Feeling odd!

Hi, I was diagnosed in January this year with GCA, am currently on 10mg pred a day, never been on higher than 15mg. Some days I feel ok, head doesn't hurt, don't feel so drained, but for the last week or so I have felt very tired and head has been hurting bit. I work 4 mornings a week (computers, which won't help), so I sometimes have nap in the afternoon. Today I felt fine when got to work, full of energy, then I suddenly felt woozy headed, and had sudden throbs of pain in my head, enough to make me exclaim out loud 'ow'! The throb went off and then I felt slightly nauseous, emotional and still light-headed. Luckily I'm home now and am going to rest. I appreciate that others of you have probably asked this before, but when do you know a phone call to dr would be a good idea. I mean, we all have good days and bad days, yeah? I guess the obvious answer would be 'if you feel the need to ring, then that is the right time'. ! Sorry if I'm rambling, just wondered what others thought...?! <ee>

21 Replies

  • When I get those woozy heads I do find deep breathing very helpful. I am retired now, but when I was at work and it happened, I would go off to the nearest ladies' loo and spend a few minutes doing my breathing exercises plus conscious relaxation.

    I know it's not for everyone, but it might be worth a try.

  • Thanks polkadotcom, appreciate it :-))

  • Hi chockybuttons,

    If you were diagnosed with GCA I'm wondering why you started on 15mg, that seems very low. It's the usual dose for PMR, whereas if you have GCA the starting dose is usually higher. Who diagnosed you, and what tests were done to confirm that diagnosis? The feeling of fatigue and head pain could suggest your dose is not enough. Perhaps you should speak to surgery to check.

  • Hi, my doctor thought it was GCA so booked a blood test, which she said confirmed it. I have type 2 diabetes too, think she trying to balance meds etc, but I have wondered if pred dosage was too low. Have got blood test tomorrow to check GCA situ, will be speaking to doc next week, or I may well do tomorrow if I'm feeling odd again. Will keep all informed. Feel better at mo than did earlier. Thanks for your reply, hope you are doing ok <ee>

  • I am not sure that GCA can be diagnosed just through a blood test. If it could, it may have saved some people's sight. I assume they were talking about ESR and CRP blood test results?

  • Yes, someone else said that about diagnosis. I did also have an MRI scan cos was worried that there was something else possibly going on in my head, but was all ok. Had blood test today, will be chatting with doc to discuss it, thanks <ee>

  • Hi Dorset lady , thinking about my first taper next week , that will be 3 weeks on Pred 20mg, going to 17.5mg, doctor has given me a free hand , I don't think he is that switched on to PMR as he said why not go to 15mg, in your experience do you think 3 weeks is to soon . Apart from the occasional fatigue I feel good even exercising without next day pain . Your thoughts ?

  • Hi Gaz, I'm sure (I hope!) DorsetLady won't mind me butting in whilst she is away from her computer.

    Far better for you to remain at least another week on the 20mg dose, especially as you refer in a later post to "few little pains in my hip and shoulder niggling again". Remember that the steroids aren't curing anything, they are just damping down the inflammation that causes the symptoms.

    Also, better to reduce via 17.5 in the first instance, spending another 3-4 weeks there, rather than leaping straight to 15mg.

    Rejoice in the fact that you are so far responding well to the steroids but, at the same time, remembering as I said earlier, nothing is cured at this stage, so go carefully with the exercise and hopefully you will continue with this good response.

  • Thanks Celtic wise words , appreciated

  • No probs! See answer to Gaz.

  • Hi Gaz ,

    No problem with Celtic's comments, totally agree with her! Have been helping son and family move into new home today, hoping I haven't done too much!

  • Rest day tomorrow then Dorsetlady, I sorted all my garden out today , couple of very large lawns and cleared a rockery still feel good I hope it stays that way .

  • Not much chance of a rest- my services required again tomorrow!

  • Snap! We're helping son, his wife and 3-day-old baby son move into their new home on Sunday! Don't know if I would have been as brave as you though in tackling it during my PMR/GCA days. I do so hope you don't get payback - do take care.

  • So do I! Did sit down every so often and had nice long chat to next door neighbour for 30 mins. Only hangover this am is creaky back, but that's a long existing condition - eons before GCA. Back again today - but it does have a lovely sea view. Might regret later in the week, but then I shall be back alone so can do as little as I like. Will try and take your (and my) advice! Sue

  • Sue, if you have a back problem on top of everything else, do you wear a support girdle of some sort? I have a slippage of my lower spine (spondylolisthesis) and in times of need I just don a gentle supportive panti girdle for a few days and it always does the trick. Would be helpful for you in giving your back some extra support at times such as this. Enjoy the sea view!

  • Hi Celtic,

    No I don't wear any support, bit silly really I suppose, as my husband had the same problem and he did! I just rely on hot and cold patches and gel, but I'll put my sensible head on (a very rare occurrence)! and follow your advice. And hopefully, stop it before it starts.

    Hope your son's move goes well tomorrow - corset to the fore!

  • Thank you, Sue. With any luck the men will do most of the hard work tomorrow whilst I make the most of cuddling our 5 day old first grandchild!

  • Ok. Please let us know how things go.

  • I believe GCA treatment would normally start at 50 or 60 mg of Pred for a week or so before tapering down . I also was having constant headache on 20mg of Pred , after 2weeks that had gone now thankfully , few little pains in my hip and shoulder niggling again but not to bad . Think your blood tests will push the GP in the right direction , but if worried get on the phone , even if it's just for reassurance .

  • Thing is, my head hasn't been too bad generally, until last couple weeks, so even though was on low dose pred, I assumed that things were going ok. If I hadn't been due a blood test, I would have rang to speak to doc, like you say, reassurance is good! Thanks :-)))

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