1. < Polymyalgia Rheumatica (PMR)

PMR progressing to GCA? Broken vessels in eye

Posted by ldingwall88 @ldingwall88, Sep 27, 2022

Hi-- I was diagnosed with PMR in May. I started at 40mg prednisone and was finally able to go down to 30mg at the beginning of September. The past week I've had an increase in PMR pain and planned to call my dr about it. However, this afternoon I noticed a large blood patch covering most of the outer corner of my right eyeball and now I'm concerned about GCA. I looked up the symptoms but that doesn't seem to be one of them--but as you can imagine, I'm in a bit of a panic and although I called my dr, I had to leave a message. Does anyone have any info about this? I've never had anything like this before and am very concerned.

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aspine | @aspine | Oct 1, 2022
In reply to @janiceem "I've had PMR for over 1.5 years and have been on 1 to 2 mg. of..." + (show)
@janiceem

I've had PMR for over 1.5 years and have been on 1 to 2 mg. of Prednisone for months, trying to taper off. During this last attempt to taper off, I started experiencing mild headaches at night behind my eyes. Since I rarely ever have headaches, this concerns me enough to have it evaluated for GCA. I also had some unusual pain last night in my hip joints that seemed to radiate towards my thighs. I haven't had any thigh pains for over a year and my pain, if any, seems confined to my upper arms and occasionally mid back when I try to taper off. BTW, I normally only feel pain when laying down and not when upright for some reason.

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Hi, janiceem, It sounds to me like you might have tapered a bit faster than your body would like. The amount you're on is really low for 1.5 years, but some can get away with it. But not everyone. You might talk to your doctor, but it sounds like you're dealing with prednisone withdrawal symptoms. (Headache, muscle pain, joint pain, and a host of others) Look it up on line. Maybe you can slow it down for a while, perhaps stay at 2mg continuously for a while, and see if that works, or if you have to go up another mg, or 1/2 a mg. until you feel better. Then stay there for a while perhaps. Then taper by 1/2 mg. every month or 2 until you get to the end. Many people, start tapering by 1/4mg when they get to where you are. It give your adrenal glands time to get back up and running, and lessens the occurences of steroid withdrawal. Welcome to the "ADRENAL ZONE"!!

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amfb | @amfb | Oct 4, 2022

I had this happen several time, was taking fish oil once a day when it started, stopped the fish oil and it quit. My Dr. didn't seem to be to concerned.

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vandyms1974 | @vandyms1974 | Oct 5, 2022

I agree the blood vessel issue is probably not related to PMR?GCA. I have experienced them before I was diagnosed with PMR. I would check blood pressure and heart, etc. Pray it gets better.

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vandyms1974 | @vandyms1974 | Oct 5, 2022

I do have a question relative to PMR and prednisone use. My heart rate is very low and my energy level is almost non-existent. Do any of you experience this? Can prednisone impact heart rythm? I suspect it can.

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1 reply
ldingwall88 | @ldingwall88 | Oct 6, 2022
In reply to @vandyms1974 "I do have a question relative to PMR and prednisone use. My heart rate is very..." + (show)
@vandyms1974

I do have a question relative to PMR and prednisone use. My heart rate is very low and my energy level is almost non-existent. Do any of you experience this? Can prednisone impact heart rythm? I suspect it can.

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I am on a high dose of prednisone (for PMR anyway), and I too have *no* energy. My heart rate is slightly low, but not below the average range, though, so I'm not sure of a concession.

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floridabonnie | @floridabonnie | Oct 6, 2022
In reply to @SusanEllen66 "I have GCA. I doubt that what you are experiencing in your eye has to do..." + (show)
@SusanEllen66

I have GCA. I doubt that what you are experiencing in your eye has to do with GCA. For me, I lost my vision temporarily 3 times because the artery feeding the eye was narrowing.
Do you have any other symptoms of GCA ie. painful scalp, jaw pain, headaches?

I am not a doctor. You might want to see an ophthalmologist and get your eye checked.

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Hi, I have had PMR for about a year and a half, I thought it was gone, but 2 weeks after I stopped taking prednisone it came back. That was about 2 months ago. Now I am getting pain in my temples occasionally, and my scalp is tender to the touch at times. It is not happening all the time, just every couple of days. Could this be the way GCA starts? How did you know? I did go back on a low dose of prednisone, 5 mg a day.

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1 reply
ldingwall88 | @ldingwall88 | Oct 9, 2022
In reply to @floridabonnie "Hi, I have had PMR for about a year and a half, I thought it was..." + (show)
@floridabonnie

Hi, I have had PMR for about a year and a half, I thought it was gone, but 2 weeks after I stopped taking prednisone it came back. That was about 2 months ago. Now I am getting pain in my temples occasionally, and my scalp is tender to the touch at times. It is not happening all the time, just every couple of days. Could this be the way GCA starts? How did you know? I did go back on a low dose of prednisone, 5 mg a day.

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Hi, @floridabonnie, what you describe--pain in temples and scalp tenderness--are 2 symptoms of GCA that my eye dr listed when I saw her last week. GCA requires a much higher dose of prednisone to resolve--anywhere from 40-60mg/day--so that's also something you'd need a doctor's guidance on. I think you should get checked out asap. Better safe than sorry, and I do hope you don't have it. Best of luck.

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1 reply
floridabonnie | @floridabonnie | Oct 10, 2022
In reply to @ldingwall88 "Hi, @floridabonnie, what you describe--pain in temples and scalp tenderness--are 2 symptoms of GCA that my..." + (show)
@ldingwall88

Hi, @floridabonnie, what you describe--pain in temples and scalp tenderness--are 2 symptoms of GCA that my eye dr listed when I saw her last week. GCA requires a much higher dose of prednisone to resolve--anywhere from 40-60mg/day--so that's also something you'd need a doctor's guidance on. I think you should get checked out asap. Better safe than sorry, and I do hope you don't have it. Best of luck.

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I was thinking about doing that, but the pain is sporadic, not continual. Does it need to happen more often to be GCA? I am only getting those symptoms for about 10 minutes at a time, about 4 days a week. Not often at all.

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2 replies
ldingwall88 | @ldingwall88 | Oct 10, 2022
In reply to @floridabonnie "I was thinking about doing that, but the pain is sporadic, not continual. Does it need..." + (show)
@floridabonnie

I was thinking about doing that, but the pain is sporadic, not continual. Does it need to happen more often to be GCA? I am only getting those symptoms for about 10 minutes at a time, about 4 days a week. Not often at all.

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I honestly don't know if sporadic symptoms indicate GCA or not. At the very least it's worth calling your GP or eye dr and see what they have to say.

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1 reply
floridabonnie | @floridabonnie | Oct 10, 2022
In reply to @ldingwall88 "I honestly don't know if sporadic symptoms indicate GCA or not. At the very least it's..." + (show)
@ldingwall88

I honestly don't know if sporadic symptoms indicate GCA or not. At the very least it's worth calling your GP or eye dr and see what they have to say.

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Thanks for your input If it continues, I will definitely do that.

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