Mornings : Good morning everyone, Since I’ve... - PMRGCAuk

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Mornings

Pangolin43 profile image
29 Replies

Good morning everyone,

Since I’ve reduced prednisolone down to 5mg I have noticed wrist and hand stiffness in the mornings. Sometimes my fingers feel as if they are tingling when I wake. I also still have puffiness on the outside of each ankle below the bone despite reducing steroids. I thought this may improve as I lowered my dose. The pain in the wrists and hands improves with paracetamol.

My question is, ‘could this be osteoporosis, RA or arthritis which the Pred has been masking or is it PMR? I had a dexa scan a year ago which showed borderline osteopenia and I take Adcal-D3. I also showed negative on the Rheumatoid factor test. My last CRP and ESR were on 14th Feb and both good. I have since reduced to 5mg from 5.5mg. The wrist pain has become more noticeable since then. I’m seeing my rheumatologist next week.

Any thoughts/experiences would be gratefully received. 😀 Thanx

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Pangolin43
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29 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Bit difficult to tell, but first suggestion could be although 5.5mg was enough for your PMR, 5mg isn't... very fine line at low doses, as to what's enough, what just enough (maybe teetering on maybe) ..and not enough.

But if paracetamol helps, may well be OA... might be worth getting that checked out next week.

Pangolin43 profile image
Pangolin43 in reply to DorsetLady

Thank you DL. I’ll certainly ask the questions at my forthcoming appointment 😀

piglette profile image
piglette

I have the same problem but put it down to arthritis. I have no problem with bone density.

PMRpro profile image
PMRproAmbassador

You aren't reducing relentlessly to zero - you are looking for the lowest effective dose at any time and that will vary over time though it usually will fall as time goes on, even if it goes up and down a bit on the way. So it is possible it is the underlying autoimmune cause of the PMR still hanging around.

The hand thing COULD be due to carpal tunnel syndrome developing as the pred dose falls. Or it could be OA. And osteoporosis itself isn't painful - not until you develop a related fracture.

Pangolin43 profile image
Pangolin43

Thank you. Sorry if this is a stupid question but is osteoarthritis diagnosed with an X-ray?

PMRpro profile image
PMRproAmbassador in reply to Pangolin43

"X-rays of the affected joints are the main way osteoarthritis is identified. The common X-ray findings of osteoarthritis include loss of joint cartilage, narrowing of the joint space between adjacent bones, and bone spur formation. Simple X-ray testing can be very helpful to exclude other causes of pain in a particular joint as well as assist the decision-making as to when surgical intervention should be considered."

webmd.com/osteoarthritis/kn....

But even an x-ray can't be conclusive - sometimes an x-ray shows a joint that looks not too bad but the symptoms are far more severe than would be expected while in another the x-ray look as if it is bone on bone and the patient is saying it is bearable. Good doctors use a clinical diagnosis as well as imaging.

Pangolin43 profile image
Pangolin43

Thank you. Very helpful 😀

tangocharlie profile image
tangocharlie

No idea why it happens, but it seems a fairly common problem for many people when they reduce dose, it happened to me when I was on a low dose and actually came off steroids 4 years ago. I was tested for carpel tunnel etc, it wasn't that. My totally uneducated guess is if you reduce the steroid dose too far, and inflammation in the shoulders increases up, it impinges on nerves and causes tingling. To cut a long story short, I had to go back on steroids and the problem went away.

Meggsy profile image
Meggsy in reply to tangocharlie

That’s interesting Tangocharlie. My finger tingling and morning finger stiffness began at 2.5mg - presently slow tapering from 2.25 to 2mg. My grip has also weakened. I wondered about carpal tunnel so am encouraged by the information that it might not be the case. Maybe a 5mg increase for a week or so as for a flare might help.

Pangolin43 profile image
Pangolin43

Thank you. If it continues then maybe I will need to increase the dose of pred.

Blackcat1M profile image
Blackcat1M

Good morning I have had problems with my hands since reducing to 5mg but I thought it was carpal tunnel returning.I have some old hand splints I was given years ago to use at night time so may try them.

I did wonder about the swelling in my ankles you could have answered this for me.

Take care

Pangolin43 profile image
Pangolin43 in reply to Blackcat1M

Hi Blackcat. I’m unsure about the ankle swelling. It’s one of the things I will follow up at my next appointment. 🤔

Skysey profile image
Skysey

I am on 1mg of pred plus 10mg of leflumonide. I too have recently experienced stiffness and aching in my hands on waking. I don’t have PMR only GCA. I have early osteo arthritis in my left hip but the dexa scan was done about 2 years ago. I hope you get some clarity from your rheumatologist on your next visit. Keep us updated.

Pangolin43 profile image
Pangolin43 in reply to Skysey

Thank you.

OldPenny profile image
OldPenny

Hi P43

I think that we can all relate to morning aches and pains and I sympathise.

Your mention of hand problems on waking reminded me of my own situation a few years ago. When I finally got around to seeing the GP, x-rays showed that I had 'mild' osteoarthritis in some joints which was causing acute pain and really annoying 'trigger finger'. The only treatment offered was a cortisone injection, applied to a precise location.

When I turned up at the hospital, just as the pandemic was brewing, I was reminded that the injection would lower my immune system. Basically, I was talked out of the treatment and haven't been back.

Subsequently, I developed PMR, got put on corticosteroids (pred) and the OA in my hands and wrists is history - temporarily I suppose. I'm still on12.5mg, but even if I can taper down and still deal with the PMR arm and hip pain, I can expect the OA to remain and come back when I reach a lower dose. If it's not one thing, it's another! Thanks for reading my story.

I do hope that you can find relief and an answer to your personal ailments.

PMRpro profile image
PMRproAmbassador in reply to OldPenny

I was assured my hand and knee pain was OA, she could "feel it" - 13 years later there was still no sign of any OA in the knee. My hands hurt when I flare. OA doesn;t have to hurt as much as PMR - theysometimes use it as a get out ...

Pangolin43 profile image
Pangolin43 in reply to OldPenny

Thanks for your response. It seems to become more difficult to separate the normal ageing process from PMR as Pred reduces 🤔

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pangolin43

Yes it is -higher doses of Pred mask a lot pain from other health issues .arthritis being one - but as you reduce those problems resurface and of course they may have deteriorated quite significantly in the interim…

Pangolin43 profile image
Pangolin43 in reply to DorsetLady

Hello Dorset Lady. I think your right about the deterioration over the past year and a bit. My ankle swelling bothers me, particularly in my left foot. It’s around the ankle bone and travels along the upper, outer edge of the foot. It feels as if fluid has gathered and walking creates pressure annoys it! 😡

HeronNS profile image
HeronNS in reply to Pangolin43

I don't know if an arthritic ankle would respond the same way as my arthritic knee did last year. Elevation, periodic icing throughout the day, and a simple elastic brace, (plus Flexiseq and appropriate physio-prescribed exercise) sorted my knee. It took quite a while to be really back to normal, and as good as it's likely to get as I still have arthritis, but initial improvement did occur quite quickly.

Also I bought urban poles which I could use to offset weight from the afflicted limb.

Pangolin43 profile image
Pangolin43 in reply to HeronNS

Urban poles. Are they the same as Norwegian walking poles?

HeronNS profile image
HeronNS in reply to Pangolin43

Not quite. The handles have a wide ledge on which you rest your wrist so you can press down as you step on the painful limb. I have both Nordic and urban poles and the urban poles worked well for my knee, the Nordic poles did not because I couldn't press down enough to take weight off my bad knee. I only used the urban poles for a month or two, but they were well worth it. The style of walking is different too. You can walk much faster with Nordic poles, which of course I didn't want to do while I was recovering from the injury!

Look for Urban poling Activator poles. urbanpoling.com/post_type_p...

I could only find the Canadian and United States sites, but I'm pretty sure I've seen UK as well. They use the term "rehabilitation" referring to Activator poles.

Also, I bought mine at a local pharmacy! Cost less than the on-line price, and it was senior's discount day. :)

Pangolin43 profile image
Pangolin43 in reply to HeronNS

Thank you for this information HeronNS

Pangolin43 profile image
Pangolin43 in reply to OldPenny

Thanks OldPenny

HeronNS profile image
HeronNS in reply to OldPenny

I had trigger finger years ago. My doctor suggested snipping the tendon. Of course I rushed out of his office screaming (figuratively) and went to seek advice from a physiotherapist. She had to look it up, and on a second (and final) appointment she showed me how to find the offending place in my palm and massage it. This is all I needed to do. It went away really quickly, when it tried to recur I stopped it with massage, and have had no problems now for decades.

Pangolin43 profile image
Pangolin43

Thank you. It’s very helpful to hear other people’s experiences. 😀

HeronNS profile image
HeronNS

Osteoarthritis rather than osteoporosis, I expect you mean? I have quite extensive OA, have had it at least half my life (now in mid-70s - and do manage it quite well, although lately it's been much worse. For my hands I recently discovered the Chinese iron balls I bought years ago, and have been using them to gently exercise the joints and it does seem to help. I also have been using Flexiseq on my knees and lately take a little extra and spread over my fingers and thumbs. There are a few exercises one can do, starting with the yoga "Flower" where you open and close the fists, spreading out the fingers and thumb. You attempt to resist this motion while you do it.

en.wikipedia.org/wiki/Baodi...

Pangolin43 profile image
Pangolin43 in reply to HeronNS

Thank you. I like the sound of the Yoga flower 😀

HeronNS profile image
HeronNS in reply to Pangolin43

Another thing I do is this: press each finger, and thumb, separately towards the palm. If you can, apply pressure to the palm with each digit in turn.

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