starting date pred for GCA.

[karools16]

I am interested in hearing how fellow sufferers first experienced GCA and what happened? 10 years ago, whilst working as a live-in carer, I woke up with the feeling my head was beingchopped open! No other way to describe it. Paracetamol didnt help and I had no idea of what was happening to me. Sat up all night, as head wouldnt let me lie down.

[Caro12line]

Mine was similar. 20 months ago I woke up, fine. Sat up in bed and suddenly it felt as if someone had put a red hot, six inch nail through my head, (just above my ear) with a sledge hammer. Then the burning pain continued from the back of my neck to my temple. I had suffered migraines for years but this pain was totally different and on the "wrong" side. Paracetamol, Ibuprofen or co-codymol would not touch the pain. The burning pain continuedwith intermittent 'stabs' for a few days. My ear ached, my scalp was very tender to the touch. I realised something wasn't good and went to my GP. She immediately suspected GCA and put me on 40mg of Pred and an emergency appointment with the Rheumy in 2 days. The Pred "cured" the pain within 24 hours and it then took 4 months to get a positive diagnosis of GCA of the Aorta and Subclavian arteries. I still don't understand why I presented with head pain but I am very greatful to my GP for acting so quickly.

[PMRpro Ambassador in reply to Caro12line]

Possibly because the blood flow from the subclavian artery was compromised - the vertebral arteries branch off and then supply the head, or they were also involved in the GCA - but you can't really see the inflammation within the skull because the brain takes up so much of the contrast and blanks out everything else. If the blood supply to the occipital nerve was involved then that can cause the sort of regional pain you describe.

[Caro12line in reply to PMRpro]

Thank you PMRPro. Yes you are right, negative biopsy and no inflammation seen in MRI or Ultrascan of head and neck. Just a pity it took the "Good Prof" 4 months to work out that inflamed Aorta and Subclavian can cause head pains! But 20 months on all is good. On 5mg "dead slowing " to 4mg and no problems. Except I would love to know what's going on inside (any inflammation) and what damage if any has been done but the Good Prof tells me there are no tests to monitor it and if I'm not in pain then all is fine. My cynical side tells me it's more about the cost of tests etc. Xx

[PMRpro Ambassador in reply to Caro12line]

When did he last look at the anatomy and vasculature of the head and neck mewonders?

Funny - think I might agree there! How's he account for the (admittedly) small proportion of cases of occult GCA where there are no symptoms at all until vision is lost? Or maybe he was just patting you on the head and telling you you wouldn't understand so not to worry about it...

[Caro12line in reply to PMRpro]

I believe he doesn't think he needs to account for anything or to anyone as he is "The Expert". Who ...and I will remember his words forever said "The biopsy is a clear negative, you don't have GCA, which is very good news, because you wouldn't want that" 😞

[PMRpro Ambassador in reply to Caro12line]

Don't worry - I haven't forgotten that either...

[karools16 in reply to PMRpro]

PMRpro, I have learnt more from you, in this forum, than from my Consultant! tHANKS FOR TEACING US SO MUCH!

[karools16 in reply to Caro12line]

Thanks for that Caro12line.Good GP you have to recognise GCA.

[raymck]

Jaw pain a couple of years ago at Xmas. Misdiagnosed as mandible problem so sent to dentist. No appt until after new year by which time tooth extraction was seen not to have been the cause. 3 days of black ink spots ever larger led to loss of sight in 1 eye before Eye Hospital admission for 80 mg pred per diem infusion. Rest is history all the way to club Zero 2 yrs later and living with post-steroid effects,. Another story! Hope you fare better.

[grannma in reply to raymck]

Raymck, I am so sorry to hear of your loss of the one eyesight!! Praise be for being at zero for 2years! I would really appreciate hearing about your post-steroid effects. I am getting close (2mg) but feel I have side effects caused by the prednisone , not the TA! I've had TA for 2 1/2 years. I am curious what side effects you are experiencing. Thank you for sharing!

[karools16 in reply to raymck]

thanks raymck.Am so very sorry that you have lost your eyesight in 1 eye, due to misdiagnosis.My GP only acts on instruction from Consultant, as he has no idea about GCA, and didnt even know what it stood for!

[cdenoncourt]

My GCA came on slowly over 2 weeks. I had PMR being treated for a year before the GCA arose and I had been informed to call the rheumy if GCA symptoms happened. Still it didn't occur to me that a mild pain in my ear was the start. After about 10 days mild scalp sensitivity and mild chewing pain appeared and I realized what was happening.

[karools16 in reply to cdenoncourt]

Thanks cdenoncourt. Amazing how we all have the same disease, but with so many different variations, all awful, of it.

[Doralouise77]

I had PMR for a year, then developed excruciating headache from neck into ear, up side of face into eye and forehead. I had also been having a 'tired' and achy jaw when chewing which would disappear when I stopped. An increase of Pred to 40 then 50 took these symptoms away.

Cheers

[karools16 in reply to Doralouise77]

Thank you animi. Incredible the symptoms we all experience. Hope you go well when you taper.

[christine2715]

I had felt very tired for some time and had problems with my ears. Then I had really bad night sweats and every afternoon from about 3 pm high temperature of 39 ish. Became really weak and breathless with a cough. I had atypical GCA as began in aorta and chest area and spread to temporal when I began to get a real heaviness, throbbing in my head and aching jaw. No real eye problems, just a sort of switching on and off of my eyes.

[karools16 in reply to christine2715]

Thanks christine2715. Gosh, theres no end to the symptoms people, on this forum, are, sadly, experiencing.

[enen]

Terrible terrible night fevers, pain in temples, stiff neck, mouth ulcers, loss of weight, extreme tiredness, unable to walk any distance.

[karools16 in reply to enen]

Thanks enen.Symptoms seem to take ages to lessen, much less disappear.

[karools16]

Well, I was typing away, only to discover that the rest of my saga hadnt gone through! I wanted to say that the following morning, I got an appt. with my GP, who didnt know what was wrong, except to say that my BP was 200 over almost the same. I refused hospitalization, because 3 weeks later, I was going to my family, in S.Africa for Xmas. I dont recall the exact starting dose of Pred, but it may have been 80mg with a plan of how to manage. I was referred to a Neurologist, uopon my return, with whom I have been for 10 years. Am currently on 3mg Pred, with tapering to 0 every 8 weeks. That was the Neuro plan, not mine, and yesterday, everything changed. I had an appt. to see my Respiratory Consultant, who is treating me for Water on the lungs. He told me that the steroids will be increased to 20mg for a year!!! I came to this country to work. Since that fateful night, I was never able to return to my job, or any other, as heart, kidney and lung problems developed. Oxygen therapy is due to be delivered for home use, as I cannot walk without being breathless. I feel so sad when I read the replies to my question as to how you all started Pred, and how well you cope. Well done all of you. I can identify with most of you. Keep on keeping on.