GCA and never ending!

I have been unwell with GCA for 11 months with 9 out of ten days being bad ones. I never know if the Predisilone is making me ill. Withdrawal from Pred or the GCA. Now there is talk of a second PET scan to see if GCA still in my aorta etc. I thought once you took Pred. Scans didn't give correct results or is that not the case with PET scans? I am travelling for two hours to see Prof Das Gupta on NHS and maybe I can have tosicilibub. I am so hoping for some help as I am so fed up feeling so ill almost every day. This really is the most miserable illness. I was also interested to hear that people with Scandinavian origins are more likely to get GCA. Is that true? I am part Sandinavian.

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  • Having Scandinavian genes is said to make it more likely you will develop PMR/GCA in that there is supposedly a higher incidence among such populations but I don't think it is that certain and Scandinavians I know haven't come across many people with either!

    I've been told that any pred interferes with the results of PET scans - but don't quote me on that.

  • I had a pet scan whilst on Pred and reduced to 5mg for the scan. The radiologist says you really need to be off Pred as even low doses mask the inflammation. Mine didn't show much, yet an MRI on low dose pred I lit up like a Xmas tree. Unfortunately when on long term Pred stopping it abruptly for scans is not an option. Good luck with Prof Dasgupta

  • I am so sorry that GCA and Prednisalone are combining to make your life full of miserable suffering, I can relate to those feelings, so far I haven't developed GCA though, but apart from the early days of Pred. I have felt pretty awful for a year and as the actual pain is not so bad I'm confused by the flu like illness I feel and its origins. Fo me distraction can help, like spending time with my imaginative grandson, reading , drawing,and watching old films, but sometimes I see life passing me by and feel pretty desperate.

    I would take hope from seeing Prof Das Gupta and surely some adjustment for the Pred taken prior to the scan will be made by the scientists. I haven't heard of the Scandinavian connection, just Northern European. But you have it now anyway. As I tell myself there are worse conditions out there that have a pretty awful prognosis, at least we have hope that this thing will finally burn out. Sometimes we just have to take on day at a time and squash the rising panic. Sending you the best of wishes for your latest round of exploration. I hope all goes really well.

  • I went to see the Prof. after not getting a definitive diagnosis for 2 years. He didn't think I had PMR and was concerned I had large vessel vasculitis, so he referred me for a PET scan. I was on at least 10 mgs. Pred. at the time and the scan showed up inflammation in the shoulder and pelvic regions which conclusively proved I had PMR. This has been incredibly helpful in the years that have followed.

    I also wondered what dose of Pred. you are on and whether it is enough? I found whilst the Prof. is the national expert, he was quite dismissive of me when I couldn't reduce the Pred. the way he wanted me to. I often felt inadequate after seeing him and kept trying to reduce to please him, resulting in flare after flare. I have now found a Rheumy who is much better with me and I always feel better after seeing him!

  • I had to stop Prednisilone for my PET scan, it was within weeks of starting it so I was told to reduce rapidly over a week. Good clear scan obtained, plenty of inflammation seen and luckily my aorta was clear. Was so stiff I couldn't get off the scanner table unaided and the walk back to the waiting area was close to agony. The radiology department will advise you about Prednisilone , if you have to fast etc. I would advise water and Prednisilone in the handbag for afterwards and in my case a very strong coffee and a quiet day afterwards. It does sound like you are being closely monitored which must be reassuring. Good luck

  • Good Morning and sorry to read you are unwell most of the time. I have GCA since 2013 and like you I never really know what is what, pred or illness (I also have PMR since 201). For you info I am Swedish and I've also read that it is more like for Scandinivian folk to get it, well sadly I'm one of them.

    I will be interested to hear how you get on with Prof Das Gupta. Never give up hope. I'm also going to have long discussion with my rheumy next appointment re meds as the Pred is seriously starting to take its toll after all these years, but nothing's fallen off yet (lol).

    Take care.

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