Not GCA or PMR after all.

[Tiki15]

in January 2022 I was prescribed Prednisolone for probable GCA. In February 2023 after MRI, CT and Pet scan I was told I didn’t have GCA or PMR and that my head pain was Trigeminal Neuralgia. During this time I had been tapering and finished Prednisolone in February. The rheumatologist referred me to a neurologist and signed me off. Neurologist also also mentioned TN. She has referred me to another neurologist who specialises in movement disorders and referred me for a lumbar puncture. I have been experiencing stiffness and awful pain in my muscles that are getting worse and wondered if this is because I no longer take Prednisolone. I just feel like I am going around in circles. Not sure if this is the right group to post. I suppose I just want to unload. I feel that Prednisolone has ruined my quality of life. Thank you for listening.

[DorsetLady PMRGCAuk volunteer]

If you are still suffering pain and stiffness I would query your diagnosis of it not being PMR.. and if it’s got worse since stopping Pred then I think therein lies your answer.

As for Pred ruining your QOL -would say not taking it is ruining it at the moment.

Do ordinary painkillers help in any way? If they do, then maybe it’s not PMR-if they don’t, it probably is…

[Tiki15 in reply to DorsetLady]

I have been discharged from rheumatologist so will have to go to doctor. I am under neurologist as a lot of my symptoms are neurological. Waiting for lumbar puncture. Paracetamol or Cocodomol don’t help. Thank you for your response.

[piglette in reply to Tiki15]

If painkillers don’t work, this could point to PMR where basically only steroids help and painkillers are pretty ineffective.

[Tiki15 in reply to DorsetLady]

I had a look at my PET scan today to see why rheumatologist said I don’t have GCA or MPR. I wasn’t actually diagnosed with PMR in the first place though.

I was on 3mg of Prednisolone when I had PET scan. This is what the PET scan report says. Well part of it as one of the other things was enlarged heart! ……. No current changes of definite large vessel vasculitis are demonstrated on PET-CT. Note the patient is on steroids which could lead to a false negative result. No definite changes of polymyalgia rheumatica.

Sorry to take up your time. Thank you for your help to me and this group 🙂

[DorsetLady PMRGCAuk volunteer in reply to Tiki15]

Never a waste of time....🌸

[Tiki15 in reply to DorsetLady]

thank you ❤️

[sampete]

I had TN and it is very painful feels like electric shocks going through one side of your head and face. Sometimes you can't bear to touch your face or eat I was on lots of strong painkillers but then had to have Microvascular Decompression operation. That was 10 years ago and it was one of the best things I have ever done . I wish you well and hope you get well soon.

[Tiki15 in reply to sampete]

Yes TN is the most painful and relentless pain. Thankfully I don’t get it all the time but when I do it lasts for days every few seconds. I am glad you have had successful help for yours. 🙂

[Digyellow]

I am so sorry you are having such a bad time and so confusing. I have been up and down with Prednisolone and am now on Methotrexate which we are hoping will help me to come off Steroids, but we will see! It is a difficult journey and I feel for you. Keep going and you will get there. All the best. Liz

[PMRpro Ambassador]

Was your PET-CT scan done while on pred? At what dose? I see you were on 3mg - and the radiologist points out the possiblity of a false negative. My money would be on it being PMR reappearing now you have no pred.