Is it advisable to stay at ...say 8mg pred?

I have had PMR & GCA since Feb 2017. It has been a rocky ride with all sorts of complications including Pulmonary Embolism & Pneumonia. Have got down to 6mg last year (summer 2020) but at 5.5mg troubles with pains every where. Had knees Xrayed but although nothing showed to warrant the pain. With Dr permission, upped to 7mg but no good & went back to 10mg. Now down to 7,5 and pains beginning to be felt in knees, back, shoulders, arms & other areas. Trying to go down to 7mg. Rhumy wants to take me off preds as says they do no good to other organs. (Have only had tel apps since Covid & seemingly a different Rhumy each time. They are evidently in short supply.) I felt really good at 8mg & life was worth living & wondered how inadvisable this is, long term.

I do not check my computer all the time, so delay in checking likely!

Di

[piglette]

If you feel happy at 8mg why not go back to that dose? When you feel like reducing again you can then give it a go. It is never worth giving it a go if you have some pain, PMR will always win.

[PMRpro Ambassador]

PMR is a chronic illness - and the median duration of management with pred is just under 6 years. I have been on pred for 12 years, had PMR for over 16 years. I have no organs that are crumbling - in fact, I need the dose I'm on to help keep the atrial fibrillation caused by the autoimmune part of PMR in check.

Unless the rheumy can offer a realistic alternative diagnosis and management - why should you force yourself to reduce to a dose where symptoms return? The management strategy for PMR is pred.

[Hidden in reply to PMRpro]

Thank you so much. Feel better already!Di

[kulina]

I felt great at 8 mg and 7 mg but reducing from 7 mg was very hard. It took me a little over 2 years to finally get to 5 mg. I kept on reducing and then going up because I didn't feel well. Are you taking the full dose in the mornings only? Do you know how long does it take for Pred to reduce your pain? I was told to take the full dose in the mornings (about 7 am) but I didn't feel well until about 1 pm. It takes about 6 hours for me to feel relief from Prednisone so I divided the dose 2/3 in the morning and 1/3 right before going to bed. The 6 hours it takes to make me feel better is right about the time I wake up. I've always divided my dose. Don't worry too much about your doctor, they all want us to get off of Pred asap but auto-immune disorders have a mind of their own and you need to function. Being in pain all the time is awful. I've had PMR since 2016 and I'm finally down to 3 mg Pred. Physical Therapy also worked wonders. I've gone to PT about 3 times during these PMR years and it really helped. I also found (and this doesn't work for everyone) that CBD oil helped with the reduction. Make sure you get the best oil on the market. A lot of them are blended with other oils that you don't need. From my experience try to stay at the dose that makes you feel good for a while, have some blood work done and if the inflammation is down try to reduce again but don't get disappointed if you have to go back up. The reduction from 7 mg to 5 mg is the hardest. Good luck and let us know how you make out.

[Hidden in reply to kulina]

Thank you so much. I do take in th am. Not an early riser. But saw a new GO yesterday and she was great. Put me back up to 10 for 3 and and hopefully down to 8 eventually. She is happy forms to be there rather than live in discomfort. She seemed to know a lot more about it than my previous GPs. The surgery has recently changed had completely. Maybe a new broom but very comforting.Thank you so much. Sorry for delay in replying but do not check daily.X

Di

[PMRpro Ambassador in reply to Hidden]

Hallelujah - another with sense!!!!