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catherine w

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catherine34621
catherine34621

I am a 67 year old woman, I had been taking Naproxen for 7 months when I developed the symptoms of TA, I was put on prednisolone 40mg per day which worked wonders.My vision problems improved overnight, and the swollen arteries were gone within days, however after tapering the steroids slowly, in March 2016, I got a chest infection and my bloods which were falling nicely, went back up and havent gone down much since. I am now taking 20 mg of prednisolone daily from 15mg, the symptoms of TA have not come back, but now my Rheumatologist wants me to have a PET scan, I walk daily, keep active and luckily have not put weight on with the steroids, I have lost 8lbs in 13 months with the disease. I wondered if anyone else has experience of a PET scan, as all you hear about it is in connection with cancer?

0 likes, 9 replies

9 Replies

  • tina-uk_cwall
    tina-uk_cwall catherine34621

    Posted

    Hello Catherine, I do not have TA so cannot offer any advice only to say that I think the scan is being offered to see if you have any additional inflamation hanging around as I believe  PET scan can determine this.

    you are suffering from TA and your original starting dose was 40mgs daily and if I am correct you have had diagnosed TA for just over a year so I think you did well to get down to 15mgs within that period. You are only on 20mgs because your bloods are indicating there is some sort of lingering inflamation. That could be simply because your chest infection has not cleared completely up. I know you are anxious but I think you have a dr who is making sure they have all bases covered. If it is established that you only have TA, and that is well under control, but you still have a lingering chest infection, you could be offered antibiotics and then be back to reducing your preds, slowly I hope, very soon. I had a PET scan last year when I had pulmonary embolisms, so as much as it's hard not to think of the worse, please understand that they are used to establish all sorts! Regards, tina

  • catherine34621
    catherine34621

    Posted

    Thanks Tina, I should be more clear, I have only been told I have TA sinse Nov.2015, before that I was being treated fir suspected PMR, I started taking steroids in Nov. I have gone from 40mg per day to 15 mg per day now. I have also had a numb big toe on my right foot sjnce the chest infection, but they don't think that is linked, sorry, I should have been more clear.
    • tina-uk_cwall
      tina-uk_cwall catherine34621

      Posted

      Hello Catherine, so we're you prescribed naproxen for your suspected PMR then when you were diagnosed with TA prescribed preds at that point? How did your PMR symptoms react to naproxen and did you then stop taking the naproxen when prescribed preds? Regards, tina
  • EileenH
    EileenH catherine34621

    Posted

    You lucky person having a rheumy who WANTS to do a PET scan! It is the best option to identify inflammation in PMR/GCA but is expensive so it is normally reserved for cancer queries. It will show up if there is extensive inflammation and where - and whether a GCA diagnosis ir "just" PMR would do. GCA doesn't just affect teh head arteries - and PET is the best imaging to show where it is.

    Tina has said most of the rest.

  • catherine34621
    catherine34621

    Posted

    Tina and Eileen, thankyou for your input, while I was on Naproxen, my PMR was kept well under control, I took it for 7 months but after the dose was reduced, the symptoms came back, I then got swollen arteries on my temples, jaw pain and weight loss, I am not complaining about any Dr. I have had, I was told at first, that it wasn't TA. but when my sight was affected, I was seen by a Rheumatologist in 2 days while my own G.P. was told to put me on steroids before I saw him. I feel better than I did and wasn't suggesting that I was being sent for a scan because he thought I might have something dire. There isn't much info. on pet scans and TA. Thank's for your help
    • EileenH
      EileenH catherine34621

      Posted

      A PET scan is a PET scan - actually having one done is the same whatever it is for. Sorry if I misunderstood your query - it sounded as if you were concerned about cancer. PET scans aren't often done for us because not every hospital can do them and there is a restricted number of machines - which inevitably creates long waiting time so cancer gets priority. They would be the ideal though and are being used in clinical studies for both GCA and PMR.

      I don't think either of us thought you were complaining about your doctors.

  • catherine34621
    catherine34621

    Posted

    Thankyou once again Eileen, I am concerned about the inflammation as I was under the impression that the steroids got rid of it all, I have constant fatigue as I understand many people with the illness have, I have read up on TA but obviously not enough so I need to do some more.
    • EileenH
      EileenH catherine34621

      Posted

      The steroids do get rid of most of the inflammation and that is what shows in the reduction in ESR/CRP - if you are taking enough. If you have flared then the dose wasn't enough to control it all - so there may be some to be seen on the PET/CT. However - the combined scan shows structures as well as changes so kills 2 birds with one stone so to say.

      The fatigue is something different - it is probably due to the autoimmune disease that is the cause of the PMR or GCA symptoms. The pred doesn't usually change it - except for the pred high that some patients experience where they have loads of extra energy. That doesn't stop them experiencing the fatigue when they have really overdone it though! And pred itself can cause fatigue.

      If you haven't already seen this there is a lot of reading material in the links:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

  • catherine34621
    catherine34621

    Posted

    Thanks again Eileen, you've been a great help.
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