1. < Polymyalgia Rheumatica (PMR)

My story may help

Posted by deejayc @deejayc, Jul 4, 2023

I think we’ve all noticed that PMR and Prednisone seem to have different stories for everyone. I believe my experience may help some of you - especially those who are having difficulty getting off prednisone. I was on prednisone for 11 months all together; starting at 20 mg, going to 10 mg within a few weeks and then tapering by 1 mg every 4 weeks - pretty typical. I got down to 1 mg and did have some difficulty with stiffness. I could not get my rheumatologist to do a phone visit and the only appt was 6 weeks away. I ran out of prednisone and could not get a refill until I saw the rheumatologist. I was sure I still had PMR and was worried I’d have to start all over again. It was a rough 6 weeks - stiff and sore other than maybe 2 days where I felt pretty good. Finally my appt. To my great surprise he told me that my inflammation markers were down and so I did NOT have PMR any more. Shocked but happy, wondering why I was still stiff most days, he said it would take a while for it to leave my body and longer for my body to get back to normal - to take it easy but continue to get on with my life. (One of my complaints was both arms were very stiff - could not lift or extend them. He figured out that it was not PMR but an actual rotator cuff injury - most likely overdoing it at the gym because prednisone makes you feel like you can do anything!). Long story short (too late, I know) is that I was stiff and sore - my arms of course but my legs too for another month and a half before I started feeling like my old self. I’m still going to physiotherapy for my arms but the PMR is gone. So that’s a full 3 months with no prednisone where I felt I still had PMR and didn’t. I wonder about these people who have been on prednisone for several years and whether their rheumatologist was just prescribing more rather than reading the inflammation levels. I’m not sure what happens now if I flare - does anyone know if I go back on prednisone or for how long? With my rheumatologist having a 2 month minimum waiting list I am scared to flare. I hope my story helps some of you. The longer a person is on prednisone, the worse the side effects- I hope you all see the end of PMR soon!

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

ivy1913 | @ivy1913 | Jul 5, 2023

Your experience is quite interesting. I was diagnosed in November of 2022 and put on 40 mg. of prednisone for a month, then 20, 15, 10for two weeks. Currently I am on 4 1/2 alternating with 4mg. Feeling good but I do exercise daily with three mile morning walks, three yoga classes and two spin classes a week.
I had this routine before the PMR diagnosis and have continued with some caution. I do not want to push too hard and cause any injuries but I intend to keep moving. So far this is working for me. If I have pain I will take a Tylenol at bed time.
It is nice to share PMR experiences.

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deejayc | @deejayc | Jul 5, 2023

Yes. I felt good through my whole treatment of prednisone until I got to 1 mg. I had been with a trainer for a few months before that but hurt myself on the low dose. Because it was in both arms I assumed it was PMR - a flare or just not finished. I was also stiff in my legs and back too so a lot of it was just getting rid of the end of PMR apparently.

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vellen | @vellen | Jul 5, 2023
In reply to @emo "I thing a pharmacist can change the formulation (i.e. capsule to tablet or syringe to injector..." + (show)
@emo

I thing a pharmacist can change the formulation (i.e. capsule to tablet or syringe to injector pen) or the denomination of the tablet, as long as they’re not changing the actual dosage, if the pharmacist is willing and had it in stock. But at my pharmacies, if they don’t have something in stock, they’ll have to order it and it generally arrived the following day. So as @deejayc mentioned, if they have advanced notice, that could work.

I just did the above—my dad needed tablets of another medication (coincidentally because we have to cut the tablet), but the nurse filling in at his doctor’s office made a mistake and sent the RX as capsules. The pharmacist offered to change it to tablets for me…however he didn’t have enough to fill the whole script, so he gave me a partial fill and I had to come back the next day to get the rest.

Or…I just asked my doctor to send an RX specifying the denomination I needed/wanted (I take 112.5 mg of a different medication, which is 4.5 of the 25 mg tablets. It’s super annoying to cut them, but that’s the dose my body tolerates.)

My dad is the one with PMR, and his rheumatologist just writes the RX for the smaller denominations and says for example: “Take 10 mg every morning or as directed by doctor.” But his insurance covers it without issue, and I know some people have said they’ve had problems with this.

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I have gotten a different partial prescroption but had to change pharnacies for my son. He could not get refills on one medication and the doctor woundn't send for it to be filled until the day he needed it. The commercial cost was a couple thousand (I paid $30) so the pharmacist wouldn't keep it in stock.

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pkalkstein | @pkalkstein | Jul 6, 2023
In reply to @vellen "Yes your taper made sense. My challenge is my insurance will only allow one prescription at..." + (show)
@vellen

Yes your taper made sense. My challenge is my insurance will only allow one prescription at a time and currently it's 5mg tablets. so 15 to 12.5 is easy but I think from 12.5 to 10 will be too much of a drop. By the time I was diagnosed, I could barely get out of bed or walk on my own.

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I have a very good pill cutter that has made my life easier.

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1 reply
vellen | @vellen | Jul 6, 2023
In reply to @pkalkstein "I have a very good pill cutter that has made my life easier." + (show)
@pkalkstein

I have a very good pill cutter that has made my life easier.

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My razer works perfectly however, getting 1mg out of a 5mg pill isn't quite doable. ^^

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