Headache

[Pmrat60]

i was diagnosed with PMR on May 26, 2019 and started in prednisone. Currently at 7.5mg/day. I had left TKR on January 24, 2020. I’ve developed pretty severe headaches the last few days, along with blurred vision. Headaches started early AM while sleeping, and resolved once up and around, (as up and around as you get 10 days after knee replacement!). Last night I developed a Headache centered on my right eye/temple that will just not resolve.

Any thoughts of GCA? Is there a test that I can have to confirm? I do see a rheumatologist on a regular basis, but not scheduled for a follow up for another month. Thanks for any advise.

[Yellowbluebell]

Any visual disturbances should always be investigated asap. It may be something all together different causing the headache but you need to protect your vision. Please let us know how you get on. YBB

[ballyboy]

I have got a sharp pain in my head it does not last but is very very bad when it comes .can not see my doctor for 2 weeks.

[DorsetLady PMRGCAuk volunteer]

GCA pains are usually bilateral, but as stated any new headache or sight issues should be investigated.

You may well find that your inflammation markers are higher which may be an indication of flaring PMR or the onset of GCA.

However they may also be raised following the TKR - a common occurrence following that replacement in particular - as I can confirm! Mine went v. high following mine - certainly not GCA as I’m in remission - but it had the doctor throwing a fit at the time!

If you can’t see Rheumy can you see your own GP?

[RecentPMRdiag]

Hi PMRat60,

Please go to A&E asap to get the headache and eye pain investigated.

The 'gold standard test' for GCA is a Temporal Artery Biopsy'.

A&E will refer you to Ophthalmology to check whether any damage has been done, increase your Pred dosing until you have either a biopsy or ultrasound.

You can call your Rheumatologist from A&E and keep them posted, and bring your appointment forward.

[Marijo1951 in reply to RecentPMRdiag]

I agree with this. Go to A&E at the hospital where you see the rheumatologist, give your hospital number and ask to see somebody from rheumatology. If the receptionist hears 'headache' and tells you to go home and take paracetamol, explain you have PMR which means you are susceptible to GCA which can cause blindness if untreated.

[PMRpro Ambassador in reply to RecentPMRdiag]

PMRat60 has been on pred for some months and is in the USA where the system is different. The TAB may be the gold standard but it still gives false negatives and especially in patients who have been on pred for any length of time.

[RecentPMRdiag in reply to PMRpro]

Rec’d and understood. I was suggesting the TAB would help with the ‘balance of probabilities.

[PMRpro Ambassador in reply to RecentPMRdiag]

I'm not convinced - if it is positive then that is wonderful and no-one should be able to argue (but they still do on occasions) but once a patient has been on pred for any length of time the likelhood of that happening is reduced - and a negative result does not mean you don't have GCA. It means they didn't find what they were looking for and the diagnosis must be based on the clinical signs alone.

[RecentPMRdiag in reply to PMRpro]

Agreed - that was why I read the latest Mackie/Brouwer paper. I read it because I’m in for my TAB this afternoon - managing my own expectations

[PMRpro Ambassador]

I think you need to see your doctor as an emergency - and if in the meantime you develop any more visual symptoms don't wait for an appointment but go to A&E/the ED.

I know DorsetLady has said the GCA pain is usually bilateral but there is considerable medical literature saying unilateral pain is also possible, especially in the early days.

It sounds to me as if the pain may be developing when the morning dose of inflammatory substances is shed in the body and then easing as the dose of pred you are taking starts to take effect. It isn't enough to protect your sight if it is GCA and it progesses so please do get it checked out.

If you need an emergency appointment at the GP then say so - they MUST make sure someone sees you promptly. 2 weeks may be fine for a routine matter - but NOT for emergencies. And potential GCA is a medical emergency - just like a heart attack or stroke. Would you be prepared to wait for 2 weeks if you had central chest pain?????

[Chrisellie in reply to PMRpro]

Yes my GCA pain was mainly on the left of my head.

[Hidden]

I would see your doctor soon as just to check don't wait till appointment

[Pmrat60]

Thank You for all your advice. I will call my GP today and get it looked at.

[Darcy2000]

Increase CRP and SED RATESwill probably sound the GCA alarm but not always ... I would have blood work done ASAP you can’t wait with GCA

[Pmrat60]

Again thanks for all the advise. I saw my Ophthamologist yesterday and all clear. No evidence of GCA.

Living in the USA and having direct access to the proper medical professionals is really helpful.

I love this forum.