I hear many people describe a very bad body pain when going off prednisone. I have been on it for 4 months now only 20 mg. I am not tapering but still on it. No side effects until the last week. My body hurts, not really joints or muscles just body discomfort. I am also on Warfarin for another issue so it feels like my blood hurts or is tender which I am not sure what that is about. Any help with an explanation about pain from prednisone would be appreciated. I have Interstitial Pneumonitis/Hypersensitivity Pneumonitis. Breathing has improved (going for follow up tests this week). Thanks!
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rottiro1
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" Hello rottiro1...Do be careful with taking prednisone..last year I was on them for months..But the side effects that I know have to live with are horrendous .. last week I had my fev1 results which are now fev1/ 22 and this time last year was fev1/ 44..Last week after many tests I have been diognosed with Addisons disease...And type 2 diabetes..to name but a few problems that was all caused by over use of steriods..don't wish to be a scare monger..But to be careful when over use of steriods as these consequences. ..Megan..."
I was on prednisone for over a year. It was supposed to be around 9 months, but like you, the pain came back. The Dr. I chose was excellent. He let me go back onto the dose just before the pain came back and taper again from there. Thus, the extra time on the drug. I had, (have) PMR. Polymialgia Rhumatica which means I have pain in almost all of my joints.
Prednisone is like a wonder drug but at the same time it has it's drawbacks. If you follow the regimen prescribed by your Dr. you should not get into trouble. I still get it prescribed occasionally for gout and it works very quickly. My advise is trust your doctor but ask many questions of him/her.
I have HP to. Coming off predisolone too quickly can make u feel awful- flu-like is how I felt. But taper and it will still be bad but much safer! Talk to your doc but stick to your guns if you think it is right thing to do. Have u considered a steroid inhaler- May not be suitable but worth having a conversation about. Good luck.
Hi Goat-Lady Has your breathing improved after the taper or did symptoms come back? In addition to prednisone I am on Symbicort inhaler that is AMAZING and helpful. I am curious to know how others do with HP once the prednisone is stopped. You can private message me if you want.
Hi great to hear that symbiotic is working. I have been using a similar combination- oxis and pulmicort- as I get side effects with long acting meds I take the components separately. And atrovent first- or the oxis doesn't work! Quirky but that's HP. Sadly the HP does keep flaring up. Am off to GP today to discuss trialing again low dose azothoprizine but won't take the pred. Happy to up the inhaled steroids. Blood sat low. Fed up as have been ok for months.
Sorry you are having issues. If I can ask a few questions did you have fibrosis when diagnosed? Did you have a lung biopsy for definitive diagnosis? My numbers were going down fast especially DLCO. I had a lung biopsy as they thought I had bronchiolitis. I had nodules and granulomas so they think it's HP. I didn't have much fibrosis yet and have been on Prednisone for 4 months. I just had my follow up tests last week and both pulmonary function tests and HRCT show improvement which is great but I worry what will happen going off Prednisone as I want to avoid the inflammation turning to fibrosis. I did move also and feel better. I think it could have been either my down couch that I only had the last 2 years or from medications that can lead to HP.
Hi, my story is similar. Admitted to AnE -lots of tests. Too ill to have biopsy- surgeon refused twice now. Firm diagnosis of HP but now with asthma thrown in for good measure! But I have been off pred for about 6 months and lung function is improving steadily. I have flare ups but recover ok at the moment. I am waiting for a CT scan to check for fibrosis - the Consultant is optimistic that I have avoided it. I know what u mean about the anxiety over the fibrosis especially as a definitive allegen/s haven't been identified. The route I am now going down is to stick with inhaled steroids and bronchodilators and v low doses mucolytics. I have 3 monthly spirometry and I measure my Oxy/peak flow regularly. I reckon if things turn pear-shaped I can react quickly and will go back on Azothiprine if necessary. Aiming to stay out of hospital this winter! Fibrosis takes a while to happen - so there is reaction time. Not sure if this helps.
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Has your breathing improved after the taper or did symptoms come back? In addition to prednisone I am on Symbicort inhaler that is AMAZING and helpful. I am curious to know how others do with HP once the prednisone is stopped. You can private message me if you want. 
Does anyone take prednisone daily? How many milligrams?
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