Update to: Can GCA flare be triggered by a fall?

[Phoenix51]

I posted the above question a week ago, thank you to all who replied, much appreciated 😊

My GP told me in a message via receptionist to stick at 10mgs unless visual disturbances or jaw pain. However by yesterday I was so fed up of the occipital head pain, neck stiffness, shoulder and pain in groin that I rang Out Of Hours service. Dr phoned me back and after hearing my symptoms said possible GCA flare and/or PMR. He said it’s difficult to tell but he did say ( as you all did) that a reduction of 60 down to 10mg of Pred in 3 months is too quick. He told me to go back up to 40mg and speak to GP again Monday. As I had made much progress on the tapering and had got to 15mg without too many issues I was reluctant to go straight back to to 40mg. I read through the information booklet linked on here by PMRpro from Leeds hospital and Leeds uni where there is a section on ‘sick days’, the guidance recommends going back up to 20mg if you are on 10mg so that is what I did and will try and speak to GP this week. Unfortunately I was hoping for a swift result as when I first started on the Pred my pain seemed to be relieved within hours. I guess I was hoping for the same.. the pain isn’t as bad this time round. I took my second dose of 20mg first thing this morning but I still feel unwell. Maybe not GCA flare or PMR at all??

[DorsetLady PMRGCAuk volunteer]

Maybe 20mg not enough - probably not if GCA!

You may be “reluctant” to go to 40mg, but a few days will do no harm, doesn’t have to be permanent!

OOH doctor gave you good advice, if it were me I’d be following it.

[Hidden in reply to DorsetLady]

OOH dr are often good. Last one sent me to hospital. I wasn't happy but he was right.

[PMRpro Ambassador]

That booklet is NOT relating to GCA, it is relating to pred dose in the case of infections/illness when you are adrenally suppressed - something totally different. All patients under 20mg/day who become ill for whatever reason need more steroid because their body can't respond normally to the stress. That is what that booklet is about and I put it up because it relates to us all if sick.

You are describing a flare of GCA, an emergency doctor thinks so too and what you need is the dose for GCA, not for adrenal suppression. If you have occipital headache that is very suggestive of a risk to your visual centre. Please take the dose the doctor said - and if you have any visual symptoms then call them again or, even better, go to the ED.

You may not want to take 40mg pred - but if you end up losing even part of your sight you may live to regret it.

[Hidden]

I agree with the others. A GCA flare needs treating immediately. It may be just for a few weeks, then on advice you can taper. Sight Vs a few uncomfortable weeks. A few months ago a lady had been treated for onset of GCA and the treatment was too late and low and she lost her sight. I don't want to read yet another story with that outcome. 🌻

[jinasc in reply to Hidden]

Neither do I - too many when we first started out and now less - but one is too many.

[Phoenix51]

Thank you all for your advice much appreciated. PMRpro, my apologies for referencing the Leeds booklet incorrectly you were of course right to point out my mix up with the adrenal insufficiency.

I will do as you all suggest as you are the experts in this .. I was just wary as have had various medics suggesting various doses and did not know what experience the OOH Dr had in the area of GCA. I was also still wondering if my symptoms are related to the fall I had two weeks ago and not GCA flare. As I haven’t had any visual disturbances other than the blurred vision, I was hoping that 20mg might be enough. I have complete faith in your knowledge, experience and expertise and will up my dose to 40mg as you suggest. I took 20mg this morning should I take another 20mg now and then start on the full 40mg in the morning? Thank you

[Phoenix51]

Just to add, I am concerned about my sight as my mum has lost most of her sight through AMD and other things ( she too had GCA as did my dad many moons ago) one of the reasons I was keen to reduce the Pred is that the ophthalmologist thinks my recently diagnosed IOP, glaucoma and cataracts are probably due to high dose Pred. He says the pressure should come down as my dose reduces m, I am also putting latanoprost drops in every night.

[SheffieldJane in reply to Phoenix51]

I was diagnosed with GCA about 10 days ago and am taking 40 mgs of Pred. The headaches seem stronger when they occur which is a worry and will perplex my GP. I still think this path is safer than any kind of “ wait and see” on my part. My Optician diagnosed Glaucoma with loss of peripheral vision and Cataracts, also high eye pressure. On going tests from an hospital eye specialist were cancelled in March.. I had a grandma and a great grandma who lost their sight through conditions that could have been GCA. I receive no treatment and my eyes ache a lot. We are a bit in the same boat. I’d rather be safe than sorry Cataracts can be dealt with, you have the drops for Glaucoma. I even read that there is something they can do to relieve Glaucoma pressure during a Cataract operation. This is not a comfy place to be though. Courage!

[PMRpro Ambassador in reply to SheffieldJane]

If you think the eye problems are worsening you need at least to have pressures checked - especially now you are back on a much higher dose. If the local optician can't oblige at present, you need to contact the eye department at the hospital. In Sheffield you have no problem about getting advice at present:

sheffieldeyecentre.nhs.uk/

and they are open.

[SheffieldJane in reply to PMRpro]

Very helpful. Thank you.

[Phoenix51]

Thank you SheffieldJane , sorry to hear about your recent GCA and glaucoma diagnosis , we do indeed seem to be in a similar boat, paddling upstream it would seem. The more I read on this site and other areas of interest the more I learn .. what a challenge this illness is in terms of diagnosis and treatment and the way it overlaps with other conditions seems to make it a minefield for patients and medics. Thank goodness for communities such as these that help to carry the burden on the difficult journey. Hoping to feel better today 🤞

Thank you for your support, I hope you are able to have your follow up eye appointment soon. Mine has been cancelled twice so I have no idea if the drops have reduced the pressure. Hope so as I don’t want to lose anymore peripheral vision. Take good care 🌈

[SheffieldJane]

It can really seem overwhelming at times. We’ll get there.