Do not want to take steroids.

I didn't want to take Prednisone either. It wasn't as though I was given a choice. It was more like self preservation and I had to take Prednisone!

I don't take Prednisone anymore. Looking back on why I took Prednisone --- I still say I didn't have any choice. Perhaps, I wouldn't have taken so much Prednisone for as long as I did. There were times when better treatment options were available but it was easier to take more prednisone for everything.

There were other times, when the pain wasn't PMR. Prednisone wasn't prescribed for every kind of pain. Not all pain was the same but it all seemed like PMR.

Then there were people on the internet who didn't know my entire medical history. They identified themselves as being a Pro and had some kind of entitlement to know things my doctor didn't know. The internet people weren't able to prescribe Prednisone or to do any diagnostic tests. They would tell me to take more Prednisone too. Eventually I stopped listening to them and I was able to get off Prednisone in spite of their opinions that I should take more Prednisone.

The same internet people were also wrong when they thought the medication that enabled me to taper off prednisone was worse than prednisone. Had I listened, I would still be taking Prednisone.

I did have a choice some of the time but it was hard to know what to do at the time. Prednisone wasn't my best option all the time.

PMR took about 4 months to diagnose for me. During that time I was very similar. I was in so much pain that I was not sleeping, could barely get out of bed, and I went from very active to barely active all day. It would get better by afternoons but not to the point where I could do much. I finally self diagnosed myself. My wife was on steroids. So I tried it and was pain free in about 4 hours. I knew the issues with steroids and was reluctant to keep taking them. I thought well at least until I get a Dr to agree with my diagnosis. There just isnt or wasnt at the time much else that makes it go away. I was only on for 6 months and weaned off. I had some pain but worked through it. 6 months was enough to cause issues. You seem to be informed on the issues with steroids. If I could have stayed active without them I would have tried to work through it. But the inflammation is not good long term either. Diet, exercise, and trying to reduce stress are helpful. Good luck on your journey.

If you feel you have a choice not to take steroids, then PMR may not be affecting you as much as some of us who had no choice but to take something, anything, to be able to function. Two months of only 4-5hrs of broken sleep each night from the pain, not being able to turn a door handle or drive, and struggling to fix even basic meals made prednisone necessary for me. I was prescribed an NSAID (non-steroidal anti-inflammatory drug) for a week before going on prednisolone, but it didn't help. I recall telling my doctor after the NSAID failed that at that point I was prepared to take anything that wouldn't kill me, the pain and lack of sleep was so bad. She wheeled out the steroids and I grabbed them.

If you're able to manage without steroids and without having too much potentially damaging inflammation, it makes sense not to take them. Let us know how you go.

If your lab tests show significant elevation you need to consider all consequences of systemic inflammation. Options include an anti inflammatory diet such as Mediterranean with gluten avoidance.
Supplements that can help are turmeric, vitamin D, CoQ10 and melatonin.
When you research them you will find they may downregulate cytokines
that can be harmful.
All effective drugs have side effects including NSAIDS and Plaquenil.
Evaluate your benefits and most risks can be reduced.
When I took prednisone long term I mitigated them with an eye exam,
Dexascan, vitamin D3 with calcium antacids, home blood pressure and
glucose checks monthly. My cardiologist recommended atorvastatin for
cardiac risk management and that has been found to be effective against systemic inflammation. I always took prednisone with food.
If you have no other chronic conditions you could do well with a therapy
trial. Response to prednisone is often early with 20 mg of prednisone.
Do you own research and don’t suffer.
inflammation as well

I was not diagnosed for 15 months, in severe pain and it significantly reduced my mobility. I didn't realize how much it impacted me mentally and physically until I started taking prednisone and experienced relief. I had to retrain my thinking and three years later I still catch myself estimating how far I will have to walk from a parking spot to my destination. If you can function normally without it, go for it but if you can't, it is a slippery slope to sitting in a chair all day and having a "patient" mindset.

Low Dose Naltrexone.
I was diagnosed in September and, like you, did not want to take prednisone. My father had this disease and was on prednisone for over a decade, could not successfully wean off.
My naturopathic prescribed LDN and many supplements. My diet also changed...eliminating sugar, alcohol, packaged foods, red meat. I am doing well! This protocol is working for me. I am back to walking 4 miles a day and swimming. Research LDN...virtually no side effects. Hope this helps!

I did not go on steroids. And so far, very glad I didn't. My pain started in Jan '24 and my legs for the last few months has been much, much better. Arms are still painful, but I've been walking every other day and even doing strengthening as before with very light weights. So far, so good.
I have my inflammation markers checked every 4 mos or so. Last week, they were extremely low. Back to pre-PMR levels.
I wish you the best.

Hi
Was diagnosed with pmr a year ago . I was well , my symptoms were mild manageable and in no way disabling
Whilst the rheumatologist was telling me to take pred , the risk benefit analysis of taking serious and damaging medications starting with prednisone just didn’t add up for me . Against his advice I chose conservative treatment with non steroidal meds ( used minimally - everything has a come back on some organ or other)

I did this successfully for a year , and continued my usual active lifestyle which included travelling OS , long haul flights , running around after grandkids , gardening etc ..,

This month I was diagnosed with large vessel GCA , no temporal involvement.
So now absolutely no choice but start high dose pred , and Actmera.

I’m so glad that at least I’ve avoided an additional prednisone load over the last year that would have added to my cumulative dose .

One reason to consider prednisone is to lower the
incidence of evolving into Giant cell arteritis.
I would consider an ophthalmology exam with PMR.
Having 3D ultrasound of your temporal and carotid arteries early on when starting steroids is a consideration if sed rate and CRP are very high.

Good and bad news. My lab results indicate I don't have this diagnosis which is fantastic. However, my doctor doesn't know what I have. She suggested I go ahead with the Prednisone as there is most likely inflammation. I declined and I will closely monitor my symptoms. I do appreciate all of your support and wish you well.

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