My son was diagnosed with ulceratic colitis and PSC about 3 years ago. After a mix of different drugs and combinations, he ended up taking Imuran everyday and 5 mg. of prednisone every other day. His liver enzymes were staying pretty much steady and only SLOWLY elevating.
However, his new gastro. is anti-steroid, and refused to let Michael continue with the prednisone. Michael's liver enzymes have more than tripled in just a few months and are still climbing.
My question is: Do your doctors use steroids to help control the enzymes? If so, how long have you been on the steroids?
Michael has been doing very well overall. However, I know that if his enzymes go to high it will affect his joints.
Hi Mom
I am sorry to hear that Michael’s enzymes are going up. It must be very alarming! It is hard to be there and watch a loved one go through the ups and downs of this diseases.
Many doctors are fearful of long term use of steroids. They basically turn the bones into soft things that break. I had been on them several times when younger and then after the transplant again, (standard procedure). I went for a massage four months after the transplant and the licensed masseuse broke my rib! I am also now osteoporosis at a young age.
Sometimes the body reacts if withdrawal is too quick. If you have been on even a small dose for a long time, it should be tapered sloooowly. Like 3/4 a tab for several doses then half then 1/4 for for even longer. Perhaps also look at natural ways to kick start those adrenals?
Also my enzymes were over a thousand before the transplant and my joints are OK.
My heart goes out to you for walking this journey with your son. My son was the donor for my transplant and the bond we share is amazing.
Thank you for your reply. I had heard about the side effects of long time steroid use but didn't realize how much damage it can do.
I am questioning the current doctor because he has no first hand knowledge of PSC and seems to not be interested in learning anything about it. Michael has only been going to him for about 7 months and we seem to be educating him instead of him advising us.
It's just so frustrating when you don't know what to do.
I'm so glad that I found this group. Knowing that others are fighting the same battles gives us hope.
I was diagnosed with PSC about 9 years ago. Until recently I have been symptom free. My enzymes started to elevate a few months ago. I have been on an off Prednisone since. I am currently doing a Prednisone taper. Started at 40 mg for 10 days, then 35mg for 10, 30 mg for 10, etc. until I get to 5mg. Going to see how I am on the 5mg. My PSC Doctor (Mayo Clinic) recommended that. Make sure you take a Calcium supplement (needed for PSC and Prednisone). Also get a bone density test periodically to watch for osteopenia\ osteoporosis. I was also recently diagnosed with Crohn's (what joy!) and I am symptom free of that for the most part. The only real symptom I have is maintaining a stable weight. I make a point of eating a high calorie diet to help with the weight. The Prednisone is also helpful with Crohn's. My GI (not a Mayo Doctor) wants to put me on Humira which has some negative side effects. So the question is do I want the side effects from Prednisone or Humira? There are other drugs for Crohn's which also have a negative side effect. I am in the process of discussing all of these drugs with my Mayo Clinic Doctor. My GI doctor, while familiar with PSC, does not have the knowledge or understanding that the Mayo Clinic Doctor has. My take on this is I listen to what the Doctors recommend, do some research keeping in mind that the Internet does not always have the best answers, talk with other people who have used the drugs (like this website) and then make an informed decision. My advice to you is to try and find another Doctor. One who is knowledgeable with PSC (which in turn would probably make them knowledgeable with UC). The Mayo Clinic does wonderful research on PSC and has an excellent transplant program (hopefully it won't come to that for me or your son). If there is no Mayo Clinic near you, I would start asking people on this site who they can recommend. Hope this helps.
Pscnofun:
Thank you for your response. I am sorry to hear of your diagnosis of Crohn’s. I wish you the best in your management.
Is maintaining weight due to the Crohn’s? Michael is almost 23 years old and weighs somewhere around 145 lbs. When he was at his worst, his weight got down to 132 lbs. I’ve also noticed that he cannot eat very much at one time without getting sick to his stomach or running to the bathroom. He has developed heartburn and is taking Prilosec. Any thoughts?
We are no where close to a Mayo clinic. We have been to Washington University in St. Louis. Liver specialist said to continue going to GI unless or until problems arise. So right now we are looking for GI’s who have at least HEARD of PSC and are willing to take him on as a patient.
I am hoping to find answers and directions from people who are experiencing the same issues. Knowledge is power.
My name is Michael as well. I'm 53 and feel for you Son who is so young. The weight issue is most likely Crohn's. There can be absorption issues due to Crohn's that can attribute to weight issues. I was around 150 and dropped down to 131. I made a conscious effort to start a high calorie diet. I try to eat healthy but that's not always easy to do when trying to maintain weight. I drink Ensure Plus every morning plus fruit, cereal, toast, etc. I always have walnuts and cashews as a morning snack (good protein and fat). I eat a good lunch and in the afternoon I'll make smoothies of all fruit (no added sugar). Then I eat a good dinner (I love a baked potato in the micro). I was diagnosed with GERD last year and that took some time to control. I had issues with certain foods. I started on Prilosec but it didn't seem to work for me. I would wake up in the middle of the night coughing and shortness of breath. I believe this was due to the GERD. I have a friend who was taking Dexilant and it worked well for her. I talked to my GI about it and he put me on it. Took a week or so to kick in and I can basically eat what I want, when I want with no problems. I no longer wake up coughing or shortness of breath. I was at the point of sleeping upright and now I'm back to lying flat with one pillow. As I said it took some time but the Dexilant worked better for me than Prilosec. It can be expensive if your insurance won't cover it so look at the Dexilant website. They offer free of charge a card that will allow you to purchase 30 days for $20. Discuss this option with your Doctor.
I would think the Liver Specialist would be a better option than the GI for PSC. Check out another PSC site called PSC Partners Seeking a Cure (http://pscpartners.org). They have two facebook pages that you can join. One is a closed group meaning that anything you post would only go to members in the PSC group. Your facebook friends do not see the group. The other is an open group and your friends would see those posts. I belong to both groups and only post to the closed group. Partners Seeking a Cure has a yearly conference that I plan on attending next year (missed this year). It will be held April 24-26, 2015 in Dallas. If you can't attend they do post info from the meetings. I believe this years info is posted. My PSC Doctor from Mayo is a board member. Her name is Dr. Denise Harnois and I really like her. On the website there is a Learn About Us section and the board is listed. Maybe one of those boardmembers or someone on the site can assist with finding a Doctor for you knows PSC. You really need someone who can work with you and your son.
I was diagnosed with autoimmune hepatitis at 18 and they started me on prednisone, then put me on azathioprine and slowly weaned me off the steroids - my liver enzymes were about 1300 when I was first diagnosed, so this worked really well at getting them down. However, two or three of my liver enzymes have constantly fluctuated around the 80-150 range, but my specialist never seemed concerned. He seemed to think it was just me, and I had a good ten years with no health issues. I do focus on playing sport, going to the gym and eating well though. Osteo is definitely something I was concerned about, so I was happy to go along with this and until I was thirty, had no problems with the imuran. I hit thirty, was diagnosed with UC, then just this year PSC. Still on the imuran, and just started sulphur salazine for the UC. So far, no real issues with the PSC.
I had my worst outbreak of UC two months ago and they put me on a short two week course of steroids and the sulphur amines, which worked within two days to get me back on my feet. Then I stopped taking the steroids again. It's only the second time I've been on them, and for me, knowing what they can do, I don't really want to have to use that as an option - but then the other two drugs seem to be working for me. May not work for others?
I have been on prednisone for six months now the gi doctor said it is helping mine but he is going to switch to Imuran. I really can't much difference sine I have been taking the steroids.
Wow, what a great support group here with loads of information! I am loving it!!
Michael went to see his Nurse Practitioner this past week. She is wonderful and always does a thorough over all exam on him. He had his labs drawn and his enzymes have gone down dramatically!!! He's not changed anything at all, so don't know why the enzymes dropped, but we will take it. :)
She did go over a couple of concerns that we need to address with the GI. One being vitamins. Can he take them? Which ones? His first GI told him no vitamins, but I've read where they are necessary. So...thoughts on this? She was also concerned with his teeth. They are paper thin and look like the enamel is wearing down. Of course this could be from all the tomato soup (acid) that he eats, but it is his FAVORITE food of all time. :)
*I cannot express enough gratitude to all of you for sharing your stories and experiences. Everyone's positive support is so much appreciated. :)
