I usually lurk on the Lupus site as I have UCTD. @PMRpro suggested I post here to get some guidance and advice as I have been recently diagnosed with GCA further to a temporal artery ultrasound scan. I am 53, have no eye involvement and have been started on only 20 mg Prednisolone (instead of the suggested 40 mg) due to C19 risks. Feeling a tiny bit better after a week, but still have head pain, fatigue and night sweats. Rheumy is reviewing dosage and getting back to me this week.
Thanks for reading and hope that you are all feeling as well and as safe as you can be in this current, extraordinary situation.
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Horsewhisper
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Welcome to the forum. I have pmr not gca but our expert on gca, dorsetlady will no doubt be along shortly to give you all the info on the subject. Good luck. YBB
There is certainly a lot of info about and why its easier if us with pmr just let dorsetlady give you the links having been there herself. Keep reading and feel free to ask any questions you have. There is ususlly one of us floating around to answer questions. YBB
Hi, horsewhisperer...welcome. I am a PMR only person so can't (always) comment on GCA. But fatigue and night sweats seem to be a common theme of PMR, GCA and pred! I am sure some GCA people will be along...🌻
Thanks Poopadoopy, I thought I’d said goodbye to the night sweats with the other menopausal symptoms a year or so ago! Not great to have them back....hope they abate soon when I get to the right dose. 💐
I had just about done with mine at 55 when dx. Is isn't nice to have them again us it. They go go...but often are a sign of PMR flare...but don't know about GCA.
I can maybe understand the Rheumy’s reticence to start you on a higher dose, but TBH, I doubt very much that 20mg will be sufficient to fully control the inflammation caused by your GCA.
It’s good to hear you don’t have any eye issues, but I really think you do need to be on 40mg initially.
You might like to have a look at this, you will already now about some of it, but it might be useful -
Hello DorsetLady, thanks for the guidance re: dose, I should be hearing back tomorrow about next steps and will let you know. The link is really helpful, particularly about pacing and not doing too much - that’s the bit I struggle with! Will keep you posted.
Yes at least the restrictions prevent us from doing too much! The steroids have disrupted my sleep patterns a bit, despite taking them in the morning and I find HU is great to browse through at 3 am in the morning! Looking forward to taking a look at your posts later on!
Hmmm - I'd rather enough pred to manage the GCA and concentrate on shielding really well to make sure I avoided the Covid 19. Not convinced that 40mg will be significantly worse risk than 20mg in that context - but far preferable with regard to the GCA. Mind you - you have had the signs of GCA for a very long time - I was first talking to you about it a year ago!
Glad to have hopped across to this board, thanks for the tip! Yes I’m of the mind to manage the GCA and focus on the shielding. We live in a remote location and are taking extra care with everything, so an increase in Pred is manageable for me under the circumstances. I’ll be back in touch.
I have both GCA and PMR and started on 60 mg pred which I understand is fairly standard when GCA is involved. I agree with PMRpro that a dose that's appropriate for GCA would be better. I'm sure you're responsible enough to take shielding measures and not to risk getting COVID-19.
Welcome to the forum Horsewhisper. I am in a similar situation in that GCA has been detected in my armpit by ultrasound scan. I am not being offered extra treatment or further testing due to the Pandemic. My Temporal Arteries were clear and I am at the tail end of PMR, currently on 3 mgs. I have been advised to increase to 40 mgs Pred if I develop the classic symptoms of GCA affecting my temporal arteries, ie Headache, jaw claudication, tongue aching, any visual disturbance. I have cataracts, Glaucoma and a retinol haemorrhage in the eye, so more Pred is not advisable. So like you, in spite of a very supportive Rheumatologist, I am having to sit tight, and wait it out.
Hello SJ, thanks for the welcome. I’m sorry to hear that you have GCA in the armpit. A tricky time for you in not being able to increase the dose of Pred if you need to, I really do hope the disease doesn’t reach the temporal arteries. I have had a good read of many posts on this site in the last day or so and am feeling better informed about GCA and LVV. Early days for sure and definitely a case of sitting tight in this unusual situation we have found ourselves in. Take care and all the best.
Just want to point out that it probably isn't limited to the artery in the armpit - there is a limited number of arteries you can look at by any means: TAB (biopsy) requires either an easily accessible artery like the one on your forehead or open surgery being required since you would have to remove a bit of a large artery and sew it together again. Ultrasound is the same to some extent, the artery needs to be fairly close to the surface to visualise easily.
I'm sorry to hear that for you Jane. I just went from 5.5 back to 6 as pain was creeping right up. Ah well one day. Hope you are having some nice weather to help life be easier.
Hello all - quick update regarding dosage. It has been increased from 20 mg to 30 mg daily for 2 weeks then 25mg for 2 weeks then 20 mg for a month, then taper down 2.5 mg per month until the end of the year. Feeling a little better and the headache is not so severe. Any suggestions would be helpful, thanks for reading and here’s to a peaceful weekend in the sunshine ☀️ 🌞
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