I went to see Professor Dasgupta yesterday and it appears that I don't actually have PMR after all.

[suzy1959]

So, after a year on steroids, that have not been necessary,and 20 months in pain, I have to get off them and find some other forms of pain relief. I am angry with the previous 2 Rheumatologists who have not been clear about my diagnosis nor offered any viable alternatives to the Pred. Who knows what long term damage the pred. has done.

Prof. Dasgupta said I do have fibromyalgia and will put me on Amytriptillin. He is also doing some more investigations to see what is causing the inflammation. He thinks I may have Sacroiliitis. In any case, he said that PMR is being over-diagnosed and steroids are being over-used.At least I now finally have a plan and will have to ride out the pain that I have always had when reducing the pred. He feels it is likely that that pain is all due to the streoids anyway. He wants me to reduce by 0.5 mgs per week which means another 6 months before I can put it behind me.

Thank you to everyone who has responded to my questions here, especially Celtic who has been supportive, sensible and informative.

[polkadotcom]

What a mess for you to clear up! 6 months is a comparatively short time - hopefully by the Spring you will be steroid free.

I also have Fibromyalgia and amitriptyline has helped me considerably. I do hope that you find the same.

[suzy1959 in reply to polkadotcom]

Thank you for your good wishes and for your help over the last year.

[Polywotsit PMRGCAuk team member in reply to suzy1959]

All best wishes Suzy! Let us know how you get on.

[Celtic PMRGCAuk volunteer]

Goodness Suzy - a very worthwhile appointment then! I can so understand your feelings of anger about misdiagnosis and unnecessary treatment, not just with steroids but with MTX as well. You must feel so reassured that Prof Dasgupta will now be further investigating the root of your problems, and I hope that meanwhile the Amitriptiline will ease your pain. Lots of good luck wishes, Suzy, and do please keep in touch and let us know how you are

[jinasc]

Suzy

One thing, once you get down to zero, ask for an Adrenal Function Test.

It can take quite a while for your adrenal glands to kick in and become fully functional as pred knocks them out and they wake up slowly as you reduce the pred and finally when you stop altogether. This can take some time - up to a year so you need to be aware of exactly where you are in relation to how your adrenal glands are functioning.

[pennyw Administrator PMRGCAuk team member]

Suzy ... I hope you will tell your story on Tuesday at the NorthKent PMRGCAuk support group. I do hope that you are now on the way to recovery. The mis-diagnosis is all very worrying. Thank goodness you saw Professor Dasgupta.

[Telian]

A very worthwhile appointment Suzy - better late than never and best wishes to you. Hope everything works out.

[suzy1959]

Of course, this was an initial post and, a few months later, Dasgupta had to eat his words when my inflammation showed up on a PET scan as classic PMR!!! I am now 6 years into it and have always struggled to get below 10mgs. , flaring very easily when I try.

Having a very positive diagnosis has, however , been very useful over the years!