update: Well I’m virtually out of prednisone as... - PMRGCAuk

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update

Seanfleming25 profile image
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Well I’m virtually out of prednisone as tapering down due to negative scan. Symptoms are awful and spoke to my GP who now wants to prescribe naproxen for my head pain. I’ve advised her I think the Consultant is wrong as my scan was undertaken 2 weeks after I’ve been taking prednisone and so no signs of inflammation. I’m really not sure what to do apart from asking for another referral elsewhere. Does anyone have any advice regarding consultants in other areas. I’m currently in Dorset.

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Seanfleming25
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Which hospital were you referred to? If is wasn’t Poole, maybe try that - and Dr Khurshid - I know he has spoken to the local support group

uhd.nhs.uk/directory/name/1...

If it was him, then maybe you need to consider a private appointment with Prof Rod Hughes at Chertsey - is that a possibility-

finder.bupa.co.uk/Consultan...

I found naproxen did nothing for my undiagnosed GCA…so hope you can persuade GP to extend Pred until you get a second opinion.

Grammy80 profile image
Grammy80

Like DorsetLady, my GCA went undiagnosed for almost a year. I'm in the states and can't offer the specifics that she has....but getting a second opinion is a must if you continue to have symptoms. I hope these options are available to you. My best hopes for you. Does anyone do biopsies at all? It is still the gold standard and it was a piece of cake. Have you had recent bloodwork of CRP and ESR....please continue to reach out for an answer.💞

PMRpro profile image
PMRproAmbassador

In the meantime - try the naproxen which if it IS GCA will do nothing to help and the GP will have to think again.

And I can only echo DL's suggestion of a trip to Chertsey for a private appointment with Rod Hughes if that is an option.

The final possible option is going to an ED in a different Trust to the one your consultant who doesn't appear to quite get what a negative scan means! It isn't much different from a biopsy - that bit of artery may not have been affected AND you had been on prednisolone for a couple of weeks and that can also influence the result.

You need a different Trust with a different set of rheumatologists or you risk the same assumption.

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