Hi Donnahope, oh dear you have been going through the mill. The lower age for GCA is currently being reviewed and if it follows PMR it will be 40onwards. For the moment you may be stuck with the drs being in denial. It's important you get pred at high dose if GCA suspected but it can lead to a false negative biopsy as pred reduces the inflammation.
There is a form of GCA that is usually put as a label on under 50s. It's worthwhile asking the doctor about it. It's called Takayasu's Arteritis. I have linked you to a description of symptom etc. Hopefully someone with GCA can explain the biopsy protocol better than me as I have PMR. Please keep in touch and let us know if pred works and what the drs say.
Some of your symptoms are a bit unusual for GCA as we know it - but that doesn’t mean it should be discounted - so it’s good they are performing a biopsy.
In the meanwhile are they testing for other illnesses - or waiting for the biopsy to be carried out?
I do hope you get an answer very soon - please keep us informed.
The blood tests were for all the b12/iron/thyroid liver ect he did tell me the sediment rate increased after steriods break.. Review of most recent blood.
Ive read little about PMA.
The temple headaches wake me, it pulls my mood massively.
I would think you have more going on than just VitD deficiency- although that can make you feel pretty rotten in itself. The raised ESR just shows you have inflammation in your body, but not what is causing it - unfortunately - and will have gone up again once the steroids were stopped.
I certainly know how you feel with the headaches - does any medication help with those - what about the steroids, did they stop it?
So sorry you are going through this. It is true, however, that people under 50, do not have a strong likelihood for GCA, but whatever it is, it needs to be thoroughly investigated so sounds like your doctor is doing the right things, but anything is possible. Poopadoop is suggesting that the age factor is being reviewed .
Hi Donna just wanted to send you a big hug. It’s a terrible time while you’re waiting to try and get a diagnosis. I also had a swollen eye on the same side as my headache but nobody else could see it or agree that it was bigger than the other one. Take care and let us know how you get on. X
First flare up thrre was a noticeable difference in the eyes, I have astigmatism anyway so more rugby ball shaped but it was swollen.
My blood pressure has been high and heartrate too.
Originally thought scratched eye.. Cellulitis and maybe GCA optician's referred to hospital.
Had comoxi clav antibiotics and 40MG steriods over five days.
Refferef to eye clinc for biopsy.
Felt better then approx 3 week after another flare another hospital visit ... Infection markers lowered but blood pressure high... They assumed that its the cause as im 40.
I was crying with nausea, barely able to hold my head... didnt feel like me.
Give meds just for the blood pressure and referred to gp.
Blood test was a month to i the day of my first hospital visit and inflammation was as high creeping up.
I really do wish they could get the "50" out of their minds. No-one told GCA it can't happen in under 50s. Plus, there is a version called Takayasu's arteritis that is diagnosed in under 40s. One lady had a Takayasu's diagnosis at first and then she noticed it had been changed to GCA. She asked why - "you are over 50 so it is GCA". Same patient, same disease - only the name was changed ...
The medical literature actually says it is uncommon under 50 but that doesn't mean it doesn't happen and there are a lot of papers warning about missing the diagnosis because of being fixated on the age.
Except I just found a fast track advisory in the north east that says "GCA never occurs under 50 and is very rare under 60". What utter tripe.
I’m not surprised you feel overwhelmed and as though this will never end, especially as you feel nauseous. It’s so hard to think of anything else when you feel sick. I think you should mention anything to the doctors that could help them in diagnosis and the way they are thinking about your illness. You could also ask them if you could have an anti nausea drug such as Prochlorperazine - I’ve had it and it helped. While they are working out a true diagnosis and therapies to support you they may want you as free of medication as possible but it’s worth the ask. My heart goes out to you as your body and mind adjust to what is going on with you. It will get better - hang in there. 🌺
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GCA-PMR awaiting biopsy
Newbie reducing pred already
Awaiting confirmation of GCA
Biopsy
