PMR and infection?

[Leafsong66]

Happy New Year Everyone, I posted 12 days ago re Holiday Help re PMR. I ended up presenting to Emergency on New Years Eve after 13 days of PMR symptoms waking me at around 2 am every night. I also had a fever, nausea and had almost passed out. I had been taking 10 mg of steroids for 11 days ( up from my taper of 5 mg for GCA since July 2023). After four days I was discharged with the new plan of taking steroids at 8 pm. This has worked to stop the nightmare crippling attack. However I am still left with nightly recurring Fevers, extreme fatigue, unbearable back rash that flares up just before steroids are due and of course the joint pain and stiffness that creeps steadily back early evening.

I was able to see my GP yesterday who was shocked at how decrepit I was ( I’m only 58). He said that because my CRP has been elevated and continues to rise for the last three tests we must find out what infection seems to causing all the unpleasantness. So today I’ve had almost every blood, nasal, urine and sputum test known to man.

Today the Rheumatologist rang and said if there’s no answer from the tests, a PET scan needs to be done.

Have others had a PET scan? Does it use contrast dye? Does anyone else have a similar pattern of nightly fevers ?

Thank so much for your input dear Forum friends.

[PMRpro Ambassador]

A PET scan uses a radiolabelled form of glucose as the tracer - it is processed by your body in the same way as glucose so there are no reactions to be concerned about. It is taken up more by inflamed tissues (or cancers when the PET scan is being used for that).

nhs.uk/conditions/pet-scan/....

mayoclinic.org/tests-proced...

I had one done just before Covid - absolutely nothing exciting about it. It is 2 scans done one after the other, a CT scan and a PET scan but they only take a few minutes. You get an injection of the labelled glucose into a vein and sit quietly for about an hour to allow it to distribute around the body before the scan is done - take a good book, I was allowed to read, but you may just rest in a reclining chair.

[Leafsong66 in reply to PMRpro]

That’s so helpful dear PMRPro! Thank you xx

[Rugger]

I'm sorry to read of your problems, but glad to hear you have good care from your GP and Rheumatologist.

I experience night sweats when my inflammation is uncontrolled.

I had a PET-CT scan which clinched my diagnosis of GCA-LVV. It is as PMRpro described and in the link she provided. After the one-hour lie down, it took 25 minutes to scan my entire body. Wear warm clothes and socks, as the machine has to be kept cool, so the room is cold!

PMR: 2016

GCA-LVV: 2019

[Leafsong66 in reply to Rugger]

That’s really helpful to know. Thanks for sharing that. Hopefully I’ll have some answers soon. All the best with your health!

[ngchgc]

I have had 3 scans so far, one is iodine based injection which I am allergic to, so they give a different type. other 2 where nuclear based.

Are you taking Resprim forte as an antibiotic? I take that Fridays and Mondays, morning and night, while I am on Prednisone and Actemra.

I had the nightly fevers and severe sweats, the bed was soaked at times! Now on all these meds no more, thank goodness.

[Leafsong66]

no antibiotics except one course of Doxycycline for mycoplasma Pneumonia