GCA affecting other areas?

[Daughters2]

Hi. As you know my mum is totally blind through doc not realising GCA in time. ( almost 2 years next month) She’s on 5mg pred Gets headaches still. We are discussing results from a routine lung scan today and she’s worried . Can GCA affect other organs? Xx thank you

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear your mum is unwell still after all she’s been through.

Unfortunately GCA can affect other parts of the body as well as head…see this picture for Cranial GCA - Extra-cranial (or LVV) GCA.

It is rare for the lungs to be affected, but not unheard. If LVV is suspected then your mother should be offered an ultrasound.

Has an increase in Pred been suggested to address her headaches, or they trying to find the cause before they do that?

I’m sure others, including SheffieldJane , with LVV will be along shortly with more info and advice.

Fingers crossed, and hope for best news for your mum, and you. Please keep us informed.

GCAPMR

[Daughters2 in reply to DorsetLady]

Thanks again. Mum has a ‘suspicious inflamed ‘ lymph node in chest area. ( not breast but middle section if you know what I mean) so she went for a PET scan on Saturday and health/ breathing tests tomorrow results in just over a week. She was so upset and beside herself but I managed to calm her down. She doesn’t want to have to have an operation since she’s scared of being in hospital and need taking to the loo etc. Let’s hope it’s nothing to worry about xx

[DorsetLady PMRGCAuk volunteer in reply to Daughters2]

Do hope so, please keep us informed- and best wishes to all of you.

[Daughters2 in reply to DorsetLady]

Xx

[Daughters2 in reply to DorsetLady]

Hello lovely DorsetLady. Update today after my sister took mum for PET scan results They are 99% sure it is cancer of lymph nodes in her chest x2 we think. Biopsy in next 2 weeks before can give us an idea of treatment. 🥲 feeling fed up x

[Nextoneplease in reply to Daughters2]

So sorry to read this Daughters2 😟

Think you’re entitled to feel fed up! Allow your emotions to come out on here if you want, because you’ll no doubt be in coping mode with your mum…

All the best to you x

[Daughters2 in reply to Nextoneplease]

Thank you I will. I’m on holiday in uk til tomorrow. I’ll be staying with mum tues weds next week xx

[PMRpro Ambassador in reply to Daughters2]

Hugs xxxx

[DorsetLady PMRGCAuk volunteer in reply to Daughters2]

Oh dear, she’s been through such a lot already - as have you all. Virtual hugs 🌸

[123-go]

I was diagnosed with LVV -aortitis: inflammation in aortic arteries-an extra 'gift' from PMR. Diagnosis was made during an ultrasound scan so yes, other organs can be affected. As DorsetLady has said, it is uncommon for lungs to be involved but if that is the case for your Mum she will receive the treatment she needs.The headaches may well mean higher doses of Prednisolone and if that is needed so be it. It would be the correct course to follow.

Of course your Mum is worried but I'm sure that the appointment later today will be informative and that you will be reassured by an informed treatment/management plan. If there is anything you don't understand, ask for things to be explained. I hope the discussion is useful. Once you know what you're dealing with some of the weight will be lifted.

Please let us know how things go.

[Daughters2 in reply to 123-go]

Thank you xx

[SheffieldJane]

My diagnosis is GCA/ Large Vessel Vasculitis. Apart from constitutional symptoms, a headache - not severe, was my only symptom. The characteristic halo effect was spotted in my left armpit during an ultrasound scan done by a specially trained technician to look at my temple arteries, neck and underarm. I had a separate scan of my Aortic Artery ( all clear). I am currently being treated with low dose Prednisalone and Tocilizumab subcutaneous injections that my husband does for me. So as DL points out this disease can effect other arteries and some tests should perhaps be done. Fortunately my Rheumatologist is very thorough. Wishing your mum well and you too at this worrying time.

[winfong]

I've got extracranial GCA as well (1st time I heard this term!). Mine affects pretty much everything below my heart down to my femoral arteries. So, as you can imagine, all sorts of crazy symptoms. And none of this was obvious before my 1st CT scan. Hope things go okay.

[DorsetLady PMRGCAuk volunteer in reply to winfong]

See picture above....been around for long time, but expression not used that much I agree!

[winfong in reply to winfong]

Forgot to mention that other constitutional symptoms - coughing, shortness of breath - this has never affected my lungs