Not sure if its PMR

[am64]

So I saw the rheumatologist last week he did x ray and lots of prodding and getting me to do different excercises and concluded not pmr but frozen shoulder. Started me to reduce my steriods again - last month GP got me to reduce from 15mg to 10 mg - consultant reduced from 10mg - 7.5mg this month - 5mg in November - 2.5mg in December 0mg by January.

So I started on saturday now days in and I feel dreadful in alot of pain nausea, hot and cold sweats, cronic back ache ...yuk had to come home from work cos I felt so vacant. Spoke with a GP today and she feels the taper is too much and want me to try 9mg ....so heres hoping.

Dropping to 10 was tough but I was determined to see it through because I am a diabetic and I was worried about Blood sugars - in fact they are fine same as pre steriod level and show good control !!

I have had 3 lots of injections in my shoulder the first in august done by GP was fine and helped me beable to swim in the wonderful warm carribean sea ( yes I has a great holiday in Tobago swiming 4 -5 x a day heaven) the consultant gave me 2x injections last friday and they hurt and not much help- im feeling broken again

I have got physiotherapy assessment in a week but dont know if its frozen shoulder or PMR ? GP told me to let consultant know about the with draw symptoms I have experienced as it might make a difference to his dx

Sorry to ramble but I thought id update my journey to you all

[PMRpro Ambassador]

Do you have symptoms other than a shoulder? Or even both shoulders?

It isn't uncommon for a diagnosis to be frozen shoulder at first - and turn into PMR later...

[am64 in reply to PMRpro]

My rh shoulder is the worst also my rh wrist and elbow. My hips are stiff ( I thought that is because I was over 50 and getting a bit old !) My back pain is just above my kidneys and feels like I ve been kicked - I was very bad afew weeks ago when I did the first reduction 15-10mg then got better but cronic again the day after I saw consultant

My left shoulder is also not brilliant if I move it in a paticular way but generally ok

[PMRpro Ambassador in reply to am64]

Who on earth told you to reduce 15 to 10 in one go? It might work for other things - it generally does NOT work in PMR. Did it all improve significantly on 15mg?

[am64 in reply to PMRpro]

Yes on 15mg the pain and stiffness was still there, but manageable - my GP reduced me as he was worried about the diabetes ....but as it turns out thats all fine I dont eat carbohydrates as well as all obvious sugars - im a T2 diabetic dx about 10years ago last hba1c was 6.8 which is fine

[PMRpro Ambassador in reply to am64]

Which makes it less likely that it is a frozen shoulder. I wish I knew why some rheumies think it is beneath them to dx PMR...

[am64]

Well this guy said he sees alot of PMR which made him think I dont have it ....but the response I have shown to the reduction in the pred made the GP I spoke to tonight (not my normal one) suggest something other than frozen shoulder is going on especially I had originally responded so well to 15mg pred ....hey ho back to the drawing board me thinks - due to see consultant in 3 months

[PMRpro Ambassador in reply to am64]

Yeah - when I hear a doctor claim he sees "a lot" of PMR it usually rings alarm bells...

[am64]

So my tablet is running out of battery so im going to sign out for tonight - going to take 10mg pred tomorrow and start on 9mg when I get my prescription for 1mg tablets tomorrow wish me luck and I will keep you posted on my progress ....thank you for listening it feels good to just write it all down

[DorsetLady PMRGCAuk volunteer]

Hi,

I was just-diagnosed with a frozen shoulder originally, and had 3 cortisone injections in all (4 months apart) none of which gave more than slight relief for a couple of weeks. I also had physio therapy for 6 months, which I now know made the situation worse.

Do you have fatigue as well as other joint problems.?

From personal experience I would say your GP is correct, and the Rheumy not, despite supposing to be the specialist.

As for the reduction plan, well words fail me!

Please keep notes of how you go, so you can report back to both, and obviously if things get worse then back to GP.

[am64]

Thank you for your message, woke up today feeling vey sore I will take 10mg and go to work and see how things go.

[am64]

So I took 10mg this morning and although still in pain my energy levels much better and I survived the whole day at work. Husband picked up my prescription for 1mg tablets so I will try 9 mg tomorrow fingers crossed I can tolerate it .

[am64]

Started on 9mg still sore -of course but energy levels been ok - meant to mention before that my LHKnee is playing up again ...very stiff if sitting to long

[PMRpro Ambassador in reply to am64]

I'd have stayed at 10mg for a few days.

[am64 in reply to PMRpro]

Maybe your right 4 days in at 9mg and I have the fatigue again had 2x 2hr kips today and now its 8.20 and im desperate to go to bed ...which I will once my supper has gone down at bit ...problem I have is getting comfortable at night and waking when I turn over in pain

[am64]

ok saw physio on thursday she got me to do some stretches and gently manipulated my arm and when in a certain position it made cry out in pain said ..yep frozen shoulder ....so thats 2 professionals saying no PMR - seeing my DSN tomorrow and will discuss with her my plan to slowly reduce pred - I am getting nasty leg and foot cramps now.

So it seems i dont need to be part of this community now, thank you for all your support and good luck for the future to you all !

[HeronNS in reply to am64]

Please stay with us for a while and let us know how you get on. If you don't have PMR and you start to get better that will be great. ❤

[am64 in reply to HeronNS]

ok thank you Heron, saw my DSN today and she is very pleased with my diabetes control all good, stable for last 6months at 51 (or 6.8 in old money) despite being on steroids ! very happy as I have lost 10kg since i last saw her in a year...I put it down to stopping eating carbohydrates and also eating loads of okra which i just LOVE !!

she was also happy with me taking control of my own reduction in pred doses, even told me that my GP has a lot of time for me (aweee) and feels I'm very sensible (??!) so she felt I didn't need to book another appointment to discuss reduction with him, unless I felt I needed to !

so I'm going to go ahead and after this week of work (I work Monday,Tuesday Wednesday) i am going to reduce to 8.5 mg and see how I go

[HeronNS in reply to am64]

Nice! ☺

[am64]

ps I have reduced to 9mg ...next step will be 8.5 !

[am64]

So I started another reduction from 9mg to 8.5mg and 3 days in i am feeling totally exhausted ....it seems to be the case with me 3 days after reducing the pred. Still... not at work till Monday so after walking the dog around the common just now which felt like a marathon I am going to rest.

[PMRpro Ambassador in reply to am64]

I find even with using the DSNS approach that for the first 3 or 4 times I challenge my body with the new lower dose I feel "different", can't explain it but there is something, but then my body seems to decide it isn't too bad after all. It happened at all doses so isn't necessarily the adrenal function reminding me it's out of practice. But the fact each day is a one-off makes it easier to deal with. A bit like the 5:2 diet - you are only ever dieting for one day at a time, tomorrow is normal!