Can you get into NYC now and then? If so, Dr. Douglas Dieterich is excellent. Also Dr. Ira Jacobsen, although the latter does not accept insurance. (contact info below)
BTW Dieterich answers questions in our "Expert" forum, so maybe you can tell him your woes and ask for an early appointment!!!
(Expert Forum)
http://www.medhelp.org/forums/show/272
Dieterich: http://www.mountsinai.org/Find%20A%20Doctor/profile.do?id=0000072500001497131492
Jacobsen: http://www.hepccenter.org/jacobson.php
Can anyone recommend a good hepatologist in the Northern New Jersey/NY area? There is not one in our phone book and I do not want to use one of those lists that recommends/ranks MD's by the amount of $ they have paid to be on the top.
Thanks
The Good, The Bad and the Ugly
Didn't get weighed before starting treatment? I completely agree with Jim that your initial weight is important for a variety of reasons.
Being an MD myself, I hate admitting that some doctors out there are real dopes. Here's a great example: a friend of mine who is currently on treatment was found to be Hep C positive on routine screening at work. He went to an Infectious Disease specialist who sat him down in his personal office and, while tears were welling up in his nurse's eyes, told him that nothing could be done and that he had two years at the most to live. He ditched this guy in a hurry, and after a few more ups and downs found another gastroenterologist who helped him get his meds free from the drug company and is giving him competent treatment.
Turns out he had a rapid viral response and finishes treatment at the end of November with an excellent chance for cure.
There are good docs, not so good docs and some just plain idiots out there. Too bad we don't have stickers on our foreheads letting our patients know who's who.
Praying for a speedy and complete recovery for all of us undergoing treatment,
Jeff
Facta non Verba (Talk less, do more.)
If you tell us approximately where you live, maybe someone knows a good liver specialist in your area. If not, in general, you can find liver specialists at the larger, teaching hospitals. Many of us have found it worth a little travel time.
Debbie,
Your specialist may have his/her reasons for the higher dose, so ask! Higher riba dosing seems to be taking hold with many specialists these days. Hopefully you're tolerating the higher dose and it will help make your tx succeed.
Hi all
I weigh 147lbs was weighed before and my riba is weight based.. I go to the specialist at Cedar Sinai and I take 3 200mg twice a day.. so that is 1200mg a day...does that sound right.. seems I take a higher dose then most.
I think I am going to look for a new team.
Your comment "You didn't mention much about how your medical team is handling other aspects of your treatment, but if you start getting the feeling that they're not up to stuff, then by all means shop around for a medical team that is." made me say "what medical team, handle what aspects of of treatment?" So far my gastro had a endoscopy done, a liver biopsy and wrote me scripts for the meds. The pharmasist explained the treatment process and the PA at my primary's office said to call him if I needed AD's. I don't even know when I am supposed to have my bloodwork done.
From what I've read and been told, the Riba dosing is 800-1000 mg, if you're over 160 lbs and geno 2 or 3...A starter of 1000 mg seems to be standard for 1's...Under 160 lbs, the trend is weight basing doses... ~Melinda
While more important with genotype 1's, many docs are weight-basing their geno 2 and 3 patients, as well. In your case that would appear to be 1000 mg/day of ribavirin, something you might want to research further and bring to the attention of your medical team. But regardless, it just seems treatment 101 to weigh a patient before treatment starts if for no other reason than to track weight gain/loss during treatment. Perhaps this was an oversight, or perhaps this is indicative of the way your treatment will be handled in other areas. As stated, everything being equal, you're better off treating with a liver specialist (hepatologist) than a GI. You didn't mention much about how your medical team is handling other aspects of your treatment, but if you start getting the feeling that they're not up to stuff, then by all means shop around for a medical team that is. Personally, I switched teams after my first week of treatment.
-- Jim
I weigh around 115 lbs - probably 120 before starting tx and I'm on 1000mg per day. You should be taking at least 1000mg a day - not sure what the next bump up is for 1200mg.
Trin
I am Genotype 2a. I weigh 155 lbs and no the nurse did not weigh me. I am seeing a gastroenterologist and the actual prescribed amt is 200mg eachx4 or 800 mg/day. not 1200/day.
I agree with jim 100%.
Sometimes the regular docs just aren't "up to speed" on what the latest information is saying and all the big docs do agree that weight based and getting ENOUGH riba into you is CRUCIAL to success, especially during the first 12 weeks.
It seems EXTREMELY "sloppy" not to weigh a patient before prescribing meds - its not as if it's a long complicated process or anything and being off by ten or 20 pounds either way could change your dosage if you were on the edge...it would be much better to take the extra pill than to have too little.
You don't mention what you do actually weigh..............was the doctor close enough to have it matter? It's important - make sure it's RIGHT.
The newer trend is weight-based dosing, regardless of genotype. Are you sure the nurse never weighed you prior to treatment? If not, and I am reluctant to criticize members of the medical profession -- har har -- something is amiss :) Perhaps the doc "eye balled" you and figured out were in the 1200 range, but still, sounds kinda sloppy not to weigh a patient prior to treatment for any number of reasons. Are you seeing a liver specialist (hepatologist) or a gastro or family doctor? Livefr specialists tend to be more on top of treatment protocols and newer research. BTW what is your genotype and how much do you weigh? If your riba dose doesn't correspond with the study here, maybe discuss with your current doc, or perhaps another one.
http://www.hivandhepatitis.com/2005icr/aasld/docs/111805_a.html