I’m currently on 6mg Prednisolone for suspected GCA diagnosed about 14 months ago though biopsy was negative and ultrasounds didn’t detect anything. Inflammation markers have come down significantly but are stubbornly refusing to go into the normal range. Have no other indications of infection and am generally well apart from Pred sideffects - weight gain and fatigue - so the Rheumatologist has referred me for a PETCT to try to see if I have any inflammation in other large vessels or whether there is any other obvious site of inflammation. I am currently fasting prior to going in but haven’t taken my Pred as I was told it might make it less easy to spot an issue?. Is this right? I'm nervous enough of scans anyway and will be taking some Valium with me and so want to be at my best equilibrium to get through it. Will take the Pred with me and have it when I’m done but that’s likely to be 5. 30 ish meaning I will have had no pred since about 9am yesterday.
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Menno1525
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That is probably as good as you will get - it is advised to get the dose as low as possible for as long as possible to get the best result.
There really is nothing to be anxious about - PET-CT scanners are doughnuts not tunnels! And the longest bit is after the infusion of glucose tracer until it reaches the bits it needs to reach. Take a nice book to keep your mind off things while you wait. And the actual scans are over before you know it - I was really surprised.
Thanks. I’ve managed CT scans before but am inclined to health anxiety anyway and this one is taking place in the same facility where my late husband had all his cancer tests and treatments prior to his death in 2022 - so the vibes aren’t great.
My markers are always high. I had numerous tests for things like cancer etc and they found nothing. They have now diagnosed it as it is just ME! A PET Scan is like lying in bed! Not like some tests you can have!
My markers have never gone back to normal since I got PMR in 2012. Sometimes my CRP has been up to 40, often in the 30's but for no apparent reason. My CRP was 14 at the last test in April which was the lowest it has been for years. No idea why!!!
Menno.Do not worry over any scans. They are perfectly simple. They tell you what to do and reassure you all the few moments it takes. It doesn't hurt or frighten
in any way. I can promise you.
I too am on 6 preds now. I tried reducing to 5 but all the pain came back.
6 seems ok.
Started off on 15mg in Nov 22months ago.
In retrospect I think the GP should have given me higher dose then.
Oct 2023 in hospital and preds shoved up to 60 mg a day as they thought GCA and wanted to save my sight I that eye.
Only tolerated that for a week or so as made me sick and I couldn't count them anyway( all in ones) as had
lost numeracy, balance taste and writing. ( All came back in time)
Eyes not too bad.
Headaches mostly gone. Occasional pain in temples and can feel strong pulsing but it goes away eventually.
First visit ever with rheumatologist, 5 months ago, said no GCA.
He didn't do any tests etc....gave no advice or anything.
Stay on what you feel comfy with and manageable pain wise.
I am so sorry that you are experiencing so much anxiety. I have not had the scan you mention and my inclination is to sometimes bury my head in the sand and accept that aging is inevitable and some discomfort is inevitable as we age, but I am not suggesting you don't go for the test. I have tried to concentrate on diet. I think Sour dough is better than ordinary sliced bread and I use olive oil on my toast. I like using a food processor to slice or grate salad veg; carrots, beetroot, spring onions to go on a bed of lettuce. I also eat eggs, cheese and chicken and beef. I make vegetable soup with leeks, celery, a few green leaves of kale and onions. Add spices to taste It is so delicious for lunch. You will need a hand blender to make it smooth. For a snack I eat a small handful of nuts, almonds with skin on and walnuts. I make scones without sugar for a treat. So far I am doing well on this diet. With best wishes, Barbara
Thanks one and all for your support. Scan was OK - I took a Valium to just take the edge off, any anxiety and bring my heart rate down -but my blood sugar was distinctly low by the time they got round to giving me the tracer injection. Didn’t help that at Barts this scan was done in a huge trailer in the car park which basically comprised the scanner room itself and two little anterooms opening into it, both no bigger than a disabled loo with no windows and a sliding door that had to be kept closed most of the time as other patients were being interviewed in a tiny space at the entrance between the two anterooms . It did have a TV and a fan but the chair was very uncomfortable. Thankfully the actual scanner room was more spacious and airy and attempts had been made to make the atmosphere cool and calming - down to a flower image on the ceiling- and the scan itself was quiet and uneventful unlike an MRI. Was very stiff afterwards though having had my arms crossed behind my head for 30 mins. Now just have to wait on the results which I'm told I might not get until September, although the leaflet said within a week. Meantime I go back for ultrasounds on my feet as, over the last month or so, I seem to have developed Achilles enthesis on both sides. Whether this is related to coming down on Pred remains to be seen. but I’d like to get it sorted before I go to the Alps in September!
The enthesis COULD be a sign that your PMR is not PMR but a polymyalgic presentation of a spondyloarthropathy - there have been a few cases on the forums,
Indeed. They have been treating me for GCA , on the basis of my initial symptoms (headache, burning scalp and huge allergic reaction on my face which all resolved within days on steroids) though tests were negative, and I’ve not had any of the PMR symptoms others report until just lately with the enthesis which is painful when I get up after lying down or sitting down for too long and feels better when I'm up and about. Hence they are doing the scan to see whether there’s any signs of vasculitis or inflammation elsewhere.
I had a friend on the forums years ago who was dx'd with PMR originally but was never able to taper far, Then she developed headache, tongue necrosis and other GCA signs but her very poor rheumy wouldn't have it. He referred her to Prof Dasgupta who felt it had probably been GCA but it was no longer active, symptom management only but wouldn't agree to let her have enough pred to relieve the symptoms. In desperation, she approached Sarah Mackie in Leeds who agreed to see her. A throw-away comment about night time spinal pain rang a bell for her and she requested a spinal MRI which showed ankylosing spondylitis. It can present very differently in older females and is easily missed. And could involve enthesis.
Interesting. My Rheumatologist just called me back with the results of the PET scan which was good of her. Apparently no signs of inflammation or arthritis or anything else abnormal apart from possibly an over active thyroid. Going to have a blood test for that. So still no nearer an explanation for what happened last April or for why my inflammation markers are still up (may just be me) so she’s going to continue the plan to get me off steroids and see what if anything emerges. Certainly some of what I’ve been putting down to pred side effects and withdrawal could be symptoms of thyroid issues - though, if anything, concerns were expressed many years ago about my thyroid being under active! Doesn’t explain the enthesis though but I suppose other conditions are available!
Update - just add insult to injury I’ve just tested positive for Covid after feeling unwell for a couple of days after my most recent blood tests on Tuesday this week. Going to have to cancel the US on my feet which was due today and have let Rheumy know that blood tests might be a bit off since I was obviously brewing this when I went in. Not planning on reducing Pred until I see how this goes. Anyone know if , on 6mg of Pred I’m likely to be eligible for Covid treatment.? I was well vaxed up and have had it before and at the moment it feels like a bad cold , but temp etc normal so just treating with rest, paracetamol, lots of fluids and throat lozenges as needed.
I had the Covid treatment because of long term steroids, on 4mg at the time. You do need to move quickly though to get the treatment ASAP after testing positive. I suffered little from Covid (seemed like a minor cold) so I assume the treatment worked.
GP didn’t prescribe Covid treatment - just said keep on doing what I’m doing with paracetamol, fluids, menthol steam inhaler etc but get back to them if temp, bp or oxy sat figures get worse - all currently normal. Has prescribed abx just in case a concurrent chest infection starts up over the weekend. Head currently clearer but having digestive problems and no appetite. Also going stir crazy as my flat overlooks a park that has a major rock festival going on all weekend until 11pm so it’s difficult to keep the windows open for fresh air. Ended up going for a walk at 3am this morning because couldn’t sleep due to combination of coughing and gassy stomach. Just have to sit it out I guess.
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