does anyone know if Giant cell arteritis can be brought on by trauma or stress.

Hi there Gladys, so sorry to hear that you have joined our little group, but hopefully we can give you some support and help.

You don't say what dose of steroids you are on (if you are on Prednisolone) and we might be able to offer more support there with a little more information, One of the main things about PMR is that it is totally an individual condition overall, but most of us have been there and worn out the T shirt with most problems that arise.

Yours is probably the most devastating onset - sudden, acute and very very painful. There are a section of patients who have the opposite onset, where it gradually and insidiously takes over during months or even years. Not that that is any less painful just that at least there is some advance warning.

It does get better. Truly and honestly better particularly as the steroid dose reduces. It does take patience and perseverance and it seems that all of us were particularly busy people; it took me a long time to realise that PMR can't be rushed. It goes at it's own pace - arrives when it likes and leaves when it feels like it.

The major point that we all have to bear in mind is that the steroids are simply calming down the symptoms so that we can have a reasonable quality of life while it is around. There is, as yet, no known cause and no known cure. I found that it was no good attempting to fight, it just made things worse, whereas if I accommodated it a bit we got along better.

Do let us know if there is any particular problem or question you would like answered. We will do all we can to help. It's worth looking at the top of this particular forum as there are links given to other safe and reputable websites and a great deal of information both on PMR and it's alter ago GCA.

Hello Gladys

Certainly many of sufferers have mentioned PMR arriving after a stressful period in their lives so it's entirely possible that the same can be said of it's linked condition, GCA. And being involved in a car crash must be right up there among the top stressful events. I do hope you weren't badly injured.

No doubt you are on the usual very high doses of steroids prescribed for GCA so not only are you suffering from the effects of the inflammation in your body but also from the side effects of the steroids themselves - both likely causes of your depression and lack of energy.

Having GCA or the linked illness, PMR, are certainly life-changing experiences but rest assured they are not permanent and you will gradually start to feel much better as you reduce the steroid dose.

Meanwhile, it's important to get as much rest as you can in these early days to allow the steroids to do their job of controlling the inflammation - it isn't an illness we can fight. However, if you can get out for a walk each day, no matter how short, that will help to lift the depression (boost those feel good endorphins). You are on a steep learning curve at present but just listen to your body and give yourself lots of TLC. We all sympathise and understand exactly what you are going through in the early days of this illness and will be only too pleased to try and answer any questions you may have from our experience. I do hope you start to feel better soon.

MrsO

Hello ,

I am a very fit 53 years and have a possible diagnosis of GCA. I only came out of Hospital yesterday

and I am now very, very scared.

My whole life is based around the Visual Arts and I work in the Creative Industry. I am scared at losing my

sight, I am horrified at the thought of Steroids as I have seen what they can do.

I am sure this was bought on by a period of extreme stress.

A friend who has been through this and someone to talk through their journey would be really lovely. I live in Chiswick, London, W4

Thank you

Sarah

hi sarah

I was diagnosed in January, a month after I was in a car crash, and I also like you was a very fit 70 year old, which included dancing, yoga, pilates weights,circuits. I also thought the trauma and stress of the crash could have brought this on, but was told there is no evidence that this is possible,no one knows what brings this disease on, but I am not convinced. I went to see a neurologist and he said maybe it could be brought on by stress but there is no proof, When I was diagnosed I was put on 12 steroids 60mg daily and was just as horrified as yourself. I have good days and bad days, the fatigue is terrible, but am now back at the gym and taking things slowly I was put in touch with a support group in gateshead which is fantastic, they have given me lots of advice regarding food, exercise etc. I am also on a 3 year trial testing a new drug called " Tocilizumab", the reason I decided to do it was because they can reduce the amount of steroids quicker than usual.

As you can see I live in the north east, but we can still keep in touch by email.

I have now come to terms with this illness and feeling more positive, also you have to look on the steroids as your friend as they are keeping away the pain and also saving your sight, I know they cause all sorts of problems, but if you eat healthily and exercise you can keep some of them at bay.

good luck on your journey and keep in touch

gladys x

Hello Sarah, I'm sorry you are so scared but I think we all were at first. All of us have to make choices and decisions and the more informed a decision you can take is a very good thing. Have a look at the pinned threads at the top of this category and you will find more sites where you can get good reliable information and talk to people who have gone through this before you. Gladys has already discovered this network.

You don't say where you are but we have (I think) 14 support groups across England (Scotland also have some of course) and they will help via phone, email or meetings.

Please do have a look and don't consult Dr. Google too much!

Hello Sarah

I can so understand you feeling scared having recently been hospitalised and given a "possible diagnosis of GCA". Does the "possible" mean that a temporal artery biopsy has been carried out whilst you were in hospital, with the results being awaited? Hopefully, as GCA is supected, you have already been started on steroids to protect your eyesight - if it turns out not to be GCA, then the steroids can be stopped in the early days without any problems. If GCA is confirmed, then providing you are on a sufficiently high enough steroid dose to control the inflammation, you have little need to be scared as your sight should be protected.

The National Organisation, PMRGCAuk, are hopeful of getting a support group going in the London area at some time in the future but until then the nearest one to you is in Chertsey, Surrey, so not too far away from where you live in Chiswick, West London. If you would like further details, then please don't hesitate to send me a PM - I will be more than happy to meet up with you somewhere for a chat if you feel Chertsey is too far away.

MrsO

Dear All

Thank you so much for all your in put, I had my Temporal Biopsy yesterday so I will keep you all posted. I

have come to terms with it and it may be that I am very very lucky that if it is GCA that it has been discovered. It has all happened very quickly, I was taken into to Charing Cross Hospital last Saturday with an extreme headache and very high temperature ( 39.8 c) . Charing Cross where fantastic , surprised that I wasn't ready to go home after 2 days - I said I am not going home while I still have a headache - at which point the Doctor touched the side of my head, et voila, bingo the idea came to him that it could be GCA.

The Steroids have been the only thing that have stopped my headache ( Exploding pumpkin) so I will

learn to love them as a friend.

I am a Designer and a very creative, visual person so to have lost my sight would have been the end of

my world.

Thank you Gladys and Thank you Mrs O, from a sunny Chiswick.

Sarah

Sarah

Well done Charing Cross and well done you for sounding much more positive. So glad to hear that the headache has resolved - the steroids are obviously doing their job, thereby confirming the diagnosis. There is a small chance that the biopsy will come back clear but don't panic because occasionally the large cells they are looking for can sometimes escape the tiny area biopsied.

Enjoy sunny Chiswick - it's here to stay for a while....if the forecasters have it right!

MrsO

Hi Sarah

I am so happy for you, I know its such a relief to have a diagnosis,, Now you can move on and deal with it,I have found that a positive attitude helps, and it sounds like you are now feeling much more positive, well done you.

speak soon

Gladys

Mrs O and others.

I didn't think I would be posting again but unfortunately my PMR has returned after being clear for the best part of two years. There is much I could write of my experience of living with PMR without steroids over the past 5 years (see previous posts by Bob The Builder) but I won't in this post. I would, however, appreciate some advice regarding the onset of GCA before I see my GP tomorrow as he is new and I don't want him labelling me as a hypochondriac. I know a lot about PMR, thanks to the amazing advice and posting from Mrs O and other fellow sufferers on this and previous sites, but I know very little about GCA.

My understanding of GCA was that it came on rapidly and required emergency treatment to prevent sight loss but is this always the case or could it also come on gradually over several months? I ask the question because in parallel with my PMR returning I have also been having problems with tenderness over my scalp for several months. Up till now I thought it too trivial to trouble my GP with and had not linked the two conditions until the other day when I read the symptoms of GCA and saw this was one. I have no other GCA symptoms so would appreciate any advice.

I wish you all well and many pain free days.

Best regards

Bob (Bob The Builder)

Hello Bob and welcome back although I'm so sorry to hear that you have returning symptoms of PMR after being clear for so long. Don't lose heart though because on another forum there are two ladies who have experiences PMR for the second time and are, once again, free of it and off steroids.

As far as GCA is concerned, mine came on very suddenly with severe head pain and jaw pain on chewing, among other new symptoms. All possibly because I had spent much of the previous year in bed in pain with undiagnosed, therefore untreated PMR.

So the advice following my experience is to get confirmation of PMR as soon as possible and fast treatment if necessary - meanwhile, if you suddenly develop any problems with your vision, then seek emergency advice at A&E.

Hopefully, your GP will carry out ESR and CRP blood tests for inflammation tomorrow, as well as the relevant blood test to rule out rheumatoid arthritis. If PMR is confirmed and you get in with the relevant starting dose of steroids quickly, then you may find that your scalp tenderness disappears as the steroids start to control the inflammation. A quick test for you is to feel for a pulse in the temple area at the side of your eyes towards the hairline and to check whether you have any bulging veins visible in that area. If you remain uncertain following your GP appointment tomorrow, then ask an optician/ophthalmologist to check the back of your eyes.

Good luck Bob and do let us know how you get on.

MrsO

Dear All - Mrs O, Gladys and Bob,

If my diagnosis comes back as GCA then I will say it is absolutely triggered by stress. I have never been

so stressed in my life as in the past few weeks ( I honestly thought I was on the verge of a breakdown).

Mother taken into Hospital as an emergency 4 weeks ago and still there, having to drop everything and go to Mid wales to care for my Father who has Parkinsons etc taking him to see my Mother is a 3 hour

round trip, work pressure, other half giving me grief about looking after aged parents etc etc.

I just knew it was more than just my usual Migraines that I live with and I also knew that I had to get back

to London, to a Teaching Hospital.

Gladys/ Mrs O I am really happy to give you my personal email address, and thank you Mrs O re Biopsy

missing the Big Cells because I will press to stay on small dose Steroids just in case., and yes noted

that it was only Steroids that helped the exploding Pumpkin.

Best wishes to all

Sarah

P S Gladys - I am struggling a bit with exhaustion but aiming for Pilates tomorrow , miss it big time.