Stopped pred recently and not so bushy tailed.

[Animalover65]

Hi, I am fortunate to have stopped taking Prednisolone nearly 3 weeks ago.

I feel a bit more tired this week and generally a bit stiff in my muscles - however weekly yoga seems to help with the muscles. Also I have continued to have sore muscles in my chest and slight pins and needles feeling in my feet- the pins and needles is less than when I first had PMR.

I mentioned the chest muscles when I saw my rheumi a few weeks ago and he did not take much notice. I only notice the sore chest muscles if I sneeze or do certain floor exercises at yoga . ( I am hoping that if the chest was anything aorta related it would be noticeable all the time. and I was thinking that perhaps those muscles take longer to repair)

( the rheumatologist is a comical character approachable but moody ) He was in a huff several months ago after it appeared the previous patient left his office, this last appointment he had a bad lurgh. I asked for my next phone appt to be later in the day rather than early morning as I suggested that the last phone appt 8.30am he appeared to be in a bad mood. !!

Any thoughts would be appreciated.

[Koalajane]

how long did you have PMR for as your bio doesn’t tell us anything? Not sure really what you are asking.

[Animalover65 in reply to Koalajane]

I will update my bio later today. I started to feel unwell end of 2021 and it took 3 and a half months to get a diagnosis. Started on 20mg of Prednisolone in early March 22 so I was on steroids for 20 months. Had what think was a wobble at 7mgs- adrenal related but had no flares - touch wood. I was wondering how others felt after stopping pred.

[Koalajane in reply to Animalover65]

Thanks, hope you feel better and that your chest pain says goodbye soon

[Animalover65 in reply to Koalajane]

thank you ,hope your health improves too.

[PMRpro Ambassador]

Pins and needles in your feet is very possibly neuropathy, damaged nerves, and they will take time to recover, if they do at all. Obviously the chest pain was pre-existing but with no context we can't really say much.

Bear in mind that zero pred may be a very different matter from whatever your last dose was. Even 1/2mg a day can be plenty to keep PMR that is at a very low level of activity under wraps - but over time any small amount of inflammation will build up until your notice it so do be aware and seek advice if that should happen.

[Animalover65 in reply to PMRpro]

Thank you. I will keep an eye on any further symptoms. The pains i had were throughout the muscles in the body, All the muscle pain eased or became very minimal except for the chest muscles.

[PMRpro Ambassador in reply to Animalover65]

Which sounds much more like injury - costochondritis affects very specific areas of cartilage and isn't a muscle problem.

[Animalover65 in reply to PMRpro]

JThank you -ust looked it up and doesnt sound too serious thank heavens! I will avoid any yoga poses that might aggrevate it and see if that helps.

[PMRpro Ambassador in reply to Animalover65]

Good start!

[Animalover65 in reply to PMRpro]

👍😍

[DorsetLady PMRGCAuk volunteer]

As you have been taking Pred for less than 2 years then it might be your PMR still grumbling- and as PMR-has said a very small dose may have been enough to keep the some of the symptoms you describe under control.

As for the chest pain, that need further investigation me thinks…

[Animalover65 in reply to DorsetLady]

Thanks Dorsett Lady I will keep an eye on any further symptoms, The Rheumatologist was going to discharge me and then I mentioned the existing pain so he I have a telephone appt with him in 6 months. Just not keen on more medical appts before Christmas. I belong to Beneden so might contact them .

[Hidden]

Following up from Animalover65's post.............Does PMR permanently damage the muscles, hence all the aches and pains that folks seem to get , a bit independently of their CRP being well below 10, after stopping Pred, various aches and pains when pred control otherwise seems good........just thinking? I dug up the dahlias today, ( late, soggy, smelly but thats rain for months 😇) neck and shoulders sore tonite, sorted with a couple of Paracetmol, but otherwise hunky dory for 2 weeks on 16mgs. Cant find anything in the lit about this.

[PMRpro Ambassador in reply to Hidden]

I don't think so, not really, However even after stopping pred they are bound to be out of condition and take time to build up again.

But you are still on a hefty dose of pred and the autoimmune part of PMR is still active in the background, attacking the muscles and soft tissue. The pred is only managing the inflammation - it has no effect on the actual disease process and that continues in the background. It can have a similar effect on muscle to a severe viral infection or flu so if you overdo things, you are more likely to develop DOMS, delayed onset muscle soreness, and so you get soreness and aches,

[Hidden in reply to PMRpro]

If ones Pred is managing the inflammation , what is causing the pain ? Given initially my pain disappeared within 36hrs of starting the Pred.

[Animalover65 in reply to Hidden]

Could it be DOMS due to exercising slightly weakened muscles perhaps.

[PMRpro Ambassador in reply to Hidden]

Overusing the muscles - and you develop DOMS as I said. Like the muscle pain you get after training a run but worse because the muscles are compromised anyway and then take much longer to heal. All training is is microtears caused during excessive use healing and making a stronger muscle - like a broken bone should heal stronger. But in PMR the muscles are being attacked by the actual disease which isn't affected by the pred in any way and that leaves them weaker.

[Hidden in reply to PMRpro]

Thanks for your reply. Has anyone done research on muscle function and power after stopping treatment for PMR. Ferreting around the forum folks seem to note longer term weakness yet others go back to climbing mountains!

[PMRpro Ambassador in reply to Hidden]

Not really - we were hoping to but too many obstacles with the medical leads have put it on a back burner. After stopping pred most people find it takes about a year to feel back to normal again - BUT you must always bear in mind you are how ever many years older and that in itself has an effect. It is a very individual experience and depends on many factors: state of fitness pre-PMR and pred, desire to get back to the same level of fitness and opportunity, duration of the PMR and something that is very individual is the effect on the body and muscles of the disease and the medication.

[Hidden in reply to PMRpro]

A pity, I would have thought that forum members would be fertile ground for spot of qualitative research on all manner of aspects of PMR. PhD anyone?

[Hidden]

I seem to do OMS without the D. Starts about 2 hrs, goes with Paracetamol and doesnt return.

[Animalover65 in reply to Hidden]

I started adult ballet classes 6 months ago - was not sure if I could manage it but very slowly seemed to feel stronger. Recently started a weekly yoga class- my main concern was getting down on the mat and not being able to get back up! I take things gently and pace myself and manage to get back off the mat if not very elegantly. !

[Hidden in reply to Animalover65]

Ballet so nice;I gave up my modern jazz dance class with Covid and havent returned. A bit too much for me now i suspect, class was quite a bit younger........like 20yrs!No matter what , I feel that using the muscles is better for me than not so doing., esp the arm bit. Very thérapeutique for the muscle between the ears too!

[Animalover65 in reply to Hidden]

Definately good for the muscle between the ears!

[Animalover65 in reply to Animalover65]

We definately need to use it or loose it. x