Like many others I don't post regularly but always enjoy reading the thoughtful and helpful contributions of others. How DO you aunties and Mark find the time to write so often and so well?! Your humour and wisdom is much appreciated.
I am quietly and steadily reducing my prednisolone from the 40mg dose when I was diagnosed in November 2016. Slowly, slowly on the 4day DSNS method now going down from 6 to 5mg. I am more tired than I was - presumably because my adrenals are (hopefully) starting to grind back into action, my hair is still falling out, though maybe not as much as it was two months ago, but most annoyingly I have developed acne on my face. I see it is listed as a steroid side effect to be notified to the GP. He has tried Daktarin and Dalacin, but neither have had much effect. Has anyone else found anything magical to make it go away? I have been referred to dermatology later this month, but any input would be helpful. Seems wrong to be so vain but there we are. Miraculously I haven't put on any weight, although I have been very careful with diet, and my slightly hamster chops have now gone. Still managing to look after a now nearly 3year old granddaughter one day and a 97 year old mother the next....joy from both ends of life's spectrum!
My ear pressure has also mostly disappeared, though when I have a recurrence it is usually a sign that I am having a difficult day.....pacing is still a skill in progress! I have volunteered for the research project into ear problems and GCA - my rheumatologist told me initially that he didn't think the two were connected, but as it was my initial symptom I am very sceptical of his view.
Thank you all again for your support.
Lizzie
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LizzieGuinn
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Thank you for this, though in fact I have always been very careful about what I put on my skin, especially my face where I have never used soap.
I am allergic to showers (metaphorically!) and bathe maybe three times a week, using Aveeno moisturising oil afterwards. My mother and husband both use Doublebase so I'll give it a try, but it's my face that has the acne problem, especially around my nose and I don't think I'd want to use Doublebase on that. For years I have used Liz Earle cleansing and unfragranced moisturiser on my face without any problems. So I'm pretty sure it's the pred causing the problem
Wow, thanks, what an accolade to be 'lumped'-in with the Aunties here. I'll bet they'll get some mileage out of that (or either deny all association with me!)
Sounds like you've done incredibly well to get down to 5-ish mgpd pred so quickly. It seems that the accompanying fatigue is, as you say, part of the adrenal wake-up process. But the Aunties will explain that much better than I can.
As for acne - yes, I've had a lot of that too, spotty face just like a teenager again! But it seems to subside as the pred dosage drops - in my case at least. It's probably more of a cosmetic issue for you ladies than us tough guyz, (ha ha!). If it helps, my GP prescribed antibiotics (Tetralysal) for the skin rash - I just took a short dose for a few days when it was raging, and it did seem to settle things down a bit.
Keep smiling in the meantime, t isounds like you've got plenty to keep you busy!
Can't speak for others, not sure I'd dare, but probably not looking after a 3 year old and 97 year old is the answer to time management! And maybe a touch of idleness thrown in!
As Mark rightly says your reduction has been pretty quick, but along with the dreaded adrenals you are probably at a "just about enough Pred" level. So to that end don't push it too hard, might be wise to try 0.5ng drops as well as the DSNS.
Between your granddaughter, mother and slumbering adrenals you've got a lot going on so be easy on yourself - it's not a race!
Your rheumy may not think they are connected - but there are articles form the past connecting them and the very clever chaps at Gateshead think so too!
Me? - it all replaces my translation work and is my "charitable offering"...
Have you seen the stuff about putting childcare and elderly care into the same facility? Hope no-one tries that for me but I'm sure lots of people love it...
My nephew went to a daycare that was called Oaks and Acorns. The two age groups were each in their own half of the building (day care and elderly housing) but the "Grammies and Grampies" could come into the daycare as often and for as long as they wanted. Sit and watch or interact as they pleased. The children were not allowed on the other side so the adults could retreat and have peace and quiet when they wanted. It seemed to work well.
I must stress that it ISN'T a good idea to try to sell your vulnerable young or elderly relatives on ebay. Apart from anything else, the sales commission is far too high. And, ebay Buyers are protected by a money-back guarantee if the merchandise is mis-described or faulty.
From experience, I recommend car boot sales or the local newspaper small ads. If the money doesn't matter, charity shops are a good outlet for unused / surplus-to-requirement relatives - and, of course, you are making a contribution to a worthy cause at the same time
I do see a lot of people with similar items in their shopping trolleys in supermarkets - but I never know if they pay to take them away or the cashier has to pay them...
Don't start me off about supermarkets (here)! The check-out people have enough trouble spotting barcodes as it is. Where do you stick one on Grandpa or the 'Little Horror' - and how do you self-scan them anyway?
AND.. there's the even more disturbing phenomenon of the 'Trolley Leaners' - perfectly fit-and-able people who can walk upright and unaided to and from their cars - but can't seem to manoeuvre a supermarket trolley unless bent almost double with their full body weight draped over the handles and shuffling along with semi-immobilised legs as a result.
Mark - My husband has started going around the supermarket in that posture. If it wasn't so expensive I might have to think of divorce... And stops to consider which pack of biscuits to choose - Grrrrrr!
Ohh...no! I wonder what's the fascination with trolley leaning? There's an epidemic of it here :-(. Methinks there should be a Highway Code for supermarkets - drive on the correct side, be in full control of the trolley at all times, give way at intersections, keep your distance, no walking 6 abreast etc... ?
And those *~$*!* slumperswho wheel not only on the wrong side but manage to swerve the wrong way along the aisles
pre dx with hypothyroidism I had terrible acne across nose and still have pimply thing. It cleared up in weeks on thyroid med but before that only thing that helped at all was otc eumovate. Only used sparingly and for a few days. technically for eczema and dermatitis. Have they checked thyroid?
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GCA 1st timer posting.
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GCA and feeling miserable
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