Thank you very much for a fascinating presentation. I was diagnosed with pmr in November 2021 and have spent time on the 'steroid flare rollercoaster'. Luckily I have since learned how to decrease steroids slowly without flaring and am down to 3mg per day of prednisolone (I am in the UK). I would like to include a link to this presentation on a website I am currently building. Thank you again for the presentation.

@zootybeano

2 ай бұрын

16 months in with no formal diagnosis, I'm down to 4 from 20. A rheum mocked me for my taper , seeing 13.25! I learn more on Facebook and Mayo PMR page. Hubby is a retired internist so I'm forced to use him as my RX doc. Just like he said, I fell off a cliff, playing pickleball one day and couldnt roll over in bed a few days later.

I walked 18 holes of golf on Tuseday, felt great. Teo days later I couldn't get out of bed. Dx PMR.

My GP started with 60 mg/dly, then 40 mg for a couple days and then 20 mg for three more days for a total of 15 days starting out. I have to wonder whether the dosages are too high.

I had PMR and sadly I dx myself after an elderly person recognized my symptoms, sadly all the doctors and specialists who I went to just looked at my markers, blood work and labs and could not even help me. By coincidence I had prednisone for hammer toe about same time and that’s what stopped all the aches.. I was very disgusted with lack of care , interest and compassion of doctors

@zootybeano

Күн бұрын

Are you able to get enough then to treat yourself? I'm accused of diagnosing myself too but hubby is a semi retird internist, so we muddle through. My PCP refuses to believe I have PMR, lol. Changed to Direct Primary car.e

Excellent presentation. I am a case of "refractory PMR" treated with prednisone initially with the subsequent introduction of methotrexate and later on leflunomide -- both were discontinued due to side effects or infections. My lowest effective dose of prednisone was 10 mg which was only achieved after 12 years of treatment with prednisone. Many relapses occurred during my 12 years on prednisone. Actemra (tocilizumab) was initiated on January 1st, 2019 and prednisone was discontinued one year later. PMR is in remission except for a relapse when Actemra wasn't available during Covid. I have minimal side effects from Actemra in 5+ years of treatment with Actemra. Attempts at decreasing my exposure to Actemra have been unsuccessful. I would like to stop Actemra but I never want to take prednisone again.

@Violet-nn1rm

13 күн бұрын

I was recently diagnosed and gave myself first injection of Actemra a few hours ago. I am grateful for your comment about your experience, I am a bit of a wreck. lol. Wishing you the best outcome, Mike.