newly diagnosed with giant cell arteritis

[Amydyton02]

I’ve newly been diagnosed with GCA, I’m currently on 40mg of prednisone a day and would like to know of any tips for nutrition and health lifestyles to help with my condition. I’m only 20 and I am at a bit of a loss as I there isn’t any studies in people my age having GCA. Thank you x

[PMRpro Ambassador]

Hi and welcome - could you tell us a lot more about your history of symptoms and diagnosis? Usually someone your age would be diagnosed with Takayasu's arteritis and to find a rheumy who even considers GCA in a 20 year old is amazing - who is it? Just checking - are you on prednisone or prednisolone, which is more usual in the UK.

First suggestion - cut your carbs drastically, especially processed ones and added sugar. This will reduce the risk of weight gain which is common with pred and and also lower the risk of developing steroid-induced diabetes.

Are you a student or do you work?

[DorsetLady PMRGCAuk volunteer]

welcome -and ditto to PMRpro’s comments

-and intro post which will give more help (hopefully) -

healthunlocked.com/pmrgcauk...

[SnazzyD]

Hello there and welcome. DorsetLady will be along with her newcomers’ information dump post which should help get some clarity for the way forward and answer some of your questions and no doubt cause a load more! We’re here to help.

May I ask how they diagnosed GCA as opposed to the more common arteritis in the young (under 40’s) Takayasu’s Arteritis.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

DorsetLady will be along with her newcomers’ information dump post 

not quite how I would like it described 🤔

[SnazzyD in reply to DorsetLady]

Ah, the word dump. Just realised it has another meaning 😬. I’ll work on my delivery!

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Think I knew what you meant! 🤦🏻‍♀️

[Amydyton02]

Hi thank you for the response, I had gone into a&e on the 11th with severe shooting pains in my head, blurred vision, difficulty when eating, tender scalp alongside other symptoms . On a blood test it showed inflammation the doctor suspected GCA and prescribed me prednisolone at 40mg and referred me to the ambulatory emergency care. I hade more blood testing done as I still have most of my symptoms and with the bloods they concluded it was GCA this was only yesterday I’ve just spoken to my doctor who is putting me through to a dermatologist to have a biopsy and check my other arteries to check for any damage.

I work in child care but I haven’t been able to work with the pains I am having.

Thank you for the help.

[PMRpro Ambassador in reply to Amydyton02]

Was that your GP? A DERMATOLOGIST for the biopsy? Are you sure you heard correctly? GCA is managed by a RHEUMATOLOGIST and the biopsy is best done by a vascular surgeon and within a few days of starting pred for the best results. The GP should be contacting the local rheumatology department for an emergency referral - especially at your age. Which is your hospital?

[Amydyton02 in reply to PMRpro]

this was all done at the hospital in Dartford darent vally , they told me to get in contact with my GP which I have this morning and the GP told me he was referring me through to a dermatologist he didn’t mention a rheumatologist.

What would you suggest to be best to do now as I’m very unsure if I’m getting the right care now ?

[PMRpro Ambassador in reply to Amydyton02]

Call the GP back and tell them you are in touch with the PMRGCAuk charity and they have advised you need emergency referral to a rheumatologist. GCA is a medical emergency in the same way as a heart attack or stroke. I must admit, I'm a bit surprised that the A&E consultant didn't arrange something.

[PMRpro Ambassador in reply to PMRpro]

Just had a look

medway.nhs.uk/services/rheu...

says

"We provide an urgent referral service GPs for conditions such as temporal arteritis. Access this service by calling the main hospital switchboard on 01634 830000."

That is the service he needs to access - temporal arteritis is the old-fashioned name for GCA, And he needs to do so as soon as possible.

[Amydyton02 in reply to PMRpro]

I’ve just been in contact and I must’ve miss heard he did put me through to a rheumatologist referral. Thank you

[PMRpro Ambassador in reply to Amydyton02]

Excellent! It isn't unusual to mishear and even not hear in the early days when you are told something, even face to face. It often helps to take someone sensible with you to consultations who will listen, even take notes you can look back on later. Some doctors are happy for you to record consultations on your phone for the same reason but always ask first.

Who took you to the ED at the weekend? I hope you have some support.

[Amydyton02 in reply to PMRpro]

I am very lucky I’ve got an amazing support system thank you my mum has been coming to appointments with me as she has had a lot of questions that I never thought of so I am lucky enough to have some amazing people to help me.

Thank you for all your help, is there any thing I need to do or know to help or improve symptoms other then the steroids?

[DorsetLady PMRGCAuk volunteer in reply to Amydyton02]

Steroids are the go to medication - certainly initially... and please read, and let your mum read, my intro post [she's seems spot on...well done mum]

As stated cut the carbs - and when you have your head around things [no pun intended] have a look through the FAQs, but don't try and cram too much in too soon - you just get overwhelmed by it all. take your time, and please any question, concerns just ask - that's why we are here...

[Amydyton02 in reply to DorsetLady]

thank you so much I will have a read now

[DorsetLady PMRGCAuk volunteer in reply to Amydyton02]

It may not make a lot of sense today, but hang on to it…..you will understand it a lot better in a few months time.

Good luck with Rheumy appointment…

[PMRpro Ambassador in reply to Amydyton02]

We mums are quite good like that! Not that I'm needed by my lot who all work in the NHS in the UK! Though one of the girls rang me from her flat in Yorkshire because there was a spider in the shower ...

Tell mum to ask us any questions she has too - always someone around even if they are in the USA.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not sure what you were supposed to do about spider - my daughter used to be like that when she was a home….. very often a screech of “DAD!!” …..who would have to leap to help. Good job she got OH to do it now… darned things would have disappeared by the time he got to NZ…..😳

[PMRpro Ambassador in reply to DorsetLady]

Me neither! It was a mouse yesterday, Spiders I can cope with but mice - yuk! however she says OH is up for them ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

A country girl like you - and 🐭mice? Rats, now that I could agree….

[PMRpro Ambassador in reply to DorsetLady]

Mice are also dirty little scavengers and get places rats can't! I have dealt with them - just don't like them. What cats are for ...

[JanetRosslyn in reply to PMRpro]

A neighbour came screaming for my brother's help to catch a mouse she had seen when moving her cooker. He armed himself with a broom.. the neighbour moved the cooker... and my brother hit a small mouldy sausage that must have rolled under the cooker many months ago.

[DorsetLady PMRGCAuk volunteer in reply to JanetRosslyn]

Luv it! 😊

[PMRpro Ambassador in reply to JanetRosslyn]

Good one!!!

[Broseley in reply to PMRpro]

FYI: My biopsy was done by an ophthalmologist.

[PMRpro Ambassador in reply to Broseley]

Depends on the system in a given hospital - if they do lots, that's fine but GCA and the biopsies aren't that common.

[Broseley in reply to PMRpro]

I asked him why he was doing it as opposed to a vascular surgeon. He didn't know, but guessed it was because the op site was near the eye. Not that near! They had to shave some of my hair off!

[PMRpro Ambassador in reply to Broseley]

Not that near and not attached to or part of the eye! Though I think it is Gateshead where an ophthalmic surgeon is a close part of the GCA team and does them. Possibly more available at short notice.

[Magzzz in reply to Broseley]

I was fortunate to have a great vascular surgeon. As I was admitted to hospital with swelling left eye, as got me in for emergency biopsy. Awaiting results. Not a good feeling many symptoms. 40 mg prednisone now this comes back positive will put me on 60. 40 taking care of most of the pain but still pain in area of biopsy but probably normal at this point was less than a week ago. Best wishes

[PMRpro Ambassador in reply to Magzzz]

Had you noticed this thread is over a year old?

[Broseley in reply to Magzzz]

My biopsy site gave me minor pain for about 8 months at least. The stitches, of which there were 40, teeny tiny ones, were meant to be dissolving but I ended up having to pull them out after 6 months, mainly just by vigorous rubbing but a bit of picking too! That helped as they were itchy.

[Ronzy]

😂😂😂😂

[Hidden]

I wish you well Amydyton02 You have come to the right place for help, support and really caring people.

I, most certainly, would cut carbs drastically. I recently lost 16 pounds by cutting out potatoes and bread.

I am never hungry and love to walk about listening to music.

Good luck to you!

[Sophiestree]

Gosh, you are very young to be given that diagnosis and not Takayasu as PMRPro says. Cutting the main carbs like bread, rice, pasta and potatoes, plus low salt and no sugar will help to avoid the moon face that you might have seen in people on steroids and help with weight gain.If I were your Mum I would want to know you were seeing the best in their field for a girl so young.

Lucky you to have found this site though. You will get excellent help and guidance from the start.

Everything needs to happen at speed now before the steroids mask the issues.

We're all rooting for you.

Keep us updated.

[Grammy80]

I'm so glad you are here and found this wonderful group of supportive people. Another great plus is you are talking to folks who travel the same road as well as those, like Dorset Lady, who are looking at GCA in the rearview mirror. {I found that a real inspiration} . So glad you were diagnosed and are on the right track. You are getting a big hug from all and you can always hop on here with any questions...your Mom sounds awesome!! 💞

[LRevell]

I’m so sorry for your diagnosis of GCA. It is very rare indeed to have it so young. Eating fruits, vegetables, chicken, shrimp and staying away from sugar and processed foods is your best bet. You want to get rid of inflammation the best you can. It’s what causes so many autoimmune responses and they are on the rise. Look up the Autoimmune Protocol Diet! Good Luck on your health journey.

[PMRpro Ambassador in reply to LRevell]

Did you notice this thread is nearly a year old?