Not sure if I have PMR and my preds are not working

Hi all ive been reading this site since I was diagnosed end sep 2016 but have never posted before. .first of all I have to say I am on preds but they are having no effect apart from all the terrible side effects tiredness and pain in all my joints moon face . I am convinced that I now do not or maybe never had pmr . I had gone to my doctors with pain in my shoulders but we had been treating this as a ongoing neck injury but then I started to have really bad headaches and pain in my temple and jaw after a few diagnoses my doctor decided that I could have pmr did a test and my inflammatorys were very high so she put me on 8 x5 mg tablets for a few days and the pain in my shoulders and head went it was then she decided that I could have gca she then increased my preds to 60 mg a day so I went to hospital and had a biopsy’s at the hospital they found it hard to find the artery and the procedure took over an hour a week later it came back negative but as we know this is inconclusive. .i was then asked to reduce the preds which I have been doing I am now on 15mg a day this week the doctor now says she is not sure as the preds by now should have given me my life back which it has not if anything it is taking my quality of life away I have never felt so ill and I am thinking it is the preds and not pmr I have been referred to a specialist and see them on the 9th feb would anyone on hear have any thoughts on this .since coming down to 16mg I am having headaches but not as intense as before also the doctor is not sure if I have something wrong with my jaw ive been to the dentist and he says that my jaw is out of line so I suppose this could be why I have the headaches but no one can really say which is very frustrating at the moment all I want to do is to come of the preds. I suppose what I am asking is it possible that the preds just does not work for me.

[polkadotcom]

You could well have something which isn't PMR, some autoimmune conditions present with similar symptoms. There are some which don't respond to prednisolone too.

I do hope you have a positive appointment with the specialist and that you feel much better soon.

[Hidden in reply to polkadotcom]

thank you for your reply I suppose I'm just totally confused by it all as I thought I would be feeling much better by now . I really do hope the rheumatologist can shed some light on it would you know what happens on these appointments .

[PMRpro Ambassador in reply to Hidden]

You will be examined and a clinical history taken - so if you have problems remembering things/times it is helpful to sit down and write it out as bullet points to take with you. They will ask about when, how long, how severe, and where your symptoms affected you. Since you have been/are on pred they should ask about the effect it had on your symptoms when you started and when you reduced.

Being on 60mg pred will make often you feel fairly unwell - but if you have GCA it should be relieving the pain and some of the other symptoms.

[Hidden in reply to PMRpro]

thank you I find this very helpful, I do find it hard to remember things now but will sit down and put my brain in gear and write it all down and take it with me .

[PMRpro Ambassador]

I'm not quite clear from your post - did the 60mg dose take the pain away? If you have GCA - and as you know it is possible even without the biopsy being positive - then 15mg won't "give you your life back".

However, as polkadotcom says - you have a specialist appointment, wait and see what they say. And like her, I hope they come up with an answer and you feel much better very soon.

[Hidden in reply to PMRpro]

thank you for your reply I was put on 8 x 5 mg a day to start and after the first few days the pain went from my body and my head so I think that made the doctor suspect pmr and gca and the pills went up to 60mg a day to treat the GCA but a week and half later when the results came back negative she aske me to reduce down to a starting dose 15mg a day to treat the pmr . when I went on the 60 mg a day that's when I started feeling worse and have continued feeling terrible.

[piglette in reply to Hidden]

My gosh, are you saying you reduced by 45mg to 15mg in one fell swoop? I should think that would make anyone feel pretty rough.

[Hidden in reply to piglette]

hi no I have been reducing since I had the biopsy and it was all clear so that must have taken me to end of October then I started to reduce

[Hidden in reply to Hidden]

It would seem puzzling 🤔 with so much going on..

I started with PMR one year of pain without diagnosis then 15 mgs a day .... to me it was a miracle.. Then came GCA and we upped me to 50 mgs. It was awful I got relief from pain but went into all the nasty side effects moon face, sweating etc. no energy..

I shared that to tell you all my tests come out pretty normal with no real elevations so my doctor goes by my symptoms..

I crashed at 7 mgs due to old doc wanted me off prednisone n ended back up to 20 now doing the slow decrease and at 16 mgs..

Good luck

God bless

[Hidden in reply to Hidden]

thank you it seems that there is no normal to this PMR/GCA it all depends on how we feel and we all feel differently I would not mind taking the preds if I felt any better I'm down to 15mg a day now. but still in lots of pain and have always been . I hope you feel better soon.

also could I ask with your GCA is your symptoms the headaches and jaw pain thanks again

[Hidden in reply to Hidden]

OK for me the first was the right side pain over my temple.. I have always had chronic headaches so couldn't go by that... Then came soon after the jaw pain with chewing mostly but again I grind my teeth.... So hard to figure until I got the scalp tenderness with sores.... My labs were not bad so I had classic symptoms which my doc treated.

I did not know about GCA prior so did not have any idea what symptoms were.

[Jenniyr]

Sounds very like me. Preds have just not worked for me. Seeing a rheumatologist soon.