Since being diagnosed with PMR 4 months ago I have been reducing my dosage of Prednisolone from 30mg to 15mg. Over the last month I have had daily headaches which my GP has put down to stiff neck muscles and prescribed Amitriptyline. This has not provided relief and I am now waking up each day with severe aching on the right side of my head. It starts at about 4.30 each morning and gradually goes during the day. I am reluctant to go back to my GP as I'm beginning to feel a bit of a hypocondriac but having returned gradually to work, this pain is dragging me down again. Could it be GCA?

10 Replies

  • Hi bump35,

    From my personal experience would say that your pains could well be GCA, unfortunately. However, as it subsides during the day it may not be. You mention the GP reckons it's from stiff neck muscles, do they hurt as well, and if so, is it both sides or just the same side as headache? Is your scalp tender to touch, or difficult to comb hair? Do you have difficulty in eating, swallowing etc?

    As it's the weekend, isn't it always, you have a couple of options, raise your Pred to 20mg (take extra 5mgs now) and/or go to A&E for advice. If you take increased Pred for 2 or 3 days it should halt any increased inflammation, the pain should go as well. then speak to your surgery on Monday explaining what you've done, and get GPs opinion on way forward.

    If it's GCA then the Amitriptyline won't touch it, been there......

    Good luck, and keep us upto date with things please.

  • Hi DorsetLady

    Yes the muscles at the side of my head are painful to touch but only on the side that hurts and my head is tender. I don't have troubel swallowing but sneezing is painful. I will try and get an appointment thanks for your response and I will let you know.

  • It is difficult to say - but the fact it fades during the day after a decent dose of pred and is worst at 4.30am would suggest it could be related to the PMR and that could mean GCA. Particularly since the pain is not relieved with amitriptyline - they seem to be handing that out like sweeties these days too! It sounds nuts - but have you tried changing your pillow?

    Can you see another GP in your practice? You could insist on a referral to a rheumatologist though that will also take some time. You could also go to an optician and ask for an examination of the back of your eye to see if there is any sign of poor blood supply to the optic nerve though that isn't 100% conclusive either.

    Do you have any other problems? Jaw pain when chewing? Scalp discomfort? You could ask your GP why he started you on such a high dose if he is so confident this is just PMR - the normal starting dose for PMR is 15mg and 30 mg is more usual for suspected GCA. If it continues and none of the doctors in your practice will listen then A&E is a final resort - and the place to head for if you get any visual symptoms or the headache gets worse.

  • Hi

    I have tried chaning pillows when I was given the sweeties but it may no difference. I have just had an eye test and it did not pick anything up.

    Also have recently had a blood test which showed my levels were normal at 6 from 60 when first diagnosed. I was originally prescribed 15mg but it didn't touch the condition and only responded when I went up to 30mgs. My scalp is tender on the side that's affected but no trouble chewing only painful when sneezing.

    I think I had better head back from the GP ......... thanks for responding I needed a sense check.

  • Whatever it is - and it COULD be cluster headaches or even just the pred but I'd expect it to be worse AFTER taking it rather than before if it were that - it does need looking into, especially if you say your scalp is sore on the same side. It all depends which artery is affected.

    When they did the eye test did they put drops in your eyes to examine the retina? Otherwise they'd not find much.

    I know what you mean - I spent 5 years trying to persuade a GP there was SOMETHING not right. But my bloods were stubbornly normal so eventually I just gave up.

  • I can identify with your symptoms since a similar situation has occurred to me. A couple of weeks ago I started to wake in the night with headaches, odd shooting pains on head, neck & shoulder pain, felt I was clenching my jaw at night and consequential discomfort with chewing food. I went to one Dr, a 2nd Dr, my dentist, had blood tests, saw my Rheumatologist who advised upping Pred. 9mg to 10mg. I took Paracetemol when I woke. My symptoms eased during the day. Like you I ask myself if it is GCA. My ESR and CRP tests last week were raised. The headaches and stiff neck have slowly improved. I could not go to work and felt shattered. I have further blood tests next week and a CT scan. Don't feel a hypochondriac. We don't choose to feel like this. The health experts are there to get us better. Sometimes it takes longer than we'd like.

  • Thanks Parijm. I am going to try and get an appointment tomorrow although I guss the only route if it could be GCA is to take more pred .......

  • Sorry, but I do not trust MD's because they are slaves to big Pharma who does not want to cure or prevent anything because it cuts in to their 500+

    $ billion drug business. It is amazing that in all these years they do not know what causes PMR_GCA and they do not have a cure with the billions spent on research, or are they doing any research? I think not .Think about it, if all diseases were curable we would not need to take drugs and where would that leave them?.

  • I would definitely keep my eye on it. My last doctor told me that GCA and PMR are basically the same disease. It took me three years to get that slant on it. So given that info....it could be that the inflammation has moved to your temporal area also. Mine moved the other way....started in the temporal arteries and then moved to my girdle area after a flare. Talk about your life "going south" :)

  • fellow headache sufferer. mine is in my Eye. i call it Eyegrain. usually happens when I taper down.

    I do back to lab and sure enough sed. rate it up.

    top of head also tender.

    i was just referred to rheumatologist will see him later this month.

    good luck.

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