Got appointment for PET scan

[Phoebenooby]

following up on my earlier post about having a scan to determine whether my blocked femoral arteries are blocked by PMR inflammation or scar tissue. Hospital rang today and it is April 3rd. I said I wasn’t sure if I wanted to go ahead as if the inflammation is still there I’m also worried about taking the methotrexate . Also I had a PET scan a year ago to check what the blockages were caused by and it was inconclusive, so how will the result be accurate this time?

[PMRpro Ambassador]

I would be having it - they might find something and they are offering.

[SnazzyD]

It might be more conclusive this time, you never know. A lot can happen in a year. What you do about the information is up to you but you might be better informed in whatever decision you do make.

[Phoebenooby in reply to SnazzyD]

Thanks, basically I really want to know if my blocked arteries are caused by PMR so a by product of PMR or I have peripheral artery disease caused by something else which will mean it’s a progressive disease 🙈 The last PET scan I had showed up inflammation due to PMR elsewhere but the femoral artery blockages were inconclusive….. I was on 7.5mg of pred then and wasn’t advised to reduce it for the scan. I am on 4mg now so if I do go ahead maybe clearer?

[SnazzyD in reply to Phoebenooby]

Might be but I don’t think anyone can say to be honest. Tough on you when you want some answers. What is the argument not to have it apart from it possibly not giving any more clarity?

[Phoebenooby in reply to SnazzyD]

Well, obviously any radiation exposure isn’t good, plus the methotrexate is very scary and I’m on enough meds already!

[SnazzyD in reply to Phoebenooby]

Do you mean that if they find inflammation they will press you to take Methotrexate?

[Phoebenooby in reply to SnazzyD]

No exactly press me, but if my arteries show inflammation he is suggesting methotrexate as it should get rid of the inflammation quicker than pred. He doesn’t want to give the methotrexate without doing the PET scan

[PMRpro Ambassador in reply to Phoebenooby]

On what basis is he making that assertion? If that were true in PMR/GCA then they would use it more and they don't. Different medications work in different ways - and MTX certainly wouldn't be first choice for them, it is pred, MTX can take months to show an effect even though it often does suppress the immune system but it doesn;t always work.

[Phoebenooby in reply to PMRpro]

I don’t know…. all the scan etc that I’ve had have not showed up the usual calcification in my arteries, they do nt know what is blocking them, I’ve just had a 5 day heart monitor to check for blood clots, I have no other blockages just my fem arteries , both the same and only appeared a few weeks after the PMR pain started. I would love to reduce my blockages, they are too long to do anything surgically at all. It’s so painful and my feet are like ice etc. It just seems the treatment is sometimes worse , I’m frightened of more radiation , and scared of the methotrexate , and scared of doing it all and it not working ….thanks x

[PMRpro Ambassador in reply to Phoebenooby]

Stop being scared of the radiation - they won't subject you to more than is safe. There are strict rules about it for workers and for tests, they consider whether the benefits outweigh the risks. But relatively small amounts over a longer period are safe whereas if you had a lifetime's exposure added up and all at once, it might not be.

[Sophiestree]

I would have the PET CT. My second one showed my parathyroid issues more and so they agreed to surgery after having initially saying they weren't sure as my calcium levels had gone down ( of course they had I started pred by then).

I have had over 20 scans, including 2 PET CTs and 2 nuclear for my thyroid/parathyroid.parathyroid.in 4 years.. but can't worry about exposure as I needed answers.

[Rugger]

My Rheumatologist has referred me for a scan and when I mentioned the issue of radiation exposure, she said it might be 20 years later that problems arise. I'm 77, so think it's worth the risk - although Mum did live to 97.....! 🤣

[PMRpro Ambassador in reply to Rugger]

And an awful lot more radiation!! She doesn't live in Aberdeen I assume? - gives her a head start!!!

[Phed]

I have been on Methotrexate for 3 years now, like you I wasn’t sure if I wanted to go on it, I can honestly say I have had no problems what so ever since being on it.

[PMRpro Ambassador in reply to Phed]

Has it made a difference?

[Phed in reply to PMRpro]

I think it has, I’m taking 20mg every Friday and now down to 2mg of Prednisolone a day which my rheumatologist is very happy with, before taking Methotrexate I was really struggling to cut down on my steroids which it seems to have helped me do.

[PMRpro Ambassador in reply to Phed]

Thing is, over that period of time, the PMR may be fading anyway. But if you don't have problems it IS worth trying.