New to GCA

[Cobalt2sister]

Hi. I'm new here. Been reading your posts and so helpful. I'm newly diagnosed with temporal arteritis although I have my biopsy coming up this monday. Was started this week on 60 mg prednisone but today because of visual event raised it to 80 with instruction to go to hospital for IV if it happens again. Fearful of what side effects I'm going to face from steroids but if it saves my vision its worth it. Well, thanks for listening!

[Nextoneplease]

Hi Cobalt2sister and a warm welcome to you 😊

It sounds as though you have good medical support which is brilliant. Prednisolone does have a whole lot of potential side effects as you know, but it’s important to note that many of them are far from inevitable and can be managed. And as you say, definitely worth it to save your sight!

You will have many more replies I’m sure (mostly in the morning), but I just wanted to say hi and hang on in there - and welcome again xx

[Cobalt2sister in reply to Nextoneplease]

Wow! Thank you for the warm welcome! Appreciate it.

[SheffieldJane]

Thank goodness they caught it. Welcome to the forum! You are going to feel weird - no doubt about it, pretty wired and sleepless, but as you say, a small price to pay to safeguard your eyesight. Good luck with the biopsy - although the Prednisalone is possibly going to obscure the result and they must find the right spot. We will be right here to share experiences and to answer your questions when you’re ready. 🌸

[Cobalt2sister in reply to SheffieldJane]

Hi...thanks for welcome. They say I haven't been on prednisone long enough to alter biopsy results. That's why they're doing it right away. But yes, getting the right sample...there's a challenge! They say it takes 3 to 5 days to get results. Ill of course let you all know. Have a good day!

[SheffieldJane]

Mine was diagnosed by ultrasound with a specially trained technician who could identify the halo effect in the arteries. She found them tucked away in my left armpit, just by chance, my temples were clear. I would have had a biopsy if it had been offered. I am sure they are right about getting in early.

[Bcol]

Hi Cobalt2sister, welcome to the forum and good news they have caught it early. The dosage of Pred may sound pretty horrendous, but it does affect different people in different ways. Many of the "possible" effects can be mitigated by sensible diet and behavior and it will be a question of what works for you. There is plenty of information on the site and some time spent perusing through some of the relevant FAQ's will be time well spent. As you will have noticed we have members across the time zones so there is usually someone here to listen to questions and rants and give help and advice. Don't worry about asking questions, no question is too silly to ask. Others with long experience with GCA will be along later to say "hi".

[123-go]

Hi and welcome to the community.You will find a huge amount of support and advice here and the wealth of knowledge shared by our 'experts' is invaluable. We are glad that you have found us.😁

[4sibbs]

Hi, I post for my elderly mum she was diagnosed in 2014 at the age of 89 & was also put on 60mg then had the biopsy which confirmed GCA, mum is now 96 and still on prednisolone the only side effect she had was when she was on 60mg and did have a mental breakdown but we had lost my dad the year before and she didn’t appear to grieve at the time. She’d been having the symptoms for a few months but we were not aware of this condition hence she lost most of her eyesight virtually overnight and has never really come to terms with it. We know the initial high dose saved the little bit of sight she has, mum went into a care home a few months after diagnosis but we have always been there to support her. Hope this helps, as others have said everyone’s body reacts differently but steroids are essential for this condition.

[Hidden in reply to 4sibbs]

So very sorry to read about your dear mum. Another lady on this forum lost her sight completely...lack of help from her GP I understand. GCA is such an awful disease,

[4sibbs in reply to Hidden]

Thank you, There is not enough publicity about this condition I try to spread the word where I can we’ve come across lots of medical professionals over the years who have either never heard of it or only have limited knowledge, one hospital consultant a few years ago stopped her steroids she’d gone in hospital with cellulitis his reason was steroids can hinder healing we didn’t know until she was discharged and she almost went into an adrenaline crisis and had to be re-admitted.

[Hidden in reply to 4sibbs]

Makes us all so fearful of getting seriously ill these days. All medical professionals need to be educated on PMR/GCA. My GP missed mine. I had to pay to get my diagnosis. Do hope all goes well with you.

Anne

[Cobalt2sister in reply to Hidden]

Boy you don't hear much about this out there. Reading is so helpful. I was so lucky I had concussion in January ( yes, if you can believe lucky concussion!!) and wound up with neurologist opthamalogist who is so on top of this...picked it up right away! Thanks everyone for your sharing.

[Nextoneplease in reply to Cobalt2sister]

Well, as you say, that was a piece of luck!!!

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Sounds as if your medical team have things under control, but no doubt still a bit scary for you, and yes, preserving sight is very important, as I know from personal experience (have a look at my profile).

Certainly some of the side effects from Pred are not particularly pleasant, but doesn’t mean you’ll get all of them, and they can be managed….to a lesser or greater degree.

Have a look through this intro post - and then through the FAQs as already suggested…

healthunlocked.com/pmrgcauk...

And always come back with specific questions,….there’s always someone about, whatever time.

At first glance this forum might seem all doom and gloom, but it’s not, we give realistic answers that you may not get from your doctors,. There’s a lot of help given with care, and when appropriate (and sometimes irreverent) humour…

[Cobalt2sister in reply to DorsetLady]

Wow, sure a lot of info but so helpful. Thanks so much. I will read much more...posts etc. This seems to be such a wonderful community of people and I appreciate it.

[DorsetLady PMRGCAuk volunteer in reply to Cobalt2sister]

It helped me so much in my early days... so decided to stick around!

[PMRpro Ambassador in reply to Cobalt2sister]

We do our best

[Hidden]

Keep us all informed of your progress and hope all goes well.

[Koalajane]

Welcome to this great site which is full of people who understand. Keep asking questions as there are many well informed people in here.

[PMRpro Ambassador]

Hi and welcome - as already mentioned, here you get the real deal, warts and all. Every one of us has been there and got the t-shirt, some made the film. Never be afraid to ask if there is something you don;t understand. You may get a link to an explanation somewhere else - we aren't dismissing your query, but sometimes we have written the same answer dozens of times over the years and have a link to save writing it again.

[Sharitone]

Bet you're feeling lousy! But as you say, even if you get significant side effects from pred, it's all worth it just to get the GCA under control. How's the head now?

[Cobalt2sister in reply to Sharitone]

Had headache all day yesterday but I think from prednisone not GCA. So far today ( its only 8 am in new york) I'm ok headache wise.still having little bit of initial good feeling prednisone can give you before you plummet down. But do feel little weird..like in another reality! Not too bad though.keeping a positive attitude. Because I do art am keeping an illustrated and mostly humorous diary. Cartoons. How are you doing?

[venezia1]

Hi - I've had GCA (plus Ra, Sjogren's and fibromyalgia) for ten years - was put on 80mg pred straight away, which obviously saved my sight. All I really want to say is that while prednisone is essential in fighting these diseases, you must keep a check of how long you have been taking it, as one of the unfortunate side-effects after several years, can be the complete shutting down of your adrenal glands. This is something I feel strongly about because I was not warned about this, had to ask for a synacthen test when I felt exhausted, and found that I had to go on hydrocortizone for the rest of my life. All best wishes for a problem-free journey.

[PMRpro Ambassador in reply to venezia1]

Adrenal function is affected much sooner than that - if you are on a dose above about 10mg it suppresses the production of cortisol as that is enough to keep the body working as it should. At lower doses that can take a few months but at higher doses it can be within a much shorter time. That doesn't mean it won't return once you get off pred for the PMR. But if the PMR is not in remission the only effect of stopping pred will be for the symptoms to return.

[altywhite in reply to venezia1]

I will be on the pred for the rest of my life too, 5mg. But, to be honest, I feel fine on it. I don't seem to have the side effects any more and I am just grateful to be able to take a medication which will keep me well. I do have ostopenia but take Adcal and Vit K2 .

[altywhite]

Welcome 😊 As others have said, you will find this forum a great source of information and help. It was invaluable for me and I have stuck around too 😄

[Grammy80]

Hi there Cobalt2sister and welcome. So glad you are here. When I was diagnosed with GCA/temporal arteritis in August 2019; I was at a loss until I found this wonderful forum. I'd never heard of it in my life. There is so much support here for you, answers to your questions and information that helps you be a better advocate for yourself. No question is to silly. Yes, there are side-effects from the steroids but with support and info we all get through them. So glad to hear they bumped you up to 80, it won't be forever. (That was when my cat and I learned to walk the halls together.I'm just so happy you found us~~~welcome~!💕

Did you see the videos son YouTube from the forum? Helpful information.