Okay, looking for your best suggestions or guess as to what is going on.
I have managed to taper to 1/2 mg prednisone, when I get up I am achy all over, but bearable, then I take an extra strength Tylenol around noon and have a nap and I’m good, I feel like I did before I was diagnosed with PMR... does this mean my adrenals are kicking back in? I know frm a year ago that Tylenol could not come close to touching the inflammation, but now it does and my blood test last week showed ESR was 6, which is great
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Truckfoot
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Good morning, I take it you're in the States from using Tylenol....something we don't get in England. We take Paracetamol. May I ask what your tapering regime was ? I am still using the Dead Slow and Stop method and currently taking 7.5 mg. So far, and fingers crossed, no problems for me, but dread as I lower the aches and pains will return. I was diagnosed Dec 2019. I also ended up with GCA once I'd reduced to 8mg from originally being prescribed 15 mg for PMR. Up to 40 mg and been slowly reducing ever since. What date was your diagnosis ?
I was diagnosed in September 2019.... I have done the drop dead slow taper, but also tried other methods, currently or over the last number of months, it has been .5 mg a. Month
Would say you have actually gone below the level of Pred you actually need, not by much but enough to give the aches in the morning. The fact that it feels the same as before diagnosis indicates that.
You may just need to go up a little.
You are not reducing relentlessly to zero, you are trying to find the lowest dose that gives you same relief as initial one did.
Think it’s co-incidental that you feel better after Tylenol, most patients feel better in afternoon once Pred has kicked in, as well as after a nap.
Yes, ESR figure is good, but you may find it rising if you continue at 0,5mg….bloods very often lag behind symptoms.
Have attached a link to a couple of posts - one on flares etc, second on adrenals ( which sound okay)-
It may well be that the neck is a separate problem - is it at the front? Could it be a sternocleidomastoid problem? It is quite common amongst PMR patients:
I have thought about sternocleidomastoid any have been doing exercises for it, also hope to see a physiotherapist and see if they can help...tks for the info
Congratulations on the 1/2 mg Pred. Wow, that is very interesting. At the beginning of this PMR journey neither Tylenol nor prescription Ibuprofen helped but now that I'm at 3 mg Pred I find Tylenol doesn't help but small amounts of Ibuprofen does. I divide my Pred morning and night and at night I also take between 50 mg and 200 mg Ibuprofen and I wake up feeling great! When I don't take Ibuprofen I wake up slightly achy. My doctor said it was ok as long as I keep it at low doses. She considers high doses at 600 mg and up. I would never take more than 200 mg. This is just my experience but I personally wouldn't increase the Pred if your inflammation markers are fine. I would also ask my doctor's opinion to make sure that Tylenol is ok to take. Let us know how you make out.
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PMR? or not PMR? - that is the question.
