On Prednisone for GCA but when is a headache a 'GCA' headache?

[rozzzy]

Having been on pred for the past few weeks. My concern is knowing when a headache is due to the GCA or whether it is just a normal headache unrelated? When you have a so called 'flare up' is it the pounding type of headache always? How do we know if we have a 'safe' headache or a 'dangerous' one??

[DorsetLady PMRGCAuk volunteer]

Hi rozzzy,

Wish I could give you a definitive answer but afraid I can't.

From my own experience I never had a relapse, but then I did start at 80mg, reducing to 60mg after 2 weeks which in essence took away every pain known to mankind. Or at least it felt like it.

However, in most relapses people say they get a return of the same kind of pain, whether that be headaches or muscular pains that they had prior to diagnosis.

PMRpro and I discussed at some length your starting dose of 25mg not being adequate for the control of GCA, so that may be where the problem lies. Plus you said in your first post you still had a 'sort of headache'.

If you're not sure, then I think you need to go back to GP, get him to fast track you to see a Rheumatologist, and in the interim discuss the requirement to increase your dose.

There is no point in being on too low a dose of Pred with it's associated side effects if you are still in pain. You need to be on the correct (but lowest) dose to give you pain relief. You may find that an increase of 10mg or even 5mg may do the trick, but you need to discuss with doctor.

A 'normal' headache will respond to OTC painkillers, GCA won't!

Take care.

[lesley2015]

Hi Rozzzy

I am in my fourth flair, each I believe caused by stress except this last one which was a rough hairdresser massaging my temples!

I think it differs for all, but usually I become stiff with the PMR first then tenderness in my temples, so that even laying down at night is uncomfortable, almost like lying on pebbles and a tight headache.

Paracetamol doesn't touch it so I am sure you will know. I have always waited a few days until I 'know' - and now I can understand and feel the difference.

Hopefully, you will not have a flare.

Best wishes.

[Joyful13]

I have found it difficult to always know when I am having a GCA flare versus a migraine. I have had atypical hemiplegic migraines for years, where I have symptoms like a stroke, with eyelid closing, tremors, difficulty speaking and walking. The one time that I really felt like I had a GCA flare, the headache was so severe, and my head felt as if it were exploding. I did not have the stroke symptoms, and ended up in the ER. After they were sure I didn't have meningitis, they gave me IV DIlaudid for the pain and increased my Prednisone back to 60mg for a short time. Each person seems to have varying symptoms. I always have jaw pain, and usually temple pain with the GCA flares. I hope you feel better soon.

[Hidden]

Yes I often wonder about headaches. I have had a right side one for most of my adult life.. So I feel the slight niggling of a headache all the time.

[DevonMichael]

You are not alone with this concern! Although I never had a real headache until my GCA one, I raised the same question with a speaker rheumatologist at an October support group meeting and there is no definitive answer. I think one needs to be mindful of the associated GCA symptoms including tenderness to the scalp, jaw pain and any sign of vision disturbance before pressing the panic button. Good luck!

[rozzzy]

Thanks for all your replies guys! Its all so tricky! Since being diagnosed I just feel a very slight pressure around my head, no real pain just a 'heady' feeling and not quite firing on all cylinders but I guess that could be the pred! I didn't have any jaw pain or visual issues on diagnosis. Just the blinding headache, tender temple and tender neck, all on the right hand side and obviously the elevated blood test levels.

[Anne_gca in reply to rozzzy]

Hi rozzzy,

Like you I have gca, not pmr, diagnosed March 16. I had an acute flare in September and the symptoms were very much like the initial ones but not so severe. I.e. Pain in right temple and behind my eye that became really severe. Only by going back up to 60mg of pred (under medical advice!) did the pain subside. I have never suffered from migraines but your description of " heady feeling and not firing on all cylinders " describes me most, but not all, of the time. Have you had your bloods rechecked whilst you have those symptoms.? My Gp has agreed to check mine every 4 weeks since my flare as fir me my crp levels seem to rise significantly.

[rozzzy]

Well I have an update in progress!! My doctor is going to refer me to the Vaculitis Research Centre at Addenbrookes and also refer me to a rheumatologist 'hopefully'. Eye test being carried out next week with all the optic nerve scans etc, so I feel a bit more relaxed that I will have people to talk to and hopefully get a proper diagnosis.

[granny-b in reply to rozzzy]

Firstly thanks Rozzzy for asking a question I had been wondering about for a while.

I had the same group of pain symptoms and blood results as you. I have a sensitive scalp all the time but only since my biopsy (positive). So I think the trigger for me would be a bad headache that doesn't clear with paracetamol. Then I'll be calling for help.

Wow. Good doctor referring you for the specialist help. Remember the steroids can remove the symptoms and so hinder confirmation of the diagnosis.

Best wishes for your specialist appointments. Let us know how you get on. xxx

[rozzzy in reply to granny-b]

Hi Granny-b - Yes I am glad that I have everything in motion as it were. Haven't got dates through yet, but feeling more positive now I know that I am being seen!! I haven't had to resort to painkillers for my head, maybe I should just to see if the 'heady' feeling goes? I seem to be taking so many pills! I am rattling!! xxx

[SusanEleven]

This was helpful to read! I have PMR. I had a brutal headache recently that sent me to emergency. First time I ever cried from pain. I had my usual night-before migraine symptoms (blurry vision and vomiting) and woke up with the headache. Excedrin Migraine pills did nothing and they usually make my migraine bearable within a short time. Fearful it was a GCA symptom or something else horrible my primary said go to emergency NOW. Emergency staff did a CT scan, no probs except sinusitis. Gave me IV fluids as I was dehydrated from vomiting (fluids made me feel better within 30 minutes). Headache finally subsided after ten hours. Saw my rheum doc the next day. I'd had a negative temporal biopsy 10 months ago because she was suspicious of my headaches. She said we'd monitor symptoms because the potential for GCA is always there but we both feel that it was more likely a horrible migraine plus my sinus issues. It coincided with a multi-day rainstorm moving in and weather changes are my migraine trigger. I am convinced to finally see a neurologist though to see if I can stop being a human barometer.

[patsy699]

I know that vomiting is associated with migraine headaches but I never heard of it being with the GCA headaches , but I don't know much about the latter, but truly hope you have not got it. Patsy69

[rozzzy]

Well today I went and had my eyes tested, all the scans and optic nerve photographs done, glaucoma tests. There was no damage when comparing to scans I had been having since 2013, but being referred to the hospital for a more in depth look at it all. Plus I now have an appointment on Saturday with the rheumatologist. Still waiting for my appointment for the Cambridge Research Centre with Dr David Jayne. I feel now that I have everything being looked into at last. Have no idea if I have symptoms from the condition or symptoms from all the pills!! how can you tell whats what??? too tricky!!

[missmylefteye]

The headache i get that i think may be gca (though i do not have any clear diagnosis yet), is a persistent, solid pain mainly in my left temple. i had my first migraine at 4yrs old, when i began getting this headache in last few years, it did not feel at all like a migraine. I tried migraine med,but they never helped. it felt definitively different. also, for me, my migraines can be awful day long pain, but almost always feel benign (not physically harmful), while these 'gca' headaches feel like there is risk of physical harm, limitation, the way i would think a stroke or heart attack might feel. basically, i feel like i need to stop what i am doing & rest. also, the pain includes pulsating in my temple, over my ear, & in my neck.