Well, that was a funny old do!: A quick update on... - PMRGCAuk


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Well, that was a funny old do!

Mike1964 profile image

A quick update on my long running saga of trying to make some sense of just what the flipping eck is going on! Diagnosis of PMR Feb 2018 (Normal bloods) but then having issues with eyes, ears, jaw and tongue for last 2-3 months. Spoke to Rheumy by phone, he moved me from 20 to 30 then 60mg of Pred. I ended up staying on 60mg for 2 weeks. Pain in eyes, jaw and ears didn't change. I updated Rheumy by phone weekly, after the 2 weeks he had me reduce to 40mg for a week then 20mg, I saw him again on Friday (Yesterday). Sadly Fridays 5 minute appointment wasn't overly productive, I foolishly thought we would sit and talk and try to find out what was going on. Dr Khan said I obviously didn't have GCA and that we needed to park this immediately, he then told me 3 times in 5 minutes that I had led him along this path. Have calmed down a bit now but to be honest was pretty upset yesterday. All I did was tell him my symptoms! when I asked what I should do as I still have them he said "I don't know whats wrong with you" I guess the good news is he's going to see me again in 3 months time so at least I've got something to look forward too :-) at least I can laugh now. I'm actually booked in to see a private Myofacial pain therapist next week to see if that could be a possibility? failing that if anybody has a crystal ball? Boy it's been a rough few weeks, my poor old body feels like its been in a train crash.

24 Replies

Mike I am very cross that the doctor spoke to you like that. How dare he. You did absolutely nothing wrong and if he screwed up then he should own it and not try to shift blame to the poor old patient. I would be very upset to be treated like that. Please don’t blame yourself. Promise??

Hi Daisychain. Thank you for your kind words. Fortunately I have an advantage here, I'm a man, I have young children, if push comes to shove we also have a cat, It's never my fault! :-)

Hidden profile image

I laughed at loud when I read, "I don't know what's wrong with you." Okay, Doc, thanks for checking in! Hahahahahaha. How frustrating, huh? I hope Myofacial pain therapist comes up with something... Good luck!

Mike1964 profile image
Mike1964 in reply to Hidden

Thank's Melissa, rooting for you too, your having a pretty cack time of it yourself :-(

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Hidden in reply to Mike1964

"Cack," great word.... Yes I am!!!!! ....but this too shall pass, or I'll die and be done it, anyway! Hahahahahahahahaha! ; )

Mike....are you an Aussie like me?

Definitely a Pom :-) but I do think it's lovely that we have such a world wide community.

PMRpro profile image

I repeat - I am still astounded at the attitude. But I have no idea what to suggest now - except I wouldn't be keen to see HIM again.

Mike1964 profile image
Mike1964 in reply to PMRpro

Hi Pro, Well as I said at least I can laugh about it today :-). I followed an old post of yours in which you mentioned Myofacial pain, when I looked into it a bit more the tendons? running along your neck can affect all of these areas plus rather interestingly the top of the scalp. I figure it's got to be worth a try.

I really have appreciated all of your kind and wise words, thank you.

PMRpro profile image
PMRproAmbassador in reply to Mike1964

Fingers crossed - although I do know something else that can replicate GCA but I would have thought the pred dose would have eased that at the level you were on. Looking forward to hearing how you get on.

PMRpro profile image
PMRproAmbassador in reply to Mike1964

PS - I would get PALS involved sooner or later. Really - that is totally not on.

Pastit profile image
Pastit in reply to PMRpro

My thoughts exactly!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

What a charmer!! He doesn’t know what it is, but it’s your fault for leading him up the garden path! Let’s hope he has his thinking head on next appointment🤔. As I’ve said, along with many others, good job WE have a sense of humour.

Mike1964 profile image
Mike1964 in reply to DorsetLady

Hi DL. How are you getting on? are you now walking pain'ishly free?

Thankfully I've had the ability to smile sweetly whilst thinking far from sweet thoughts for a long time now, it still comes in handy! :-)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Mike1964


Operated knee is good thank you. Unfortunately had a flare up of bursitis/tendonitis/whatever on opposite hip which is giving me grief at the moment. So not as happy as I’d like to be!

But never mind we’ll get there...eventually! Smiling through gritted teeth at times. 😬

How dispiriting Mike and angry making. I would still be worried that a higher dose than 60 might have done the trick. Others have been in that position. I would be looking for a less defensive doctor, I really would.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

I agree!

Hi Jane, sorry for the late reply. I shall remain very mindful of the symptoms and will indeed squark like a stuck piggy if they get worse. I shall try the Myofacial pain therapist to see if it may be transferred pain? to be honest feel like I've run out of options really. It's certainly easier being well than sick!

Mike. I would love an update. How are you? I am Still furious with that git of a doctor x. How dare he try to blame you He needs telling that he is an idiot Linda.

Hi Daisy. Sadly things are pretty awful here. My poor wife died two weeks ago. I have a 12 year old disabled son to now raise on my own, plus 2 others at home. In the middle of arranging her funeral, she was only 53. The stress of everything is killing me. Have stayed at 12 mg so far but my body is now a mass of pain constantly. 😭

Cyclegirl54 profile image
Cyclegirl54 in reply to Mike1964

Mike1964, very sorry to hear about your recent loss. I hope you are getting support from other family and friends.

Mike1964 profile image
Mike1964 in reply to Cyclegirl54

Thank you

I don’t know what to say! I never do in such tragic cases!😟 What a terrible tale of woe! Had your wife been ill for a long time?

Do NOT stay at 12 mg. You need to up it just to be able to cope.

I wish you the strength and will to carry on.


Oh Mike,

So very sorry to read that your wife has died. You have so much to deal with, and with physical pain as well, perhaps, your body is reflecting the strain you are under it does happen.

Did your Rheumy know your situation when you saw him?

Having to make a complaint to PALS is another thing you could do without.

I do hope you are getting some help with your family, and get results from myofascial app.

Keep strong


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