More aches & pains!: Hello dear people For the... - PMRGCAuk

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More aches & pains!

Doraflora profile image
27 Replies

Hello dear people

For the last few weeks (about 8) I’ve had discomfort in my shoulders - which felt it was like a rotator cuff issue. However, lately I’ve also had a stiffish neck (put it down to my pillow). And ... there’s more, I’ve also had lower bad discomfort on my right side, which definitely feels muscular, as we’ve been sitting on a lower sofa since we moved house and I’ve put it down to that.

I’m currently on 4mg of Pred, having just started tapering very, very slowly to 3.5, but with all these aches & pains I’m undecided whether to up it back up to 5mg, just in case it’s not muscular pain but the dreaded PMR reaching those particular parts.

I can say that the original pain I got when first diagnosed nearly 2 years ago went almost immediately once I started the Pred & has not returned since.

I’m loathe to increase the Pred, but it will only be a slight increase.

Advice from you wonderful people would be much appreciated

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Doraflora profile image
Doraflora
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27 Replies
PMRpro profile image
PMRproAmbassador

All very typical signs of the pred dose being very slightly too low.

Remember though - you are at a pretty low dose now, when you started that was probaly well more than you needed so worked quickly. Just going back to 5mg from 4mg may not be enough to get a dramatic result - maybe a few days at 10mg first would be the answer?

Doraflora profile image
Doraflora in reply to PMRpro

Hmm, I know what you’re saying makes absolute sense, PMRpro, but it’s a psychological thing I guess: I’ve not been on 10mg since my first few months of diagnosis. But I guess this blooming ailment is a case of 2 steps forward, 6 back.

PMRpro profile image
PMRproAmbassador in reply to Doraflora

I don't think you are much too low - but there is nothing psychological about the flare that could result!!

Never think of it as a backward step - you aren't heading relentlessly to zero, you are undertaking a process called titration to identify the correct dose for YOU and NOW. Just ike in chemistry, you do it by slightly overshooting and then redoing the final stretch extra slow to get the right answer. You have identified where too far is, And it could well be 4.5mg you need - but the few days using 10mg is just to clean up first. You aren't going back to that.

Doraflora profile image
Doraflora in reply to PMRpro

Why do you always talk so much sense, PMRpro. I wish you were my mum🤣

You’re so right. I’ll probably try the 10 tomorrow for a couple of days or so and see how the discomfort goes. I guess my reluctance is that if I’m on 10 and it proves not to be PMR in those parts of my body then I’ve got work to do tapering back down again. But I won’t know unless I try!

PMRpro profile image
PMRproAmbassador in reply to Doraflora

No - only try the 10mg for a week at most - it is meant to work well but you really are unlikely to need that much since you must have been OK at lest for 5 months at least. Once the discomfort you have now is gone, back to 5mg straight away and then you don't need to taper again, saves loads of time and it is a mistake a lot of doctors make, thinking they have to go all the way back to the start. If the 10mg hasn't worked inside a week it probably won't and it is probably something other than PMR that needs a different approach.

It's nice to know someone thinks I talk sense - my daughters don't!!!!

Blackcat1M profile image
Blackcat1M in reply to PMRpro

Your daughters are very lucky

Doraflora profile image
Doraflora in reply to PMRpro

Perhaps show your daughters my post thrn🤣

I’ll definitely take your advice, PMRpro. Thanks

Doraflora profile image
Doraflora in reply to PMRpro

Well, 2 days into the increased Pred dosage, and I’ve noticed one of my fingers has swollen quite a bit. Have you heard of this before - or experienced it yourself?

PMRpro profile image
PMRproAmbassador in reply to Doraflora

Me personally? No, sorry ...

Doraflora profile image
Doraflora in reply to PMRpro

Ok, thanks.

PMRpro profile image
PMRproAmbassador in reply to Doraflora

Ask in a new thread - no-one else is likely to see the question here, just me and DL; Just the way HU works.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Doraflora

Have you done anything to that hand? Might be totally unrelated to PMR - but do monitor it, and as PMRpro says write a new post if it continues.

Just a thought- do you have osteoarthritis anywhere?

Doraflora profile image
Doraflora in reply to DorsetLady

Morning DL.

No, I’ve not done anything to that hand, and there’s no pain whatsoever. It’s strange!

This morning I find that my wedding band is pretty tight now, so I’ve no idea what’s causing it. It just seems coincidental with increasing the Pred.

I’ll start a new thread to see if anyone else has experienced it.

Crikey, and I’ve not got to my 70th birthday in may yet, and all these ailments are appearing from nowhere 🤣. Hey ho....

PMRpro profile image
PMRproAmbassador in reply to Doraflora

If I were you I would take that wedding ring off now - just in case. A lot easier and more pleasant than having it cut off in A&E!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

…and cheaper…if it needs to be put back together. Happened to hubby when he was playing football! He was more worried about my reaction when army doctor told him it need to be cut off. But he made a nice clean cut, was repaired and I’m now wearing it - some 40 years later!

Doraflora profile image
Doraflora in reply to DorsetLady

Ha, things were made to last in those days, DorsetLady. Mine’s still going strong after almost 49 years....

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Doraflora

Wedding rings are 55 years old-engagement ring even longer!..all aging better than me 🤣😂

Doraflora profile image
Doraflora in reply to PMRpro

I’ve duly done that, PMRpro.

Tbh, I’ll only contact my GP if things got worse with the swelling, as I’m starting to feel embarrassed about how many times I’m contacting the surgery lately. If it’s not been my “hives” complaint it’s been my BP, or my weight loss, or my raised ferritin level, etc, etc. I’ll end up,getting struck off their list!🤣

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Doraflora

It does get a bit like that at times - but what about the years in the past when you haven’t needed them - swings and roundabouts!

Doraflora profile image
Doraflora in reply to DorsetLady

Very true indeed! Until my PMR diagnosis 2 years ago I never took any medication at all, or hardly contacted the doctor, so guess it is payback time now.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Doraflora

Yep, they get paid when you’re on their list whether you see them or not.

Seems to vary - depending what you read - The average GP practice receives around £136 -£155 per patient per year’

Doraflora profile image
Doraflora in reply to DorsetLady

I didn’t know that.

But I guess it’s nice work if you can get that each time🤣

PMRpro profile image
PMRproAmbassador in reply to Doraflora

Mmmm - but that is for a whole year - not so much when you consider that is to pay for the running of the entire practice with all the services. OK if it a patient they never see - but a lot are there frequently.

Sharitone profile image
Sharitone

On the lower sofa issue: I've had all sorts of thigh pain since having to sit around more, and have often tracked it down to the hardness/softness/height of chairs/mattress/ shoes. So it may be worth adjusting that sofa as well as the meds!

Doraflora profile image
Doraflora in reply to Sharitone

Thanks, sharitone. The new suite will be here in about a months time. We’ll only have been waiting 6 months!

AshPen9 profile image
AshPen9

I had hip and thigh pain a couple of months ago whilst using an unusually low chair. Once our reupholstered suite arrived it disappeared. Let's hope that your new suite brings similar relief!

Doraflora profile image
Doraflora in reply to AshPen9

Thanks, AshPen9. I hope so, too😀

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