Need some tips on talking to the doctor

December 15, 2007

Hi friends,

My next appointment with my hepatologist is at the end of January,

after an ERCP to remove my stent. My current dose of Urso works out

to be about 19 mg/kg (currently taking 1000mg/daily), and I am

tolerating it well; I want to talk to the doc about increasing that

dose by one pill a day (to 1500mg, or around 28 mg/kg). I have

printed out all the wonderful articles I found in the 'Files' section

of the board, and will be highlighting all the relevant info on

benefits of high-dose UDCA therapy to take with me to that

appointment.

My question: does anyone have tips for a tactful way to talk to the

doctor about this, to avoid coming across as challenging his

knowledge? I really like this doc, and he knows I am an informed

patient; I don't think he will be surprised to see me come in with

good research articles. I want to present it to him in a way that

signifies I want to continue to be a partner in my health care, and

emphasize that I want to try this without insulting him. Thoughts??

Also, I started the UltraThistle three days ago. This may be

unrelated, or the placebo effect, or possibly from the milk thistle,

but I have noticed a marked improvement in my attitude and overall

feeling of mental well-being in the last day and a half. I read on

several websites, including a Mayo Clinic site about milk thistle,

that the herb has been used to treat hormonal imbalances, as well as

liver disease-related depression. Hmmmm. I found it interesting

that the apparent lifting of my black cloud is coinciding with

getting the milk thistle into my system. Related? I dunno, but I'll

do what it takes to feel better, even if it is the placebo effect.

Genevieve

UC 1983, J-Pouch 1999, PSC 2007

December 15, 2007

Genevieve,If you already feel like you're partnering with your doctor, and he views you as an informed patient, then I think this will be more than fine to bring him research papers and ask him/her if you can increase the Urso. You might even want to tell the doctor about the PSC support group, and about the PSC conference that is coming up in May. I give my doctor a few research papers as well. I also gave him the PSC Partners brochures to hand out to other patients - he's always seemed happy about it. When I mentioned the conference he encouraged me to go and said he hoped I came back with more ideas.As to the milk thistle, I would double check with your doctor to see if he's okay with it. I let my hepatologist know all the meds I'm taking, including over the counter meds. Since herbs are unregulated and untested, and have spotty quality control, he has said no to most of that stuff. At the UCLA Liver seminar in January, a pharmacist spoke about herbs, and talked about liver toxicity. The bottom line was that herbal teas are safe because they are so diluted. But many of the herbs can be toxic to the liver. Of course, prescription meds can also be toxic to the liver, but hopefully your doctor and pharmacy are watching out for you on that front. The OTCs that I take are calcium, a children's chewable vitamin and benedryl. Although I also take pysllium (like metamucil) and a probiotic for my j-pouch.Marie

To: From: gfmeyer@...Date: Sat, 15 Dec 2007 21:38:17 +0000Subject: Need some tips on talking to the doctor