Thank you all!

[AuthorJ]

I want to thank everyone on this forum for all the knowledge and support that you give. My wonderful rheumy retired in March. Before I had met with my new one, I had an adrenal issue of feeling dizzy and so very exhausted due to way too much physical activity and an emotional time. I knew what to do! I increased my pred on my own as I was between doctors. I took control!

Today I met with my new doctor who told me I’ve been on prednisone too long (2 1/2 years) and I need to get off it soon. When I asked her how long people usually get off pred with PMR she answered two years. I now am making appointment tomorrow with a different doctor! I again am taking control! The insights you have shared have helped me take control of my PMR journey! Thank God for you all.

[123-go]

We'll done! 👏👏👏

[AuthorJ in reply to 123-go]

thank you 123-go

[Elispeth]

I second that 👏 👏 👏!

[AuthorJ in reply to Elispeth]

thank you for your support!

[PMRpro Ambassador]

Well done - wonder how many patients she has had and where they all went after she failed them ...

[AuthorJ in reply to PMRpro]

one person is one too many! I am happy to say that I asked my former rheumy’s nurse who I should get- wanting someone who supports patient input. I now have an appointment with her!!! Thank you for all your support and wisdom!

[lillisoph]

I have been on and off prednisone since late 2018 for PMR. With two exceptions, when my dosage was 10 mg for significant flares, for the most part my dosage has been 5 mg or lower from which I have been able to taper down slowly to zero a number of times. I am a month away from being 80 years old. I have noticed that stress is key to the timing of my flares. My Rheumatologist at Mt. Sinai hospital in NYC has expressed his opinion more than once that I should not be concerned if my prednisone dosage is 5mg or below.

I hope you find a supportive Rheumatologist like the first one you had. No-one with PMR deserves less! Good luck.

[AuthorJ in reply to lillisoph]

thank you lilisoph. I am now at 5 mg and plan to do begin the super slow method to get to 4.5 next week and on and on on the slow taper until my body screams NO! 🤞 I can get down nicely.

Congratulations on your upcoming birthday! I will be joining you at that number in a little over a year. I have seen docs at Mt Sinai also. Live about 40 minutes north of it. A great hospital. You have a good doc! As I told PMRPro I asked my former rheumatologist’s nurse who I should get. Now will be her patient! As you said no one should suffer PMR with an inadequate doctor

[lillisoph in reply to AuthorJ]

I'm happy to hear you will be back in good hands. I have always received the very best of care from Mt. Sinai Hospital and staff.