I only joined up this website today so I am still getting used to the layout of the website so please bear with me ;-) Thanks also to those who have already welcomed me to the website. Just a bit of background to my story to start with as I believe that it is all linked with my condition/s. When I was about 11, I had a bad case of the shingles, and this is unusual at such a young age. Anyways, I got the cure and I was grand within a week. When I was 16, I had a very bad case of tonsillitis, and not long after I was diagnosed with U/C. I was then prescribed Pentasa 500mg, eight times a day, to this day. When I was maybe about 20, give or take, my LFT's started to elevate a bit so my doctor put me on Ursofalk 250mg, 3 times a day, to this day. I am now 24 and my doctor has just diagnosed me with having PSC. Like many others, I have had a biopsy, (which didn't really show anything up), MRI, CAT, and ultrasound scans (which didn't really show anything up), ERCP and MRCP (again, neither of these showed anything up) so basically my doctor has diagnosed me with PSC due to my elevated LFT results. I don't really think that it is enough to diagnose me with PSC because my bloods were elevated, or maybe I am hoping that it isn't enough?? During the years, I have being prescribed Prednisolone at times when it is needed and boy have I needed it at times. :-/
Anyhow, I also have been extremely itchy at times, my feet would be rubbed into the carpet that much, I would nearly bleed them at times, The palms of my hand also get very itchy. I sometimes would get itchy all over my body, but mostly it is my feet and my hands. I take a tablet called levocetrizine for the itching and it sometimes helps me, more times than not, nothing will ease the itch. I have also complained of like having a stitch in my side this last few years, just under my ribcage. I put this down though to having a strenuous job. Now another funny thing, that doctors can't seem to diagnose is that after returning from Spain a couple of years ago, I developed a rash on my ankles and feet, (just like the photos that Ben showed on his blog) and I had edema. This happened to me again last year in Medjugorje last June. Then last August, I was in Lanzarote, and it happened me again, the rash and edema. From Lanzarote, I flew to Madrid for the week and it just got worse, it got so bad, I had to go to the hospital. They were totally baffled. They said it could be a case of eukoclastic vasculitis but they couldn't be sure. It also happens when I am at home, just not when I am on holidays, but tends to be worse when I am on holidays (sunny places?). It looks identical to Ben's photo's though. When I was diagnosed last month, my doctor put me on Azathioprine 125mg a day, and I was getting my bloods checked every week, and just the other day, my doctors got in contact with me to tell me to stop taking them immediately. Thank God says I, that's me down to only 21 tablets a day now. My gamma GT levels were at 587. I'm not great at reading my blood results but I know that this isn't great. Bear in mind, I don't drink, smoke and the most laid back fella you would ever see. So basically, does my story sound much like any of yours, does it sound like PSC?? My last LFT's before I was took off the azathioprine were ...
Serum Total Protein HI 83 g/l (60-80)
Serum Albumin 41 g/l (35-50)
Total Bilirubin 5.6umol/L (<21)
Alk Phos HI 287 U/L (30-130)
AST HI 46 U/L (0-40)
ALT/SGPT serum level HI 47 U/L (0-40)
Gamma - G.T. level HI 331 U/L (8-61)
??
Greetings!
I am a 24 year old female, diagnosed with PSC and UC about 4 years ago -- but have had health issues for over 10. Unfortunately, a lot of what you described does sound like PSC.
My liver biopsy at first just showed "fibruous tissue" -- but a few years later another confirmed scar tissue and PSC. For several years, when I was younger, I would also get a horrible rash. My legs would swell -- if you took a latex glove and filled it with air, that's what my feet would look like. My ankles would disappear and I had dark purple patches all over my legs. To this day, no one knows what it was. In addition to that, I had a "rare form of faliculitis" and had ulcerations all over my arms and legs. I still have occasional flair ups and dark scars I can't get rid of. (I haven't seen Ben's picture ... if you send me the link I can let you know if it was the same thing.)
Itching is a problem for almost everyone on this message board. If I sleep through the night I consider it a small miracle. Typically I'm up in the middle of the night and stay up for an hour just scratching. Yes -- my feet and hands are the worst as well. Try sitting / laying in a bathtub with Epsom Salt before bed -- that sometimes helps me. Or, keep a plastic water bottle frozen in the freezer and rub your foot over it to sooth some of the itching. Unfortunately I haven't found the miracle cure for itching either -- I've had everything from my eardrums to bellybutton, feet and everything in between itch (sometimes to the point that I just sit and cry because I don't know what else to do) -- try to limit your sugar and yeast intake as that typically makes it worse.
That's a crazy number of pills to be taking a day! :( I used to take herbal supplements and meds (probably 25 a day) and my stomach couldn't handle it and I'd throw it up. Not I (and you'll read a lot of people on here) try to manage everything with diet and drinking enough water.
Try drinking lemon water and adding lemon to some of your meals -- lemons help liver function. I know you don't want to take more pills ... but milk thistle is a supplement supposed to rejuvenate liver cells.
Just some thoughts. I hope I'm wrong and you're just having a freak-accident type year and you'll be fine in a few months. :)
Best of luck!
Stacy
Hey Stacey, thanks for getting back to me so quick, I am using my phone to reply so I am going to try and keep it short. Please know that you are in my prayers, only for my faith, my Outlook would probably be all doom and gloom.I can relate alot to your story, whether I want to or not. I like your idea of the frozen water bottle, but thank God, my itch isnt as bad this last while as it can be, but I will keep your tip in mind because I will get itchy again…oh the thought! If you don’t mind me aasking, with the increased risks (because you have UC and PSC, like me) how do you view your life,your future? Are you lliving a normal life? To be honest, I will never see about getting a wife and have children since I foybd out that I have PSC. I personally don’t think it would be fair to tie your ‘wife’ down like that, nor bringing children into a world where they might have you (as a father) for 10years. Maybe I am being too philosiphical. I am trying to find these pictures for you but to no avail. Thanks for being here to talk to, its good and endearing 
Stacy said:
Greetings!
I am a 24 year old female, diagnosed with PSC and UC about 4 years ago – but have had health issues for over 10. Unfortunately, a lot of what you described does sound like PSC.
My liver biopsy at first just showed “fibruous tissue” – but a few years later another confirmed scar tissue and PSC. For several years, when I was younger, I would also get a horrible rash. My legs would swell – if you took a latex glove and filled it with air, that’s what my feet would look like. My ankles would disappear and I had dark purple patches all over my legs. To this day, no one knows what it was. In addition to that, I had a “rare form of faliculitis” and had ulcerations all over my arms and legs. I still have occasional flair ups and dark scars I can’t get rid of. (I haven’t seen Ben’s picture … if you send me the link I can let you know if it was the same thing.)
Itching is a problem for almost everyone on this message board. If I sleep through the night I consider it a small miracle. Typically I’m up in the middle of the night and stay up for an hour just scratching. Yes – my feet and hands are the worst as well. Try sitting / laying in a bathtub with Epsom Salt before bed – that sometimes helps me. Or, keep a plastic water bottle frozen in the freezer and rub your foot over it to sooth some of the itching. Unfortunately I haven’t found the miracle cure for itching either – I’ve had everything from my eardrums to bellybutton, feet and everything in between itch (sometimes to the point that I just sit and cry because I don’t know what else to do) – try to limit your sugar and yeast intake as that typically makes it worse.
That’s a crazy number of pills to be taking a day!
I used to take herbal supplements and meds (probably 25 a day) and my stomach couldn’t handle it and I’d throw it up. Not I (and you’ll read a lot of people on here) try to manage everything with diet and drinking enough water.
Try drinking lemon water and adding lemon to some of your meals – lemons help liver function. I know you don’t want to take more pills … but milk thistle is a supplement supposed to rejuvenate liver cells.
Just some thoughts. I hope I’m wrong and you’re just having a freak-accident type year and you’ll be fine in a few months.
Best of luck!
Stacy
Found it stacey … http://mypscstory-ben.moonfruit.com/my-photos/4539535792 . sure tell me what you think, I had what he had in his feet but not what he had on his upper leg. thanking you…
Aodhàn said:
Hey Stacey, thanks for getting back to me so quick, I am using my phone to reply so I am going to try and keep it short. Please know that you are in my prayers, only for my faith, my Outlook would probably be all doom and gloom.I can relate alot to your story, whether I want to or not. I like your idea of the frozen water bottle, but thank God, my itch isnt as bad this last while as it can be, but I will keep your tip in mind because I will get itchy again…oh the thought! If you don’t mind me aasking, with the increased risks (because you have UC and PSC, like me) how do you view your life,your future? Are you lliving a normal life? To be honest, I will never see about getting a wife and have children since I foybd out that I have PSC. I personally don’t think it would be fair to tie your ‘wife’ down like that, nor bringing children into a world where they might have you (as a father) for 10years. Maybe I am being too philosiphical. I am trying to find these pictures for you but to no avail. Thanks for being here to talk to, its good and endearing
Stacy said:Greetings!
I am a 24 year old female, diagnosed with PSC and UC about 4 years ago – but have had health issues for over 10. Unfortunately, a lot of what you described does sound like PSC.
My liver biopsy at first just showed “fibruous tissue” – but a few years later another confirmed scar tissue and PSC. For several years, when I was younger, I would also get a horrible rash. My legs would swell – if you took a latex glove and filled it with air, that’s what my feet would look like. My ankles would disappear and I had dark purple patches all over my legs. To this day, no one knows what it was. In addition to that, I had a “rare form of faliculitis” and had ulcerations all over my arms and legs. I still have occasional flair ups and dark scars I can’t get rid of. (I haven’t seen Ben’s picture … if you send me the link I can let you know if it was the same thing.)
Itching is a problem for almost everyone on this message board. If I sleep through the night I consider it a small miracle. Typically I’m up in the middle of the night and stay up for an hour just scratching. Yes – my feet and hands are the worst as well. Try sitting / laying in a bathtub with Epsom Salt before bed – that sometimes helps me. Or, keep a plastic water bottle frozen in the freezer and rub your foot over it to sooth some of the itching. Unfortunately I haven’t found the miracle cure for itching either – I’ve had everything from my eardrums to bellybutton, feet and everything in between itch (sometimes to the point that I just sit and cry because I don’t know what else to do) – try to limit your sugar and yeast intake as that typically makes it worse.
That’s a crazy number of pills to be taking a day!
Try drinking lemon water and adding lemon to some of your meals – lemons help liver function. I know you don’t want to take more pills … but milk thistle is a supplement supposed to rejuvenate liver cells.
Just some thoughts. I hope I’m wrong and you’re just having a freak-accident type year and you’ll be fine in a few months.
Best of luck!
Stacy
Hey there,
My outlook on life? that's a complicated question to answer. I have good days and bad days. Some days I'm "high on life" and others I just sit in my room and cry. I'm fully aware that I have a very good chance of needing a liver transplant, developing colon cancer, all of that. But when I look back, developing this disease is one of the best things to ever happen to me. Sure, sometimes I hate it and I get jealous of people who are "normal" ... but I've grown significantly in my spiritual life and I have a new appreciation for all I have. Yes, I may be itchy all of the time and not be able to eat certain things. But I'm very fortunate -- I can walk, see, hear, learn, etc. And maybe if I have this ... someone else doesn't have to. Or maybe, everything I've gone through was meant to be so I can help other people get through tough things in their lives.
My day-to-day life is pretty normal. Literally no one would know that I'm sick if I didn't tell them. I have a pretty high pain tolerance so if I'm ever in pain I can control it pretty well. I've also gotten better with my diet so that helps a lot. I try to be positive each day and attitude is everything. If I'm ever having a bad day or getting down, I think "ok, but I'm ALIVE today -- let's make the most of it". I try to live each day to the fullest because it could drastically change over night. Yes, this disease will probably kill me someday -- but that doesn't mean I'm going to stand by and watch it happen. I'm going to do what I can and help who I can and enjoy my life while I can.
As for finding someone ... don't underestimate people understanding. I found a wonderful man a few years ago and we're getting married this July. I had the same apprehension about him not understanding and feeling like a burden. But you'll realize that when you find "the one" -- they'll stand by your side through everything. He's seen me on my best days and my worst -- and it's nice to have that support. He might not always understand what I'm going through ... but he's always there being supportive. Nothing is certain ... so live your life to the fullest.
As for those photos ... that is EXACTLY what my feet would look like. That's actually the first time I've ever seen someone with the same skin issue. The doctors had told me they had "never seen anything like it before". I haven't had a flare up like that for almost 10 years (knock on wood).
Let me know if there's anything else I can help with! Stay positive! :)
Hey Stacey, I must say that your outlook is amazing and inspiring. As I previously mentioned, I have great faith and like you, I see that having this disease is a bit like “my own cross to carry”. I would be of a similar notion that with having this disease that some good will come out of it. I don’t know if you have this saying in America (I am assuming your American) but in Ireland we say “that the good must suffer”. Don’t think I’m putting myself up on a pedestal but I’m not a bad guy, so maybe that saying has some foundation. I must ask you, how did your family take it when they found out you had PSC? Telling my family was the hardest thing I have ever had to do. I felt so sorry for them. They are still trying to take it in and I can feel that they are maybe looking at me differently and treating me differently. Maybe it will just take them time. I am like you stacey, unless someone knows that I have PSC, they would never know. So them photo’s match your skin issues. Did you have edema with it? I don’t know what to think of it. You are the only other person that I have spoke to that had had it. Do you live in a sunny place? I kinda thought that it only occurred with me during sunny holidays but it happened a few times at home too. What do you think caused it, UC or PSC or maybe neither? I am glad that you have found a good man, and I wish you all the best with your wedding and may God grant you the health to be a good wife to a good husband.
im 24 aswell, from new zealand, having psc was strange to hear, but i had problems for a year before being diagnosed, so it was a relief for my parents to find out, they came to a specialist meeting and walked out rather positive, its not a doom and gloom disease for the most part, but it can get that way quickly i guess if the psc decides its time for a new liver. i live as normaly as possible, i dont have the energy to do as much as i was, but people are understanding. i play golf now more than surf, so its just about finding whatl work for you. diet helps. it put the kick in that i needed, im currently traveling around the world for 7 months, sure my docs a little nervous for me in the 3rd world countries, but you shouldnt miss out on things, and i somewhat agree about the whole relationship thing, i have been with my partner for 3.5 years, and shes sweet about it although the whole kid thing certainly could get messy, but what if nothing happens for 30years? obviously more chance getting ill than being in a fatal car crash, but that happens to and parents are taken away from kids, shouldnt let it stop you. i say all this and ive been diagnosed since oct 2011, first symptoms were jan 2011. the gloom ends quickly man, hope all is well.
Yes -- I'm American. What gave it away? ;)
I almost died when I was 14 -- misdiagnosed a few times -- doctors almost put me in a coma because they screwed up my medicine -- one thing after another. So when I was 21 and finally diagnosed with PSC, I was relieved -- at least now I knew what the "enemy" was. My parents were a little concerned of course -- but they've adjusted well. Just stay positive and those around you will follow. If you don't act differently, people won't treat you differently. It's all in your outlook and attitude.
I did not have edema with my skin issue. It was just very painful because there was so much pressure in my legs when they were swollen that I couldn't even walk. It literally felt like my legs were going to explode. Well -- I live in a little town called Johnstown, PA -- not really known for being a sunny place! People here actually make a big deal about it when it's sunny for longer than two days in the summer. (exaggerated a bit, but we're definitely not known for sun). I've actually found that being in the sun makes me feel better sometimes. The warmth and vitamin D helps. My legs would swell and get like that when I ate certain foods ... at first we thought I had a bad allergy. It'd happen when I ate Subway, Dominos Pizza, certain yeast -- but now I can eat all of that stuff and I'm fine. So, we still don't know whatever caused it. Probably never will unfortunately.
Let me know if you have any other questions -- I'm always willing to discuss and learn new things from other people.
God bless!
Stacy
Think it's great that you are able to go traveling, where are you now Todd? It is true to say that you have more chance getting ill than being in a fatal car crash but it is all on the persons personality don't you think? I was to go to study in America later this year but this could all be in jeopardy now because of my diagnosis. Apparently the health system in America is crazy and expensive and although it is probably one of the most advanced in the world, from what you hear and see, does it really matter when you have PSC? There is no cure for it!
I know your American Stacy because the way you write and your not afraid to mention God ;) You say that with your skin issue that your legs were swollen, so was mine but the doctors said it was fluid with edema. I heard before that fluid retention and edema is a sign of advanced liver problems? lol at the people of Johnstown, very similar to ourselves with the weather except its not exaggerated with us if we have two sunny days in a row. I find that I feel much better in the sun too. As I mentioned previously about my LFT results, my gamma gt was something like 331 while I was on azathioprine (I was only on this for about 3weeks, where you ever on this?) it just keeps rising every week, it is now 690!! and my ALT and ALP have shot up too, but I don't feel any different????