How much improved should you be on prednisone?

[SLCR]

PMR likely since July 2021, didn’t seek treatment until January 2022. My doctor says, “presumed PMR”, let’s try a trial of Prednisone. After 10 days of 20mg daily, almost no symptoms, except I can still feel the past “framework” of where my pain was some soreness remains in my shoulder blades with some movements and just some reminders that this area has been under attack. Does this seem normal or after 10 days should I have no remnants of the pain? I have to report to my doctor soon and I’m inclined to say I’m 100% better just because not being stiff and sore is such a relief I feel the lingering minor soreness of shoulder blade area is not with reporting? What’s your experience with relief on first days of prednisone?

Thank You!

Stephanie

[DorsetLady PMRGCAuk volunteer]

Think the guidelines etc say at least 70% should be expected.As you can imagine , there will be as many answers as there are patients, ranging from “all pain gone within hours” to “took over a week” to “no better” ….

Yours sounds about 90% - is that fair? But I would mention the shoulder blades if still there when asked.

I had GCA, not PMR, and it probably took a couple of weeks for headaches to go completely but never sure if that was residue of GCA or due to sight loss adjustment. Shoulder pain certainly subsided - but was on 80mg - so it should have!

[SLCR in reply to DorsetLady]

I’m definitely at 90%, thank you this helps. I think I have an issue at sternoclavicular joint with a synovitis, which is resolving/improving but maybe the last to go— it was the first to arrive on this journey that began in July 2021. Stephanie

[Sharitone]

If you're asked, it's definitely worth reporting, or you're giving the doc wrong information. Is the pain 'framework' still receding, or is it staying the same? If it's still the same, you should mention it because it suggests it may get worse when you reduce the dose of pred.

[PMRpro Ambassador]

The usual is to look for 70% or better global improvement in symptoms - I was massively improved in 6 hours with 15mg but it took a few months for certain bits of bursitis/tendonitis to disappear altogether. I've been fairly pain-free all the way through except for flares/relapses, whichever you want to class my version as - almost never due to overshooting with the dose, they happen after being stable on a dose for a long time. Early symptoms tended to take longer to go.Now it tends to be myofascial pain syndrome stuff that leads to muscle pain - but it is something I;v had much longer than PMR - the PMR just makes it worse.

[piglette]

The pred acted like magic for me, but I still had pain in my shoulders. I used to use one of those oat/lavender things you put in the microwave that go round your shoulders which really gave me a lot of relief. A hot shower was great too. In fact my shoulders got better over the first few months.

[kalgoorlie]

Hi SLCR,This sounds similar to my experience and 'framework' is the right word. I have been on 15mg pred for 3 weeks and today is my first on 12.5mg, for the next 3 weeks. The pain initially started as what seemed like biceps tendonitis/synovitis and a kind of nervy pain in my shoulders that moved down my arms, on both sides. I had thought it was an RSI issue caused by playing my nintendo switch too much so I stopped playing. (Come back Super Mario, all is forgiven!!) At the same time I was also experiencing anxiety and depression due to a personal issue. But the pain soon turned into agonising bilateral shoulder pain preventing me from doing specific movements and was terrible first thing in the morning, and making sleeping and getting out of bed difficult and painful. (NSAIDS didn't work and after blood tests showing raised ESP and CRP I was diagnosed with PMR). After 3 weeks on pred I would say I am down to 90% like you and it's doing wonders as I am feeling so much better. (Early days, I know). BUT the original 'framework' of biceps tenderness and nervy pain is still there, especially in my left arm. I certainly want to address this and my GP is going to do an ultrasound in a couple of weeks to investigate. So I would certainly mention it to your GP. Piglette's post is encouraging too!

[SLCR in reply to kalgoorlie]

My story is very similar as to how it all began, even with my left shoulder being worse. I coincidentally was going through a personal struggle and was experiencing some depression and anxiety. At first I thought I was just creating my own pain due to my obsession with the personal issue and it’s affect on me. I tried many diversions to distract myself and try to muscle through and get back to my calm center, pain free self, to no avail of course. Thank you very much for your detailed reply, it really helps me adjust and accept my journey!Stephanie

[PMRpro Ambassador in reply to kalgoorlie]

Bursitis in particular is slower to respond - probably because you keep trying to use the joint and irritate it

[SLCR in reply to PMRpro]

Thank you!!!

[kalgoorlie]

That's the beauty of this group, so supportive, so glad I found it through googling PMR. Incidentally, getting PMR was a wake-up call. I had been very depressed/anxious and whether it's linked or not, I have decided that my health and happiness is top priority and I need to let that anxiety go. I am getting help with managing my personal issue now, as 'distractions' and 'muscling through' are only temporary and, like you, I need to get back to my calm self. Let me know how you get on.

[cranberryt]

I was 80% better within a day but the remaining 20% took several weeks and even then as I tapered I could be a little stiff and sore on waking but as soon as I took my medication and got moving I was fine.

[TheMoaningViolet]

Hi Stephanie, this sounds normal to me. I felt fine when it came to pain and stiffness within a couple of days. There were some issues related to steroid use (emotional lows for example), but that also disappeared as I reduced my dose. I have a very specific pain/headache pattern when I am reducing steroids and have learned to recognise those and am anyway reducing so slowly that I have been able to correct my approach without needing to increase steroids. Enjoy the absence of pain.