Any idea why my rheumy wants me to have a PET scan?

cathyG

It is a useful tool and I would not turn it down.

It is the same as a Dexa, and can be used as a preventative measure.

Four years into GCA and I have been told I should be considered for either a Pet or MRI - GP to discuss next visit.

Can show up inflammation in arteries, so maybe she is thinking of GCA?

Although the temporal arteries are fairly easily checked visually, for those of us with GCA but without TA it is a good diagnostic tool.

Nefret/Catie

I am delighted to see these comments, both from you and MrsK! There is something amove inthe PMR/GCA world.

An ordinary CT (computed tomography) scan is a very sophisticated way of seeing all the structures in your body in slices - both hard and soft, bone and organs. A PET scan (positron emission tomography) adds in a substance which is injected into a vein and then is absorbed by tissue around the body that shows up on the CT in specific places. It is absorbed by abnormal tissue - so will show up cancers but is also absorbed by other inflamed tissue.

In your case, since your ESR and CRP values are low, you are being offered this to make sure that they are not missing any GCA. Many doctors believe that PMR and temporal arteritis (TA) are at opposite ends of a spectrum - which means (as I see it at least) there are a lot of people in the middle. Your chest and lung arteries can be affected as well as legs and this is what causes the claudication symptoms (leg and bicep cramps on exercise). There are other symptoms as well but may not include the traditionally accepted headache and visual symptoms which are the extreme end of TA.

I'd be up there in the queue like a shot if I were to be offered one. An alternative can be MRI with a contrast substance - but it all depends on the facilities available at your hospital. It is a relatively new procedure and requires mega-bucks equipment but they do pick up things at a very early stage that nothing else would find.

Are you finding it difficult to get below 9mg? That is my sticking point, some of the original symptoms start to come back - especially the ones that might suggest some GCA rather than just simple PMR. What side-effect problems do you have? I'm on 15mg again at present and I am really enjoying feeling so well (and it isn't steroid high, it's no swelling of my feet, ankles, hands and wrists!).

EileenH

Many thanks Mrs K, Nefret and Eileen. I am much reassured about the PET scan. I must admit I hadn't thought of GCA, not recently anyway.

I got a call from the hospital this afternoon and am going for the scan on Monday! Will let you know how it goes.

Eileen, I have got down to 8.5 mg of pred by reducing very gradually (now alternating 8 & 9 mg), but I have got more aches and pains back especially in my shoulder and one finger joint! Think I will stick for a bit.

The side effects are lots of annoying little things like a fat face, neck and body, Painful, sensitive teeth, spotty face and body, hair falling out, poor memory and concentration, muscle cramps, twitching, tingling and numbness, headaches, backaches and probably a few more I have forgotten (have always been a cold person but now melting). The things that really bother me are shaking, inability to stay on my feet for more that a few minutes and exhaustion. I can hardly keep my head up to type this!

CathyG

Hi All,

Went and had PET scan yesterday (at the London Hospital opposite Westminster as they don't do them in many places). I didn't get any results of course. They will send them to my rheumy in 5 - 7 days. I am not due to go back to her for 3 months but hope to hear something before that.

It wasn't a difficult process and mainly involved one of my favourite activities-lying down with my eyes shut!

You get injected with something radioactive and then have to lie quiet and still for about an hour while it moves round the body. Then you remove everything with any metal in it, put on a gown and lie on your back on the machine bench. I didn't have my arms above my head as they don't want to stay there for long. The machine moves you backwards and forwards, with long pauses, for about half an hour. The hard part is keeping really still as my muscles jump randomly by themselves. Also I felt myself tensing up and had to keep reminding myself to relax. The radioactive stuff has a short half life and passes out of you body quickly.

The most worrying bit was getting there and back with all the stuff that has been going on in London. We avoided going via Brixton, as there had been reports of trouble there on Sunday night, and instead went through Clapham Junction a short while before things kicked off there. My husband, who went for a walk while I was scanned, said there were a lot of small groups of youths wandering around and police were looking suspiciously at bus queues.

In the evening we heard about all the trouble surrounding us in Croydon, Collier's Wood and Sutton. Two of my sons (all in their 20s) were at home, but I was concerned about the eldest who works in Sutton High Street. He phoned to say they were closing early and going home and they are doing the same tonight. He would have come round but doesn't want to travel back close to the High Street later in the evening. I hope this situation is concluded soon.

CathyG