Do not want to take steroids.

Have you discussed the dosage they want to start you with and the length of time you might be in steroids. One doctor wanted to stat me on 40mg - that was unacceptable to me. I landed with a doctor who was willing to work with me even if I did not take oral steroids. Following a bout with Covid I took 10mg /day and then had to titrate down from there. It took 6 months. I do not regret it because the pain went way up following Covid. The decision is yours and wanting to avoid steroids is understandable. Making the best decision is going to be based on getting the facts and making a totally informed decision and not a hearsay emotional decision. Or, if it is an emotional decision, just admit it and move on.

I totally understand you not wanting to take steroids. I never even take a pill for a headache as I am reminded how animals suffer during testing. I have of course taken the necessary drugs for two weeks after each joint replacement as it was necessary. I will never forget the pain I was in for 3 weeks before finding it was PMR and steroids were the best option. As my lifestyle is an active one, healthy eater, non drinker or smoker I was assured steroids would allow me to get back to normal. I did read about people trying other methods and ending up on steroids in the end. I started in May this year, had a problem when dose was dropped from 12.5 -10mg but that was a massive learning curve. Found this forum which really helps as I get no help from Dr here in the UK. Read as much as you can about inflammation and how to stop it. I am on 6mg next week. Did a big physical challenge last week, 700 metre swim, 700 metre SkiErg, 7 minutes Airbike, 700 metre row, 7k spin bike, 70 floors stairmaster and 7k curved treadmill. No flare up after just normal aches and pains. Pretty sure I would not have been able to still be this active without Pred. Because I am ticking all the boxes this should be over after a year of steroids. If once I have stopped and a flare starts up then I will try a 1mg for a couple of weeks and this is from an animal loving vegan woman. All these months later I still wince when I take the drugs in the morning but they work and mean I have my life back.

I had to take thm e long term, I could hardly move. Low dose now after 2 1/2 years.

I agree totally, you know you own body and know what you need with a flare. I found I go up for a week then I get back . But I was on 6 mg to 2 months got really stressed with breast cancer and upped to 11 mg and got down to seven in less than 2 weeks.
I found that when i get under 8-10 milligrams you have to stay on that dose longer to taper off. I have been on it for 2. 1/2 years and nothing else helps. I really don’t have a choice. Just taper slowly. I seem to flare at 5mg without stress. I guess my attack is not over or in remission yet. Best of luck !

What medication helped you off of prednisone. I took methotrexate for 3 months and it did nothing, but that was early on

I got off Prednisone when the biologic Actemra (tocilizumab) was tried. I was on Prednisone for more than 12 years to treat refractory PMR,

I had mixed results with methotrexate. I took methotrexate for more than a year and I was able to decrease my Prednisone usage somewhat. The whole purpose of methotrexate is for its "steroid sparing" effects. It doesn't help PMR that much but methotrexate does allow some people to take less prednisone.

Thank you for the info. How long did it take it you to get off of the prednisone with that? And how long did you have to stay on Actemra after stopping prednisone.
Maybe there’s hope for me 😊
I glad you finally got something to help you off of it. I definitely will look into it.
Did you have bad side effects from it?

Actemra doesn't work as quickly as prednisone works to relieve pain. Once Actemra starts to work, it is difficult to predict if a relapse will occur or not. I don't need to take Actemra every day. I currently can't stop Actemra because the pain returns and my inflammation markers increase. It took me about a year in total to finally get off prednisone completely. Now I do a monthly infusion with Actemra.

If PMR is the primary problem, Actemra isn't FDA approved for this diagnosis. However, another biologic called Kevzara (sarilumab) works similarly and is FDA approved for PMR.
https://www.kevzara.com/hcp/pmr?utm_medium=cpc&utm_source=google&utm_content=PMR_Core&utm_campaign=G_24_KEVZARA_SEM_HCP_PMR_Branded_Condition_PMR_EX&utm_term=kevzara%20for%20pmr&gclid=Cj0KCQiAgJa6BhCOARIsAMiL7V99TOMmC0KsPSIxTVWPsLPBb9eIoXhgI2qPphlTZgpkV_xdV-dOoKIaAga-EALw_wcB
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Actemra is only FDA approved to treat GCA.

PMR research hasn't advanced very far for finding alternatives to Prednisone. I was on daily Prednisone for more than 12 years to treat PMR alone. I also had a long standing history of inflammatory arthritis before PMR was diagnosed. My cumulative dose of prednisone over 35 years was astronomical.

I don't know how well Actemra will work for you. My side effects from Actemra are minimal. However some people do have serious side effects from Actemra.

Thank you.
Interesting because a lot of people with pmr have gca. I’m glad it helped you. Mine attack I think was brought on from the first 2 COVID vaccines. Wish I never got them. I have a few other autoimmune diseases.
Stay well and have a happy healthy lidat season 🤗

"Interesting because a lot of people with pmr have gca."
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That was basically why my rheumatologist wanted to try Actemra even though I was never diagnosed with GCA. For me to get Actemra for PMR, it needed to go through an approval process. The determination was that I should be treated with Actemra "as if" I had GCA.

At the time my rheumatologist was very excited about the research being done with Actemra to treat GCA patients.