Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Hi everyone! I am 24 and live in Charlotte, NC. I was diagnosed with PSC about 6 months ago. I have never had any symptoms but did have very high liver enzymes once when I had my blood work done on a routine check-up. I went through what felt like a million tests until two doctors confirmed PSC. I started taking Urso immediately but my hair started changing texture and falling out and I really didn't feel like myself. I told my doctors who then left it up to me to decide whether to continue on taking it. I stopped taking it about 3 months ago and feel great now. My hair is back to normal and still no symptoms. My tests for UC were negative too. I personally feel like my doctors (whom I really like and trust) came to this conclusion based on valid evidence of the tests taken, however, I kind of have my own hypothesis. I had an eating disorder in college and was very underweight for about 3 years. Upon recovery I have gained about 35 pounds in only about a year. Yikes I know...I think my liver has been damaged as a result. The doctors have touched on the subject briefly, but don't want to really use that as an explanation for my test results. I'm just confused I guess and am not sure what to do now that I'm not taking the urso. I am taking Milk Thistle and watching my diet. I have also really gotten into Hot Yoga. I sweat like crazy and hope this may help release some built up toxins. I have stopped drinking completely. This is really important right..to stop drinking? Alright, I think I've commented enough and sorry for the long explanations. Any advice would be wonderful and thank you in advance. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Welcome to the group! It is interesting to me that you said you suffered from an eating disorder. I did too (anorexia) and I thought that it was my fault that I ended up sick. My doc said no. Now whether that is true or he just wanted me to feel better, I don't know. I do take Urso and I have had no side effects. I know that the Urso thins the bile to allow it to move more easily but I don't know that there is any evidence that it does anything to slow the progression of the disease. I also do not have any problems related to my liver and it has been six years for me. I do not drink at all and I don't think that they recommend any level of alcohol use. Do you have UC or Crohn's? PSC '01 Crohns >>> " salwright83 " 10/8/2007 7:35 AM >>> Hi everyone! I am 24 and live in Charlotte, NC. I was diagnosed with PSC about 6 months ago. I have never had any symptoms but did have very high liver enzymes once when I had my blood work done on a routine check-up. I went through what felt like a million tests until two doctors confirmed PSC. I started taking Urso immediately but my hair started changing texture and falling out and I really didn't feel like myself. I told my doctors who then left it up to me to decide whether to continue on taking it. I stopped taking it about 3 months ago and feel great now. My hair is back to normal and still no symptoms. My tests for UC were negative too. I personally feel like my doctors (whom I really like and trust) came to this conclusion based on valid evidence of the tests taken, however, I kind of have my own hypothesis. I had an eating disorder in college and was very underweight for about 3 years. Upon recovery I have gained about 35 pounds in only about a year. Yikes I know...I think my liver has been damaged as a result. The doctors have touched on the subject briefly, but don't want to really use that as an explanation for my test results. I'm just confused I guess and am not sure what to do now that I'm not taking the urso. I am taking Milk Thistle and watching my diet. I have also really gotten into Hot Yoga. I sweat like crazy and hope this may help release some built up toxins. I have stopped drinking completely. This is really important right..to stop drinking? Alright, I think I've commented enough and sorry for the long explanations. Any advice would be wonderful and thank you in advance. Sally =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 >>>I thought that it was my fault that I ended up sick. My doc said no. Now whether that is true or he just wanted me to feel better, I don't know. Ladies, I don’t have a dog in this hunt, but I can tell you both – neither of you caused your PSC! It happened, it’s no one’s fault. With love, Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Thanks Barb! I will say that the PSC, and all the joy that goes with it, made me realize that I had to get my life to a better place.............and I did. I guess that is actually a blessing that PSC brought. - Also in Texas >>> " Barb Henshaw " 10/8/2007 10:25 AM >>> >>>I thought that it was my fault that I ended up sick. My doc said no. Now whether that is true or he just wanted me to feel better, I don't know. Ladies, I don't have a dog in this hunt, but I can tell you both - neither of you caused your PSC! It happened, it's no one's fault. With love, Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Dear Sally, Sorry to hear you may have PSC but glad you found our support group. I wanted to reach out to you because I also live in Charlotte and have PSC and UC. There are a couple of us in the area and a few more in NC. I was disappointed to hear you had trouble tolerating the Urso. You are not alone. I know Caroline in SC has not been able to take it and there are others. I am currently on the High Dose Urso Study being conducted by the Mayo Clinic and I will have my 5 year tests done this December to evaluate my reaction to the drug or placebo. Obviously, these tests are being done to determine if Urso can slow the disease down. So we still don't know if Urso is the answer or not. I know you said you were taking Milk Thistle. Another recommendation would be to take an Omega-3 fish oil supplement. There are ongoing studies into the benefits of DHA (Docosahexaenoic Acid) on PSC and many of us take it. There are added cardiovascular benefits with this supplement as well. Please feel free to contact me if you want to chat. We are in the phone book. Tarheel-Tim Wholey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Hi Tim, I read that you said that you are involoved in a Study with Mayo and Urso. My husband takes URSO as well and we were wondering if there were any studies at Mayo since we live in Phoenix AZ. Mayo is in the next town sdale. Any leads on how to get him inot study?? Does anyone live in AZ who has PSC? Thanks Pamela -- Re: Also new to PSC... Dear Sally,Sorry to hear you may have PSC but glad you found our support group. I wanted to reach out to you because I also live in Charlotte and have PSC and UC. There are a couple of us in the area and a few more in NC.I was disappointed to hear you had trouble tolerating the Urso. You are not alone. I know Caroline in SC has not been able to take it and there are others. I am currently on the High Dose Urso Study being conducted by the Mayo Clinic and I will have my 5 year tests done this December to evaluate my reaction to the drug or placebo. Obviously, these tests are being done to determine if Urso can slow the disease down. So we still don't know if Urso is the answer or not.I know you said you were taking Milk Thistle. Another recommendation would be to take an Omega-3 fish oil supplement. There are ongoing studies into the benefits of DHA (Docosahexaenoic Acid) on PSC and many of us take it. There are added cardiovascular benefits with this supplement as well.Please feel free to contact me if you want to chat. We are in the phone book.Tarheel-Tim Wholey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Pamela, I don't know if they are accepting any new study participants or not. If they are, a call to the sdale Mayo clinics Hepatology/Gastro group would get you started. Otherwise call Mayo Rochester at and ask for Jill. All the best, Tarheel Tim Quote Link to comment Share on other sites More sharing options...
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