Temporal Arteritis and high dose steroids

Thanks for the update Thoro.
Helpful to know about reg blood tests so I know what my DH should be getting. He has his ultrasound on arteries Monday.
It is a worry and wish our GP believed us when we went 3 times and I pleaded with him to do something. Took us going to a different GP who sent him straight away to Emergency daycare ward.

Best wishes for your future care and it's good you have brought it to the attention of others.💐
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I had GCA last year, and for various reasons I am still on steroids. The tapering of the dosage is having to go very slowly indeed.

In my case, the consultant warned me not to put on weight and so I lost some instead. Very slightly puffy cheeks but apart from filling out a few wrinkles it was hardly noticeable.

My steroids are paired with Methotrexate, for which I have regular blood tests. Then an array of other tablets to counter all the side effects.

I hope you feel better soon Thoro, it is an unpleasant condition to have.

The moon face is not nice I’ve had it many times after being on prednisone fir my asthma it does go down though after you come off the steroids.

Thoro

Not looking forward to the moon face and putting weight on. An even bigger worry is thinning of bones - I already have osteopenia. Oh well at least the headache is gone!

I had high dose steroids...been reducing for months and now on only 5mgs ...but never had moon face! You might be lucky like me! 💐

Update to my post. Had my appointment with the Professor of rheumontology today. Although the ultrasound didn't show enlarged arteries, from my symptoms and reactions to the steroids he is satisfied that I have giant cell arteritis and is treating it as such. Have got a prescription for various weird and wonderful medications and will need fortnightly blood tests. Very grateful for my GP who picked it up really quickly

Thought I should add in my DHs case he didn't have high inflammatory markers in Blood tests at all.
In Rheumatology last week had an ultrasound on arteries in temples and neck lasting about 20mins. He's being sent for Temporal Artery biopsy within a few more weeks. Hopefully
Resources in my area have not been great.
Once again best wishes and would be interested in your follow up.

I'm sorry you're so worried but I'm so glad your GP picked up on it after 2 weeks -that's a very good sign it can be treated efficiently.

Temporal Arteritis/Giant Cell Arteritis has many symptoms but not everyone has all. My DH developed the headaches and tender scalp a few mths after getting Polymyalgia. Around 50 % of people with GCA have had polymyalgia.

My DH has had it since January but only after seeing different GP was sent to Emergency care few weeks ago.

It's best to be seen early on after symptoms so just wanted to say it's encouraging for you. GCA treated initially with 40 to 60 mg prednisone then gradually tapered off and should be monitored closely during that time .
Best wishes Thoro.

Good luck Thoro

it's good that they have identified it and are treating it.
a friend of mine had this.

I just remember the pouchy jowls my mother developed. I do not think she put on any weight. She was quite slim and stayed slim.

Not looking forward to the moon face and putting weight on. An even bigger worry is thinning of bones - I already have osteopenia. Oh well at least the headache is gone!

M0nica It's known as "moon face". I had it a year ago, caused by a high dose of Prednisolone. It took many months to go down.

My mother had it. She started on very high doeses of steroids and these were gradually phased down until she did nto need them at all and came off them.

People on high dose steroids to tend to get hamster shaped faces, but as the steriod dose is reduced your face goes back to normal.

I have two friends who both had Giant Cell Arteritis a year ago. Both were hospitalised for a few days to have high dose infusions of steroids , after which they were on daily steroid tablets which have been reduced over the year. One friend said the steroids filled her with energy , they made no difference to the other friend. They have both put on weight - to the delight of one as she said her facial lines disappeared! Both are monitored regularly at the hospital but otherwise lead normal lives. Hope this helps.

Good luck Thoro, do let us know how you get on.

A friend had this, I’d never heard of it.

I know she was on steroids, but gradually on a lower dose.

She seemed to recover ok from it, but it seems she has it again now.

Back on steroids.

She seems reasonably well though, and doesn’t prevent her doing her usual activities.

Good luck Thoro. I hope they get to the bottom of it asap and that you feel much better.

Thanks everyone- out of the blue 2 years ago I collapsed with a dissected aorta and had to have emergency open heart surgery so my still extensively dissected aorta is monitored regularly.
I'm also anaemic and in retrospect have had aching joints for the last couple of months.
I've seen about the sight complications which is quite terrifying but hopefully been caught in time.
I'll add to my post when I've seen the rheumatologist but your experience is much appreciated

About six years ago I had some very debilitating symptoms such has not being able to walk up stairs, no energy, pains in arms and legs to name a few. It was found that I had very high inflammation markers. Many tests showed that I was anaemic and that my main arteries including the aorta were inflamed. Although it was referred to as Giant Cell Arteritis I had no symptoms as you describe. I was put on steroids and then Methotrexate which I still take, although in a small dose to this day. The Rheumatology department at my hospital dealt with it all and I am now in remission and feel fine. I do have to have my aorta checked regularly for any inflammation returning. I know this isn't exactly like you describe but it gives an insight on how these things are dealt with.

When I suffered from Polymyalgia Rheumatica, it was stressed that GCA (Giant Cell Arteritis) was sometimes a complication. If symptoms occur high dose steroids are given as soon as possible. Perhaps it is the connection to PMR that will be investigated at Rheumatology.
An ex-colleague had this combination, and her eyesight in one eye was affected.
You will find lots of info on line, but it is not always a good idea to read too much!
I hope your appointment will answer your questions and put your mind more at rest.

PS the very high dose of steroids made me feel amazing. Like a new person!! Didn't last long though.

I can't really help, but just to bump up your thread I will tell you about my suspected TA.
Many years ago I suddenly became so sensitive to light that I couldn't open my eyes. I had no other symptoms.
My GP immediately put me on the obligatory high dose of steroids. This treatment cured the sight problem and tests showed I did not have Temporal Arteritis. I've no idea what what caused the debilitating episode.
Hope yours clears up soon. Best wishes.