Hi, I’m new here - only found this forum today! I have GCA which was diagnosed through an extremely tender, swollen temple, which responded very well to steroid treatment and has given me no trouble for months.
A few days ago I had a very emotional evening and cried a lot. The following morning my temple was swollen and painful again. It has come and gone for the last couple of days.
Is this a known issue? I just wondered if there’s a connection between the pressure created by crying and GCA.
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Octi
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My tendency is definitely emotionally triggered. Chronic illness and all the limitations, exhaustion, moods caused by Prednisolone, sensitivity, seem to be the triggers. Perhaps you should consult your Rheumatologist yours maybe heralding a flare. Stress can lead to a flaring of symptoms. Your stress may have been expressed by crying.
Welcome to this helpful, informative and supportive site!
Hello and welcome! Could you add some detail about when you were diagnosed and what dose you’re on etc? It really helps those giving advice and could be relevant to what you’ve just experienced . If you put it in the profile it’ll avoid you feeling like a cracked record later on if you have more questions. Do you clench your teeth at night?
Just be mindful that from 8mg on you start to come into the dosing area that requires the adrenal glands to make up the shortfall. While I think it would be wise to just hang on a bit until you know whether this is a flare or not, do some preparatory reading of the piece about adrenal function in the FAQ’s. If the discomfort doesn’t settle soon, a bit of a dose rise might be needed so head off a big flare and going much higher. Also, make sure you rest as much as you can.
Thanks very much for the advice, SnazzyD. I know nothing about adrenal function, so I'll read up on that. Unfortunately rest isn't an option as I have a physically and mentally demanding job.
See how you go. The experience of most is that stress and demanding jobs aren’t very compatible with autoimmune conditions. You may find your reduction speed has to be slower to avoid a flare and when you get into the adrenal zone you may or may not struggle, but it can be tough going and you can’t hurry that bit. However, we’re all different. What I would advise though is have a plan B which may be reducing workload or the dreaded. It’s so much better than being on the back foot because the body has had its own plans if it can’t cope, or is deaf to, “I don’t have time (or money) for this”. Most people here have a back story of unrelenting stress before diagnosis.
Thank you. I have been job hunting, but no luck so far. I’d love to reduce my hours, but can’t afford to. I was self employed pre-Covid, but that became unsustainable and I had to find employment quickly. I’m now looking for something less physically demanding.
The Dalai Lama is supposed to have said that man is very strange because "he sacrifices his health in order to make money.Then he sacrifices money to recuperate his health.
And then he is so anxious about the future that he does not enjoy the present;
the result being that he does not live in the present or the future;
he lives as if he is never going to die, and then dies having never really lived."
Thank you for replying. Yes, I did have a biopsy done, which was inconclusive. I am pretty stressed by a lot of things at the moment, so I guess I need to tackle that.
Which no doubt is easier said than done! I agree with Snazzy though - I think you may be getting to too low a dose for now, especially with stress in the mix. The tissue around the biopsy may have suffered from the tears as well - crying always leaves me with some puffiness and in combo with the scar tissue that is inevitable that may have upset the applecart a bit.
Any kind of stress, Pred withdrawal and illness made my biopsy scar hurt for a good 18 months. Sometimes we’ll over 4 years later I reminds me it’s there.
Hi Octi - sorting out stress and its causes was quite stressful in itself, I found! It takes a while to get to even ground and relax enough to begin to manage yr condition. U don't say how long ago u were diagnosed or how fast u tapered your prenisolone dose down? Maybe too fast - which lets the inflammation build up again? Re the crying - I found myself welling up at anything - you wouldnt believe some of the things that set me off!! It went away when my dose was right and now I’m as hard-hearted as ever I was. 😉 let us know a bit more and people will give u good advice and support. Good luck. Chin up.
Hi Carriemetz, and thank you for your kind words. I was diagnosed in June and started on a 40mg dose. So the meds cause emotional issues? Great! Add that to my menopausal age and all the stuff that's going on in my world at the moment and it's no wonder I'm a bit of an emotional wreck just now! I'm so glad I found this forum, I feel I've learned a lot in just a few hours .🙂
“So the meds cause emotional issues? Great”…CAN cause emotional issues, but like all the other side effects doesn’t mean everyone is going to affected.
I wasn’t despite starting at 80mg - and with every reason to be emotional!
Hi Octi - 40 down to 8 in abt 20 weeks is very fast. It seems u may have hit your particular buffers as far as steroid reduction goes for the moment? And for u it’s expressed as weepiness as Jane suggests? Not surprising as u clearly have a busy and demanding life. It’s probably a good idea to ring rheumatology or yr gp - whoever’s managing yr steroid regime - and ask if u shd be increasing yr dose slightly for a spell until u’re on a more even keel again? Or at the very least, stop reducing for a couple of months. Also, give yourself what rest and care u can. Don't cook dinner, get a takeaway, have a doze in the evening etc etc Change yr life in small ways if u can’t change it in big (and sometimes we just can’t change big things bcos everything on our plate at any particular time is important) Good luck, keep in touch.
Hi Octi..I too have GCA diagnosed in June and was on 40. I don't know how you have got to 8mg now, but with a stressful job and other stuff I think you are flaring. I'm unable to go under 22.5 and flared so have had to up the dose back to 30mg. Good luck and crying can increase the pressure in the head and probably the blood supply so may make the temples swell as a result. This disease keeps us all guessing every day.
a little help from this forum as my Gp is still away, response was a week and a half too late and my rheumy still hasn't sent his report from our consultation of the 20th sept. let alone reply to my email or bothered to read my daily progress diary which he thought unimportant.
Hi Octi. Welcome to this wonderful site.You will receive lots of helpful information and most importantly the support of others going through similar experiences.
I think that stress can definitely cause inflammation to increase. I too was in a highly stressful and demanding job and working long hours when I became unwell. Almost two years after diagnosis of GCA, I have retired on medical grounds.
As others have said, it would be advisable to seek medical advice in case you are experiencing a flare.
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