Rheumatologist call- not PMR?

[Lyndalou62]

Hi everyone- i just had my first phone call appt with the rheumatologist who thinks I dont have PMR?

The reasons he gave are that it took around 10 days to be relatively pain free after taking initial dose of 20mg pred and that my blood tests are in normal range.

So dont know what to think!!!

He wants to do xrays etc and says he thinks it will show wear and tear arthritis!- so I said bilateral pain and unable to use arms seems extreme for wear and tear- he said it can happen with some form of impingement thrown in!

Says it will be a couple of months before the appt so to carry on with pred for now.

I am flumoxed- any got any thoughts on what rheumy says?

[MrsNails]

Well at least he’s left you on the Pred! I felt much better in 3days but by 10days l was different again, so not everyone reacts exactly the same....

See what the X-rays show & he’s not leaving with it without checking further which is good.

Up to 20% of people have ‘Normal Blood Markers’ did they take the bloods before or after you started taking the Pred?

Kind Regards

MrsN

[Lyndalou62 in reply to MrsNails]

Hi Mrs Nail- blood was taken before pred- i mentioned to him about the 20% with normal markers and he said those cases are diagnosed but not necessarily have PMR. Glad he is doing further investigations though.

[MrsNails in reply to Lyndalou62]

They do like Patients to tick all the boxes but we are not all the same, some of us are Atypical! (Me, as a rule 😉)

[Lyndalou62 in reply to MrsNails]

I know- Im just going to go with the flow and see what turns up- thanks for your reply😊

[Charlie1boy]

Just to say, it took three weeks on 30mg for the pain levels to reduce to a reasonable level. Not everyone reacts the same way to PMR and pred.For me the inflammation levels were high before starting with pred, but have been fine ever since, and that is for six years.

Hope you manage to get things sorted.

Paddy

[Lyndalou62 in reply to Charlie1boy]

Thanks for your reply Paddy- I hope so too😊

[PMRpro Ambassador]

Some people need more than a week and some need more than 20mg to get a good response of the sort he is obviously convinced happens to everyone! The stiffness and muscle pain improved for me in under 6 hours - but the improvement continued for a couple of weeks and even then there was some pain left. Hands, feet and hips took a few months. #

Up to 20% of patients with PMR and GCA have blood markers that are in normal range - but that doesn't mean they aren't raised for you. The normal range is the range of results that are found in 95% of apparently healthy people, not a range found in any particular individual. The range for ESR for example is 0-20. If your personal normal is in low single figures, like mine at 4, then running at 16-18 is very raised for YOU but still "within normal range". That was why I kept being told there was nothing untoward. How arrogant of him to say people with PMR and normal range results that he never say don't have PMR!! They haven't managed to identify anything otherwise for me - maybe he'd like to suggest something?

[Lyndalou62 in reply to PMRpro]

Hi PMR pro thanks for your reply. I Googled him and hes only been qualified for 4 years- not to cast aspersions on his experience with PMR- but it makes me wonder- hey ho- such is life- I guess I will just have to go with it and hope there is some kind of conclusion at the end of all this- he may well be right and then I will be grateful if he does come up with a correct diagnosis if it is something other than PMR.

[Thelmarina]

It took me ten days on 25mgs Pred before I got relief - partly I think because it was a late diagnosis and there was a lot of inflammation. I was in so much shoulder and groin pain I was fast becoming housebound. Hurray for Pred, for getting my life back. Have faith, carry on for longer and check how your body responds before listening to your rheumy. The huge variety of advice shown in this Forum demonstrates what an unknown science it is! 😀

[Lyndalou62 in reply to Thelmarina]

Thanks for your reply😊. Im just going to keep an open mind at the moment and carry on with the pred until I know exactly whats going on.