My son was in his sophomore year of college when he came home with pain in his side- after five long months of tests they determined he indeed had PSC- then a few months after started to have bowel issues and thus his diagnosis was UC.- He has been on the 7 pills a day of Urso and the 5 pills a day of Asacol- he had the stint put in to help with the drainage and that helped 100% and his liver enzymes, from where we started in the high 700's, came down to the low 140's -we tried uceris but he got a pancreatic attack and had to stop- but that medicine brought his liver count down to normal-Now seven years later his liver counts are climbing back up again- this week it's over 200 (220)- and his colonoscopy shows way too much activity in portions of his colon thus the Dr. wants him to start the medicine simponi- I am fearful of this drug- with his immune system already working at a minimal state- taking this drug will really wipe out what he has left?--But the Dr. seems to think the Asacol isn't doing any thing for him any longer- My son is an active 27 yr. old with a full time job as an aerospace engineer designer and teaches four nights a week-youth ministry to Catholic Christian children who are making their first holy communion and confirmation- - and plays hardball baseball on Sunday afternoons- so he doesn't miss a beat at all- He hasn't had any issues with pain-jaundice-fatigue or any attacks that I can tell- just the itching every now and again, mostly because he doesn't take his meds as he should. He has always been tall and thin (6' 2' 150lbs) and keeps himself in shape working out either by exercise or playing baseball-lives at home and eats really well-not a junk food person. I would like to know if anyone out there has tried simponi? If you have and are around the same age as my son age 27- what side effects did you have and how did it react with PSC? Can anyone give me some positives because everything I read is all negative about this drug and that it shouldn't be taken with persons having any liver issues....
Thanks and good luck to all of you out there dealing with PSC and UC-- as a mom it is very helpful to know there are some of you hanging on after the dreaded '10' year (the year most need the liver transplant) mark and living life to its fullest. May God grant all of you many more years and also remember - having an illness like this, is not just yours that you are living, but so are the people around you-my son doesn't get that- he doesn't communicate to us when he does feel bad or hurts. And what makes me upset and also, is my biggest fear- is that by the time he does say something and really is in pain or has issues- it will be too late for any doctor to help. Maybe it's because he is young and still at home that he feels like this. I'm not sure. But as a mom- it scares me that I cant help him if he doesn't talk about anything with regards to his illness. It's like we are in a euphoria and as long as he is walking and talking and doing all the things he does- no one ever says or asks about it. ugh......:(
I can't comment on your most important issue, the medication, but I have taken a somewhat similar approach to PSC that your son is taking. It may be that he has found the best way for him to deal with it. Because you are his mom, you want to do all you can, but what is there to do but support him? And, his form of support may be for you to just be there to meet any of his "expressed" needs. I am answering your comments only from my own perspective of how talking about it affects me.
Because the disease is so foreign to others, they want to ask lots of questions, most of which can't be answered. As for discussing PSC with others, I can't even explain all the PSC symptoms as they are individual to each PSC patient. My doctor states that my MRCP indicates "significant PSC." I am 5 years (that I know of) into this disease and have only recently joined this group because when I first learned of this condition I found it extremely depressing to read of all the severe conditions others were experiencing. It was so depressing that I decided to close out all discussions and just deal with the problems as they come up. My intention is to be the physically active person I have always been....I bike 20 miles a day, work out in the gym 3 days a week, work daily on piano, art, yard, church, family, aviation, etc. etc. I work my way to the couch when my fatigue level forces me there, but I don't have to talk about it. Those that know me, know when I am not feeling well and feel free to comment, but what is there to tell them? This is a solo venture....we all have different issues to deal with, and we have no reasonable expectations on finding a cure, regular test outcomes, outbreaks, liver transplant, longevity, or whatever can evolve when you live with PSC. I have always felt that people who ask "how are you" don't really want to hear all the details, they expect to hear a positive response and I will respond as they expect. I have decided that I am feeling petty good right now and I will deal with the issues when and if I experience them. Some days I can expect a lot of myself, and other days very little. Only 2 members of my immediate family know I have PSC and they know that I will tell them if there is something that they need to know. I joined this group to be better informed, and I hope to acquire more knowledge about the auto-immune system and to develop the best diet, supplements, and medical support for enhancing my life with PSC.
I can summarize by saying that I don't want my condition to become my identity and the main focus of my life. Hopefully, this is helpful to hear how another person silently deals with the uncertainties of PSC.
Thank you- I know its difficult- and we as his parents try to be as supportive as we can- I like the way you put it in your last sentence - you don't want the illness to become your identity--for my son this is him~
only us-who are his parents and his girlfriend of seven years and her parents know of his condition and our priest-
Fly Lady said:
I can't comment on your most important issue, the medication, but I have taken a somewhat similar approach to PSC that your son is taking. It may be that he has found the best way for him to deal with it. Because you are his mom, you want to do all you can, but what is there to do but support him? And, his form of support may be for you to just be there to meet any of his "expressed" needs. I am answering your comments only from my own perspective of how talking about it affects me.
Because the disease is so foreign to others, they want to ask lots of questions, most of which can't be answered. As for discussing PSC with others, I can't even explain all the PSC symptoms as they are individual to each PSC patient. My doctor states that my MRCP indicates "significant PSC." I am 5 years (that I know of) into this disease and have only recently joined this group because when I first learned of this condition I found it extremely depressing to read of all the severe conditions others were experiencing. It was so depressing that I decided to close out all discussions and just deal with the problems as they come up. My intention is to be the physically active person I have always been....I bike 20 miles a day, work out in the gym 3 days a week, work daily on piano, art, yard, church, family, aviation, etc. etc. I work my way to the couch when my fatigue level forces me there, but I don't have to talk about it. Those that know me, know when I am not feeling well and feel free to comment, but what is there to tell them? This is a solo venture....we all have different issues to deal with, and we have no reasonable expectations on finding a cure, regular test outcomes, outbreaks, liver transplant, longevity, or whatever can evolve when you live with PSC. I have always felt that people who ask "how are you" don't really want to hear all the details, they expect to hear a positive response and I will respond as they expect. I have decided that I am feeling petty good right now and I will deal with the issues when and if I experience them. Some days I can expect a lot of myself, and other days very little. Only 2 members of my immediate family know I have PSC and they know that I will tell them if there is something that they need to know. I joined this group to be better informed, and I hope to acquire more knowledge about the auto-immune system and to develop the best diet, supplements, and medical support for enhancing my life with PSC.
I can summarize by saying that I don't want my condition to become my identity and the main focus of my life. Hopefully, this is helpful to hear how another person silently deals with the uncertainties of PSC.
I, too, cannot comment on the medication, other than to say I've taken Salofalk for the UC for years without any problems.
But I would like to point out that I've been diagnosed with PSC for 16 years and am doing reasonably well, knock on wood. I believe I probably had it at least another 6 years before I was diagnosed. At that time (1992), I had had a liver biopsy and had elevated numbers but the conclusion drawn was just fatty liver.
So I think you need to stay positive.
Denial can be a very effective way to stay healthy once you know you have PSC. Otherwise, you could start getting depressed or start slowing down. In fact, I think that slowing down would be the worst thing you can do if you have PSC. So kudos to your son and the other poster (Fly Lady, whose exercise routine is admirable) for staying fit!!!
This could be a long haul, so it would be dreary for him to have to tell family about every minor symptom he has. You'll know when things get worse. Good luck to your family.
I can understand your anxiety but cannot help you with the specific med you mentioned.
However, I would like to tell you that since PSC is highly variable from person to person, the 10 year thing is not true. I have been living with PSC for about 16 years and it is only now that I am having some issues.
Also, whilst most patients with PSC tend to have enlarged spleens, mine is atrophied. Whilst this reduces my immunity, i still have to take immunity suppressing pills to control my Crohn's.
I think that it is more important to find a good liver doctor and follow his advice.
Mom, Your son sounds like he is trying to,live his life to the fullest and not let PSC dictate who he is or how he lives his life. My husband was diagnosed with PSC 17 years ago at age 46 years old and he just had an exacerbation in August of this year. He has been very lucky not to have had any real problems with PSC until now. He has had some denial issues but I can certainly understand why: it’s so he could continue to work, raise grandchildren, retire, and do the things he wanted to do without feeling strangled by something he can’t control. I’m sorry I don’t know about the medication you inquired about, but I can say this: when your son’s activity level becomes affected by his disease, he will most likely be more willing to talk about it. I know what it’s like to be a wife, a mom and grandma and to worry about those you love. In some situations, we can only offer our support and let those we love know that we are there for them when they need our help. God bless you and your son!
I do not have any knowledge about the medication you are asking about, but I read this as a "Mother". There are many parents on here and we understand what you must be going through and how you must be feeling. On the other hand, some of us have not reached that far along the journey. My daughter is only 7 and I appreciate you sharing your experiences because it opens a window into the possible future. I also am grateful to responses from other members because it helps me understand how my daughter maybe feeling now or in the future.
We all have to support each other through this and believe that new doors will open.
I am a strong believer in diet. I saw drastic changes in my daughter, when I changed her diet. I have also seen set-backs when I have given her something and then realised it had serious implications. You can only do your best. We are all here for you.
wow 7? I thought my son was young getting it at 20 and finding out there were no studies really done for his age group- we went to USC medical center and saw DR Fong- he has since done what they call a bloodless liver transplant in a 35 yr old man and has had no complications and I hope that when they get funding for another trial of this that my son will be a candidate for this. My son at age 20 just had pain and itching - but I was apprehensive about allowing them to do a biopsy for fear it was cancer and it would spread- so it took me five months and every test known to god done first before I consented to the biopsy and they did an orthoscopic type where they stuck a probe into his side and only took a few samples of the tissues so he didn't have any stitches or open incision. The only thing I wish I would have thought of and believe me it wasn't important at all at the time, was to harvest some of his semen for IF and WHEN he got married and wanted to have children. With all the different meds and for how long he has been on him I'm sure this might be an issue come down the road-- good thing he has had the same girlfriend since he was diagnosed and she is well aware of the high risk pregnancy it might be. Anyway yes my son eats very, very healthy- three different types of fruits a day -green apple slices- strawberry's and both types of grapes and always a dark green vegetable mostly broccoli- always turkey or peanut butter sandwich for lunch and stays away from junk foods-this probably helps-
Good Luck with your daughter--the road ahead is bumpy- but prayer for us has worked wonders!
PrincessD diagnosed at three and a half years old, but I knew something was wrong when she was two and a half. A mother knows!!! LOL
I know what you are saying. Someone we knew said to me "What will you do when she is older and she turns to you and says 'Mum because you allowed them to give me steriods and all those other drugs I can't have children!". I just stared at her blankly!!! Firstly I had never thought about that and second of all..... It is a hard road we walk along...
At least he eats healthily. I am strict with my daughter too. I have had to change my diet to mirror hers. At first I was resistant, but then.....I can only imagine how they must feel. :( My daughter is off gluten and dairy too.
Thank you!!! I believe in prayer too. There were many a time that it seemed that we were on the precipice and then my PrincessD would turn herself around. I believe it has been prayer.
I too send positive thoughts, prayers and energies for you and your family.
I too don't have any experience of the medication you mentioned, Simponi (golimumab), however I have had another biological immuno suppressant that works in a similar way, infliximab. Infliximab also targets TNF-a like Simponi. I had three doses of this earlier this year for an acute flare up of my ulcerative colitis. I'm potentially due to go back on the maintenance course this month. I also feared the effect it would have on my immune system due to the fact that I was already on azathiaprine. In my case though the infliximab has done more good than harm and helped control my UC at the time. I have had the odd cold but nothing out of the ordinary in the last six months. I don't know if the maintenance doses will have an effect, considering we're about to enter the colder months but no doubt time will tell.
I can relate to your son's attitude to life. I was diagnosed with UC at 14 and made a decision very early on to not let it define me. When the PSC diagnosis came in this year, whilst it threw me for a little while, I believe I am mentally more prepared now. I haven't told many people of the diagnosis, including my parents as I don't want the sympathy. Not to say that I don't intend on telling them. I will indeed share this with them when the time is right. For now though, I have a good job and amazing family & friends.. life is good.. what more can a girl ask for?!
Stay positive and have faith. Your son may not share much right now but he will when he is ready. At the end of the day parents are parents and no one can take their place in time of need.