Finally escaped the clutches of Hotel NHS with strict instructions not to break my parole conditions. As if I have the energy to do so with no RA meds still & no sign of them being reinstated in the near future despite my neutrophils increasing slowly but surely. At least the mice are going quiet, probably drowning in nebuliser meds - even the cat steers clear now but that could just be the noise of the steam machine which gives me a healthy pink glow & opens up my sticky lungs. Just when I thought I had got my head round how the RA affects me & the family it throws a spanner in the works. Kind of sad today as its hubbys birthday & I wasn`t well enough to join him & darling daughter at a local theme park, am asleep most of the day at mo thanks to the flare up. Still at least I wasn`t in hospital & friends cooked a lovely meal for us to enjoy tonight when they got home.
Hope you`re all keeping as well as you can.
Andie
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Am trying to take it easy but don't behave very well most of the time!!
well done on an your escape.!!. xxmy dad said its like a prison when we visited my mum couple of years ago in the hospital I work in! not very hotel like lol xx. hope yours was better. sorry bout your lungs. is it the ra or the meds that have caused the problems for yoy? you sound a brave and cheeful lady
Thanks - hmm definitely not a hotel but the staff certainly tried & did allow me to escape the ward to come home occassionally to see Abi rather than her have to come into me all the time. I think its the RA that has caused the issues although will get more confirmation next week when see Dr Breathing Man again. They have stopped all RA drugs though including Mtx just in case! Try to stay positive but have had a few low points over last few weeks - will pick up again once got head round it all.
Apparently I am one of the very rare scenarios that occurs in much less than 10% of the severest cases of RA so don't panic. Hey ho can feel more interest from students & junior Drs again!! Bet they don't pay me like they did in the late 80's/early 90's to act as an exam patient!
I remember that feeling of coming home so well. Having been in hospital myself a few times. Great to be back in your own bed I always think
Be as nosey as you like - as I say to our 9 year old - if you don't ask you don't find out!! Yep have had 2 lots metho - back in early 90's for a couple of years & then since started Rituximab 3 years ago (best treatment for me ever), waiting to see what we try next. Also high dose steroids & azathioprine - have tried just about every other med out there over the years.
The rituximab was a life changer for us as a family - had 3 years (4 treatments later) of near normal life, if you discount the surgery to help deformities from yonks ago, energy levels so much better when on it. It was & still is bottom of the pile in the potential causes for the mice - Drs convinced its the RA itself as far as I can tell but stopped the Rituximab & metho cos had knocked my immune system out & couldn't fight the infection & mice.
Let us know how your treatment goes - will be routing for you.
nope just use andie, the 'ie' ending (female version) cos don't like my full name for me - Andrea - makes me think I'm in trouble again!!!!!!!!!
ooh you have tried lots of stuff. sorrry andie.. there a lady on here called andrea too so andie it is easy get confused when tired !!
im off to bed now im just on steroids painkillers and gold injection..had to come off metho in feb cos of side effect problem gut related!!. would like to get my hands on some ant tnf.. my disease poorly controlled. fatigue bad and joints bad. my physio at my hydro session is mailing my consultant cos she is concerned !! that says it all nite hope to chat to you gain soon chatsi./ andie
Fingers crossed for you - keep us posted - the postcode lottery is a nightmare - I am so lucky to have a good team & a good hospital fighting for me.
Hi Andie,
Good to hear from you again - I'd been wondering where you were and suspected hospital
You will feel exhausted I'm afraid - as you know from previous chat I've developed RA Lung too and have been hospitalised with neutrapaenia
I had 5 growth factor injections before my bone marrow obliged and made some neutraphils - I then had the biggest flare ever so know where you're coming from. It does make you realise what a difference the RA drugs make, even when you're not feeling great on them!
You will get through this and you will get some energy again but it's going to take some time. You will achieve a new 'normal' and get most of your life back to normal. I know it's scary and worrying but when the results are in and the meds decided on and a regime established - and you feel that you know what you're dealing with - things will get better
If you want to chat to me off here send me a direct message -
Will do Cece, have many questions & concerns so its great to hook up with someone who has had this experience. your encouragment is really helpful especially as its been hard to find information that is helpful.
Thanks again
• in reply to
god you have been through the mill cece x
Hi Andie
Glad you have escaped the clutches of Hotel NHS. RA has some horrible friends to tag along with it and those of us who have had the disease for some time will have come across some of these and ended up hospitalised as a result.
I too have a degree of RA lung, although I'm always been accused of smoking ... I have never smoked (except for other people's secondary smoke!)! I have also succumbed to the dreaded neutropenia (due to methotrexate it would seem) and had all meds stopped. It is a hard to place for you to be right now but as Cece says things will get better. Let's hope the docs find a suitable solution soon and you can get started on new treatment. Like you I have been down the route of most meds and it is scary as you wonder what might be next ... I'm on second time round for some and currently on high dose steroids until something's sorted out (like this afternoon with a bit of luck!).
Has anyone suggested Tocilizumab? NICE guidelines suggest that this can be used as a follow on treatment after failure of Rituximab. It's still fairly new (July 2010) but has had good reviews.
How did this afternoon go? Any changes or help made/given?
Interestingly they suggested Tocilizumab last week but I am concerned as to whether it has a proven track record in someone with RA lung - maybe just fighting shy of everything at the mo. Am also on high dose steroids until we hit on a way forward. Hadn't thought about trying any meds for a second time - I seem to someone whgo things work on for a few months & then onto the next one - Rituximab gave us a 3 year break of that cycle & great relief of symptoms too. Hmm food for thought & a discussion to be had with my team.
Thanks for the encouragment - its been a bleak few weeks but I am better than I was.
As I understand it, it is a rare reaction in the lungs caused by the disease process or possible nodules - treated with steroids & usual RA meds. ( not a medical definition or diagnosis). I haven't come across many people at all with it.
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