On going investigation

[alysonkerry-]

Hi there I wrote a post a week ago or so my husband has suspected PMR and has had his prednisone increased to 30mg a day which is doing the trick he has no pain. His bloods came back with one inflammatory marker down but one had gone up not sure if crp or esr this was after being in initial prednisone dose of 15mg. He had a chest x ray which came back clear but after seeing rheumatologist he had more bloods and a lateral chest x ray it was the rheumatologist who increased dosage to 30mg of pred which was last Friday he has now received a letter to go for a CT scan on his aorta and thoracic areas? He has no pain or swelling anywhere now and no explanations of why CT scan requested now we have to worry for the next few weeks until scan done and results found out the rheumatologist just said when we left hosp she would send an appointment out in the post for a few weeks time can anyone reassure me that sometimes a CT is done as routine investigation or will there be a specific reason for it ? Huge Thankyou to anyone who can spare the time to share any info or advice. :))

[SheffieldJane]

Yes mine was because my Rheumatologist leaves no stone unturned. Nothing was found but other conditions were discounted. Try not to worry too much. If I remember correctly it was to look for other forms of Vasculitis, affecting my Aortic Valve. I would much rather have a thorough, interested, Rheumatologist. Let us know how he gets on.

[alysonkerry- in reply to SheffieldJane]

Thankyou so much I agree would rather have a rheumatologist who left no stone un turned and she was very thorough last week when we saw her for the first time really appreciate your reply will let you know how we get on and thanks again glad to hear your doing well

[PMRpro Ambassador]

I suspect that the need for 30mg to manage the symptoms is prodding him to suspect it could be more than "just" PMR - they seem to be coming round to the idea that many of us who are harder to manage may have large vessel vasculitis that is causing the PMR symptoms. CT or PET-CT (do you know which it is?) probably SHOULD be done routinely but the wait for the scan and cost probably means they haven't been doing it as often as they should. Also these are relatively modern innovations - and older doctors possibly don't always have them in mind because we KNOW they don't keep up with the latest literature.

I wish my guy would offer a CT ...

[alysonkerry- in reply to PMRpro]

Thankyou your response is very much appreciated and I think your right at least he’s getting a CT scan hope you keep well will post out one once we have results and thanks again

[Vaggers]

My pmr was steroid resistant until my prednisone was upped to 40mgs. My rheumatologist ordered a PET ct scan to rule out large vessel vasculitis. Best to rule things out. My scan was fine.

[alysonkerry- in reply to Vaggers]

Glad all turned out well re scan and your info is very reassuring thanks again :))

[Marijo1951]

I was diagnosed with both GCA and PMR on 31st July 2017. I had a temporal biopsy, dexa scan, echocardiogram and CT scan, all before the middle of August. It was a very strange dreamlike time especially coping with 60 mg of pred per day. I'd never really been ill before and wasn't fully aware of the reason for any of these tests, but just did as I was told. Afterwards I started to wonder and research a little, and came to the conclusion that my rheumatologist had just been very thorough in checking me out for other possible conditions. Nothing was found in my case and I hope this will also be true for your husband.

[alysonkerry- in reply to Marijo1951]

Glad all your test came back with good results Thankyou for sharing your experience much appreciated and we feel a lot less anxious thanks to people like yourself taking the time to reply :))

[Blearyeyed]

CT and various scarey sounding tests are done regularly as a routine test just to make sure that they have ruled things out and done a thorough examination that you deserve.

Think of it as a positive thing , if your husband has one it can give you more peace of mind for the future and you can be positive of the best way forward in his recovery.

[alysonkerry- in reply to Blearyeyed]

Thankyou for your reply we feel much happier having received responses from the likes of yourself we really appreciate you taking the time to reply. We’re just very ignorant about PMR and the procedures undertaken to clarify it but your absolutely right in what you say thanks again :))

[polymy]

I had a CT scan just to check my internal organs. It was a check because of tummy problems. Try not to worry. In my case everything was just fine.

[alysonkerry- in reply to polymy]

Thanks poly my appreciate your reply and glad all was ok with your CT scan :))