Fear of pain returning

[AnniesRyder5]

Firstly I would like to say how grateful I am to have found this forum .

My GP has put me onto a reduction plan of 1mg per month from current 10mg of prednisolone However, when he asked me about side effects I was a bit evasive. He reduced my dosage a couple of months ago for the first time because my legs felt like like jelly in the mornings which he interpreted as muscle wastage which can be permanent and again that’s the last thing I want because I have tripped over too many times already due to having had a knee and hip replacement on the same side.

Recently for example I occasionally get dizzy spells and I notice my upper arms are really very swollen, embarrassing ly so ! Today I have a painful mouth ulcer.

Any ideas if these symptoms are significant please?

Also are there no other reliable medications if prednisolone causes so many side effects?

Thank you for bearing with me,

Regards

Annie

[DorsetLady PMRGCAuk volunteer]

To help your muscles you could look on line for either pilates or yoga for seniors.

Look on YouTube for “the girl with the pilates mat- but make sure it’s for older people.

This is one - youtube.com/watch?v=i3PYS_j...(Not working as expected?)

NHS also has some pilates for those with arthritis - so not too strenuous - might help legs -

nhs.uk/conditions/nhs-fitne...

Many suffer from dizzy spells with Pred, but just check your blood pressure is okay.

Ulcers and thrush are other side effects unfortunately. Speak to GP or pharmacist.

There is no viable replacement for Pred, and to be honest any drug has side effects - at least those with Pred can be managed.

[piglette in reply to DorsetLady]

As of tomorrow yoga and Pilates can be done in our local parks. That should be interesting.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

I’ll pass on that I think🤦🏻‍♀️

[PMRpro Ambassador]

No, I'm afraid that for PMR/GCA corticosteroids are the main approach. That means prednisolone, prednisone or methyl prednisolone.

That said, I had muscle wasting while on methyl prednisolone - I had had no problem with prednisolone and when I was switched to prednisone and walked a bit all the muscle came back. It does not have to be permanent and if it appears to be a problem the doctor should be recommending appropriate exercises to reduce the risk.

If your muscles feel like jelly in the morning - and I assume then they feel better later in the day once the pred kicks in? - it is probably the result of the new dose of inflammatory substances shed in the body in the early morning. Does that sound reasonable?

The upper arms swelling may well be weight gain, or more accurately fat deposition, due to pred. It happened to me. Once I switched to a low carb diet I lost those fat deposits, starting with the midriff ones but the biceps went back to normal too.

[SnazzyD]

Hmm, I had muscle wastage and I can tell you the jelly legs weren’t just in the mornings, it was all the time until it resolved. I could also see it. Sounds a bit lazy on the doc’s part to me.