Tapering much harder the second time around.

[Karenjaninaz]

Been on pred since Nov 2015 for PMR. Few issues with flares and reached 4.25mg in 2021 when to ER for hypoxemia/ asthma exacerbationafter flu shot 2 weeks before. Got loaded up on steroids in hospital for 4 days and sent home with Rx 40, 30, 20 mgm decreasing weekly. I have now secondary adrenal insufficiency - of course-without any PMR symptoms.

I am now on 8mgm tapering to 7.5 dsns . When I drop 1/2 mgm I have alarming symptoms- if my heart speeds up to say 104-114 beats-in the morning with activity I get chest discomfort. Had a cardiac check up= cardiac calcium score =0 (excellent) normal EKG and BP but will be 81 next month. Afternoons I feel OK. Taking pred at 2AM with a protein drink.

I am so discouraged /Besides being on O2. 24/7 I fit in exercise in my home “gym”(stationary bike, treadmill and NuStep) when I feel halfway decent and that helps. It’s rather difficult for me to walk outside needing oxygen .

Looks like 1/4 mgm might be the only drop I can try.

I crossed my mind I might be leaving this earth before I’m close to being done with pred or at least a reasonable low dose.

[Omanain]

Sorry I can't be any help, but hope you can feel the virtual hug I am sending you x

[Karenjaninaz in reply to Omanain]

Thanks, it helps to vent to people who “get it”.

[ab58sf]

All this is so helpful to me. I have been on pred one year now and it concerns me. So those of you on it for years encourage me to keep on. PMR is relentless and the pain unbearable without the pred. Praying for all of us that we do not have horrible side effects and can taper to the best dosage to keep us moving forward. Blessings to all.

[Gossiplady]

hi Karenjaninaz! I am 85 and am not ready to go upstairs! I have been using the 0.25mgs reduction for around one month very successful so far. Slow slow slow say the beloved ladies. After two years of this awful disease, and down to 1.50mgs I am just simply terrified of flares. Tried 1.25 and no thank you. Let us both and everyone else do the snail pace and keep smiling.