GCA??

[Leepeelee]

Hi everyone

I’ve had PMR since January this year, I’m currently taking 6mg prednisone daily. About 10 days ago I tapered from 7mg down to 6mg, I had the usual withdrawal pains but that seemed to go after about a week.

So, for the past couple of days I have been feeling fine. This evening however, I have suddenly developed a throbbing headache. This headache appeared from nowhere, i am aware that GCA can follow PMR but I’m not sure what to do about it. Should I call 111 this evening or wait til the morning and call my GP?

I never get headaches so I am a bit concerned

[SheffieldJane]

Does it respond to over the counter pain killers? I am always reassured when headaches do. It could be part of the whole “short of Cortisol, Adrenal stage”. Certainly mention your new symptom to your doctor. My GCA was spotted via a specialised ultrasound scan. I didn’t really have the classic symptoms like jaw claudication and double vision, sore tongue etc and my headache was not severe. I hope it isn’t GCA for you, it’s very disappointing when it is, but better to be safe than sorry, obviously.

[Leepeelee in reply to SheffieldJane]

No it doesn’t seem to respond to over the counter pain killers, that’s one reason why I am a bit concerned.

It feels like an ache behind my eyes. I do not have any of the other symptoms that you mentioned, ie; jaw pain sore tongue or double vision

It seems to be less painful this morning but it is still there throbbing away

[123-go in reply to Leepeelee]

Ring your GP Leepeelee. You have nothing to lose.

[Alchemy8 in reply to SheffieldJane]

I haven't heard about the sore tongue symptom. What actually made you think you did have GCA?

[SheffieldJane in reply to Alchemy8]

A very experienced and interested Rheumatologist.

My inability to reduce Prednisalone without feeling unwell. Even though I got down to 3 mgs, I felt quite ill and my Adrenals had proved to be capable of working. I did have a constant cottonwool head with some pain. I was lucky, she just kept searching, various tests/ scans to eliminate other conditions. My diagnosis is actually GCA/LVV ( Large vessel Vasculitis) it is not, as far as I am aware, in my temporal arteries.

[Triumph650]

Since dropping from 9mg to 8mg three weeks ago, twice I have had migraine type headaches which paracetamol fixed, the last episode was two days ago and also had hot sweats. This has happened a couple of time now after a dose drop. You tend to think the worse (GCA) when getting headaches. I had an Ultra-Sound when first diagnosed and all clear.

Drink plenty of water, not tea and coffee, I suffer bad constipation and water helps, weight gain is another downer.

[Hidden]

Morning, it could be a stress headache. Unlike you, I'm a very headachy person, so would never know if it was GCA or not. But I did get GCA when I got down to 8 mg for PMR. Just increase a couple of mg for about 4 days like I did....everything settled back down again for me. I'm currently on 10 mg till the end of the month and hoping I don't get a flare up as I decrease. I don't worry about the PMR, only GCA.

Anne

[PMRpro Ambassador]

Now we are at this morning - do call your GP. If you do develop any more symptoms, especially visual ones, and you can't get hold of the GP immediately, then call 111 for advice - but again, if that doesn't result in a very speedy response, call 999.

It IS also possible that it is an adrenal thing - poor adrenal function can also lead to headaches.

[DorsetLady PMRGCAuk volunteer]

Agree with others -contact GP and/or 111, and please let us know outcome...and try not to worry.. Not easy I appreciate, but it will just make it worse.

[Leepeelee in reply to DorsetLady]

Contacted 111 at 7.15 this morning as my headache was still there, I slept ok so I’m was surprised that I still had a headache

111 nurse went through a series of questions and then told me that I should contact my GP.

I’ve called the GP surgery, just waiting for a call back from the doctor.

Headache still throbbing away. I’m hoping this is just a result of my recent taper 😬

[DorsetLady PMRGCAuk volunteer in reply to Leepeelee]

Hopefully the GP will suggest an increase in Pred - for a short while to see if that helps,. If not, might be worth suggesting.

[nuigini in reply to DorsetLady]

DL, is a CGA headache unrelenting or can it come and go over days or weeks?

I started getting migraines again after having no headaches for 6 years while on prednisone. Because they come with significant auras, including a blind spot taking half my field of vision, I do worry at times. Strangely, there is often no pain, just a sore head the following day. In years gone by the pain was significant.

[DorsetLady PMRGCAuk volunteer in reply to nuigini]

I found that before diagnosis my pain was there each day - not coming and going....but that’s not to say it doesn’t affects others differently.

Once on Pred, after the first few weeks they did decrease, until disappearing altogether.

Fortunately I never had a flare - so can’t say how a return headache might feel, but would expect it to increase as due to not enough Pred, the inflammation is allowed to build up again.

As you imply I think yours sound more like migraines than GCA....but it might be wise to monitor for trigger points and/or any other GCA symptoms.

[Rokerman]

Agree with the others - this is not something you should put off/hope for the best.....

What was your starting dose, by the way? It sounds like a rather quick taper.

[Leepeelee in reply to Rokerman]

I started at 20mg in January, I am now down to 6mg . It has been a rocky road but I was sitting quite comfortably at 7mg before the latest taper.

Just seen my doctor, he took k my blood pressure which was ok, so he prescribed Atenolol tablets 50mg and told me to take one a day ?

[PMRpro Ambassador in reply to Leepeelee]

Er - why give you atenolol if your BP was OK?

[Leepeelee in reply to PMRpro]

I don’t know , he said it would prevent headaches

[PMRpro Ambassador in reply to Leepeelee]

Only if the headache was due to raised BP - which it obviously wasn't. And one of the common side effects of atenolol is headache ...

Sometimes I can only wonder what they are thinking

[Rokerman in reply to PMRpro]

Atenolol may prevent occlusion of the blood vessels by making them more flexible - so I guess a safety-first measure?

[PMRpro Ambassador in reply to Rokerman]

See the rest of the discussion in this thread. I'm quite intrigued how they came to the conclusion though!

[piglette in reply to Leepeelee]

Beta blockers are used for migraines, they are apparently proven to be an effective preventative migraine treatment, so I assume your doctor thinks you have migraine.

[PMRpro Ambassador in reply to piglette]

But in that case, why not use the betablockers that are known to prevent migraine? (metoprolol and propanolol).

[piglette in reply to PMRpro]

I must admit, I thought that.

[PMRpro Ambassador in reply to piglette]

And what does taking a betablocker with normal BP do to the BP?

[piglette in reply to PMRpro]

That is true.

[Leepeelee in reply to piglette]

I’ll speak to the doctor again

[tangocharlie in reply to Leepeelee]

WTF?! You need to make sure you say you wonder if it could be GCA, not all doctors know about it and 111 certainly didn't when I had a scare a year ago.

[nuigini]

Leepeelee, I hope you get this resolved quickly and easily, and it's not GCA! There are always so many variables in trying to figure out what's going on. Do I need more prednisone? Is it my adrenals? is it a side effect of other medication? Does my physician know what s/he's talking about?

[Amkoffee]

An extreme headache one like you've never had before could be a sign of a stroke. A stroke is an emergency situation.

[Leepeelee in reply to Amkoffee]

The headache seemed to have gone when I woke up this morning but it has just come back.

I contacted the GP, he has said that I should give it another day or 2 as it is still fairly close to the recent taper of preds. If the headache is still there after that then he said that I should go up a notch on the preds.

I must say, I am a little concerned! I asked if he could test me for GCA, he said that the only way to do this is via a biopsy from the temple?? which he doesn’t think is necessary at this stage as the only symptom that I have is a headache.

[Angel20]

My husband has GCA when prednisone is reduced and the headaches return, your dosage is too low, this is a warning that you should be on slightly higher prednisole which means you yourself can increase the dosage until you speak with your consultant. There is no magical number of prednisole everyone is different. My husband has now been taking Methotrexate and prednisole. Methtrexate once its starts working prednisole can be reduced gradually.

[Leepeelee]

Well, just to update you all on how my things are now.

Finally seem to be shaking off the throbbing headache, the last 24hours have been so much better, there is still a very faint throb that I can feel but only when I'm looking for it, most definitely not the same kind of pain that I was feeling all week. Fingers crossed that it will disappear all together over the coming days.

I have an appointment with my rheumy on 2nd December so hopefully she may be able to shed some light. My GP hasn't been much help to be honest!

I think that my recent headache must have been something to do with the latest taper which was 2 weeks ago now.

Thanks for all of your comments and advise, it really does help having people to speak to who have PMR . This is such a great site!

[PMRpro Ambassador in reply to Leepeelee]

Poor adrenal function can also cause headache - and maybe it is catching up after the reduction.