Think I have GCA

Posted by novabill @novabill, Jun 18 5:51am

I’ve been having pain on the left side temple starting last Monday every night around 9pm. Taking ibuprofen at bedtime in order to sleep. I sent my Rheumy a note thru the portal for guidance but she was off Friday . What alarmed me was the symptoms started at 6pm on Friday and worse. So I went into a google overdrive, long story short, I self medicated with 30mg of prednisone given i take 6mg every morning for PMR. The pain went away within an hour. I have a long standing appt with my Rheumy on Monday so I’ll continue with the 30mg additional prednisone until then. Don’t like taking the addition prednisone but the thought of possible blindness made the decision to self medicate until Monday was easy.

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Hi @novabill, I think I would be alarmed too and probably would have made the same decisions if my PMR was still active and I had some prednisone around to take. It's good that you were able to give your rheumatologist a heads up through your patient portal and that you have an appointment on Monday.

My PMR is in remission but the past week or so I've noticed I have some pain and tenderness in my scalp on the top of my head. I worry about my vision also so I'm going to check with my doctor next week.

Can you let me know if you find out more at your appointment?

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@johnbishop

Hi @novabill, I think I would be alarmed too and probably would have made the same decisions if my PMR was still active and I had some prednisone around to take. It's good that you were able to give your rheumatologist a heads up through your patient portal and that you have an appointment on Monday.

My PMR is in remission but the past week or so I've noticed I have some pain and tenderness in my scalp on the top of my head. I worry about my vision also so I'm going to check with my doctor next week.

Can you let me know if you find out more at your appointment?

Jump to this post

I had two bouts with PMR and then was in remissions
When I quickly developed double vision and tenderness in temples. I immediately got an appointment with my rheumatologist and was given 60 ml of prednisone. Blindness was avoided by quickly taking that large dose of prednisone- GCA was diagnosed. My Dr. prescribed that high dose even before a definitive diagnosis of GCA to prevent vision loss. I was taking prednisone for 1 1/2 yrs. but now take Actemra.

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@johnbishop

Hi @novabill, I think I would be alarmed too and probably would have made the same decisions if my PMR was still active and I had some prednisone around to take. It's good that you were able to give your rheumatologist a heads up through your patient portal and that you have an appointment on Monday.

My PMR is in remission but the past week or so I've noticed I have some pain and tenderness in my scalp on the top of my head. I worry about my vision also so I'm going to check with my doctor next week.

Can you let me know if you find out more at your appointment?

Jump to this post

Hi John,
The scalp tenderness I experienced lasted about two weeks and I didn't feel it unless I touched the top of my head with my fingertips. It might be a good ideas to get your CRP checked too. A doctor told me to immediately go to the emergency room if I had any difficulty seeing.
Do you still take prednisone?
Take care!

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That was a wise move on your part, @novabill.

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@tsc

Hi John,
The scalp tenderness I experienced lasted about two weeks and I didn't feel it unless I touched the top of my head with my fingertips. It might be a good ideas to get your CRP checked too. A doctor told me to immediately go to the emergency room if I had any difficulty seeing.
Do you still take prednisone?
Take care!

Jump to this post

Hi Teri,
Same here, I only feel the scalp tenderness when I touch it. I was going to send my PCP a message through my Mayo patient portal in the morning just to check. I don't have any symptoms of PMR flaring but do have every day stiffness in the morning which I've always had and some eye's watering a lot which I think is due to my CPAP mask leaking air around my eyes every night but not sure. I've been off of prednisone since mid 2018 when my last PMR episode went into remission.
Will let you know what I hear back.

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@johnbishop

Hi Teri,
Same here, I only feel the scalp tenderness when I touch it. I was going to send my PCP a message through my Mayo patient portal in the morning just to check. I don't have any symptoms of PMR flaring but do have every day stiffness in the morning which I've always had and some eye's watering a lot which I think is due to my CPAP mask leaking air around my eyes every night but not sure. I've been off of prednisone since mid 2018 when my last PMR episode went into remission.
Will let you know what I hear back.

Jump to this post

Good luck!

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Saw my Rheumy on Monday…no earth breaking actions…she did the GSA exam, asked the questions and said I did the right thing to start the 30mg/daily of prednisone, no biopsy at this time…we'll taper 10mg each week eventually to 10 mg per day, will see her in a month to recheck blood work and reaction to starting the methotrexate once a week to help with PMR given I'm unable to get below 5 mg daily of prednisone…

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