I have been on this webpage the last few days talking with some people but have not put up an formal posting.
I have not been officially diagnosed as of yet - but I feel I have GCA. It started 2 weeks ago with odd headaches I’ve never had before, right temple throbbing, left eye floaters, vision problems and weakness on my upper left arm. I wrote it all off to other things except that temple pain - that’s what got me to my doctors office. She started me on a quick 11 day regime of prednisone and sent me for blood work and a MRI - which I couldn’t get in until this coming Saturday. From reading your posts - I feel the prednisone amount is not sufficient and too quick. I started at 60 mg for 2 days, 40mg for 2 days, 20mg for 5 days, then 10mg for 2 days. Today I started the 20mg and my eye pain is back again - after having subsided the last 3 days, that tells me I need to stay at 40 or 30mg a little longer? Also, won’t taking the prednisone not give a clear picture for the MRI? I see the ophthalmologist Wed. and the rheumatologist in June. Should I call my doctor Tuesday to increase the prednisone and how would I work it back to possibly 30mg? I also have my blood work but don’t know what I’m looking for. Any assistance would be greatly appreciated!!! Thank you!
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Kern1410
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Hello, I think you need to go to the emergency room. Here’s why - Diagnosis of GCA can be tricky. The bind is that yes, without Pred it does increase the chances of scans and biopsies showing something up. But, to not have Pred risks loss of sight and if it goes on too long, stroke. I’m a case in point where my symptoms had to be treated with 60mg Pred but by the time I had my investigations it was too late really. Blood tests for inflammatory markers should be normal on Pred but for a bunch of us, they never go above the normal range at any point. I know you’re already on Pred which is great but clearly not enough.
If you do have GCA nobody has the luxury of waiting. In the U.K. the protocol should be that it is treated like a medical emergency. So your doc started well, but I’m not sure if you were given any sort of safety net for return of symptoms while reducing. Again, to illustrate, I called 111 over a weekend with my history, and they got me to go to the out of hours GP immediately. After 10 mins the GP sent me to A&E after a call. They were waiting for me (no queues for me!) and within 30 mins I was dosed up. The advice here is to go to straight to A&E because the loss of sight, if you do have GCA can be rapid. In my case I had relief of symptoms in 2 hours and my sight bounced back (apart from the Pred induced squiffiness) so they had to work with that and the symptom history in the absence of all other investigations being normal. The other thing to bear in mind with GCA is if it affects arteries to the head or neck that don’t affect the optic nerve, the opthalmologist won’t see a problem. I despair when people say, “the ophthalmologist says I don’t have GCA because my eyes are ok”. Even with my sight shutting down, they couldn’t see anything though I had been on Pred for 4 hours, my eyesight was back, and their exam was very basic.
It’s better to feel a bit silly than be sitting at home waiting politely but in serious trouble. Keep in touch.
You don't have to work it back - you just take the dose you need. It is only going down that needs a more gentle approach.
If the pain has returned after going at the high doses that is a fair indication that it could be GCA and as Snazzy says - off to the ED quickly if you don't have enough to take a higher dose until tomorrow. There is little I can add to her post - optometry testing can show if there has been a longer term problem - not that you definitely don't have GCA. The only answer is to take high dose pred to reduce the risk of sight loss. Whether it affects the MRI or not is immaterial - there is no justification for delaying appropriate medication for GCA.
Your doctor did well - just didn't think of the weekend being in the way, she should have left the high dose in place until Monday. You are in the US - why is Monday a problem? You need a doctor NOW, not even tomorrow really.
Monday - here in the US - is Memorial Day! Everything is closed. We do have Urgent Care and/or the ER at the hospital. I’ll see what I can do. Thanks for the input! But I’m kinda freaking out now! I’ve sent out info to what I possibly have but my friends and family don’t see the seriousness of it - especially since it’s not officially diagnosed.
Also a little background info - I’m only 48, female, have a 12 yr old daughter, have HPB and work full-time. This is coming at the wrong time! 😓
I’ve only had the weakness in the left upper arm - but nothing else. No problems getting up in the morning, no joint pain. When I’m stressed - it all goes into my shoulders and neck - but I’ve had that for years - but it has disappeared since the prednisone- but has popped back up today! Ugh! Go figure! I wrote another post in the thread with info from my urgent care visit. I’m hoping you can see it - still trying to navigate this site!! Thanks for your help and concern! I appreciate it!! 🌻
Oh yes - I see everything and read it! And sometimes reply ...
Out of interest - have you had your BP checked in BOTH arms? Is your left hand colder than the right?
Preparing for mri then waiting weeks for appts vs Possible GCA when symptoms responded well to 60mg of pred? No contest treat as if GCA until Dr has FULLY explained what diagnostic protocol they are trying to follow. It could well be something else but it's not worth losing sight by sitting waiting for Dr to get MRI report etc. You need them to treat now.
Kern I would not be waiting. The first few months after I got the dx of PMR I had blurry vision, headache etc and immediately went to the walk in clinic near me. They said vision problems not the right sort, these things always happen on a weekend! I went straight to the optician the next day and saw opthalmologist who said everything looked healthy. Had I had the full info that I have now, I would have gone straight to the emergency room. The worst they can do is say you are ok....the best is save your sight. I know you were worried and fearful don't let that paralyse you. Use it to push for your proper care. 🌻
Everyone - went to Urgent Care. Doctor was great - said everyone is different and that the tapering might be too much for me - so started me on a new regime starting me back at 60mg for 3 days, 40 mg for 3 days, 20mg for 3 days, 10mg for 3 days. Said that the MRI will probably
come up as normal, as well as, the eye doctor - so moving forward are we just going off of the outcome of using the prednisone?
I have a few simple questions:
When is the best time to take the prednisone?
I initially took it at night because that’s when I picked up the first prescription.
I have encountered night sweats, been jittery but tired. Anything else I need to know? I haven’t been hungry - but have been drinking a lot of water - increased bathroom visits. What about physical activity? Work? I have an office job so not much physical exertion! 😏
Good - that is better under the circumstances. Not ideal but hey ho. It still isn't the right approach for GCA but gets you safely to a stage where you can see the first doctor. It isn;t the taper that is the problem but the illness.
Pred should normally taken all at once in the morning - less likely to interfere with your sleep because the pred is out of your body by night, the effect persists.
YOu may find work too much - you will have to see ho it goes.
Try to take it easy as much as possible. High dose Pred tends to make you go at 100 miles per hour and feel as sharp as a tack. But it can also cloud judgement and make you fuzzy headed too. I used to take mine in the evening so I could sleep through and cope with the wobblies I used to get. Not everyone gets that though so a morning dose is fine.
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