I was just diagnosed December 28, 2014 and to say that I am overwhelmed with the PSC and all of my other conditions is the understatement of the year. I've been online reading about it every since the first doctor uttered the word and I've talked to my GI doc. Now I'm reading that my GI may not be the best doc to help me with this, I don't know what to do. I have been with her since 2010 when I was diagnosed with the ulcerative colitis and so I guess we've developed a working relationship but considering the seriousness of PSC I want the best doc for this. I do have a few questions that hopefully I'll get some answers to,
1) Are there any other women on here with PSC (all the information I've found says it mostly occurs in men)?
2) Is there anything for the pain that will really work? I want to discuss pain management with my docs but don't where do I start? I also have a very low tolerance for meds maybe because I take so many already but at the same time I have a very high pain threshold so what may be a 10 for some is only like a 6 or 7 for me. I almost have to be knocked to my feet not to keep going, like with the PSC, lol.
3) Is there a remission for this or even a small time when you can be symptom free?
I'm really trying to take this day by day and remain positive so I am very grateful to have found this website. Any information provided would be greatly appreciated. thanks in advance
Welcome I am sure that you will find the information and support very helpful.
I am a female and I was diagnosed with PSC last year September. I suffer from itching and fatigue. At this stage those are my only 2 symptoms. Since my diagnosis I have not really had a symptom free day it is either one or the other however I have found that using certain shower soaps and creams help the itching.
STAY POSITIVE and keep fighting. All the best and here anytime you want to chat.
I am a 43-year-old female diagnosed with Crohn's and PSC almost 3-½ years ago. My mother has had rheumatoid arthritis for almost 30 years, so I guess an autoimmune disorder is in my genetics. My PSC was caught in a very early stage. I have no pain or symptoms, except for mild diarrhea from Crohn's Disease.
I am not on any meds for PSC, but I started on Remicade for my Crohn's this past September. It is not working for me, though, so my GI doc is suggesting I also go on 6MP to see if that will help the Remicade work. I do not want to go on any more medication, so I decided to try the Autoimmune Protocol (AIP) diet that is based on the Paleo diet. Maybe that is something you can consider, too. I've only been on it for 5 days, so I can't say whether it is working for me just yet (it's suggested that people try to be on it for at least one month). Here is a link that I found helpful: http://autoimmune-paleo.com/paleo-autoimmune-protocol-print-out-guides/ . It's a tough diet to follow, but I figure I have nothing to lose by at least giving it a try.
1) Are there any other women on here with PSC (all the information I've found says it mostly occurs in men)?
I am 48. diagnosed 9/2007...happenstance, liver panel numbers very high. I am located in DC/MD area. I was diagnosed with colitis about 6 months ago. Autoimmune disease begets others for me...osteopenia, connective tissue issues. Pruritus (itching) can be intense at times.
2) Is there anything for the pain that will really work? I want to discuss pain management with my docs but don't where do I start? I also have a very low tolerance for meds maybe because I take so many already but at the same time I have a very high pain threshold so what may be a 10 for some is only like a 6 or 7 for me. I almost have to be knocked to my feet not to keep going, like with the PSC, lol.
Pain is relative. I have a high tolerance. I will get a stabbing sensation under my ribs every now and then. I don't take anything for it and I hold off contacting either GI or Hep doc unless I have a temp of 100. I've gotten to a point where it seems I can feel a blockage occurring (stabbing pain, pruritus, lethargic). Only med that I am prescribed is Colestipol (binds the bile), but has not been tested long term and doesn't change my numbers.
3) Is there a remission for this or even a small time when you can be symptom free?
In the first 6 years of being diagnosed, I've had 12 ERCPs, pacreatitis, blood infection and several hospitalization due to complications after ERCP. The last 2 years have been pretty good. Thinking I could have been mis-diagnosed (wishful thinking), my doc vehemently explained that PSC is not going anywhere. So I try to be positive, live as close to healthy as I can (trying holistic approach on my own).
I am a women and I have probably had PSC since I was 18 though did not receive a diagnosis till Jan 2015. I have 3 flare-ups but otherwise remain symptom free. My flare-ups range for a month to up to 4 at a time. From my understanding it is a very individual condition. Stay positive and know that you just have to take things day by day.
There are actually many women on this site that have PSC, and I am one of them. The one thing I have learned is that everyone that has is different. I guess that is why in part it is so hard to diagnose. I have major episodes that send me to the hospital for 4-5 days but they only occur every 12-18 months normally. Fortunately it will be three years in June since my last major episode. In between times I will have slightly elevated enzymes but I don't show other symptoms. I only need pain meds while I am in the hospital and it is a morphine drip and at times that isn't even enough. But yes, we woman are here! The only meds I take for it right now is Urso, which really helps the itching.
Everyone here is very nice and very helpful.....I love this group they are like a family.
My daughter has psc and ulcerative colitis. She has a j-pouch and has had chronic pouchitis for months. Antibiotics only worked for a short time with the pouchitis, she was in pain, had very low energy and said she felt like an old woman (she is 22). Her first psc flare-up was April 2014, she had her first ercp after which she became very ill with an infection. Thankfully no psc flare-ups since then. The only medication she is taking now is colostogel, immodium, vsl#3 and oregano oil. She eats only fresh fruit, vegetables, berries, NOTHING processed. This past two weeks have been wonderful. She has joined a gym to fight the fatigue, the itching has improved and she is in good form. Long may it continue. I hope you find a good doctor who knows psc, my daughter seems to know more about the condition than her G.I. Doc does but she also sees a hepathologist who is really good and keeping a close eye on her. She has bloods done every 3 months. It is important to have a good doctor to keep on eye on you. This is a wonderful site with lots of knowledge and experience which I find very helpful, encouraging and reassuring. Be careful what you 'google', come on here first. I hope you are all keeping well.
Hi everyone and thanks for sharing. It's great to have a place to connect with other people that are also going through this journey. Your stories have definitely helped. Thank you
Hey I’m a woman, 25 and was just diagnosed. I’m trying to figure things out but it’s amazing how differently everyone seems to present symptoms. I’ve got low energy that keeps me from being active. Mild itching has started but I seem to have minor flare ups once a month with fever and chills but no need for the hospital. I’m finding this site really supportive even just to know other people are dealing with similar things and getting some ideas about how to move forward!
Hi. Also a woman, 58yrs. Diagnosised in 2016…tho have dominant stricture etc…so it has gone on for years. We are in the minority but comforting to touch base with you all. Elevated lab’s other wise asymptotic. At my age night sweats and fatigue can be caused by lots of things! Lol
I am a woman and I was diagnosed at 55, although symptoms presented when I was 52. I’m curious as to what it means to have flare ups as it pertains to this decease?Does the liver become extremely painful or is it itching?
Clipper, everyone reacts differently to psc and its symptoms.
But pain and discomfort in the upper right quadrant is common, as is itching. But PSC has a number of symptoms that can arise at any time. It could be jaundice, itching, low grade pain or higher, ascites, varices, HE, high fatigue, lack of appetite.
I have had several blocked bile ducts, with differing symptoms. This degree of unpredictability is frustrating. It could be a low grade fever that gradually rises, it could be low grade pain, it could be awfully painful.
My liver doc gave me standing orders that if I ever have an unexplained fever of over 101 degrees, to get to the ER. Twice I hit 100.7 degrees, which is too close for comfort.
How are your symptoms now? Bearable, manageable, aggravating…?
Jeff
My symptoms don’t seem to have progressed, when compared to to what I’ve been reading on this group. I’m so happy to have found this group, it’s lonely out there with this disease. I have pain in my liver at times, I would describe like a pin prick. A couple times my liver has ached, so I applied a soft flannel cloth covered with codliver oil over my liver area, with a hot water bottle on top of it. My liver loves to be warm. Mostly I have nausea, especially in the morning. Sometimes I’m really tired and I run out of energy quickly.
The best treatment I have found is taking Alpha Lipoic Acid intravenously, it skips the liver that way. The pills are good too, but too much is harmful. After the Lipoic I can eat what I want for several days, and I’m symptom free. I’ve not tried cheese but hamburgers are okay, it’s pretty great. Sadly after four or five days reality steps in.