hello! Thanks for the forum, I read regularly & have learned lots. I care for my 82 yo mum with GCA & dementia. She doesn’t understand her GCA so have been trying to become knowledgeable. She’s done really well since diagnosis last Oct following 8 weeks of weakness, lack of appetite. No headaches/visual problems. She has the fatigue but I let her sleep for 12 hrs a day like a baby and she is then ok when she’s awake 😀😀
tapering gone well & we have reached 7mg with no flares. Last few tapers tho she has dizziness for a few days & has almost fallen had I not been there to stop it. Obviously keen to minimise this risk going forward.
She was discharged from rheumatologist as she moved to live with me but they said to drop .5mg from this stage which I will do. But my questions are that would one of ur slower tapers reduce the chance of the dizziness and / or splitting the dose to have some just b4 bed??
I have GP appt Monday to discuss and want to be clear in my mind what I am asking permission to do.
At her age I’m not too bothered about long term steroid usage but maximising her quality of life whilst her dementia is not too debilitating.
thankyou 😀
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RT18
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Definitely a really slow careful taper of not more than 0.5mgs at a time. Take a look at FAQs for detailed information. Your mum is probably experiencing her Adrenal system wobbling back into life after being switched off by Pred. This can lead to dizziness and other uncomfortable feelings. This process is greatly assisted by time. Once she gets below 5 mgs it maybe wise to arrange for a morning cortisol test via your GP. This will indicate whether your mum’s Adrenals have the ability to work on their own. She is lucky to have you! 🌼
and a slower taper will help those as well as her illness…and definitely 0.5mg from now on- copy of examples - just choose whatever is easier for you to manage on her behalf -
At her age return of adrenal function could well be slow - and to be honest I do know doctors who would now not be worried about the speed of reduction - or lack of it. I'd hang around at the 7 for a bit longer and see if she settles down.
However - to get from a GCA starting dose in October to now is very fast. How was she diagnosed if she had no visual symptoms? GCA can also affect the ears - and that can cause dizziness and balance problems so I think it is reasonable to wonder about that.
She was diagnosed by ultrasound - I think GCA triggered by shingles in August. Inflammatory markers high for 2 months prior to pred. Massive improvement within days of pred starting.
The dizziness seems to come 3-4 days following taper perhaps along with slight weakness / grumpiness but v subtle. The dizziness hasn’t lasted long but happens especially at night.
She fainted once when had UTI. I had been told not to do sick day rules as she had no fever but in hindsight probably her adrenals struggling with the infection.
We’ve been on 7mg for 5.5 weeks as we wait for GP - I definitely think the longer wait has been better as the v subtle changes have gone.
I would like to try the slow 5 week taper with a few weeks in between to stabilise Am worried GP won’t agree. Trying a different one in the practice who I’m told has some experience. Last GP told me to do 1mg every 2 weeks which I ignored.
I’m also wondering if a bit of pred at nighttime would help the 2 am wobbles!
Thankyou - I’m a health / social care professional in mental health and this forum is a great example of expert patient experience! Someone should do a study from it!!
What they don't know - you get to the same place in the end, just more gently. If it really was GCA, she has done amazingly well so far - a reduction rate of more than 1mg per month is predictive of flare and it would be medical negligence to try to force it faster. Why are they in such a hurry? If she flares up - very common in the first 18 months - they will have destroyed the good work so far and it really isn't worth it. It only takes a couple of weeks to lose all the perceived advantages of reducing quickly.
Patient-reported involvement of the eighth cranial nerve in giant cell arteritis
If your Mother was diagnosed in Oct last year and is now down to 7mg that is a very fast reduction and the dizziness could be caused because the GCA is not under control.
Flaring is not uncommon with GCA within the first two years of diagnosis.
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- you get to the same place in the end, just more gently. If it really was GCA, she has done amazingly well so far - a reduction rate of more than 1mg per month is predictive of flare and it would be medical negligence to try to force it faster. Why are they in such a hurry? If she flares up - very common in the first 18 months - they will have destroyed the good work so far and it really isn't worth it. It only takes a couple of weeks to lose all the perceived advantages of reducing quickly.
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