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!
