GCA Blues - summer refrain...

[LizzieGuinn]

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

[jinasc]

I know this sounds odd, but how often do you shower and what do you use?

Everytime you shower you strip your skin of essential stuff...........and this can and does cause problems.

Many moons ago, when I had GCA MrsO advised me to try Double Base Cream or Gel.

My GP prescribed it and low and behold, problem gone............within a month or two.

I buy it OTC at Boots and I only shower every third day. I use nothing else and also use Johnsons Baby Shampoo.

Worth a try - perhaps?

[LizzieGuinn in reply to jinasc]

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

Thank you for your prompt reply.

[markbenjamin57]

Hi Lizzie

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!

MB

[DorsetLady PMRGCAuk volunteer]

Hi Lizzie,

Nice to hear from you again.

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!

Sorry can't help with the acne!

Take care.

[PMRpro Ambassador]

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...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

There was something on the TV last week about old and young working at school together - but I wasn't strong enough to watch it!

I'll make do with phone, Skype, emails and the odd visit/holiday - whether that be 200 or 12,000 miles.

As my hubby used to say - "I love children, but I couldn't eat a whole one"!

[PMRpro Ambassador in reply to DorsetLady]

You took the words out of my mouth...

[TooSore in reply to DorsetLady]

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.

[markbenjamin57 in reply to PMRpro]

A pal of mine auctioned his grandkids and grandparents on ebay as a job lot - managed to flog them within 24 hours (ONLY JOKING!)

[Margaret1951 in reply to markbenjamin57]

Your not joking mark 😂how much did they go for as think I will put myself on it also, my luck I will have to pay them !!

[markbenjamin57 in reply to Margaret1951]

Me too Margaret!

[Margaret1951 in reply to markbenjamin57]

You do cheer me up mark x

How much do you think we will have to pay them as I can only afford half a crown 😂😂😂😂😂😂😂😂😂

[PMRpro Ambassador in reply to markbenjamin57]

There I was getting quite excited, like Margaret...

[markbenjamin57 in reply to PMRpro]

Dear PMRpro and Margaret

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

[PMRpro Ambassador in reply to markbenjamin57]

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...

[markbenjamin57 in reply to PMRpro]

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.

Ohh.. better stop now, must be my age

[LizzieGuinn in reply to markbenjamin57]

Not to mention slurping their 'free' coffee as they do so. Now don't get me started on that one....

[markbenjamin57 in reply to LizzieGuinn]

How do they do it Lizzie? I couldn't if I tried. But then, like most men, I'm rubbish at multi-tasking...

[PMRpro Ambassador in reply to LizzieGuinn]

Shouldn't patronise that sort of supermarket - Lidl doesn't offer coffee except to buy...

[PMRpro Ambassador in reply to markbenjamin57]

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!

[markbenjamin57 in reply to PMRpro]

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... ?

[PMRpro Ambassador in reply to markbenjamin57]

Perhaps it is a reaction to Brexit??????

[markbenjamin57 in reply to PMRpro]

Heading for a 'slump' in more ways than one..?

[Margaret1951 in reply to markbenjamin57]

I end up saying sorry to a trolley !!!!! When I bump into one !! 😂😂😂😂😂

[PMRpro Ambassador in reply to markbenjamin57]

Like the £ - 1.10 to the euro today! It has been lower - not a lot and not recently but nevertheless...

[markbenjamin57 in reply to PMRpro]

As Private Frazer in the 1970's BBC sitcom 'Dad's Army' would say: "We're all DOOMED...."

[tgca in reply to markbenjamin57]

And those *~$*!* slumperswho wheel not only on the wrong side but manage to swerve the wrong way along the aisles

[Hidden]

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?

[LizzieGuinn in reply to Hidden]

No - but they're going to do a lupus test at my next blood test😧

[Hidden in reply to LizzieGuinn]

understandable with a rash on nose/face