Prednisone tapering: How did you do it pain free?

Posted by betsyhase @betsyhase, Apr 5 12:40pm

I started Prednisone on 2/6/26 after being diagnosed with PMR. My starting dose was 12.5mg which gave me great relief but not totally. My PCP wants me to decrease by 1 mg per month. My concern is that I am noticing the joints in my hands are still swollen and stiff. This is an improvement from where I started but not my normal. My knees are in pain and weakness in my legs is constant. I am also retaining fluid by noticing my weight going up and feeling puffy. I am to get some bloodwork done on 4/9.
My question is did you get completely pain free with Prednisone?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

cwbf | @cwbf | Apr 15 1:02pm

In reply to @mech "Thank you for sharing. I see my rheumatologist next week and im going to ask about..." + (show)

@mech
I dont notice any side effects from Kevzara. I began in early December and if I experienced any adverse effects I would remember. I keep a diary and there are no recorded side effects from Kevzara.

mech | @mech | Apr 15 1:35pm

In reply to @cwbf "@mech I dont notice any side effects from Kevzara. I began in early December and if..." + (show)

@cwbf thats great! Thank you!

tweetypie13 | @tweetypie13 | Apr 15 8:16pm

In reply to @cwbf "@mech I dont notice any side effects from Kevzara. I began in early December and if..." + (show)

@cwbf I had similar experience…..after several months my wbc dropped…..not surprised. Chged dosage to every 3 weeks and resolved itself. Ended up staying that way for the last 4 months and am now off. 👍

caroljeand | @caroljeand | Apr 16 9:16am

In reply to @ess77 "@kjoed53 and all... Yes, absolutely true, especially with auto-immune diseases. They have stumped the medical field..." + (show)

@ess77

@kjoed53 and all... Yes, absolutely true, especially with auto-immune diseases. They have stumped the medical field for decades and only now appear to have more definitive diagnostic symptoms and better treatments.

My research and rheumatologist at Mayo treat PMR if you have both shoulders and both hips causing you extreme pain... I was hit suddenly with severe pain in both sides of only the hips and shoulders, to the point I couldn't turn over in bed at all, had difficulty getting out of bed or sitting up. It was severe. Immobilizing. Nothing touched it until I took Prednisone, I think I began at 20 mg at that point. perhaps 30mg. Don't remember. After a 2nd bout of Covid with Covid pneumonia and IV Remvisidere. Then. shortly, I was hit with GCA and put on Methotrexate, which worked immediately to calm the GCA symptoms. PMR symptoms responded well to Prednisone and tapered to 10mg daily for over a year.

Then, had the Oxympic reaction that sent my body into orbit in pain, weakness, etc. damaging my muscles and leading me to the diabetic even with coma level glucose levels.

That led to weeks of hospital, hospital rehab, leg/hip paralysis and 20mg prednisone to relieve the paralysis some. It took weeks of work with PT in hospital rehab to be able to walk again. I was using a wheelchair in the NH rehab for several weeks. What a journey that was... very long, very challenging, very debilitating. I attribute this all to Oxympic damage to my muscles and a reaction from my auto-immune system. I don't think these issues will ever be resolved. I will never have the muscle strength I need to function at the pre - Oxympic level
which was still limited mobility.

Tapering Prednisone is vital for me as I have multiple issues that Prednisone exacerbates... Vasculitis, aortic aneurysm and other heart issues, brain issues caused by this miracle drug, etc. So, I will and am tapering, but it must be extremely slow and methodical, watching carefully for reactions and responding asap. Several mornings I was completely paralyzed,whole body except my eyes and mouth... Robaxin 750 relaxes the muscles and allows them to begin to respond to my instructions and movement begins slowly, with tremors and weakness for hours to days following.

As the Prednisone is decreased below 15, I'm now at 14mg, these symptoms begin returning with weakness, tremors, pain the first it appear. I'm 79 and live alone. This is not going to continue. So, I will taper slowly, but it appears at this point 14 mg is the bottom for now. I'm holding there thankful to be down at least 6 mg since last May! Brain fog is less, movement is still ok, weakness is still worse and all kinds of pain is hitting me, but it's tolerable now using Tylenol, Kenalog cream, Xanax...

No, there is not a substitute for Prednisone with PMR, Sarcoid, my paralysis and other illnesses... It is a miracle drug and a horrid debilitating drug. We must learn how to deal with it as best we can. I don't expect to ever taper with no increased pain. I accept the pain up to a point in order to get down as low as functionally works.

Blessings to you all with this crazy journey... Elizabeth

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@ess77
You are a trooper!
Stay the course…. Hoping you can endure and recover.

ess77 - Elizabeth | @ess77 | Apr 19 5:37pm

In reply to @stonewheel "@betsyhase Perhaps you can also ask that if someone cancels an appointment, you can have it...." + (show)

@stonewheel and all... Right! That's how I get much better appointment times, often in within a few days or weeks rather than months. Important to be your best advocate in this way as well as in dealing with your physicians. You must stay on top of your care from the beginning to the end of your care decisions.

Hope it goes well...
Blessings, Elizabeth

Mike | @dadcue | Apr 19 6:51pm

Nobody ever promised me that I would be pain free when I tapered off Prednisone. Adrenal insufficiency and Prednisone withdrawal symptoms alone are painful conditions.

There were some "underlying conditions" which also contributed to my pain. I attributed any and all pain to PMR because Prednisone relieved so much pain. It was much easier for me to discern the various sources of my pain after I tapered off Prednisone.

For some reason, I can tolerate more pain when I know why it happens. I used to describe PMR as "pain for no reason." Understanding why pain happens makes everything better. My rheumatologist said it would be impossible to adequately treat everything so having "no pain" was never the goal.

Other than showing up for my monthly infusion of Actemra, I don't worry anymore about Prednisone side effects and my cumulative dose. My rheumtologist, ophthalmologist and endocrinologist are all making sure that my pain is tolerable.

Now something else has recently been revealed to me. It can be retroactively seen on a CT-scan that was done prior to 2020 when I was still on Prednisone. Apparently it was missed and wasn't reported because I wasn't having any symptoms.

Fortunately it is "slow growing" but it has metastasized. It was also contributing to my systemic inflammation. The positive being that Actemra is sometimes used to prevent cytokine release syndrome (CRS) and cytokine storms. Actemra used in cancer management often relates to addressing high levels of interleukin-6 (IL-6) produced either as a direct effect of a tumor or as a side effect of immunotherapies.

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