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~ Autoimmune 'joys', cats, dogs and Life!

Monthly Archives: March 2013

Steroids and bruising? And dentist.

26 Tuesday Mar 2013

Posted by Judy Hartley in Health

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APS, Sjogren's Syndrome, steroids

Had some cosmetic work done last Tuesday: forehead Botox and fillers either side of my mouth.  Had both done before with no problems.  (And yes, yes, I know they’re toxic, and evil, and vain – but I don’t care!)  But the right side filler site came up in the most godawful bruise.  It’s still there, a ‘fetching’ dull grey/yellow now.

And on Wednesday I needed a front temporary crown replaced – it was loose.  Should have taken 5 minutes but took over an hour and Jose (however lovely – sigh!) was manhandling me pretty robustly for much of that time.  On the same side as the filler, which presumably didn’t help.  And that’s been sore as hell ever since, and still is – so nearly a week later.

This doesn’t strike me as normal.  Do I assume it’s the steroids?  I think they can make you bruise more easily.

Certainly hope it is just bruising with the tooth and not an infection.

And I now dread even more than previously the prospect of replacing the temporary crown with an implant – ouch.  Not to mention risk of infection.  Oh Gawd, does it never end?

I’ve also noticed that the daily B12 jabs I do hurt now – they never used to.  Now I know why poor Theodore sometimes hisses when I give him his weekly jab.  Vet said he would cos it stings – and I couldn’t figure out why cos previously my B12 jabs had never hurt.  Poor baby.  But sometimes he’s perfectly OK with them.  Seems partly to do with getting B12 at room temperature.  Partly my aim, probably!

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Steroids or …. what????

26 Tuesday Mar 2013

Posted by Judy Hartley in Health

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allergic bronchopulmonary aspergillosis, APS, chronic eosinophilic pneumonia, Fungal infection, Sjogren's Syndrome, steroids

I last saw my respiratory consultant, Dr Jennifer Graves, on 4th March.

Reported that I’d felt spectacular on the initial prenisolone 1mg infusions, and pretty much until I dropped from 20mg/day to 15mg/day when I felt more tired again, bit more breathless.  And when I also developed what felt like the mother of all colds, that I couldn’t then fight off – because of the steroids!  Dr G, however, felt that the chest congestion I was experiencing was because I’d reduced the steroids. That didn’t compute with me, though, less so as I had time to think about it some more – after the consultation, of course!  (a) I hadn’t had those symptoms before I started taking the steroids – so they didn’t feel the same as the original, underlying pneumonia; (b) I was getting better but reducing the steroids – so that didn’t make sense that reducing the steroids had worsened the underlying condition; and (c) my partner soon developed what seemed like a very similar collection of symptoms – which supports my view that what I had was an infection.  The sort of thing that’s been doing the rounds of everyone lately.  And that I haven’t had in living memory – presumably because of a whacky, overactive immune system.

Dr G wanted me to stay on high doses of steroids for the foreseeable future, and 10mg/day at the very least.  But when I pulled a face she said ‘You’re going to be off them the next time I see you, aren’t you?’.  She’s good.  She negotiates.  She treats you like a grown-up.

Actually, I’ve stayed on 10mg/day.  For now!  But I do hate them: weight gain, constipation, migraines, osteoporosis, mood swings, yadayadayadayada.  Have to find an alternative approach.  Perhaps even, at least in the short-medium term, methotrexate, possibly in combo with prednisolone.  Still nasty, still loads of ghastly side-effects but hopefully just not the ones I hate/worry about most.

She also has me on loratadine (antihistamine), carbocisteine (mucolytic), fostair (long-acting steroid inhaler) and combined ventolin and saline nebules.  Am OK with the carbocisteine and nebules (just), but have stopped loratadine – would just prefer something natural.  I’ve ordered some butterbur from the States (banned here – duh).  It’s anti-inflammatory, good for migraines and asthma and an effective anti-histamine.

Have also started using some goldenseal – anticatarrhal, anti-inflammatory, antimicrobial, laxative (could be handy, given ongoing constipation).

Dr G has referred me to Dr Menzies Gow at the Brompton – a top asthma guy with a special interest in eosinophilic pneumonias.  Her letter to him actually used the words ‘I didn’t know what to do with her’ – OMG!  What hope is there for me????

So … next couple of months I have a rheumy appointment with Prof. Khamashta at Tommy’s next week, back to Dr G on 22nd April, M-G at Brompton on 8th May.  Let’s hope between them (and me) they can (a) figure out for sure what’s going on and (b) find a treatment regime that works, isn’t too toxic, and that I can tolerate.

Dr G said she wanted to see me in 6 weeks, said there wouldn’t be an appointment in the system, wrote me in her diary, told me to ‘just turn up at 9am – you might get a letter, you might not, but just turn up anyway’.  And that if I’ve got anything urgent I want to raise with her to just call her private secretary, cos the NHS system doesn’t work!  She also said she’d see me privately if I need an urgent OP appointment, even if it’s ‘strictly illegal’.  Actually, I don’t think it is but, point is she’s a rare breed in that she’s willing to be flexible, she actually listens to the patient, is prepared to freely admit when she’s bamboozled.  And is just plain nice, to boot!

Gluten and dairy sensitivity and Sjogren’s

18 Monday Mar 2013

Posted by Judy Hartley in Health

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APS, dairy sensitivity, gluten sensitivity, Sjogren's Syndrome

Interesting article on the connection between gluten sensitivity and/or dairy sensitivity and Sjogren’s.  No doubt it also applies to APS.

http://www.glutenfreeremedies.com/wordpress/wp-content/uploads/2011/11/JournalofGlutenSensitivity_Sj

I’ve long known I feel better if I keep gluten and dairy intake down to a bare minimum.  So I was right all along!  Should really cut them out completely.  I did for some years and I’m sure that contributed massively to better health.

I guess I probably only have gluten about once a week – can’t resist yummy bread as a starter when we go out for our ritual Saturday pub lunch!  I avoid pastry, cakes, pasta, pizza, biscuits, crackers – unless I’m using gluten-free versions at home.  Or, again, in desperation if away from home.

I only have cow’s milk when there’s absolutely no alternative.  If I want milk I use either soya or goat’s milk.  I do, however, have cow’s butter (though often goat’s butter too), and cow’s milk cheese (again, often goat or sheep) and I do have cow’s yoghurt (again sometimes goat yoghurt).  I’m thinking these versions of dairy produce are not so bad because they’re fermented?  But I stand to be corrected on that point.

Judy Hartley


Working as a freelance copyeditor, I have antiphospholipid syndrome (APS, or Hughes Syndrome), secondary Sjogren's Syndrome, hypothyroidism and several other health 'joys'. I live on my own during the week and with my husband at weekends with Oscar, our Miniature Schnauzer and Martha, our Maine Coon. Love singing with Rock Choir.

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