Prednisone...UGGH!!!

Hi All,

I have RA and have been on prednisone for 30(+) years at varying doses. I wouldn't know even where to begin to tell you all the side effects I have had and continue to have. I was a Nurse by profession and had to leave my career last Nov. ate 53 years old mainly because of the effects of long term glucocorticoid use.  You can argue that being a Nurse I should have known.  Back in the 80's, I guess it was common practice to prescribe this medication and I had heard it could cause osteoporosis but never bothered to research long term effects of continued use.  All I knew was that little bottle of steroids kept me working and made life tolerable. Well I am now homeless and have been staying at my sisters. I have a applied for disability but you know how that goes. I have no insurance and am unable to see a Rheumatologist. I have been going to a local free clinic where they refill my prednisone with great hesitation. If I quit the drug it will kill me and continuing it is sending me to an early grave.  I do have Cushing's and am sure my adrenals are atrophied as the slightest decrease in the prednisone will cause terrible withdrawl symptoms.  If I should get approved for Medicaid would it be worth seeing an endocrinologist at this point to see about getting on hydrocortisone? Also, I have severe osteoporosis and lately have had more than the usual pain in my bones some days the pain in my feet and hips makes it hard to get out of bed. I did tell the PA at the free clinic about this and he said at some point I should be checked for osteonecrosis or AVN. Have any of you heard of this? Another side effect I knew not of...Uggh! Anyway thank-you for letting me vent and any advice would be well received.

I agree, I was on steroids for5 years and lost bone density and a tooth, plus it gave me high cholesterol levels and my blood pressure was high too! Anyway thats how I got off it. 0.5 mg every 3 weeks, it took me the best part of a year to do it but I did eventually manage it, sometimes I had to take longer than 3 weeks for my body to adjust to each lower dose.

Try taking 0.5 mg less one day and normal dose the next for 3 weeks and then drop the 0.5 mg fo the next 3, but do it under the care of a doctor or with their knowledge because it is very painful and you need to up your pain meds to initially cope with the lower doses.

I am back to my normal dose of pain meds now but initially needed a higher dose plus my specialist put me on an anti depressant to help with nerve pain, I'm no longer on that either but it helped me greatly with sleeping and pain increase.

I feel so much better off it. Have you had a bone density scan? there are meds available to help your bones too.

What dose are you on? Can they replace the prednisone with some of the better RA meds?

Good luck with it all, golitho

Thank you all for your kind words. During the pst 30(+) years I have been on every RA med imaginable from MTX (while still experimental) to Rituxan which did me in at the cost of 50K every 8 months. I also have been getting Reclast infusions yrly for my bones. But I guess that will have to change now too. During those years I had to move a lot and saw several different rheumy's. But looking back not until 18 mos ago did any of them ever question how long or why I was still on the the prednisone when one told me I should not be taking 800mg of ibuprofen twice a day with the prednisone. And I guess with all my ailments at that time is when I finally started looking into it. I find it odd that not one of them in all those years ever brought it up and when I would have a bad flare they would just increase it! I have pretty much lost faith in Medical doctors. Now the only thing I take is prednisone and the yrly reclast. I made some dietary changes and you know what? I don't feel any different than I did taking all those DMRDS, Biologics and NSAIDS outside of this recent "bone pain" But as they say...prednisone masks. But yet its always been a constant for me. Golitho my last bone density was in 2011 showing the severe osteoporosis am wondering if Reclast is effective while still on the prednisone? And I know the pain of going off the prednisone will be bad as I have tried and ended up hospitalized. But yet the desire is great! Can I ask what pain meds you are taking? And dear Neena I will be seeing an ortho just as soon as I am able. Thank you all again for your kind words, advice and support you don't know how good it feels to finally talk about this.

Hi Chartreux. I am so sorry to hear about your car accident and the pain you suffer. Do you go to a pain management clinic? It seems that I too have many reactions to pain meds and this just started within the last yr. I had surgery in feb. of 2013 and everything they gave me narcotic wise I immed. vomited. I don't know why that is..not that I took them often but they had never been an issue when I did need them. So about 6 months later I tried taking one Percocet the next day I was violently regurgitating all morning b/4 going to the ER. They couldn't tell me what was wrong, gave me a bag of fluids and sent me home. The next day I was fine...but am now afraid to take any narcotic. I do hope your upcoming tests go well. Thoughts and prayers with you as well.