Newly diagnosed

My niece was just diagnosed w/advanced PSC. She is pretty much symptom free. Living in limbo? is that what this disease is?

My doc never mentioned a stage, just said moderate to severe.

Not what I wanted to hear!

My son wasn’t given a stage or told anything about the stages. His Dr. @ Children’s just confirmed he had it & told him a lit if things can happen in 10 years. They are finding cures for diseases all the time. As a parent I will confirm…limbo it is. Try to stay possitive. Our visits to the Dr. Are actually pleasant. He & I laugh through the whole process. The team he has is fantastic. Upbeat, optimistic & full of jokes to keep us smiling & thinking possitive.
I will keep your niece in my prayers.
AJ

My husband has PSC. We too have not been given stages. The disease is ver
y unpredictable!! My husband was diagnosed 9 years ago. We have had a coupl
ple bums in the road with symptoms and procedures but over all has not effe
cted life. God willing he continues to do better and symptom free.
yers for you and a cure for this disease!!!

Our son was diagnosed 5 years ago with stage 4. And that’s the last we discussed of stages with the doctor, because he (Dr.) doesn’t seem to pay much attention to it. He (son) has done rather well. Graduated college and is now getting more training in medical field. Yes it is a wait and see disease. He has been symptom free for those 5 years, there have been bumps, where the blood work has not been the best, and the doctor has had to perform a procedure. The first few months after being diagnosed are confusing. Well maybe its all confusing. But we have chosen to stay positive, watch the research, help support the Crohn’s and Colitis Foundation and the PSC foundation and pray. There is so much to be hopeful about.

We had never heard of this disease before and in this medical age we certainly didn’t expect to have something with no treatment and basically no cure. Thank you for your comments. I will continue to check in and hope you all - and your loved ones have a wonderful and symptom free Christmas !

There are some treatments, such as ursodiol, insertion of stents, opening of the common bile duct during ERCP, and anti-itch medications. The "cure" is a liver transplant, which poses challenges. But don't forget, research is still being done.

Merry Christmas to you, AuntC.

They are working on a cure right now! Vancomycin in pill form has been shown to make this disease disappear. Dr. Kenneth cox in Stanford University has published studies on curing PSC with Vanco and is running a clinical trial now. Google this info!! Your docs may not even know about this. Be your own advocate!!!

Also Lum001 is looking promising as a cure

This disease remains to amaze me. I just learned of a med on here that can be taken. I knew about stents, but that will only happen if intolerable pain occurs. I am, with the help of these PSCers and my primary physician learning more every day. Unfortunately my GI never follows up with me after blood work or MRI’s. he leaves everything up to my Dr. I am the first patient my PCP has encountered in 35 years. It is not fair for her to have to be my go to for my PSC. The only thing I can comprehend is the GI is a dr. Who looks at age and determines from That what he is going to do for you. His practical work is meticulous but his verbal and appointment work needs a work up. When I told him I suffer from fatigue and nausea, sweats and chills, he tells me they are not symptoms…I had a vitamin D deficiency and I found from this site that is part of PSC. Thank heavens my PCP reads my reports or I would be dead by now.>
I’ve asked before, do the stages go from 1-4? Would someone tell me if they have been diagnosed as being in any stage and what your symptoms are? I am very dependent on these sites for my education. Thank you so much for all the information you share. Please don’t stop.

Sissy, this is a good link on psc:

http://www.hopkinsmedicine.org/gastroenterology_hepatology/_pdfs/liver/primary_sclerosing_cholangitis.pdf
Sissy said:

This disease remains to amaze me. I just learned of a med on here that can be taken. I knew about stents, but that will only happen if intolerable pain occurs. I am, with the help of these PSCers and my primary physician learning more every day. Unfortunately my GI never follows up with me after blood work or MRI's. he leaves everything up to my Dr. I am the first patient my PCP has encountered in 35 years. It is not fair for her to have to be my go to for my PSC. The only thing I can comprehend is the GI is a dr. Who looks at age and determines from That what he is going to do for you. His practical work is meticulous but his verbal and appointment work needs a work up. When I told him I suffer from fatigue and nausea, sweats and chills, he tells me they are not symptoms.....I had a vitamin D deficiency and I found from this site that is part of PSC. Thank heavens my PCP reads my reports or I would be dead by now.>
I've asked before, do the stages go from 1-4? Would someone tell me if they have been diagnosed as being in any stage and what your symptoms are? I am very dependent on these sites for my education. Thank you so much for all the information you share. Please don't stop.

Thanks detmsh for your reply. I appreciate your feed back.

Thanks JeffDC thanks for the referral of information. Very, very interesting.

Thank you jeffDC the site you recommended was very, very informative. I’m learning so much from the great people on. This site…