GCA and symptoms

[kate1978]

Hi since I was diagnosed with PMR , my main fear is the dreaded GCA and as a migraine sufferer would I recognise the symptoms? What would I do if I suspected the symptoms? I'm currently on 3mg pred and trying to get down to 2 and a half, it's taken me 5 years to get to that dose, started on 15 mg

[Mikb]

For me the symptoms were headaches like none I had ever experienced before, scalp pain to the point I cut my hair really short, jaw claudication and extremely sore neck and shoulders. If you experience GCA symptoms, you should go immediately to the hospital and get checked out!

[SheffieldJane]

I think you share this fear with most PMR sufferers and GCA sufferers who fear a relapse. I would like to say that you are out of the woods because it looks like it, but no one can. I’d look out for the peculiar symptoms like the aching jaw whilst chewing, the sore tongue, double vision and a new headache. My gut feeling is that you will be fine. I get migraine type headaches, especially when I taper. I have a PMR diagnosis.

[kate1978 in reply to SheffieldJane]

Thanks for your response Jane, I have had migraines for 50 years and it's part of my life which I would could do without, was just worried that I wouldn't notice the symptoms 👍

[DorsetLady PMRGCAuk volunteer in reply to kate1978]

Oh I think you would, the combination of symptoms are like no other, including migraine.

It’s not just a headache per se, but as Mikb says extremely tender scalp, jaw claudication, shoulders, neck, visual disturbances (I know you get them with migraines as well, but you know what they are like).

But at this stage in your journey, unlikely! Can’t say never....but unlikely.

[SnazzyD]

Hello, my GCA pain was not like a standard headache or migraine once it got going properly. For me, those feel like a brain pain but this felt more surface burning. It started in the base of the skull and temple then encompassed the whole side of my head. On the final night I couldn’t bare to put my head on the pillow. I had it on the other side but nowhere near as bad. I also felt on another planet which I can’t describe. On the final day my jaw started to run out of steam when chewing; it was just too tired to continue on one side. I also had a deep feeling that there was something very wrong, not worry, more of a resigned foreboding. Had it twice before when I’ve been extremely ill and in jeopardy.

In the run up for a number of weeks (months?) I was waking in the mornings with pain in the base of my skull and a normal headache which would be gone in an hour or so. I blamed my pillow. I has also been having increased menopausal hot flushes, neck pain in a specific line that just felt I’d slept funny but wasn’t responsive to massage, tiredness, occasional dry cough, croaky voice, kept forgetting words and losing my train of thought. My blood sugar kept dropping on my cycle home from work such that I’d have to stop and eat a sweet to be able to continue. None of those things were enough to go to a doc and I blamed on my Superwoman lifestyle.

[Mgt1234]

Hi Kate,

Firstly well done for getting so low on your Pred. I think from memory I had PMR for maybe 4 or 5 years, when I started with the most horrendous head pain, temple pain, and jaw pain, at the time I didn’t connect it to the pain I had in my neck and shoulders. Over a 3 week period I was back and forward to my GP, like you I too suffer with Migraines and so he treated it as such. But this was different, very different, despite treatment for Migraine nothing touched the pain. I didn’t think I could go on it was dreadful, but then I turned up for another appointment and he wasn’t at the practice, I saw another GP who immediately recognised the symptoms and rang my Rheumatologist immediately. I was advised to go straight to hospital and started on 60mg of Prednisolone, within a few hours the pain had stopped. To this day I thank the second GP for her actions, I am so fortunate not to have lost some if not all of my sight. Over the years I have had a few flare ups, I now manage it long term on 11mg split dose over a day (Rheumatologist agreed) and this seems to be effective but long term use and high dose does come with consequences eg steroid induced cataracts, diabetes and now SVT. I hope this helps.

Love

Margaret x

[kate1978 in reply to Mgt1234]

Hi Margaret sounds awful, but as you say thank goodness you didn't lose your eye sight. What is STV ?

[Mgt1234 in reply to kate1978]

Hi Kate,

SVT stands for supra-ventricular tachycardia, I take 2.5mg of Bisoprolol which seems to be managing it, so that’s great. Xx

[Omanain]

Thanks for this post and a big thanks from you people who have suffered from GCA. I now have a clear idea of what to look out, for the symptoms are certainly not minor are they? Best wishes to you and good luck with your tapering. Kate

[j-e-a-n]

As well as the symptoms the other members have sai, I also had the most dreadful earache, and nothing I took for the pain worked at all, then as soon as I was dignosed and put on 60 mgs Prednisolone, every pain went- bliss

[kate1978]

Fingers crossed I don't get it, this site is a god send to me x

[Jeannie29 in reply to kate1978]

For all of us I think, I wish you well x

[kate1978 in reply to Jeannie29]

Thank you x

[Daisychain12]

Well yet again we all need to bless pred. X