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thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably won't respond to everyone, but I am reading your replies and feel so grateful for them.
One thing I have not read anything about so far is whether or not people have experienced any personality changes from the prednisone. I was recently on (discontinued now) some other medication (for something unrelated and totally different, not auto-immune) and that medication changed my personality: I was anxious, irritable, gained weight, and had fatigue and muscle weakness. After a year of that I said no more. In only two weeks after discontinuing I felt like myself again. I changed my diet instead, stopped alcohol, and brought the condition into better control without the medication
I am terrified Predinose will take away the pain but change my sense of self and how I am in the world. Or create worse physical problems. Everyone seems to hate being on it. I really, really like myself. I don't want a medication to take that away.
Thank you again for so much kindness.
Replies to "thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably..."
Hi @deborah57, I had PMR for a year, undiagnosed, pain on a scale of 10 out of 10 throughout my entire body. Then stranger symptoms started. A physician friend got involved, and advised me to push my PCP for specific blood tests. Turns out I had Giant Cell Arteritis (GCA). I was put on 40 mg of prednisone daily and tapered every two weeks. The prednisone at that high dosage made me super energized, talkative, hungry and unable to sleep more than a few hours a night. PMR and GCA made me anorexic and I lost about 15 lbs. My hair really thinned out.
My rheumatologist advised me on the taper and ordered monthly CRP tests for inflammation. My taper went well and I was off prednisone in about a year and a half, no flareups. In October, I will have been off it for two years.
I returned to my usual personality as the taper diminished and now my hair is as thick as it was before.
My mother-in-law also had GCA and was terrified to take prednisone, but the doctor told her she could have a stroke or go blind without it. She lived to be nearly 100.
While prednisone has its drawbacks, it can also be lifesaving. Imagine the sufferings of thousands, maybe millions, of people before us who had PMR and GCA (first identified in the 10th century in Baghdad) before the development of prednisone and discovery of its usefulness in treating PMR and GCA.
You will get through this!
What Tragedy @deborah57 ! I mean the only upside to me of having to supplement my RA infusion with Prednisone is that I become absolutely euphoric! I have energy and a positive outlook and hope and all things good. My pain goes away - life is wonderful!! I’m glad I didn’t discover that in my 20’s or my bone density would be shot. At 73 I am disciplined enough to not even ask unless it is merited. But I certainly don’t regret the need to.. except For the appetite increase. 🙂
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At the higher doses of 20mg or more, it is definitely possible to get very irritable, have mood swings, maybe strange euphoria, bursts of energy but you know that its Prednisone talking and you just have to ride that out to benefit from pain relief. It is not likely to change your personality in any permanent way !! At doses of around 10mg or less, personality changes are far less likely. However being in chronic disabling pain can certainly change your personality!!
If your pain levels are tolerable maybe Prednisone is not for you. If i wasnt completely disabled by the PMR i probably would not have turned to Prednisone, especially after learning from this group.