Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Prednisone can be very difficult to eliminate. Your body just does not want to function without that chemical crutch. Many people hit a plateau that they can't drop below. Carolyn B in SC described a long gradual withdrawal protocol that allowed her to get off prednisone in message 74825 on 7/22/05. It wasn't quick, but it worked where 8 other attempts had failed. Tim R > When we saw the GI the last time, he mentioned that tapering from 30 > to 20 or there abouts is not a problem but that tapering off around 10, > 5, 2.5 mg is a problem and so told us first to do two weeks of 5 then > 4 weeks of 2.5mg/dy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 -Tim, Thanks. I will check it up. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Rita, We have not had luck with Suzanne tapering off of the prednisone lately. When she was first on it after dx she was able to taper off completely without incident. She did really well for quite some time, but in May she had another attack. The prednisone took care of it right away (40 mg), but the attack came back the first day she was without prednisone – we were tapering at a 5mg per 7 days rate. She was hospitalized, put back on prednisone and we started Remicade etc. and we were able to taper off the prednisone, but shortly after being completely off a flare up began again. So, we are now trying methotrexate and had to put her on prednisone short term. Right now we are in the tapering mode again at a much quicker rate and it isn’t looking well; on Sunday she started “feeling like it was coming back” again. She’s currently at 10mg, but will start 5mg tomorrow. She has been very reliable in predicting when a flare up is coming back or starting up again. She was at 1 – 2 stools a day and we were pleased with that because there was no blood and no cramping. Also, her sense of urgency went away. I am beginning to view those signs as more significant than the frequency or consistency of stools. She has had a day or two where her stools became very loose, but then they would return to just fairly loose. Again, it is now the urgency, cramping and blood that we look for as being a stronger sign of a flare up. Right now she’s having 4-5 a day with increased urgency and cramping. Another more subtle sign for us has always been the odor as well. I know that there is never a good odor to bowel movements, but when she’s getting sick again the odor is worse not only with bowel movements but with passing gas as well. It’s important to understand though that everyone is different and that the signs could mean another flare up or not. Suzanne hasn’t had a “normal” bowel movement in a really long time and I am beginning to think she never will. It may be part of redefining what a normal bowel movement is for her. I almost hate posting this because it doesn’t give you a clear answer. These diseases are so frustrating because there are no clear answers. Keep an eye on all of the signs and follow your instincts - contact your doctor if you are not sure. I always thought it was better to call and hear they are not concerned then to not call and sit and worry. I’d rather make the mistake of calling too often. Take care . . . I will be thinking of you. LINDA (Mom of Suzanne, 16; IBD 1/04; PSC 3/04) From: [mailto: ] On Behalf Of Rita Sent: Wednesday, March 01, 2006 2:50 PM To: Subject: phasing off prednisone , How is Suzanne doing? I am curiousabout the tapering off of prednisone for her because my son is also tapering off prednisone and I am not sure what to make of small problems. He is currently on 62.5mg of azathioprine and for the last 1-2 months has been tapering off prednisone. Before then he was on 10 mg of prednsione for a long time. then he went to 5mg/day. He is on 2.5 now and for the last four weeks, he has had the occasional 1-2 days/ week of loose stools (2-3 times a day max he says). He gets it for a day or two then nothing for a whole week. This week he has one day of going twice, both loose. I am not sure if it is due to the tapering off, a sign of him getting an attack or stress due to exams he had to take (he is a fresman in college and had exams during those weeks but claims he wasn't stressed for the exams). I think I need to keep a good watch it and see what happens. I think I should post this also on the general site in case someone has some input as to if the small occurences of loose stool is enough to get me worried. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Rita, Both the prednisone and the azathioprine are for the colitis. When the frequency, urgency and rumblings, blood in the stool, come back you should definitely email your Dr. to let him know that the UC is acting up as you taper the prednisone. They might want to adjust it. Lee > -, > Yesterday my son had 3-4 bowel movements which were loose. I told him > it is possible that this is due to the prednisone. I wanted to send > the doctor an email today (easier to get answers when I do that than > when I try to call). He wants me to wait till Monday. For so long > his bowel movement was once a day and normal such that 1-2 times a > week of about 3 loose stools in the last month is uncommon. I am > presently at odds with my husband who feels I am hooked on this PSC > stuff and that the doctor said our son is a rare case with possible > overlap with autoimmune hepatitis and also may have Gilbert's > syndrome. Yesterday when I mentioned that tapering off the prednisome > may be affecting his colitis. He said he thought the prednisone and > azathioprine were purposely for the PSC and not colitis so how can > they be affecting it. I don't mean to be complaining here but if I > wouldn't be asking question when we see the doctor or checking > information, there is so much we would have missed. I guess I am > p..... > Rita > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Rita, I know this was not directed toward me, but I cannot let this one go without speaking up. The details in this e-mail make me want to strongly urge you to contact his doctor. You are going into the weekend here and I would not want it to get any worse. When was his last step down? He may need to back up a bit, but please let your doctor know so they can make that decision. This should not weigh this heavily on you…just make the call/send the e-mail…whatever it takes. Then you will know and not have to worry about whether or not you called too late…or (best case) too soon. God Bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 -, thanks. After all its better to call too early than too late. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Rita, These medications were most likely given for the UC, not the PSC; I haven't heard of them being used for PSC. It's difficult when there is not consensus in the family and it feels like it weighs even heavier on us. As I said in an earlier post, my philosophy is that I would rather call too often then not call and have my child get worse. I know that as Mom's we can over-react, women tend to react more on emotions than men do - or so I hear. (I do not want to offend anyone here!). But, if for nothing else than peace of mind I would suggest calling or emailing. Discuss this with your husband and ask him to trust you. You might also want to discuss this with your doctor. Our doctor has told us that she would rather us call with any little thing then perhaps miss something. If your doctor responds similarly it may help with your husband's concerns. These diseases are difficult enough and it is added stress when we have to defend our motives and actions. When this all began with Suzanne my ex-husband accused me of "always wanting a child who was ill" and that I was making something out of nothing. There's a long history to that comment because of my work with people with disabilities - he often accused me of caring more about my work then my children --- thus the EX part in his status (among many other reasons). Anyway - my point is that although my situation not exactly the same, I understand how it feels to have to worry about whether you are doing the right thing for your child and how someone will view it. I hope I am reading all of this right ... I know I cannot stop but being hooked on the PSC thing because of the history of the disease. We don't have enough information on the rate of progression of the disease, how the disease impacts males and females differently, how it impacts adults and children differently etc. Because we don't have the information my belief is that I need to watch carefully for any sign of difficulties, even the little ones, because the sooner we identify that her liver is beginning to disfunction the sooner we can address it - and perhaps prevent getting to the point of needing a transplant. So, welcome to the "hooked on PSC" club. I would gladly give my membership up and have Suzanne not have PSC, but alas I can't. I am also now hooked on the UC thing too. In the beginning I foolishly thought PSC was the disease that I needed to worry about so that is where I spent my energy; but it is her UC that is giving us problems. I initially looked at the UC/IBD literature and thought that since they can remove the diseased area (colon) and she can engage in normal activities afterwards it isn't that big of a deal. Until I was faced with the possibility of that happening. In some ways I feel that I should be glad it is her UC and not her PCS that is giving us problems, but when I think that I know I am searching for a silver lining in an awful situation. Neither disease, of their own right, are easy ones to deal with (or to have a child with), and the combination of the two compounds in exponentially. Hang in there Rita - follow your instinct and talk with your husband. Educate him about the diseases and about your emotions. You're not being a p.... (although I am not sure what that is referring to!), you are being a concerned, caring, loving, responsible mother. LINDA -------------- Original message -------------- -, I ampresently at odds with my husband who feels I am hooked on this PSCstuff and that the doctor said our son is a rare case with possibleoverlap with autoimmune hepatitis and also may have Gilbert'ssyndrome. I don't mean to be complaining here but if Iwouldn't be asking question when we see the doctor or checkinginformation, there is so much we would have missed. I guess I am p.....Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Rita, I've read Lee's e-mail in reply to yours and it is correct, the azathioprine and pred are for colitis. Even so, no one really knows exactly what sets off a UC flare, only the person who experiences them can make the best educated guess in my opinion. I've tried other meds specifically for the UC and they made my symptoms wrose, so go w/your gut (no pun intended) feeling! I don't remember at this time how old you said your son is, but I started azatioprine when I was 25 at 150 mg and have been bumped up to 200mg this past year. I weigh 158lbs and am 5'10". The ammount should be based on his weight. Has he had labs drawn to see how the azathioprine is working and where is immune system level is at? For me this lab is drawn and then packed ina cooler and sent off for results ( I lived in WA and now in AK). I don't remember exaclty how often I had them drawn in the beginning, but I think it was either at 1 month or 3 months after first beginning the med. Hope this helps, and plese let me know if you have any other questions. , 30, UC 2001, PSC 5/05Rita wrote: , My son started the azathioprine in November at 50 mg. In January thedose was changed to 62.5 and that is the current dose. Rita Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 , My son turned 18 in June (about the time he was diagnosed) and weighs about 120 pounds. He was started on 50 mg of azathioprine and now is on 62.5 mg. We live in Gainesville, FL and he sees a doctor at the University Hospital (Shands). Before he started on azathioprine, he had labs drawn and sent off to Prometheus (I believe they are located in California)to check if he could be put on it. His levels have been checked once since then and that was when his dosage was increased to 62.5mg. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Sounds like they are cheking labs the same as I had done in the beginning, and being cautious w/how fast they raise his dosage. I know it's extremely difficult to be patient to see how his body will react, and the azathioprine itself can take months to take effect, but you sound like a very loving, devoted mother that only wants the best for her son. Trust your instincts, they ARE always correct. I've only been a mom for 2 years, but everytime something is wrong w/my son's health and my husband or his Dr. look at me like I'm nuts when I push for further testing, I AM the one that is correct when the results come back. When he was born he was home only 15 hours when he started crying hysterically like a 6 month old. I took his temp (he had one) and rushed him to the ER. He ended up spending 2 weeks in the hospital w/a kidney infection from a long labor. Previously the last day in the hospital after he was born I mentioned to one of the nurses that his diaper didn't look right (color). She said it was fine and gave me a doubtful look as I'm sure many 1st time mother's get. I knew something was wrong, but allowed her look to make me doubt myself. I have never allowed someone to make me feel that way again w/him. Our close bond is/will be forever, be it at 2 years or 20 years. You know what you are doing when it comes to caring for your son, UC sucks, and it should be under more control that what it sounds like it is. It may take a bit, but be pushy his treatment, stand firm w/your instincts, and keep loving and caring for him the way you always have,....like an AWESOME MOM!!!!! 30, UC 2001, PSC 5/05Rita wrote: , My son turned 18 in June (about the time he was diagnosed) and weighsabout 120 pounds. He was started on 50 mg of azathioprine and now ison 62.5 mg. We live in Gainesville, FL and he sees a doctor at theUniversity Hospital (Shands). Before he started on azathioprine, hehad labs drawn and sent off to Prometheus (I believe they are locatedin California)to check if he could be put on it. His levels have beenchecked once since then and that was when his dosage was increased to62.5mg.Rita Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Marti, My son is just abot 5'7 " . My kids are normally skinny but my husband and first son (21) are about 6'1 " -6'2 " . My oldest son is also very skinny but my son who has PSC and UC feels and complains about his height because he doesn't seem to be growing any taller. He has worn the same shoe size for about 5-6 years. He feels that his 7 year old brother is gaining on him which doesn't make him happy. Some height will help. Rita > > Rita > You said your son is 18 and 120 pounds. Is in short or real thin? Has he appeared to go through puberty? 's drs told us without Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 If you are wanting off prednisone you might ask you doc about Entocort-EC it's in the family as prednisone, but it causes less side affects. I've been taking it for about 10 years for crohns and it's fairly stable. Mike in houston Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.