Advice

[Shandylowe]

Can anyone advise if it is best to persevere without prednisolone when still in pain or should we take a small dose to try to keep the inflammation under control.

[DorsetLady PMRGCAuk volunteer]

Bit more info might help… you have nothing on your profile and it a reply 9 months ago you said you’d been on Pred for 4 years…

Can you say when/how you got to zero, and how long you’ve been off it…. If recently, you might just need a small dose… but it’s difficult to give a measured response with such little information.

[Shandylowe in reply to DorsetLady]

Hi

I was off pred completely for about 4months. Then I had a virus that triggered asthma and I was back on quite a high dose again. I have got down to 4mg but I’m really struggling with pain and fatigue.

[DorsetLady PMRGCAuk volunteer in reply to Shandylowe]

So are you saying you think the virus and/or asthma attack triggered a relapse of your PMR -which sounds very likely.

As you reduced, at what dose did your PMR pains return? If you know then it might be sensible to go back to just above that. Assuming they are PMR pains.

Fatigue may well be adrenals - if so you cannot just stop Pred -they need nudging gently back into working again -and with the virus and asthma they will been under stress

Have you spoken to GP about this?

[Shandylowe in reply to DorsetLady]

Thank you that makes a lot of sense. Just hate having to go back on pred but I suppose it’s more detrimental if I’m full of inflammation. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Shandylowe]

Yes it is detrimental- untreated inflammation can lead to,lots of issues… so better a small dose of Pred methinks… 😊

[PMRpro Ambassador]

I will comment further when I have more info - but if the PMR is still there, then you need enough pred to manage the symptoms. If you don't, the inflammation will build up until you may end up back where you started.

[Shandylowe in reply to PMRpro]

Yes I think that is what I will do thanks for your help.

[Shandylowe in reply to PMRpro]

My problems started in 2019 when suddenly I felt very ill and after blood tests I was told I had very high eosinophils. I was referred to a haematologist who spent a year trying to acertain what was wrong, but with no joy. He originally thought I had lymphoma or leukaemia as he’d never seen such high eosinophils in anyone before who didn't have these conditions. I was then referred to a rheumatologist who diagnosed polymyalgia. He then put me on 15mg of steroids again and things improved. I was originally on 60 mg and that was a nightmare! It’s been a bit of a rollercoaster for the last 5 years. My rheumatologist is not keen to give me any more steroids as I now have osteoporosis.

[PMRpro Ambassador in reply to Shandylowe]

Devil and the deep blue sea maybe - but there are medications to deal with the osteoporosis. And if you have PMR, no pred will result in your being immobile - also a risk factor for osteoporosis.

[Shandylowe in reply to PMRpro]

Yes I’m now on Prolia twice a year so hopefully will keep the osteoporosis at bay. It’s a bit of a merry go round.

[DorsetLady PMRGCAuk volunteer in reply to Shandylowe]

Yes it it, hope all goes well..

[Shandylowe in reply to DorsetLady]

Thank you