Severe headache for past two days: Dear friends, I... - PMRGCAuk

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Severe headache for past two days

Joyful13 profile image
11 Replies

Dear friends,

I have had an increasing severity in headaches the past 2 days. I have GCA/PMR and am presently taking Prednisone 40mg. The pain has been in the temple areas, pain and pressure over left and now right eye. I also have pain in forehead. I have tried strong pain medications, cold wash cloths, peppermint essential oil. Yesterday, I experienced two episodes of severe dizziness after going from sitting to standing. Nothing has completely diminished the pain.

I had lab work done this week and had the lowest sed rate and CRP since August. I was in a traffic accident a week ago, and experienced a mild headache the next couple of days. I am supposed to start the Actemra IV infusion this Thursday, as I have not been able to go below 40mg of Prednisone since June without a severe flare up.

I don't know if this is a flare up or if I have some kind of virus. Any suggestions or advice will be greatly appreciated.

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Joyful13
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11 Replies
PMRpro profile image
PMRproAmbassador

I doubt your "normal" labwork has much to do with anything. You are on a high dose of pred than may affect the readings even though there is still active inflammation locally - though I suspect many doctors wouldn't agree with that.

Were you checked out thoroughly after the accident? Just in case, I think I would would go to the ED - as I've said before, once too often is better than once not enough.

Joyful13 profile image
Joyful13 in reply to PMRpro

Thanks for your comments PMRpro. No, I wasn't checked out after the accident,

I just awakened from a nap! Oh, the wonder of sleep. The pain has finally subsided. If the headache returns with a vengeance, I will definitely seek help today. I am so exhausted from the pain and anxiety that goes with this acute kind of pain.

I will give you an update later today.

PMRpro profile image
PMRproAmbassador in reply to Joyful13

The effects of a whiplash injury can be unpleasantly like the descriptions of some aspects of GCA - been there, done that...

klairv0yant profile image
klairv0yant in reply to PMRpro

Thank you for saying this - my constant confusion with looking at test results without knowing that the prednisone is a causative factor to them being "ok." it's not necessarily masking but it sure is why.

olive2709 profile image
olive2709

A&E vist better safe then sorry got to look after sight

Joyful13 profile image
Joyful13 in reply to olive2709

Olive, I am doing better right now as finally able to get some sleep.

I will seek help if this headache returns. Thanks for your concern.

bowler profile image
bowler

When I'm on a high dose of Pred for a while,[ several weeks ] I get the same headaches as the GCA for which I'm taking the Pred for ! once my inflammatory markers are lower and I start to decrease the headaches get better, however if you'r having headaches after an accident I would get it checked out.

Joyful13 profile image
Joyful13 in reply to bowler

Bowler,

Thanks for sharing your experience. GCA seems to have more mystery symptom wise and knocking me "for a loop" than any illness I have dealt

with. I think the underlying thought of losing my vision is an area that I must release as I begin to obsess about it when I get these severe headaches.

How long have you had the GCA? What dose age of Prednisone are you taking now. I am really hoping to be able to lower the Prednisone slowly once I start the Actemra this week.

I will seek help today if the headaches flare up again this afternoon. Right now, I am resting and even had a nap.

bowler profile image
bowler in reply to Joyful13

Hello joyful,

I was diagnosed with GCA/PMR 16 years ago aged 54, I'm now 71

I have never been off Pred, which no doubt have caused all my other health problems, A few weeks ago I reached 10 mgs on the slow taper the lowest I have been in ages, however just after a urine infection I got another flare so I am now on 25 mgs. I tried Azathioprine and methotrexate quite a few years ago but they gave me bad side effects, Iv'e never been on Actemra

keep resting,

Nap1 profile image
Nap1

I too have been on 40 mg since July and reducing caused a flareup. I am finally on 35/30 after being on 35 for a month. At 35 the CRP was a little elevated but the ESR was normal. In my case the blood numbers go up before the symptoms come. Next week I will take another blood test and see how I am doing on the 35/30 every other day. Taking it very slowly.

This could be the stress of the accident. I do not like the headache. Does your scalp hurt? With the symptoms you might want to consider going up a little on the prednisone. I would if I had your symptoms regardless of what the blood shows. I have GCA and had PMR. The PMR had been in remission for a year I was prednisone free for one year. Hope this helps you a little. Good luck to you.

Joyful13 profile image
Joyful13

Dear Nap1.

Thank you for sharing your experience. The headache is gone today, but I feel very weak. I'm just going to continue resting today as much as possible. There are a lot of viruses going around right now as well.

My rheumatologist sent me an e-mail to hold off reducing the Prednisone until 2 weeks after having the Actemra infusion. I am definitely going to do that.

This is quite a merry go round, isn't it. A lot of trial and error.

I wish you the best in reducing your Prednisone.

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