Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Hi Colleen, I have only been on this site for a couple of years, as my dgt has PSC/UC. It's nice to hear that you have been doing so well, and enjoying your wonderful family. I recently met Dr. Dan Pratt at a conference, and found him to be not just very informative, but nice as well, in fact we are in the process of trying to book an appointment with him. We live in Boston, and it was nice to learn of another doctor whose clinical interest is PSC. I wish you the best for the testing you are about to have, hope everything goes well and you will be feeling better soon. I can't imagine trying to take care of two young children, feeling the way you described. Best Wishes Pam Mom of J.P., 20 y/o (Crohn's/colitis 1/06, PSC 3/06) I'm still kicking! Hi everyone, My name is Colleen and I used to post regularly here back in 2000-2002 or so, not too long after I was Dxed with PSC in 2000. I see some familiar names, but there are too many new names for me to even begin to believe. Anyway, I kinda fell off posting for a couple reasons -- out of sight, out of mind -- I found I felt better if I didn't dwell on my PSC. Add to that two small children and trying to run a small business out of my home, and the time slips by each day. So, here I am. For the "oldtimers" who might remember me, Jens and I are living in Massachusetts again. Our daughter, Anneke, is now 4 1/2 and our son Fritz (Friedrich Henry -- born 9/25/06) is truly the apple of his mother's eye! I started knitting a couple years ago, then got a spinning wheel, then started dyeing yarn and spinning fiber and selling it online. I've basically gone without medication since January 2003, when I got pregnant with Anneke, and just wrapped up nursing Fritz -- because I need to get my own health back in line. I'm coming off one of the worst winters of my life. My UC and PSC were in full-blown flare and I spent from November to March dragging myself around -- the itching, the fatigue, the racing to the bathroom, the nausea. There were plenty of days that I wished I could have just died, rather than suffer another minute of PSC/UC. I had my colonoscopy on 2/1 and got a Dutch uncle lecture from my GI.I think he is not a big fan of Marshall Kaplan, as he asked me to go see a new guy. And as much as I love Dr. Kaplan, I have wondered for a while what will eventually happen when he either retires or passes away. So I met with the new guy -- Dan Pratt at Mass General -- very nice man, awesome office staff. He listened to me for an hour, which impressed me. Because my PSC is immuno- responsive (I went into remission during both pregnancies) he wants to get me on 6-MP (hence why I weaned Fritz) after getting new baselines with an MRCP and liver biopsy. Phew! So there is soup-to-nuts what has been going on with me! I hope to be around a little more, as I need to keep myself healthy so I am around to be a mom to my kids! I have a long road ahead of me yet, and I can't afford to just give up. Oh -- here are my latest liver panels -- I never know what to make of these -- if anyone has any insight, I'd love to hear it: AST -- 407 ALK -- 1306 ALT -- 412 Total Bili -- 1.9 Direct Bili -- 1.1 Those are all elevated -- and the test methodology was ADVIA Centaur. Anyway, we skipped baths last night, so I need to toss two kids in the tub and do a little scrubbing! Oh -- one other biggie -- I turned 40 in March. Whoa, that was a nonevent! Have a great Saturday all! Colleen UC dx 8/1984 PSC dx 8/2000 Get the MapQuest Toolbar, Maps, Traffic, Directions More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 I'd like to know more about this from anyone who has information. My LFT values all lowered to well within normal ranges upon becoming pregnant (within weeks of becoming pregnant). I'd love to hear more about what your phsyician thinks about this. I don't know what 6-MP is, so I'm interested in that as well. Anyone know anything about this and what it may or may not mean? Suzanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi Suzanna, MY LFTs were all near or within normal ranges for me during PG. It was heaven -- having that break from being so sick! Anyway, I also have ulcerative colitis and my original GI put me on 6-MP years ago, which is a short name for mercaptopurine. I believe there is another name for it -- is it remicade? I can't recall, because I was on it for years and my brain can no longer dredge up that kind of detail! I was in a study at NEMC using Enbrel injections and that worked very very well for me. I'd go back on that in a heartbeat, but I think there might be concerns about the tumor necrosing factor increasing the risk of colon cancer? I'm really talking out my you-know- what on that one! One other thing worth mentioning -- Dr. Pratt is starting a study at MGH using Vancomycin (sp?) on UC/PSC patients. It turned out to be successful on pediactric patients (it was a happy accident -- kids with c.difficile infections were treated with vancomycin and their LFTs dropped dramatically. They are now doing a study with 12 adults to see if it works on us big people too), and he offered to let me in it, but felt that sticking with an immuno-responsive path made more sense with me. HTH, Colleen > > I'd like to know more about this from anyone who has information. My > LFT values all lowered to well within normal ranges upon becoming > pregnant (within weeks of becoming pregnant). I'd love to hear more > about what your phsyician thinks about this. I don't know what 6-MP > is, so I'm interested in that as well. Anyone know anything about > this and what it may or may not mean? > > Suzanna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi Suzanna, MY LFTs were all near or within normal ranges for me during PG. It was heaven -- having that break from being so sick! Anyway, I also have ulcerative colitis and my original GI put me on 6-MP years ago, which is a short name for mercaptopurine. I believe there is another name for it -- is it remicade? I can't recall, because I was on it for years and my brain can no longer dredge up that kind of detail! I was in a study at NEMC using Enbrel injections and that worked very very well for me. I'd go back on that in a heartbeat, but I think there might be concerns about the tumor necrosing factor increasing the risk of colon cancer? I'm really talking out my you-know- what on that one! One other thing worth mentioning -- Dr. Pratt is starting a study at MGH using Vancomycin (sp?) on UC/PSC patients. It turned out to be successful on pediactric patients (it was a happy accident -- kids with c.difficile infections were treated with vancomycin and their LFTs dropped dramatically. They are now doing a study with 12 adults to see if it works on us big people too), and he offered to let me in it, but felt that sticking with an immuno-responsive path made more sense with me. HTH, Colleen > > I'd like to know more about this from anyone who has information. My > LFT values all lowered to well within normal ranges upon becoming > pregnant (within weeks of becoming pregnant). I'd love to hear more > about what your phsyician thinks about this. I don't know what 6-MP > is, so I'm interested in that as well. Anyone know anything about > this and what it may or may not mean? > > Suzanna > Quote Link to comment Share on other sites More sharing options...
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