So it may be PMR as well!!!!: Went to Rheumatology... - PMRGCAuk


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So it may be PMR as well!!!!

altywhite profile image

Went to Rheumatology clinic on Monday, still not feeling great and still on 9.5mg pred. Gave my nurse a list of how I'd been feeling since Christmas...tired, sore, achey, reflux, dental work etc!!! She was a bit concerned that I'd stopped the AA but agreed to let me stay off it. My last DXA scan was July 2015, after I'd been on high dose pred since the February, and it was normal. She was wondering whether to increase my pred again or give me a kenalog injection (which do seem to help me...I've had 3 previously).

So off she went to get the consultant...not mine..she wasn't there. This one was soo rude and abrupt..first comment was that I was on a strange dose of pred and that I didn't look like I'd put weight on with it!! I was fuming..he doesn't know dare he assume!! I HAVE put weight on although I have lost a little but I am still over a stone heavier than I was!! I didn't even trouble to explain about my slow pred reduction.

He mentioned polymyalgia in passing but didn't bother to explain anything to me. In the end he said I should stay on 10mg pred for 12 months and then they'll see me again. Didn't even say goodbye when he left!!!

My nurse was a bit embarrassed I think and asked if I thought that was OK. But then..bless her...she thinks I should have an actual appointment to see my own consultant , so I go back in 3 months. I'll try and stay on the 10mg but if I feel worse or better I'll call the helpline and let them know.

Sorry for this.....he annoyed me so much..and I wasn't feeling great that I wanted to get it off my chest and I know no one here minds that!! Thank you all. :)

13 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer


I'm sure there are some very good Rheumies out there, but gosh do some of them do their best to give all a bad name!

My school motto was - Manners maketh Man - not bad for an all girl school! I do try to adhere to it, but if I'd been in your shoes I might have told him to watch his!

PMRpro profile image

I'd probably been rude back - which probably doesn't help.

What is it about so many rheumatologists?

What on earth did he mean that you did not look as if you had put on weight if he had not seen you before, what is he a time traveller? Like my latest rheumie saying I don't look like someone who has PMR. No wonder they have trouble diagnosing anything.

I think I was so annoyed I was quite speechless!! My consultant is the opposite...she's lovely and listens to you. The nurse led clinics are in 2 hospitals and I choose the one nearer home....I think I've just been unlucky with the consultant on duty!!

Hidden profile image

I know what we should do. We put that doc in a room of us fellow members . We could simply ask him questions put him on the spot......but you know I should probably not be included because I would want to molasses him and bring out the feathers.

mega profile image
mega in reply to Hidden

That says to me that you SHOULD be included!

Yes it's good to have a place to let off steam isn't it with folk who understand. What is it with many of these doctors? Almost makes you wish they could have PMR/GCA themselves so their understanding and compassion would improve. Here's hoping that you soon have some improvement in your symptoms and your next appointment in 3 months time goes well.

Jackie x

altywhite profile image
altywhite in reply to Jackoh

Thanks Jackie :)

Hurrah! For your nurse's quiet solidarity. It would have been worse if he'd said well you've blown up like a balloon. That's what he wanted to say and there you were all slender. Courage and onward!

PMRpro profile image

Thought you might like to read this post from yesterday on another forum:

"So I go to my Rheumatologist today, getting ready for him to give me my Prolia injection and he informs me that he will no longer treat me if I do not go off the prednisone. He has wanted me to taper by 2&1/2 mil every week and when I got down to 7&1/2 mil I had a terrible flare and went back up to 10 mil without asking him. Today he said that he wants me to taper by the 2&1/2 every three days until Im down to zero and told him why, Im in alot of pain in the groin and shoulders and when I get to below the 7&1/2 my scalp begins to hurt. He said all of your blood work is normal therefore you dont need the pred any longer. I then explained to him that the Neur Opthomologist thinks I do need to be on it and he then tells me to have him take over my treatments, he was so rude and uncaring and now I dont know what to do. he thinks a year on the red is long enough and even went so far as to say was addicted to a fake pain reliever. I am so upset and beyond knowing what to do. Needless to say I did not let him give me the injection, I was so angry to be treated like this that I just left. Now what do I do, find another Dr?"

One really really is left to just ask: WTF?????????? It is obviously a bad time of year for rheumies...

altywhite profile image
altywhite in reply to PMRpro

Oh wow!!!!! He sounds worse than mine....what a shame! He's just not listening to her at all is he?? And as we know...blood results don't always show the picture ..not for everyone. I would definitely be going to someone else!! I hope she gets sorted soon ...hopefully she has a good GP.

PMRpro profile image
PMRproAmbassador in reply to altywhite

She has spoken to her neuroophthalmologist - who I think dx'd the GCA originally and said that belonged to a rheumy. I hope he is happy to take her back - he's suggested tocilizumab too.

Hello altywyte,

I'm a little late in the day but just wanted to commiserate. Some of these medics are so arrogant and take no account of how rotten you're feeling.

I'm afraid I sound like you - take the unfriendly, unprofessional attitude until you're outside the surgery/hospital and then regret not telling them NOT to take that attitude with you.

I had a cardiac consultant like that once who asked lots of questions after an echocardiogram, but nothing else and just said as I left his room 'and stay away from the coffee and the wine'. Two cups of coffee a day and two glasses of wine in the evening. He offered no reason and was half my age too. Why was I so reluctant to take him to task?

I have been more fortunate with my GCA contacts but I am now resolved to be more bolshie myself with these self-regarding types.

Hope you're happier with your familiar consultant and best wishes for your future health.


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