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My story may help
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!
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Thank you for sharing that. My doctor started me on 15mg for two weeks and wanted me to drop to 12.5. I did and by day three, I was hurting. He had gone out until July 11th because his wife had a baby so I told his assistant who agreed, that I was going back up to 15mg "for now".
June 28th had been a little over one month on 15 so I decided to try 12.5. So far, so good. I don't feel completely pain-free but nothing like the last time I tried this, plus I do have fibromyalgia as well as PMR. I see him on the 11th and hopefully can get him to prescribe 1mg pills.
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1 ReactionI really think the slow taper works. Maybe I wrote it wrong but I tapered by going down 1 mg per 4 weeks. As in 10 mg for 4 weeks, then 9 for 4 weeks and so on down to 1. It took me 10 months to get down to 1 mg.
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1 ReactionThat’s great to hear, and an important point to make, that we should also consider other potential explanations for pain even with PMR.
One thing that confounds and frustrates me is that inflammatory markers can be normal for some, always or even in the midst of a flare, so at least for my family, we need to read the labs with caution and “listen” more to the body, per my dad’s rheumatologist. Which sounds so nice, right?? Except for when we don’t always know what the body is saying lol >_<
That said, even when it’s in remission, an inflammatory arthritis still leaves its mark—it can take a long time to completely if ever recover from bouts of fatigue from overdoing things. Even when I don’t feel like I’m having an active flare, I still can get fatigued if I’m under a lot of physical or psychological stress.
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1 ReactionExactly. We have to take cues from our body. It’s hard to do - I feel normal but I really don’t want to push it or I suffer. I’m not sure how some those people that don’t have inflammatory markers manage. That’s awful! I’m glad I have a very good indication - I get my blood done every 3 months and know exactly what’s going on.
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2 ReactionsYes 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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1 ReactionOh I get it. The pharmacy gave me the denominations I needed. 10s and 1’s and then 5 and 1’s.
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1 ReactionMy inflammatory markers are always normal but it's very clear I have PMR and GCA. I have to listen to my body. I was off prednisone for 4 months. I started back at a lower dose and am going through a slower taper this time.
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3 ReactionsI will check that. Last refill, I asked if they could cut 10 or so in half for me. That was before I bought the single edge razors. They didn't.
Maybe they don’t carry all sizes and if you give them advance notice they’ll bring them in. I had no problem at all. Having to cut them is ridiculous! Good luck!
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.