GCA ?

[Mintymow]

I have been taking Pred for over a year now in up and down doses. My GP is treating me for PMR but from reading peoples symptoms on this site, I don't have nearly the problems that most seem to. My main problem is with my ESR level which fluctuates quite considerably. I now wonder if I am developing GCA as getting odd feelings in my head in different places but nothing really serious. No persistent headache or problems with my eyes, or any of the other symptons I have read about. Can anyone tell me if the symptoms for GCA come on gradually over weeks etc or are they just suddenly there? Or is it that because I am already taking Pred I'm not getting all the symptoms. Awaiting another ESR result so will have to wait and see what the GP says this time. I'm wondering if its about time to see a specialist.

[PMRpro Ambassador]

"Can anyone tell me if the symptoms for GCA come on gradually over weeks etc or are they just suddenly there?"

Yes! Sorry - it depends on the person. Some people start with PMR and then later develop head symptoms. Some people with "just" a PMR diagnosis may have signs that it is more GCA - which can affect chest and limbs as well. Many doctors only get excited about symptoms when they affect your head - headache, jaw pain, scalp pain and, particularly, visual symptoms. Other people have niggling head discomfort that comes and goes for weeks, even months.

I had jaw discomfort when chewing over a few months and scalp pain for just a few weeks - and then it disappeared. I didn't know what I know now and was never asked about it so it never occurred to me it could be serious. I do have other symptoms that are listed for GCA though, such as a cough and sore throat.

There is something called "occult GCA" where the first sign of any trouble is visual symptoms - so even fleeting eye symptoms should be taken seriously and lead to an immediate visit to the doctor or (possibly better) optician for an examination of the back of the eye. This should be treated as a medical emergency - it is to all intents and purposes the same as a stroke: a stoppage of blood flow to a part of the nervous system. That means "The doctor will see you NOW", not the day after tomorrow - and definitely NOT next week. Emergency means head for A&E if the GP isn't being helpful and be clear to the triage staff what is going on. If you have visual symptoms and no-one to take you - dial 999 and explain and be insistent.

You don't say what dose you are on but some of the GCA symptoms could well respond to even a moderate dose of pred - the local rheumy here reckons most GCA will respond to 15mg for example. The reason for the high doses used is to reduce the swelling that is restricting the blood flow to the optic nerve as quickly as possible - it is impossible to know how much time there is before permanent damage is done.

[Celtic PMRGCAuk volunteer]

Mintymow, it can be quite normal for ESR values to fluctuate from time to time, especially if there are any underlying viruses/bugs lurking.

Without further information as what you describe as "odd feelings" in your head", it is difficult to offer much help from our experience with GCA.

As for whether GCA symptoms "come on gradually over weeks etc or are they just suddenly there", in my case it was sudden onset as far as GCA symptoms were concerned but that is by no means the case for everyone.

If your GP would carry out a CRP test, that might prove more helpful as it is often considered a more reliable marker of inflammation than the ESR.

Certainly, if you and/or your GP suspect GCA, you should be referred to a consultant rheumatologist for his/her opinion - meanwhile, if you experience any unusual problems with your vision, seek immediate advice...at A&E if necessary.

[DorsetLady PMRGCAuk volunteer]

Hi,

"How long is a piece of string" would be an easier question. As PMRPro says, depends on the person. Mine came on over a period of about 2 months, until the sight loss which was 4 days. But as I always says mine was an extreme case - I was undiagnosed and therefore not on Pred. If you are already on Pred, then it would sensible to assume that some symptoms are reduced in severity anyway.

ESR readings can be affected by other problems as well, so they need to be taken into account with symptoms.

As both Celtic and PMRpro have said GCA is a serious condition, not just because of the sight factor, so if in any doubt, and you cannot get any quick response from your GP, then seek help from local A&E.

[christine2715]

I am diagnosed with GCA but not PMR, looking back I think I had symptoms for about 9 months, mostly extreme tiredness but also what I thought was sinusitis. I also had night sweats. In March t accelerated and I got the jaw problems, even more fatique, high temperatures every evening and really bad night sweats. Two weeks in hospital and another at home before it was diagnosed by PET scan. I have only just got odd eye problems, a sort of switching on and off, which I will mention to the rheumy tomorrow.

[Doralouise77]

My symptoms, severe head pain and a "tired" jaw when chewing, came on quite quickly over a few days. There's lots of good advice given here for you so I don't think I can add anything. Best of luck!

Cheers