Hi so after hubby rang rheumatology clinic.. After all the issues abt appointments..I saw a different rheumatology.lady we spike about my symptoms and she said scalp tenderness is NOT part of GCA symptoms.....I was ..surprised and told her so...I got the look and we moved onso...from today I've dropped AGAIN to 15mg of pred..andvthey have added in methotrexate..and folic acid...
After all I've read and people I've spoken to I'm amazed at the drop ..its 10mg a day within 2 weeks but hey...
I'll let ya all know
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Alliekat65
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I have an inkling that it takes so long for so many of us to get diagnosed with PMR, that of course we are so bloody old by the time we get diagnosed. 🤣
Though it is no laughing matter when you happen to be the one who is suffering. 🙄
Alliekat, I do feel you should ring the rheumatology secretary and ask for a call from the specialist nurse saying you are deeply concerned with the advice the rheumatologist has given and reference the following NHS article:
Also say you would like another appointment with someone who is knowledgable about GCA and its symptoms. Polite but firm can lead to a satisfactory outcome.
Alliekat, I manage my PMR with a good GP but mainly from this wonderful site. There seem to be "specialists" out there who know ZERO about our conditions. I only know about GCA from this site but I have read countless times that scalp tenderness is one of the symptoms. I agree with 123-go, she needs to be reported! Wrongly diagnosed GCA can lead to loss of eyesight as I am sure you know..
We are all with you and praying for a good outcome for you.
Hi Alliekat65,Just wanted to say Good luck with everything. You know that with all the expert info you've read on here, you know more about your condition and how it affects you personally than anyone else.
Can you take someone assertive with you or to phone on your behalf so you won't be fobbed off?I'm lucky my GP is lovely, I told her about all the info I've read here (e.g. the advice is 10% slow tapers are best in long run etc.) and she said "you probably know more than me about PMR than I do!" I said obviously I do understand it's not medical advice on here but from a patient perspective and she said "yes but it's lived experience". She said a collaborative plan between Dr and patient is best so is happy to let me taper "slower than medical advice".
She is very young so I guess she has none of the superiority complex some Drs seem to have.
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