
Let`s say I decide to go with Dr. Jacobson.
I am already a patient there. I will make another appoitment and
tell him I am ready to treat. He than will give me the treatment plan
which in my case my choice will be Alinia + Pegasys+Copegus. He might want
to run some more labs maybe not. He did the last time and I ran those
tests with my last labs 4 wks ago.After this meeting he is going to send me
home with the drugs to be picked up at my pharmacy (after insurance approval)
Than what ? Do I have to see him for the first 4wk PCR or do I just go to lab
and get a phone call ?
How does the patient monitoring and supervision look like in reality ?
nygirl7 thank you for your help maybe I should change my handle to nyboy05
Being that I am downtown on the westside the upper eastside is a pain to get
to especially in the cold winter months. How often should I plan on having to see
Dr. Jabcobson , let`s say if everything goes as average ?
"One is close by but has only treated about 100 people " You sure he's a hepatologist, or a GI who does HCV?
Board Certified in Gastroentereology and Hepatology
is what his card reads. Used to work with my general physician.
How does the monitoring and support of patients on Tx in reality
look like ? What is the ideal doctor-patient setup ?
These are still very much considered experimental drugs so monitoring
is a a biggie I would think ?
I would not make taking AD's prior to tx a priority. You might not need them. Personally I got the depression on my 2nd week. Got onto Celexa immediately and it worked after 6 days. I was gradually feeling better from the 3rd day.
As to how often to see the doc, I would play it by ear. I saw my doc once a month and always scheduled it one week after blood draw, so she had the results and we could discuss what was going on.
Sorry, I hit the button too fast.
Here in DK we don't pay for our doc visits, I don't know how you do it with insurance etc in the US. You might not have to see the doc that often. That's what I meant with paying it by ear.
I went through two rounds of treatment. Two different physicians (first one died shortly after treating me). The first was a GI and he handled a ton of Hep C cases - he was fantastic and knew all the research. The second was a physician's assistant and good at admin but limited knowledge of research and anything that didn't fit the mold he knew. Anxiety is very common while on treatment and not being in sync and trusting my health care provider the second time was horrible to go through so consider the mental side of a lesser doctor. I would have driven 200 miles for better care the second round but was afraid to switch - (yes, I should have and did so after treatment).
I agree with nygirl7 to do as much research as you possibly can - no matter which MD you pick. During my second round, the PA made several major errors in treatment length and dosage that I researched and convinced him to correct. Get copies of all your labs and if possible, record the important levels (white & red cells, platelets, neuts, VL, AST, ALT, etc.) into a spreadsheet so you can see trends and review with your MD.
As far as anti-depressants, many here couldn't do tx without them but I did both rounds without. I didn't want to deal with the side effects of an additional set of drugs, especially the impact on sex. I did occasionally take Ativan for the anxiety. Something to weigh and discuss with your doc in advance.
Well , already a problem for me and I am not treating yet.
I have a trust issue with doctors. To them it is business as usual
to me it is everything but that.
I to feel less chemicals the better but I have been very strongly cautioned
on this board about that.
The neurophsycotic sides are what I am concerned about.
Many people here really need the anti-d's and they tend to be more vocal given their more severe depression. I found that the meds mainly magnified parts of me that were already there. I never had any real depression issues prior to tx. My depression on tx was mild the first round and almost none the second round. I do a lot of yoga and exercise which I maintained fully during tx. That may have helped.
I agree with your perspective on doctors. Plus they are so busy and have to spend so much time on admin ****. Another reason to really stay on top of things. I look at my doc as my health consultant and always ask for options and then do research. I am also HIV positive since 1991 so have had many years of perfecting this :)
I went to one of them fancy university liverheads for a consult. I made a deal with my GI. The deal was that the GI would execute the plan that the liverhead came up with. It was not a normal by-the-book plan since I was a relapser. The GI followed the liverheads directions. During treatment I saw a hematologist for the blood work and any meds to fix the blood work (Neupogen/Procrit) and my regular doc for all else (sleep aids and AD, if I needed them). It all worked out well. Each doc had a defined piece of the action and I kept the circle tied together. I did most of the managing. Point is, several combination of health care can work. The most important is to get the best advice that you can find from someone who knows what they are talkin about and for who it's more than a hobby or a sidelight.
I personally would not let a commute from downtown west side to upper east side weigh at all in a decision about what doc to see. See the one you think is best, the one you feel most comfortable with. A few minutes longer on the subway or whatever will be totally worth having a doctor you like better.
As for the AD's you can't assume you will get depressed while on treatment, and many people say the AD's have their own side effects. I agree I wouldn't make starting them beforehand a priority. I also agree with what Joey said, that the tx (for my husband, at least) seems more to magnify issues he already had to start with. He has not become depressed and we are glad he hasn't had to take an AD on top of everything else.
them it is business as usual
I can guarantee you one thing with Doctor Jacobson it is NOT like that. I never met a doctor who seemed to care more about hep patients before in my whole life. Even to the point of offering to help consult with my doctor for free because I told him straight out I could not afford to go to him. The fact that he is the lead investigator of so many studies and is at the forefront of most of the research materials going on right now and really knows more than almost anybody on the planet - it's not becuase he wants to make more $$$ I'm sure he has enough.....it's because he really CARES about us.
I lived in upper Westchester County when I went to him which is a pretty good commute and if I could have afforded it I would have done it no problem. I think its great that he gives monthly PCRs as standard practice too,most doctors don't give you nearly enough but he understands fully the reasoning behind it
I'm a fan that is all I can say I've never heard of anyone who met him and was not.