r/PolymyalgiaRheumatica

Diagnosed with PMR, even though blood markers were normal. Specialist said 10% of people are this way.

Through trial and error, 40mg Prednisone took ALL the pain away within 5 hours. Kept going down to find a starting dose and decided on 5mg twice a day. 5am and 5pm (hasn't affected my sleep at all)

The pain is terrible without Prednisone like all of you. 5mg twice a day takes the pain away about 60%, but I can tolerate it.

Question - Is the pain supposed to go away 100%? Is the dose high enough? Obviously I want the lowest dose possible as it's not good for me.

I've been reading and I thought the pain has to go away to begin tapering down, which is scheduled for 60 days from yesterday for at least a year.

Prefacing this to say I'm not a doctor so this isn't medical advice. Do get your doctors approval before taking any supplements.

I have a recent dx of pmr after three years of pain and fatigue that was originally attributed to long COVID and fibromyalgia.

My doctor has me taking prednisone 10mg/day until I can see a rheumatologist due to pain, fatigue and the risk of developing GCA and going blind.

I also take gabapentin 900mg and mirtazapine 15mg at night to prevent drenching sweats and deal with insomnia. Effexor 150mg in the morning helps somewhat with wakefulness. Propranolol and candesarten keep my heart rate steady and control stage 2 blood pressure issues.

As many with pmr can relate, the relentless brain fog, exhaustion, post-exertional malaise, heat intolerance and feeling drunk tired is soul destroying.

I happen to have saffron extract 88.5mg and acetyl-L-carnatine 340mg for my teenage child who is dealing with ADHD.

In despair I took one of each two days ago and was pleasantly surprised to feel the brain fog and exhaustion lifting after a couple of hours.

Today I took 2 capsules of saffron extract and 2 capsules of acetyl-L-carnatine.Sometimes 2x of something doesn't give 2x results but I haven't felt this good in literally years.

The brain fog has lifted and I can focus. I still feel exhausted, sweating and shaking from exertion but I'll gladly take the lifting of brain fog and feeling less listless and more motivation.