Should I Be Off Steroids?

[Admiral06]

In August, 2017 I was diagnosed with PMR and began receiving 80mg Depo Medrol injections on a weekly basis. This dose, (which averaged 11.8mg daily), totally controlled my symptoms and brought my CRP from 50 to less than 2.9 and my ESR from 51 to 15.

By June, 2018 (month 10) I had successfully tapered to 3.3mg and switched over to 4.0mg of oral medrol taken between 12AM and 3AM. By May, 2019 (month 33) I had tapered to a dose of 1.5mg which I continued for one month. In June, I dropped my dose to 1.0mg and began to experience swelling and stiffness in my hands which began in the middle of the night (from 3AM on) and was gone shortly after awakening. After one month on this regimen, (month 35) I went off the medrol altogether.

Two weeks after discontinuance, I began experiencing mild hand pain and stiffness that began at midnight and increased as the night went on. Between 10AM and noon the next day these symptoms were generally gone. On random nights, I also experienced mild to moderate wrist and/or shoulder pain which added to my night time discomfort and required that I take ibuprofen in order to get back to sleep.

At this point, I visited the doctor and learned that my CRP was <2.9 and my ESR was 7.0, which were as low as I had been since I was diagnosed with PMR nearly 3 years earlier. His diagnosis was my discomfort resulted from arthritis (which I did not have at the onset of PMR) and I should remain off steroids. My personal opinion is that I am still suffering from low level PMR.

On a positive note, the night time dosing needed to control my symptoms gave me terrible insomnia which has improved significantly since I discontinued the medrol. 1.5mg was the last dose that completely controlled my symptoms, and if I go back on this dose I expect my pain and stiffness will be controlled, but my sleep will suffer. If this is low level PMR that I am experiencing, will any harm (such as a worsening of symptoms or relapse) come of not treating it?

Lastly, I have experienced a significant and troubling loss of my short term memory and wonder if I can expect this to improve if I can remain off steroids?

[Hidden]

Hi, regarding the hand stiffness..I note you had this before and had to raise your dose. Did that help? I think I would try some OTC painkillers and see what happened. I have OA in my thumbs and wrists and at 6mg it fluctuates, often on humidity and temperature.

Hopefully when people have woken up you will get more helpful responses.🌻

[PMRpro Ambassador]

Since I won't compromise on how I feel and dose I personally would be back on pred. Especially at such a low dose - 1.5/2mg of oral steroid is a lot less than an injection which has 100% bioavailability. I might also ask if I could try prednisone (but I do detest Medrol as it caused side effects I've never had with either form of pred) to see if that helps the insomnia. The methyl part of Medrol is what causes the trouble and 2mg or less of steroid has far fewer potential side effects than NSAIDs.