Recently diagnosed with Polymyalgia

[Lowercwmtwrch]

I am on 10mg a day, I still have the exhuastion, swelling leg & knee, very sore white tongue, chronic lower back pain, & no bladder control! Has anyone experienced any of these syntoms?

[PMRpro Ambassador]

Your sore white tongue is very likely to be due to oral thrush - very common when on pred. Your GP can give you appropriate medications for it.

The fatigue is a part of the autoimmune disorder underlying the symptoms and it must be managed by lifestyle adaptations and pacing:

healthunlocked.com/pmrgcauk......

The low back pain could well be due to myofascial pain syndrome - which some experts think is part of the pathology of PMR:

healthunlocked.com/pmrgcauk......

in particular piriformis syndrome is common alongside PMR.

Bladder problems - could be PMR, could be pred, it could be due to calcium supplements if you are on them. It was discussed just a few weeks ago. I can't find it though ...

[Lowercwmtwrch in reply to PMRpro]

Thank you!

[SheffieldJane]

You really don’t sound very well. I mean beyond your PMR diagnosis. If the bladder symptoms are newish I would suggest that you have a nasty bladder infection that needs antibiotics. Are you taking Adcal ( calcium and vit D usually prescribed automatically with Pred?) I found that I had pretty awful bladder pain and frequency with the calcium supplement. The lack of bladder control maybe a whole other matter and it needs careful attention in the new year. This is not usual in PMR and maybe something else going on. I hope this can be sorted soon.My knee swelling was put down to Osteoarthritis, oddly when I was being diligent about exercise. I have little trouble now, much further down the line. I keep my feet up, whenever I sit. I stopped Adcal upon doctor’s advice and the symptoms subsided. I still take vit D.

[Lowercwmtwrch in reply to SheffieldJane]

Thank you!

[Kendrew]

Hi there. Firstly to say that you've already been given reliable and accurate advice and will be well supported here. Just to add that I've been on pred just over 18mths and have always experienced fatigue.....worsening and easing depending on my activity levels. As PMRPro mentioned...its vital you learn to pace yourself. I suffer from reoccurring lower back pain which I now believe after advice from PMRPro again......to

[Lowercwmtwrch in reply to Kendrew]

Thank you!

[Kendrew]

........be myofascial pain syndrome too. Finally, I've also had two lots of cystitis which required antibiotics so definitely get that aspect of things checked out.

[powerwalk]

Some of them, ive had shocking fatigue, pain just about everywhere at different stages. Ive had really bad bladder pain and proper infections but no loss of bladder control. It is probably something you should get checked out. Let us know how you get on.

[Lowercwmtwrch in reply to powerwalk]

Thank you!

[katiemills]

I’ve never had thrush in my mouth , but I have all your other symptoms , including the lack of bladder control ! I have no bladder pain or cystitis, but when I need a wee I need to get to the loo very quickly indeed !! This has been the case since my diagnosis nearly three years ago . I’m currently on 9 mg and find it very difficult to cope with the pain and fatigue on less than that . Good luck !

[Lowercwmtwrch in reply to katiemills]

Thank you!

[Smokygirl]

Yup! Badder control is a bugger! Currently on 8 mg Pred. My sore white tongue was surprisingly not thrush but caused by the Pred. The cheeks of my mouth along the line where my teeth meet are covered with dead white skin also due to Pred. It took weeks to diagnose as my Doc was so sure it was thrush—- but no absolutely not! Changing your toothpaste to a mild one without additives helps a bit.

As for the fatigue—- I just go to bed and crash for an hour when it hits me usually within the five hours after taking my dose of Pred in the morning. It must be horrendous for people that have to work. Every good wish to you xxxx

[PMRpro Ambassador in reply to Smokygirl]

Ever tried taking your pred before bed so the crash happens then? A few people found that worked a treat.

[Lowercwmtwrch in reply to PMRpro]

Thank you!

[Smokygirl in reply to PMRpro]

No, not yet. I keep thinking about it!