temporal arthritis

It's actually arteritis not arthritis - it affects the temporal artery in the temple and if not treated asap can damage the sight. I only know this because my daughter suffered an attack 18 months ago. I thought she was having a stroke so the gp was at her home in minutes.
She had steroids until recently and has largely recovered.
However she has migraine headaches but whether this is a result of the arteritis attack, or a side effect of fibromyalgia or whether they're all linked has not been established.
She still has neurology checkups.
Good luck with your recovery.

Sorry to hear of this diagnosis. However, there is help at hand.

Temporal arteritis (otherwise known as Giant Cell Arteritis or GCA) seems to be closely related to and often occurs at the same time as Polymyalgia Rheumatica which I have. There is a web site which you will find helpful. It's run by people who have or have had one or both of these conditions:

healthunlocked.com/pmrgcauk

There is also a first rate book written by a former patient who has made herself an expert on the subject, available from Amazon either for Kindle or as a paperback. I strongly recommend it.

Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Dr Kate Gilbert.

There are also self-help groups in some parts of the country.

Good luck. PM me if you need to ask anything.

Thanks for the tips on way to doctor will
check out web site when I get back

mcem
Is your GP sure it's fibromyalgia darling daughter has not polymyalgia rheumatica?
As Anno rightly says! the two are related.

Thanks for your input Galen. I've wondered about this since reading anno's post some time ago about the link between these conditions. DD1 was first given a diagnosis of rheumatoid arthritis but a few years ago they decided it's fibromyalgia. No-one seems absolutely sure as they are now discussing tests for MS. In the last couple of years they've added interstitial cystitis and gastroparesis into the mix. Long-term thyroid problems too and not surprisingly she is now being treated for depression. Last week the occupational therapist supplied stools for the kitchen and shower and, pessimistically, a wheelchair!

Frankly, as a layman I'm utterly confused,

My role is just to help as far as possible. She accepts that her life is a constant round of hospital appointments and being largely housebound.

She has seen innumerable consultants but the only person to try to see this in a 'joined-up' way is her gp.

DM had temporal arteritis. She was immediately put on high dose steroids that were gradually reduced over the approximately a year that she took them. She had some eyesight problems that I thought were related but she dismissed as ridiculous. Apart from that she made a good recovery with no after affects.

Well blow me - my sister has just developed first the poly thingy and then had severe headaches and has just had a biopsy to confirm giant cell arteritis. She is on a lot of steroids and is just now reducing the really massive dose for her head aches. Everything now seems under control and she is feeling fine again - it is surprising how quickly she felt better after having aches and pains for weeks.

I will let her know about book and other contacts although her Dr. said "Don't go googling this , the leaflet I will give you will be all you need to know" so I am not sure really. She has been told to exercise, but she seems most concerned about her weight which she seems to think will pile on with the steroids.

I took a headache the day before returning from holiday.
It was really bad and the flight home next day was pretty dire.
I tolerated it for 5 days, DH put wet towels screwed into a roll, into the freezer, and I used them around my head. Nothing relieved the pain.
It seemed to be a terrible migraine.

After 5 days we phoned emergency doctor who said can you get here immediately - it's not a migraine. It was midnight.
Doc checked my sight.... the fear is that the artery will get inflamed right to the back of the eye, damage to the eye is not reversable. He gave me cocodamol and said to go to my GP for blood tests first thing in the morning.

At 9am my GP phoned me to go to the health centre immediately. Bloods were done and my ESR which should be around 10 was at 89. I was started on 50mg Prednisone daily and within 3 days the pain had gone, the inflammation was settling. I was on that dose for about 5 months and then it was very slowly reduced. Took about 18 months/2years to come off them.

Yes, I put on weight. Remember also, it's not necessarily the medication that puts on weight, it just increases your appetite and I'd have eaten the leg of the table. But if you discipline yourself you don't need to eat as much as you want to.

However, I did get the moon face and feel the fluid at the back of my neck/shoulders.
This disappeared when the medication was ceased.

I also have fibromyalgia which had previously been diagnosed as rheumatoid arthritis, so I actually don't know what my aches and pains are !
One good thing, my aches and pains were greatly helped by the steroids.

There really is no alternative, if you have Giant Cell Arteritis / Temporal Arteritis then steroids are the answer. Doc told me it was a very serious condition and if I ever thought it was happening again I should get to A & E, or to him immediately.

Taking the steroids, symptoms ease within a few days.

To clarify, my GP phoned me in the morning after examination by the emergency doctor, because emergency dr had flagged it to GP that I should be seen with urgency.

I am clarifying this to show to anyone who may have symptoms that they should not delay going to the doctor.

If the rheumatic symptoms are relieved by steroids, the odds are it's polymyalgia rheumatica as fibromyalgia doesn't respond to steroids.

Thanks Galen, that's really good to know