Could anybody help me with my current situation. I was put on 15mg prednisolone in January as I had severe pain in arms, shoulders, neck and hips. The pain went away within 2 days. I have been tapering down every 3 weeks. I saw my rheumatologist when I got to 3 mg as I see him every 3 months, he then reduced me to 2.5mg for a month. Hoping to reduce and come off totally if at all possible. I’m now just beginning week 4, but having trouble with my bowels, my stools have been extremely loose and not formed at all, but not my norm at all. I’m really keen if possible to get off the pred, but the rheumatologist told me if I had any symptoms of adrenal crisis then I must contact him and then I would just go back up to the last higher dose and be on that for life.
My question is has anybody had this bodily issue before and could it just be my body trying to adjust to the lower dose. I haven’t contacted him just yet I’ve held off in the hope this will just sort themselves out as I have no other symptoms and no pain. Could this sort itself or could it be a sign of adrenal issues that I need to be worried about?
Any help would be appreciated, many thanks.
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Daisy1624
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1) I don’t know what your doctor’s understanding of PMR is but to get you off Pred in under a year is not a recommended approach. Pred isn’t a cure and all it does is keep your inflammation from doing damage. Meanwhile the autoimmune activity that produces the inflammation is still there and will burn out when it’s ready which is usually in years not months. It isn’t unusual for docs to say that you take a course of Pred, tail off quickly and will be well. There seems to be much misunderstanding in the medical world, even amongst Rheumatologists, of PMR and listening to expert docs puts this into perspective. So, the reduction of the Pred is to find the lowest effective dose for you slowly and surely to avoid a re-emergence of pain. If you have no pain or niggles currently you may be one of the lucky ones but even low doses can be very effective. You don’t know it has burned out until you’ve been off Pred for a while.
2) The upset gut could be poor adrenal function but any change in bowel habit for more than a few weeks needs investigation afresh so as to rule out other conditions.
I’ve not actually seen my doctor since that last appointment where she referred me in January as I’ve not had any other issues, all the information I’ve gained has been from either the rheumatologist or from this site to be honest. I’m trying to learn all the time. I did wonder if it was rheumatoid arthritis at first but I’ve been told it’s not. I do have autoimmune issues and it appears that when you have one you often end up with more. I’m not one for going to the doctor at the drop of a hat so thought I would ask about the loose stools on here but going and wasting her time. Thanks for the info.
That could be a sign of poor adrenal function but there are plenty of other things that can cause changed bowel habit and so they need investigating and ruling out.
Did the rheumatologist give you a diagnosis? That approach to PMR isn't common - only about 1 in 5 patients is able to stop pred in under a year. If the symptoms don't return that is great - but you wouldn't be the first to discover that 1 or 2mg is more than enough to manage the inflammation in PMR so there is time to go. I'm a bit taken aback that the rheumy seems to be focussing on adrenal function above all else!
I initially went to my doctor with tremendous pain in my arms, shoulders, neck and hips. As I’m on thyroxine and have hashimotos we tweaked the thyroxine dosage but that had no effect. She said she would refer me to the rheumatologist who I have been seeing privately as the wait time was in excess of a year. I’ve had loads of bloods done and have very high doses of inflammation in my body, he’s also been testing me for Lupus, which I don’t think I have. He said the only true way was to try the steroid option and if it was PMR I would see a difference immediately and I did, in a couple of days I was pain free, so I’m fairly confident that what I have. I think the fact that I’m only 53 and I responded so well to the steroids, despite having massive side effects, we are hoping that I can come off it completely at some stage. It’s just this bowel situation I wondered if that could be because I’ve dropped in dosage. I’m still under investigation for connective tissue syndrome.
Ah well - I was 51 when mine started. I wasn't diagnosed and finally got to try pred at 56 - and had a miraculous response in under 6 hours to 15mg. But I haven't been able to get off quickly - obviously it had been going on for 5 years without burning out anyway!
The bowel problem COULD be due to adrenal function not returning at the same speed as the pred is being reduced. But it is a basic rule that changes in bowel habit should be checked out and not ignored. You have been dropping pretty quickly so that is the most likely - but you can't be 100% sure.
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