Has anyone with PMR been able to get off prednisolone?

I came off prednisone in mid-December after being on and off it for over a year. Coming off my first taper in June I had worse symptoms than before I started taking it, mostly in my shoulders which were unaffected prior. It's been a rough few months with pain, fatigue and inflammation but my lab tests show that my pituitary and adrenal function are normal now which was a big concern for me being on prednisone. I never liked the idea of a drug replacing my body's natural hormones.

As far as treatment without meds, I am trying different things like acupuncture, faschia stretching, kinesiology and have recently been looking into pain reprocessing therapy which I'm not quite sure about but we'll see. In the meantime I'm trying to stay hopeful and positive despite the discomfort. I may give in and end up back on prednisone at some point but trying not to.

@gippy same here re aches after dropping down a level. Assume this is a withdrawal symptom. Just makes me determined to get off the stuff

Good luck. Slow process but hope we both get there.

@rosi75
Strange condition; mine began with the shoulder pain. I empathise with the pain and fatigue. Everyday activities drain my energy. Rheumatologist said this is typical. Good luck with the alternatives to medication. I found the John Hopkins Yoga series a great help.
I hope you can continue without prednisolone; the comments have been encouraging so I remain hopeful. All the best.

That’s great news- a good result for you and gives me hope. My rheumatologist has had me tapering by 1mg a month but I think 0.5 in these last months ( fingers crossed) might be advisable. Thanks.

I am suffering from PMR for last 2 and 6 months. GP treated for 9 months starting with Pred 25 mg tapering down to 0mg. After 1 month again symptoms appeared. In June 2024 I was referred to Rheumatologist. Had pred for one year. My Rheumatologist started Methotrexate 20 mg when I was taking pred 5 mg. For last 6 months I am taking 20 mg Methotrexate while tapering pred to 1 mg. I will stop pred in April end.
As per my Rheumatologist long use of Pred is more harmful for bones while Methotrexate may affect liver. I was earlier repeating blood tests every fortnight, then monthly and now after 3 months. It was towed monitor liver, kidney function and inflammation.
My Rheumatologist has advised me to stop pred on 01 May onwards but take Methotrexate 20 mg atleast for 12 months to avoid triggering back of PMR. I am convinced. I am now leading normal life after long time.

@gippy I would agree that at least the first time it is worth it to try to get completely off of the prednisone. You need to understand that moving from 2mg to 1mg means you are cutting your prednisone by 50% as far as your body knows. To move from 10mg to 9mg is only a 10% move. That being said you might ask about only going down to 1 and 1/2 mg from 2mg. That is only 25%. Buy a pill splitter and ask your doctor to Rx extra because the second half will often not be usable. Then after a month to six weeks of 1.5mg drop to 1mg and then drop to 0.5mg. If you are good with that taper you should be able to get to zero. Remember that tapering is more about waking your adrenal glands up than it is about anything else. You want that portion of the effort to be successful. I wish you success on your journey.

Thank you both for your remarks. I do find comfort and strength in the experiences of others. Peace.

Good advice from your doctor on tapering. The issue when you taper 1 mg at a time when you get down to the lower doses the percentage decrease starts to go up.
5mg- 4mg is a 20% reduction then 4-3mg is a 25% reduction. 3-2mg is a 33% reduction, etc.
Your adrenals don’t know it’s easy to drop 1 mg at a time but you’re inadvertently increasing the taper percentage wise. At the lower doses it may be important to split the 1mg tablets as needed and/ or pulse with 2mg then 3mg then back to 2 mg etc.
I’m down to 1/2 mg every other day and then will drop to 1/2 every three days etc.
Good luck

@dougschiffman Did you taper at 1/2 mg from the beginning, and what was your initial dose?