I was diagnosed with GCA 12 months ago and have managed to reduce the steroids to 7 mg without too many problems. 10 days ago I reduced to 6.5mg and for the last two days have had a tender scalp and the side of my face feels slightly stiff. I have never had problems with my jaw or sight. When I was diagnosed I had temple pain only. All my blood results have been normal and the biopsy also normal. My question is do I increase my dose and, if so, how much and for how long. I must admit to panicking a few times in the past and increasing my steroid dose (probably unnecessarily) and I don't want to keep doing that. My rheumatologist signed me off last July by wishing me well and telling me to taper down to zero! Any advice from those of you who have been there would be gratefully received.
Would appreciate your help and advice on whether ... - PMRGCAuk
Would appreciate your help and advice on whether to increase prednisolone dose.
To get from GCA diagnosis and, I assume, appropriate pred dose to 7mg in a year is exceedingly speedy! Particularly since GCA has a habit of flaring for the first 18 months at least. I don't think your previous increases have made any difference to your taper - probably have saved a flare in the past.
Yes, I think you need to up the pred until you can speak to someone sensible. We would usually suggest adding 5mg to where the flare symptoms started - not too much extra. If that is enough to calm the symptoms down, all well and good, but if not, I would add another 5mg.
I'm sure the real GCA experts, DorsetLady and Snazzy will be along soon.
Hello, well that’s nice that your Rheumy is able to tell you that you are in remission. He should sell his secret. Can I ask a few questions? Apart from the facial symptoms you’ve just mentioned, do you feel anything different in any way about the rest of you? Has anything changed in your life or activities? Were you completely symptom free until 6.5mg? Also, what was it that panicked you into upping your dose in the past?
Hi SnazzyDYes, not much time for Rheumy - I'm lucky my surgery keep supplying the Pred without question!
I don't feel different in any other way, just the tender scalp and facial stiffness. A few months ago we had a few disasters, a tree fell on my car whilst I was driving. I was okay but the car was a write off. Then 3 weeks later my husband fell and broke his (replacement) hip. I just felt it was advisable to up my dose slightly after that. I was symptom free at 7mg and things have settled down now so felt l would be okay to reduce by .5mg.
This link confirms usual action to deal with flare as already advised by PMRPro - adjusting doses stated in example to your own circumstances. -
healthunlocked.com/pmrgcauk...
…but would also agree your taper has been extremely quick, so you may need more than the normal recommendation….and what do you mean by “reduced to 7 mg without too many problems”…what problems in particular
I’m sure if you speak you GP or maybe 111, they would probably tell you to increase to a higher dose - maybe 20mg until specialist advice received.
Pity your Rheumy signed you off…you could probably do with his advice right now….
Thanks for the link, I guess it's not steroid withdrawal as it's 10 days since I reduced. I will take an extra 5mg as advised. I've just replied to SnazzyD with reasons l upped my dose before - few disasters happened. Tree fell on my car and husband broke his hip. Really disappointed with my treatment when I see what can be offered but I guess it comes down to where you live! Difficult to talk to anyone at my surgery - it's a lonely road!
No, it’s not SW as you rightly say….and I did see why you’d upped dose previously…quite right too, I probably would have taken similar action in your shoes.
This time I though you have gone below level you need, so please follow advice re flare, but obviously if things don’t improve, or worse still symptoms get more serious you do need medical advice and a higher dose. If GP is difficult to contact, then 111 is there, and if necessary (hopefully not) A&E…
As PMRpro said, GCA is likely to flare in first 18months, and as those of us that have had it, or do have it know, it needs to be taken seriously by all.
Please let us know how things go, it can be a lonely road, but hopefully less so, with our help and companionship. 🌸
Thanks for this. It's so good to have advice and help from people who know what they are talking about.
I think those of you that have experienced GCA are the best advisers, to help others. (which includes myself) as you know. We seem far better off asking the ladies/gents on forum for their advice than any rheumy or doc. I've managed to get my GCA under control. I increased from 6.5mg to 10mg in the end and stayed on that for two week, currently taking 9mg for two week, then will try 8mg.....I just hate the 6mg, that's when I experience PMR/GCA. I have had tender head on higher doses and low ones too and painful arms. It's such a worry having to take too much of a higher dose for too long as the damage Pred does to other parts of our bodies is awful. Two finger nails on my left hand are dreadful.
What dose were you prescribed at the start? 😎
I started on 40mg April 2021 and following Rheumatologist instructions am now down to 7.5 but think I need to follow advice on this site and go up again as my ears are totally ‘muzzy’. Told gp and rheumy nurse but they say it isnt GCA. Afraid I dont trust their prognosis. Best of luck to you.
And WHY are they so sure it isn't GCA? It is very unikely to have burned out in 9 months so you are at risk of a flare
I didn’t have the ears problem when I was diagnosed. It came on in September 2021.
Doesn’t mean it can’t be now though….
Perhaps you should download this study into GCA and ears as PDF and show them - link.springer.com/article/1...
Maybe what I call muffled ears is the same as you have! I’ve been checked by 2 audiologists recently. They say it should improve as my actual hearing has not been affected! This happened after Covid .. the muffling.. came on quite suddenly. I’m using a gadget thing called Otovent .. supposed to clear the Eustachian tube. And just started on mucosan.. supposed to disperse phlegm which might be exacerbating the problem. My own voice sounds strange to me!! Does yours? And of course it affects my dizziness and general stability.
Dizziness and general imbalance is listed as a side effect of Covid - and continue afterwards-perhaps your doctors should considering that’s the cause.
Found this from US -
You may have heard of “Covid toe,” but what about “Covid ear”? As the pandemic wears on, an increasing number of Covid-19 patients have reported issues with hearing loss and tinnitus, a continued ringing in one or both ears. Some have even complained of sudden troubles with balance and an onset of intense dizziness. All of these symptoms suggest that SARS-CoV-2 may be able to affect the inner ear. Researchers at MIT and Massachusetts Eye and Ear have released a new report studying the mechanisms underlying these symptoms. Their findings, published in Communications Medicine, indicate that the inner ear can, in fact, be infected by SARS-CoV-2.
Thanks yes. Certainly worse since Covid.
Thank you. Will do. I am not deaf, but a lot of swooshing. Its really getting me down especially as the medical ‘professionals’ say it is not related.
Any possibility of getting referred to ENT/Audiology Dept to get ears checked?
Don't Specsavers and co do hearing checks for the NHS?
Good reminder .. they do…can book online provided your local store participates
But I am not deaf in fact if anything hearing more acute. Will request appointment at ENT though. Thank you. x
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