Prednisone masked peritonitis
Posted , 8 users are following.
Hello, new to this group. Have experience to share and would appreciate feedback on my situation. I was diagnosed with PMR over a year ago and put on 20 mg prednisone, which my MD said was a "low dose" which I could take for a year. Have learned this was not good advise. The pain subsided but never completely went away. I tried tapering off 2.5 mg at a time, and when I got to 12.5, the full pain came roaring back. My new MD put me on 40 mg to "blow it out." Pain left. One morning I woke up with debilitating stomach pain and low fever. It went away after about 4 hours. The next morning I had mild pain and while poking around discovered a hernia. Went to the emergency room to have it checked, they did a CT scan and found diverticulitis ( a hole in my colon) which was allowing bacteria into my abdominal cavity (peritonitis). They said it had nothing to do with the hernia - just a lucky coincidence, because had I not come in, I would have been dead within 48 hours. Everyone was totally amazed that I had walked in under my own power with minimal pain. Apparently the prednisone had masked the symptoms. Surgery involved removing 8" of colon and putting me on a colostomy bag for 3-4 months. In the hospital, they brought me down from 40 mg prednisone with an IV version so I left with the equivalent of 20 mg oral. Started tapering off and again extreme pain came back about 12.5 mg. Went back to 17.5 which brought the pain to a bearable level and am now trying to go down 1 mg per week. Have a (first) rheumatologist appointment in 3 weeks. My MD is sympathetic but out of her depth. Glad to have found this site. Thank you.
0 likes, 16 replies
tavidu susan29426
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susan29426 tavidu
Posted
Thanks for the support and advice. I'm impatient because in order to reattach my colon, I should be off prednisone or may not heal properly. I guess I have to cultivate more patience....
Anhaga susan29426
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Just want to share with you a common saying we use on here, "It's not slow if it works". This refers to the fact that a very slow taper can often be successful, when faster tapers may lead to relapse and increasing the dose. Think tortoise and hare. Hope you are feeling better soon and that your rheumatologist is helpful.
Daniel1143 susan29426
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tavidu susan29426
Posted
sharon35553 susan29426
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Hi Susan,
So sorry to hear about what you have endured. I too was started on 20 mil and when went down to 12.5 and then to 10 mil which is when the pain returned, not to the worse severity as when first diagnosed but I felt all of the same pains in the groin, thighs and shoulders so I upped it back by 1.5 % today and will see if it helps.
I dont want to stay or return to the 20 mil which is where I felt reborn, totally at my best but would like to get to a moderate dose where I can tolerate minimal pain.
Its a vicious cycle and only we can determine when we are able to maintain a dose that is beneficial to us.
Godd luck & feel better,
Sharon
lesley234 susan29426
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I was diagnosed with PMR 3 years ago and put on 20mg. Now down to 6 but, I had to have an ileostomy in May of this year. That was after an operation for a blocked bowel which then perforated and I ended up with faecal peritonitis. Due to see my surgeon soon as my blood work is not good but I think he will want me off steroids before he does any reversal.
susan29426 lesley234
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Sounds like we're in a similar situation. Best wishes to you.
FlipDover_Aust susan29426
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wow... scary stuff.
Not sure why you need to be completely off pred to have the surgery - from what I know lots of people have surgery while still on pred for PMR. But I'm no expert!!
susan29426 FlipDover_Aust
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Good to know. The surgeon didn't say I had to be completely off, just that prednisone would interfere with healing. I see him again in a month - hopefully this time he'll remember who I am and that I'm on prednisone! He was a bit distracted last time.
FlipDover_Aust susan29426
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just start another post asking who's had surgery whilst on pred - you'll get a few responses which might be helpful. We are pretty good around here :-)
susan29426 FlipDover_Aust
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Thank you. So, I've noticed.
EileenH susan29426
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If the underlying autoimmune cause of the PMR is still active then you have a stark choice really - you either accept it will be a while so you can be relatively pain-free or you accept the pain of PMR to be able to have the surgery. To be fairly pain-free in PMR you will need a moderate dose of pred (if you are lucky between 5 and 10mg but noone can say for sure) for years - it rarely clears in under 2 years and it is more likely to be somewhere in the region of 5 years, plus or minus.
Whatever your new MD may believe - you cannot just "blow PMR out". It is a chronic condition, just like RA, and you will need pred for management as long as the autoimmune part of the illness is active. There is some thought that an initial high dose may lead to a shorter disease course or easier reducton - but however high it is, it won't cure it. This is a long haul condition.
People have had hip and knee replacements while on pred - and healed successfully. However, I imagine gut surgery is a rather different kettle of fish and one where slowed healing is a rather risky business.
I know this isn't what you want to hear - but there is no point saying you will be able to get off pred quickly when it is very unlikely. Trying to reduce at 1mg a week is also not going to help you get to a low dose except if you decide to put up with the pain and stiffness to have the surgery - it is possible, I lived with undiagnosed and unmanaged PMR for 5 years - there are ways of getting moving in the morning, the more you can move (but gently) the better you feel as the day goes on but there is little that will help with the pain, ordinary pain killers don't really help unfortunately. Some people find NSAIDs (ibuprofen for example) help a bit as they do combat the inflammation to some extent, but they increase the risk of bleeding and won't be acceptable during the surgery period.
And in case you didn't know - to help reduce the dose you need to make some lifestyle changes to rest apropriately and avoid the activities that cause the pain. Your muscles remain intolerant of acute exercise - and that will remain the case as long as the disease is active. With very slow and gradual training you will be able to manage more - but it will be a long time before you are back to your pre-PMR status.
susan29426 EileenH
Posted
Thank you, Eileen, you answered the question I was about to ask. I think I'll try the dead slow taper from where I'm at - which is with manageable pain - rather than try to get pain-free first and then taper. I am concerned that I'm developing GCA - get a cramping sensation in my neck and discomfort in the lower back part of my head. To your knowledge, is there anything about prednisone dose that can influence that?
EileenH susan29426
Posted
It you develop GCA then you will need a much higher dose than for PMR - and there won't be any messing about wanting to be down to a very low dose because of the risk of loss of vision.
As for tapering from a status where you still have pain - if you have pain it is a sign there may still be excess inflammation left over after the dose of pred has done its work. Some people are never fully free from pain - but if you go too low the inflammation will build back up, like a dripping tap will fill a bucket eventually.