GCA fears

I was diagnosed with PMR in January, have been on 15mg of prednisolone four 4 weeks and have just come down to 12.5 with no ill effects so far. Like most of us I am frightened by the prospect of GCA. Does the prednisolone that I am on offer me any protection from GCA? I have not had any of the classic symptoms but do get some "twinges" in my jaw although not when eating. I also get some twinges in my neck to each side of my larynx and some at the back. Do other people get these symptoms and am I being paranoid? I assume it's a difficult condition to diagnose unless the symptoms are severe?

6 Replies

  • I wouldn't say you were being paranoid no but don't become so! Twinges in your jaw when NOT eating are very unlikely to be GCA, the GCA jaw pain is claudication, due to lack of oxygen when exercising and that is very typical. If your shoulders are much involved then it can lead to referred pain due to nerves being irritated or pinched by spasmed muscles. Some people find massage causes them a lot of discomfort afterwards but I found it helped me a lot. Bowen therapy is even better - it doesn't release the cytokines, the substances that cause the inflammation, in the same way and really is worth a try. You will know quite quickly if it is going to help you - 3 sessions at the most. I had neck pain for a long time due to tight muscles - it wasn't GCA.

    To some extent the pred you are on will provide some protection against GCA. GCA can be present in chest arteries and that is what reduces the blood flow to the arms - with the PMR dose of pred that improves. Sometimes GCA affects arteries in the head - and that causes the symptoms we are told to watch for. It only happens to about 1 in 6 patients who have been diagnosed with PMR and it doesn't always affect the arteries supplying the optic nerve. Whether the dose is enough to stop the progression to full blown GCA is debatable so you do need to be aware but don't let it overshadow things - it may never happen. The time to act quickly and see a doctor immediately (A&E if you can't see your GP NOW) is if you get the jaw pain when eating or talking a lot, visual symptoms or what many patients describe as the "headache from hell". There are other symptoms that come under GCA, they are less serious but still require you to see a doctor.

    But these are bridges to cross when you get to them.

  • Hiya, are you saying 1 in 6 people with PMR go on to get GCA or am I not interpreting this correctly?

  • Yes, that is what I am saying.

    It doesn't mean that having PMR means you will develop GCA - those figures include the people who have GCA but present first of all with PMR symptoms. Do you see the difference? Some people present straight away with GCA symptoms but never have any PMR symptoms. In some ways having PMR diagnosed first is a blessing because at least you should have been warned what to look out for and know to seek help immediately. I have spoken to people who have simply had visual symptoms out of the blue (as far as they were concerned at least). One had severe visual symptoms for several minutes - and didn't seek help from her GP for a few days! She was very very lucky.

    However - you can have PMR for some considerable time before it turns into GCA. So there isn't a lot of point obsessing about it.

  • Thanks for the clarification. What are the usual visual symptoms? Be interested to know as I've coincidentally had a recent posterior vitreous detachment (PVD) which gives me the occasional visual 'scares'

  • They vary - dark area in your field of view, blurring and double vision, especially in the morning or after waking from a nap, a feeling there is a curtain across your view are the most commonly quoted things.

    This quite good about GCA symptoms:


  • Thanks for the reply. That's very helpful. I've read a lot on this site about Bowen and would definitely like to try it.

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