15mg pred and still in pain

[3pinplug]

My brothers, sister and I have been helping 83 year old Mum navigate PMR for 4.5 years now. The last blood test showed PMR had gone, due to continued pain though the doctor increased steroids from 9mg to 15mg (Mum had been at 9 for a while although still in pain). Now on double dose of anti-inflamatories and strong paracetamol but still in pain. Mum's been more and more immobile this year and is now housebound because of this. We're thinking of getting a private assessment to get some answers. Has anyone been in this position before with PMR?

[DorsetLady PMRGCAuk volunteer]

Hi,

If your mum has been suffering on 9mg and even with the increase to 15mg one has to wonder is she has something else going on as/instead of PMR.

It might be sensible to get a second opinion, and don’t put too much credence on the blood great - they aren’t always as reliable as some doctors believe.

If you say roughly where you live, we may be able to suggest a rheumatologist

[3pinplug in reply to DorsetLady]

Hi, thank you for the info regarding the blood test. It's Herts/Bucks/Beds area.

[DorsetLady PMRGCAuk volunteer in reply to 3pinplug]

Well our go to man is Prof Rod Hughes who works out of Chertsey. Not sure if that would be any good.

topdoctors.co.uk/doctor/rod...

I’m in different time zone at moment -but others will be along shortly with more suggestions.

[PMRpro Ambassador]

"The last blood test showed PMR had gone, due to continued pain though the doctor increased steroids from 9mg to 15mg (Mum had been at 9 for a while although still in pain)."

If your mother was taking 9mg of pred when the blood sample was taken no test in the world can tell you if the PMR has gone. If she still needs pred to keep the symptoms under control - the PMR is still there. Unlike most autoimmune conditions it burns out in about 95% of patients and goes into remission sooner or later. But the only way you know that is being able to get to zero pred without the symptoms reemerging. You can't tell if it has gone when you are still on pred. And if she has symptoms - whatever is causing them hasn't gone. It may or may not be PMR.

If you can get to Chertsey to Prof Rod Hughes you will get a fair and sympathetic hearing and he really does know his stuff as well as being a very nice person.

I think these contact details are the correct ones - they seem to vary from site to site!!

finder.bupa.co.uk/Consultan...

[3pinplug in reply to PMRpro]

Thank you

[SVLady]

I am sorry your mother is suffering so much and hope you can find a solution that makes her comfortable and able to continue doing things she desires. I am concerned that she is taking anti-inflammatories though since I believe they are not to be taken along with steroids due to the risk of esophageal and GI problems and bleeds. This is something to ask her doctor when you get in touch again. I wish you/her the best.

[3pinplug in reply to SVLady]

Thank you