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rs Clouting

I was diagnosed with PMR 12 years ago and took steroids for 11 of these. I had headaches and pain in right temporal lode most of this time. Last year I saw a rheumatologist who after a scan diagnosed that I never had it. Discs at the top of my spine were pressin g on the nerves in my head and suggested Physiotherapy. Six weeks ago I was so depressed with it I saw another Dr who prescribed Gabapentin. After two days my headaches vanished and it so far has made a big difference to my life. In the last 12 years I have taken so many steroids, paid to see a Nurologist who asked if I was imagining it and it was suggested I had Methotroxate, as I was having to start Chemo at that time my oncologist did not want me to take it. Try all avenues. good luck

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How awful to be on steroids for all those years, and not needed!!!

I'm also suprised that you hadn't seen a rheumatologist long before you had.

You say that you had temporal head pain, but that would suggest GCA and not PMR ?? [ only my opinion ] unless you were also having the body aches and pains that come with PMR

Are you now weening off the steroids,? I have never heard of Gabapentin, I will google it.


Hello Clouting

What a terrible experience for you. Misdiagnosis at its best!!! I'm so surprised that no-one thought outside the box when your pain wasn't responding to steroids over so very many years! It must seem like a miracle to at last be out of pain and long may that continue for you.


Hi rs,

Your story is quite shocking - it makes me wonder if you have been left with lasting damage after years on pred. I hope not.

All the best to you now. You really deserve it.



Thank you for your comments. The gentleman I wanted to see who dealt with Temporal Arteritus I was not allowed to see through my Primary care trust - out of the area.

I paid to see a rheumatologist who suggested Methotroxate and then had to pay to see a consultant rheumatologist who did a scan of my head and an exray of my neck and foun d the problem with my upper discs, touch wood much better


I'm glad to hear that you are much better. I assume you are now completely off steroids.


Only yesterday I heard about 'crowned dens syndrome', which is a condition where hard crystals form at the top of the spine, causing neck and head pain like the pain of GCA, along with raised ESR and CRP levels. This might explain some of the cases of suspected GCA in people who are 'too young' to have it, i.e. in their 40s. Crowned dens is spotted through a CT scan. So perhaps we can look forward to the time when people will have a scan as of right if they haven't improved after, say, three years. (Not holding my breath though).


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