I’ve had GCA and PMR for almost 2 years now. A few months ago I had a flare (PMR symptoms at 3.5) so my rhumy instructed to go up to 10mg for 2 days, 9mg for 2 days...etc., until I got to 5. Was comfortable there so I stayed on 5 for a couple of weeks and now I’m tapering down to 4.5 using DLady’s dead slow method.
Last few days I’ve had mild headaches, but last night I had pains on one side of head, near the temples and behind eyes. The pains came and went and temples were a little sore. Pain was not severe as I read from people here, but it was “stinging “ and annoying.
The first thing this morning I went to the ophthalmologist and she dilated my eyes, and told me the nerves looked good. She said to maybe go up to 20 but wait until I see a specialist. The specialist now can’t see me right away, so do any of you have suggestions as to what to do? If I do go up to 20, how will I taper down from 20 after this flare?
I’m fine now, headache has gone,just tired from no sleep. Any advice?
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Pamk1949
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Thank you DL for your prompt advice. I took the 20mg yesterday afternoon and finally got an appointment with a neuro-opthamologist with experience in GCA. Hopefully I can taper quickly to a lower dose!
I had GCA and would be screaming down the phone at my Rheumys Secretary for a telephone conversation with him/her. This is your sight - any return of any symptom needs swift action.
Tell him/her exactly what happened to you............you have GCA and two years is not long.
Two years and you are down to 5mg - it took me nearly 4 years to get as low and I had GCA only. No PMR.
I would not even have gone to an ophthalmologist once I had been diagnosed with GCA.
You are absolutely right, should have gone to the ER that night. But, lesson learned by hindsight and all was fine thankfully, as this was my first GCA flare. At least I think it was a flare. 🤔
I thought about taking more prednisone that night, but how much?? I’ve had smooth sailing for 2 years now, maybe though I had this GCA under control.
We are new to the area, and are trying to get into local specialists, who are really booked but somehow this event got me in to see someone tomorrow
Thanks!Jinasc. It’s all good now —found an eye specialist in GCA, they did some more tests, and confirmed everything ok for now! (First headache I’ve had since GCA, so I was reassured). And, also found a knowledgeable doctor! Thanks for thinking of me
Sorry to hear you had a flare... I too have had GCA (and PMR) for two years now. I get the occasional headache behind my eyes and in my temples, but usually it subsides by itself within a day or overnight. I mentioned this to my Rheumy the other day and she was not overly concerned... it's usually when the (bad) headache (temple pain) is accompanied with neck and shoulder pain, feeling of fatigue, jaw ache and that general unwell feeling that concern is perhaps needed. ...but we're all different. One size does not fit all.
Hi there! Yes, I remember you —we got this GCA thing about the same time. Thank you for sharing— this is the first time I’ve experienced something like this. I panicked because we recently moved and I am currently without a doctor knowledgeable with this PMR/GCA.
I did find someone just today, and he reassured me, and explained just what your rheumy told you. So, all is well. I hope you are getting along well now —I certainly enjoyed your posts, and is good to hear from you!
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