Brompton

Tags

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

Absolutely knackeroonied today after yesterday up at the Brompton.  Had to wait over 2 hours and fight the system somewhat to ensure I could see Dr Menzies-Gow and no one else.  But he was good once I got in there.

Upshot is he’s not convinced by the tentative ABPA diagnosis.  His comment was along the lines that ‘I see they’ve all been running around in circles tying themselves up in knots and deciding this is ABPA’.  He says my CT scans don’t fit and that there has been no sign of aspergillus spores.  I’m not sure that’s entirely correct but, in any case, he wants me to be admitted for a couple of days to run a whole battery of repeat and new tests.  Including skin allergy tests and a full-scale pulmonary function test on a treadmill, heart investigations, etc.  I think he’s suspecting there may be more of an APS connection than has been picked up so far.  And that tallies with the feeling I’ve had for some time that I would benefit from more anticoagulation. Indeed, the 2-week Clexane trial did seem to improve symptoms, particularly brain function and things like balance – but I couldn’t tolerate the awful bruising or the hassle of daily 10-min injections.  I told M-G I’m hoping I can hold out till Xarelto/Pradaxa are available.  And maybe something naturopathic like nattokinase could tide me over in the meantime.

Good news is, because he’s far from convinced that I have ABPA, I can come off the steroids.  Yeay!  Perhaps I never really needed to be on the buggers in the first place – grrrr.  Though I did feel spectacular for the first couple of weeks on mega-doses.  So I think maybe a short sharp shock of them initially was probably helpful.

He’s not sure either if I need another bronchoscopy.  But that’s in abeyance till we know a bit more about other stuff.

Bad news is it’ll be about 8 weeks before the tests and another 8 weeks after that till follow-up.  So, oh goodee, that means I have to carry on feeling crap for another 2-4 months.  And that’s assuming we get any answers in that time.

Also, coming off the steroids is going to be as awful as being on them.  Supposed to be coming down at 1mg/month – but I bet I don’t go that slow!  I’ll see how I feel.

Of course, I’ve come away thinking I probably should have asked more questions, checked a few things out – like am I dehydrated at present, as I suspect, and if so, why?  But I think we both agreed there wasn’t much point asking many more questions till we have some test results.

Gave several pints of blood, as usual.  Wonder I’ve got any left!

At least I feel, as with Jennifer Graves, that I’m in good hands with someone who cares, is approachable, treats you like an adult, and is taking me seriously.  And also that he might be the first to really try to join up all the various dots.

To be continued….

What if you don’t have/want a GP?

Tags

GP, National Health Service

Not for the first time, this morning I found myself wondering how the health system in this country would function if you chose not to have a GP.  How would you get a referral to a consultant?  And if, as I suspect, that’s not possible without a GP referral, what happens then?  Can you be required by law to have a GP, even if you don’t want one?  Wouldn’t that be a breach of civil liberties?

I don’t even really see how it can come down to saying that, if you don’t want a GP but want to see a consultant, you could just pay to do that.  Of course, you’d have trouble with any health insurance scheme because they always insist you go through the GP gatekeeping system before authorising claims when seeing consultants.  And I think most consultants would be extremely reluctant to see even private, self-funding patients, without a GP referral.

Now, is it just me, or does this seem just plain wrong?

I very rarely find my GP useful for anything other than either referring me to a consultant or writing scrips for drugs prescribed by said consultants. In fact, I more often than not find GPs to be a hindrance rather than a help (even though my own, regular, GP is one of the ‘good guys’).   So why do I have to bother with a GP at all?!?

 

Clexane progress?

About 10 days ago I realised I could just squeeze in a suspended clexane trial.  I figured I was stable on 7.5mg prednisolone/day (wrong – but I didn’t know that at the time!), that I certainly wasn’t going to be having my planned tooth implant any time soon, or any other invasive procedures, so I could try the clexane for a couple of weeks at least and see if it made any difference.

Well, I do think it makes a difference.  I’m less foggy, less ‘handbag in the fridge’ syndrome, better memory, better typing, better balance, greater clarity, better with words, both written and oral, etc.  Not perfect but better – perhaps 30-40%, maybe even 50% at a push.  And this is at 4,000IU/day whereas I think the regular dosage would be 10,000IU/day, so I should reasonably expect perhaps an 80-90% improvement at that level.  Therefore improving to ‘only’ normal senile mental functioning levels!!

However, I just can’t deal with the bruising.  It’s unsightly, ugly, ugh.  Not acceptable.  Totally non-negotiable.  And this is even if I take great care to inject very slowly, taking at least 5 minutes with each jab, icing the area before and afterwards.  Nope – still bruises.  My belly is starting look like a pin-cushion.  This morning, on suggestion, I tried the fleshy area at the top of my right thigh.  Even worse!  A huge blue bruise was forming even before I’d finished the injection – aaarrrrgggh.  This won’t do.

But what are the alternatives? Warfarin is the obvious one. On some levels I’m OK with that but it has annoying restrictions: diet, weekly (initially) INR blood tests, having to take the drug at the same time each day, etc.  I was OK with this, once established on the drug, when I first took it after my first PE (pulmonary embolism) in 1989 but had trouble with it when I tried it again 3 or 4 years back.  I kept bleeding all over the place – gushing nosebleeds, bleeding gums when I brushed my teeth, massive easy bruising, etc. – even while the surgery was gleefully insisting that I should up my level of warfarin because I hadn’t reached the stipulated INR level.  In the end, in desperation, I called the London Lupus Centre and spoke to Professor Hughes himself, and he told me to stop it.

Maybe the problem now is that I also take vit E and EPA, both of which help thin blood, whereas I almost certainly wasn’t taking them back in 1989.  But I don’t want to stop taking them – they have enormous benefits in themselves.  Perhaps I could persuade the powers-that-be to set a lower INR for me to achieve adequate anti-coagulation – more like 1.5 than the 3.0-4.0 usually set for APS patients.

At present, I’m also taking 2x75mg aspirin/day and was advised by my consultant to stay at that level while trialling clexane.  Which makes sense as otherwise we wouldn’t be able to tell what was inducing any changes.  However, I think that makes me bleed too much, so I’ve cut out the aspirin while I continue with the clexane for a few more days and I’ll see if that makes any difference.  I certainy wouldn’t be taking aspirin as well as the clexane, if that was prescribed long-term.

But I don’t think clexane is going to work for me.  Some people on the forums clearly think I’m being silly, that a few bruises are a small price to pay for feeling better, but these things are all very personal and, for me, the price is just too high.

I asked Professor Khamashta, my rheumy, if there was some other way to test whether higher anti-coagulation would be beneficial, rather than clexane.  He suggested upping my aspirin to 4/day, i.e. 300mg in total.  However, this provoked a forum controversy because some people had been told by their consultants that aspirin only affects platelets up to 150mg/day and that doses above that level would have no benefit.  Yet here was Prof K, also a leading expert in the field, telling me to increase to 300mg.  Uh?  I wouldn’t want to use that level of aspirin long-term because of stomach damage but could do so for a month or so to test the effects.

There is also Plavix (clopidogrel) but I think I tried that before and couldn’t get on with it, though I can’t now remember why!

It’s a challenge.  To put it mildly.  I’m really thoroughly fed up, truth be told, with all these health issues this year.  Takes up so much time, energy and, frequently, money.  I have to hope the Brompton appointment next month starts a fruitful process of at least establishing  exactly what’s been going on with my lungs, what the state of play with them is now, and what to do about it.  I’m sure that it’s only when that issue is resolved that I’ll be able to make any progress on a broader scale.  And then, hopefully, return to plodding along in a fairly stable state.

Narcolepsy? and steroids?

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steroids

What now????

Recently I’ve been overcome by bouts of what can only be described as narcolepsy.  Not falling down unconscious on the spot, thankfully!  But it feels for all the world like someone’s lobbed a lorry-load of sedatives down my throat.  Not recommended – especially when trying to concentrate on complex, but hardly scintillating, academic papers.

At its worst last week I didn’t feel I could last until my next scheduled appointment with Dr Graves, my chest consultant, next Monday, 22nd.  So, in desperation I emailed and asked for comments. Could this be a side effect of something, such as the steroids? Was there anything I could do/take to minimise the effects?  I didn’t really think it could be the steroids because I expected them to cause hyper symptoms, not coma!

However, waddya know, she came back and said that yep, steroids could be doing that and to reduce from 7.5mg/day to 5mg/day, and if I didn’t feel better within a couple of days to go and see her urgently.

Well, I was surprised but pleased in a way, since I hate these drugs and want to get off them so this is yet more evidence that they’re really not good for me! I’m going to have to find alternative, i.e. naturopathic, anti-inflammatory products.  There are plenty around.

When I re-read the patient info sheet I did indeed see that ‘unusual tiredness’ and difficulty concentrating, memory problems etc. are listed as steroid side effects.  Along with everything else.

Why does the medical profession continue to rely so heavily on these hideous drugs?!  This morning I’ve been reading that there is evidence even very low-dose steroid use can cause cataracts and other eye damage within weeks.  Certainly fall into the category of doing more harm than good.

So I have now reduced to 5mg/day and, of course, am now suffering the downside of that – aching muscles, more tired etc.  But I can live with that.  Still a bit soporific but hopefully that will diminish over time, and once I’m off the drugs altogether.

I shall discuss this with Dr G on Monday but am prepared to stay on 5mg until my appointment at the Brompton on 8th May.  In any case, I’ll probably have to taper off that slowly or be knocked sideways.

In terms of alternatives, I’m currently looking at two products: Immupro and ProCurmin Complete II, one as an immune enhancer/modulator and the other as a potent anti-inflammatory, both recommended by my naturopathic doctor.  Haven’t started taking them yet.  Will report back in due course.

Sprained Tooth Syndrome

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sprained tooth

Sprained Tooth Syndrome (STS) – now I think I’ve heard it all!

But this, indeed, seems to be what I’ve got now!  Lucky ol’ me!

All kicked off 2 and a half weeks ago when I went to the dentist (the delicious Jose!) because my temporary crown (rapidly becoming not-so-temporary, something like 6 months in!) was coming loose (again) and asked him to refix it. This should have been a 5-minute job but instead it took over an hour of pushing and shoving and trying again.  It would seem that some of the original cement was proving ‘elusive’ and difficult to remove, so the replaced crown just wouldn’t sit right.  It was painful once or twice, and tiring, but we got there in the end.

However, over the next few days the gum under and over the crown became red, inflamed, swollen and very tender.  At first, given that I’m on steroids, I thought it was probably ‘just’ bruising, that would take longer than normal to settle down.  But then it didn’t. So I started to suspect an infection – again because steroids could have made me super-susceptible to the tiniest speck of bacterium and unable to fight it off.  So I rummaged around in the in-house pharmacy cupboard and found some 250mg amoxicillin.  Tried that for 5 days.  Nada.  (Though at least, mercifully, no migraine this time.  Probably because now on both a lower dose of steroids (10mg cf. 15mg) and amoxicillin (3x250mg cf 6x250mg).)  Tried the higher dose of amoxicillin – still no response from the gum, but did get the first hints of a migraine.

So I went to the GP.  To cut a long, very gory story (aren’t they all?) short – then the next day to my chest consultant, two days after that to my rheumy at Tommy’s, then the next day, back to Jose.  Four medics and – you guessed it – 4 opinions!  Normal, bruising/swelling, go away (very rudely – but that’s another story); abscess, try Difflam, then back to dentist, probably for more antibiotics; go back to dentist, but not for antibiotics; finally, dentist takes an Xray and concludes it might be damage to the periodontal ligament (PDL).  This holds the tooth in place in the bone.  Or it could be a tiny speck of cement travelling along one of the many minute canals laterally from the tooth to the bone.  Go away, see how it goes, call him if it gets worse.

So I googled periodontal ligament – who knew teeth had ligaments???? – and stumbled across Sprained Tooth Syndrome.  Never mind teeth having ligaments, who knew you could sprain a tooth?!  But apparently you can.

Hmmm, well that may be the diagnosis sorted.  Not sure about the treatment, if any!  My past experience of ligaments is that they’re buggers to heal.  Some never do.

I’ve sent a link to Jose, though odds are he knows all this anyhow.  But I wonder what he’ll say the approach should be.  And how it affects my need to have an implant done there as soon as possible.  Isn’t that process just likely to make the sprain even worse????  My best guess would be that the longer we can leave it alone to calm down, the better.

Hope all this is of interest/use to someone else out there sometime!

Vodka called for now, methinks.  I’m sure that’s the best cure

Steroids and bruising? And dentist.

Tags

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!

Steroids or …. what????

Tags

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

Tags

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.

Antibiotic update

Tags

antibiotics, APS, Sjogren's Syndrome, steroids

So I stopped the amoxicillin last Thursday – and still had a thumping migraine till Saturday.

Then, when that finally subsided I felt awful.  Like, the worst cold/flu you could ever imagine.  So long since I had a ‘proper’ cold (let alone flu), I can barely remember what they feel like – but I’m sure it wasn’t like this.  Thought I was going to die!!  Oceans of yukky mucus/phlegm – yuk!

So I figured, OK, while on steroids, maybe I can’t fight this on my own, maybe I do need something.  Just something different.  So I called my consultant this morning and spoke to some sort of secretary (usual NHS customer-’friendliness’ – not).  She called me back this afternoon just giving me a message to say that Dr Graves didn’t have anything else to suggest, that she’ll see me in clinic next week, and that if I feel really unwell in the meantime (well, yeah, duh, that’s kinda why I’m phoning!), I should go to A&E.  Oh, and sit there while they ignore me for 6 hours – as I said to the (‘charming’) secretary?  Been there, done that.  I don’t think so.  Not impressed.

It begins to look as though orthodox medicine is not going to have the solutions I need.  Quelle surprise!  I think I will go and see my naturopathic doctor Franziska, and/or have a telephone consult with her, to see what she has to suggest.  It’s no good me being on steroids long-term if they leave me open to hideous infections that I then can’t fight because I have no immunity, and can’t deal with pharmaceutically because I can’t tolerate any antibiotics.

In the meantime, I have dropped my steroids down from 15mg/day to 13.5mg/day. And I have found, lurking in my pharmacy cupboard, in addition to the Oregano Oil Complex (antifungal properties) and N-acetyl-cysteine, some echinacea drops (immune support), and some Uva Ursi (antibiotic, esp. good for UTIs, but also inflammation and bronchitis).  Do I imagine it or am I starting to dry up already?

Antibiotics – deep joy

Tags

antibiotics, APS, migraine, Sjogren's Syndrome, steroids

I guess I was trundling along pretty much OK on the steroids, until I went down from 20mg/day to 15mg/day.  Within a couple of days I started to feel worse again – less energy, slightly breathless.  Then a few days after that I really started to go downhill and ended up with a stinking cold. First full-blown cold in living memory almost, decades certainly. Oh goodee, thanks steroids.

So then I worried that being immunosuppressed I might go on to develop something worse, like ‘regular’ pneumonia, and consultant said I should have 10 days of amoxicillin 500mg 3/day.  Wow, that’s a lot.

Worryingly, GP, for the second time recently got the dosage wrong and prescribed 2x500mg 3/day. OMG.  That’s 3000mg/day instead of 1500mg/day.  I think he’s losing the plot.  Probably happened cos they more often prescribe 240mg tabs I think.  Jeez, you’ve got to be on the ball haven’t you?

Anyhow, started antibiotics, though only 2 a day.  Amoxicillin has been one of the very few antibiotics I can tolerate – they all seem to give me migraines.  But it would seem that, perhaps in addition to the steroids – which can also give me headaches – they’re now doing that too.  So, no more antibiotics!  I’ll just have to take my chances.  Frankly, I think I’d rather be knackered and breathless, even with a cold, than have constant nauseous migraines.

Oh, and I’ve also got the runs too. So dehydration may well be playing a part as well.

Is there no respite?