Giant cell

[Christi2]

I've just been diagnosed with GCA but haven't been told a lot about it can someone please explain what I can expect

[SheffieldJane]

You must be in shock Christi2, but you've made the first good decision by coming on here. This is a very knowledgeable, friendly site.

I am hoping DorsetLady will be available to tell you everything you need to know tomorrow. I guess she's in bed now. She knows everything there is to know for the lay person about GCA. It's late night here though.

If you have specific questions there is always someone to give advice, shared experience or suggestions.

Are you in the US?

In the meantime hold tight, it will be ok.

[CT-5012]

Hi Christi2

Welcome to the club that non of us wanted to join. I started with PMR then GCA joined in a couple of months later. I suggest you read through some of the old posts lots of information there. If you have any questions please don't be afraid to ask, we were all afraid, worried etc at the start but you will find lots of support here. The experts will be here as soon as Europe wakes up. All good wishes.

[DorsetLady PMRGCAuk volunteer]

Hi,

As SJ says was in bed, had a heavy day.

You might like to have a look at the attached first. But then please come back and ask about anything. There is a lot of information to take in, and sometimes it’s a bit overwhelming, but you will always get an answer on here.

I had GCA for 5&half years, so been there, got the t-shirt. Now been free for well over a year.

healthunlocked.com/pmrgcauk...

[Tamtan2 in reply to DorsetLady]

You have given me hope thought I was on my last legs The last few months thinking an aneurysm or something else Was going to kill me as I’m still in the dark with this illness. can you tell me are there different stages of cranial Gca people say they haven’t got the bad version .........I’m going to see rhuemy nurse Friday never spoken with anyone since April want him to explain some things to me ie should I have scan yearly to check in and keep an eye on lumpy head (aneurysm.) Need my mind put at rest. 🙏🏽

[DorsetLady PMRGCAuk volunteer in reply to Tamtan2]

There may well be slightly different versions of GCA - and I think it depends on what arteries are affected in the head.

The cells grow randomly in the blood vessels -not along the entire length of the artery... and some arteries are affected others aren’t.

For example my temporal artery was never enlarged nor sore whereas its one of the the ones that most descriptions quote as being a typical sign.

Plus it may also depend on how long it took to diagnose - mine was 18 months so I would assume that more of my arteries were affected than someone who is diagnosed in a matter of weeks - but whether that’s the case or not I don’t know.

As for annual scans etc, not sure what the procedure is - probably depends on resources - but definitely ask the question.

[Tamtan2 in reply to DorsetLady]

Thank you I’m the same I think, ( it took 18/20 months to be diagnosed as I had distorted vision i took myself to hospital in Thailand lumpy sore head and could not wash or comb hair as a couple of veins enlarged on top of my head I was due to come homenext day so I left it and got night appt next day yes next day at home Locum was amazing on 60 mg prednisone before I Even left office but then it all when wrong that was 23 January 2020 didn’t see rhuemy until March and still on 60 prednisone they forgot about me MRI done told by rhuemy no CGA a week later neurologist looked at my scan I DID HAVE GCA)...still there but a bit flatter also I’ve no lumpy veins in temples seen as yet although pillow some nightS feels like a brick and have a crawling feeling everyday over my head . We will see what my appt with rhuemitology nurse brin* but not a lot of hope bloods done yesterday GP nurse asked what’s GCA ? It’s scary. But thank you so much can 8 ask how long you have had it to date. 🙏🏽

[DorsetLady PMRGCAuk volunteer in reply to Tamtan2]

I had it undiagnosed for 18 months on Pred for 4,5 years - so all in all 6 Years - give or take.

Been in remission since September 2016.

[PMRpro Ambassador]

This is a link to what we call "The resources post" on another PMRGCA forum. In it you will find lots of links to reliable info including the NE or England charity site where you will find info and stories from people with GCA.

patient.info/forums/discuss...

When I joined my first forum some 9 years ago I read all the past posts so I knew lots before I ever posted. You couldn't do that now, even on one of the forums, but the links there will give you a start.

[enan-illuc]

Hi Christi2,

I have had Giant Cell and PMR for over a year (17 months or so). It took me a few months but I did learn to live with this beast (I call it the Wolf as in the old Army saying: I have a wolf by the ears and I cannot let go). The more you know the better you can cope. Prednisone can be 'scary' but it is really a miracle for us with GCA/PMR. I try to take this journey a day at a time and adjust to the many changes it brings. This Forum has been a great blessing for me and I think it will be the same for you. You will get through this and there are some breakthroughs like Actemra/Tocilizumab just approved in the US. Keep an open mind and listen to the "Aunties", they are the best. I hope this helps.

Enan

[Tamtan2 in reply to enan-illuc]

This has helped me also thank you PMR for last 4/5 years gCA diagnosed March but had it about 18 month I think first symptoms appeared. 🙏🏽