NRAS
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Advice please

I haven’t posted on here since my disastrous Xmas 😩. After I’d ended up in A&E on Christmas Day with breathlessness etc...Anyway I went off to Tenerife thinking a few days in the sun & I’d be fine, wrong. I was so tired sometimes sleeping 12hrs at a time, very unlike me. I had no energy couldn’t walk or swim 😒 & got very breathless if I tried. I had no interest in food or wine 😳 not like me at all. After 3 wks I did feel a bit better but not great. Went back to my GP as was asked to do, he told me I’d had pneumonia the doctor in A&e hadn’t told me that 😡. It was thought that the black spot on my lung (they found on the X-ray taken on Xmas day) was an infection. My GP sent me for another X-ray & the black spot is still there. I have to have another X-ray in two weeks time. I still get tired & breathless. So I thought I’d ask all you knowledgeable folk your opinion. Could it be down to RD? Should I be concerned 😧. Thank you for reading.

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Hi have you spoken with your rheumatologist about the xray? Always best to tell them if your GP has requested X-rays wtc they do not know about. I know that pneumonia can linger to show on xray results for several weeks which is why they generally do a follow up after six weeks. I had a foggy lung xray whilst I had a rotten chest infection October to January and I suspect I had walking pneumonia (the GP would not prescribe antibiotics at first so my infection got bad) but I had a CT scan as I wanted to be sure my long term RA meds had not affected my lungs and also I didn't want to delay my Rituximab infusions. I hope you will feel better soon as pneumonia can take a long time to recover from. x

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Thanks for replying, I won’t be seeing my consultant until July but will certainly tell him.

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I have Cylindrical Bronchectastasis with my RA and it was only found after a CT scan as does not show up on xray. Ask for a ct scan as its not fatal but does cause lots of infections and so tired at times.

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If the X-ray is clear next time I won’t need a scan? Or should I still ask for one just in case.

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I had 9 xrays and 17 lots of antibiotics in two years. Constant infections thus referred to a Respitory Consultant. I'd just say if your chest infections continue ask for a referral. But my GP is good and very careful its just this is rare and hard to treat as I'm allergic to Penicillin.

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Sounds pretty grim for you. My GP is very good. He’s only been my doctor for the last yr & unfortunately for him but in a way fortunate for me as this last yr has been the worst I’ve ever had health wise. 😟

I hope your chest is clear now.

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Hi Have you had bloods taken recently for low vitamins and low iron .your symptoms could be that also

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I had bloods taken on Xmas day. The only thing that was flagged up was a possible blood clot/ or an infection

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I would just keep an eye on it a d keep going to docs.your doc could email rumatologist and they may bring your appointment forward

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Yes I will do. Thanks

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Hi Caza

No expert & not GP but whole RD thing started for me with extreme breathlessness, after flu virus. Scared the hell out of me, various diagnoses like copd, asthma but no, then joints started up. So i would say yes can be RD. Still get breathless with flares, that and fatigue but nothing like at start

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Yes, I know where your coming from, more concerned about the ‘black spot’ at the moment. I do get fatigued when flaring or when I’ve over done it but this has been going on now for a couple of months probably more.

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I've had pneumonia a few times and and I think feeling "not great" is an understatement!

I have a long history of lung problems and yes, follow this up, but don't panic as it's quite common with us to get nodules in the lungs that just sit there and do nothing. Are you an ex-smoker? As if so even more common. I recently had CT scans to check up on my nodules, and still there, still doing nothing, so they reckon they don't need to check me again for a few years.

This disease can cause serious lung complications, so breathlessness is always something to flag up. But pneumonia does also have this effect that can last for ages.

And radiologists are pretty good at spotting things that look cancerous, and I'd have thought then they would act pretty instantly and not just repeat an x-ray in a couple of weeks.

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Thanks helix, that’s sort of what I thought, something nasty they would of called me in. Yes I smoked for about 3yrs many moons ago. & your right ‘not ‘feeling great’ didn’t really capture how I felt!! I guess because they didn’t tell me in a&e that I had pneumonia I just sort of tried to carry on as normal & found out I just couldn’t.

I guess if it is a nodule they’ll just keep an eye on it. Hopefully it’ll be all clear next time

Does RD cause nodules?

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Yup.....in the end they decided that half mine were the disease and the rest most likely due to previous infections and smoking. They have completely lost interest in mine, and I get a strong sense that they expect me to do so as well. Hopefully your breathlessness will ease in time, and your lung spot turn out to be equally boring.

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I’m sure it will fine, just like to have a little bit of inside info of what it might be. Maybe I’m expecting too much to soon. It’s just that EVERYONE has had this flu/cough bug & are over it & im still bellyaching. 😩

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Didn't you know that you get a special card when you get this disease that allows unlimited bellyaching? So you're allowed!

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Nope I didn’t know but I do now!!😉 watch out for more!

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Darling talking of someone who has had pneumonia it will take you months to recover from it so darling please be patient. Says me who is the most impatient person on here and others will tell you same about me darling,but pneumonia is a deadly disease and have RA makes it take longer to recover from and i can tel you i am still not right. xxxxxx

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Hi Sylvi, yes I know you’ve had a really rough time of it of late & I take my hat 🎩 off to you x

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Just be parient my darling and if you don't feel like doing something then don't as you will pay for it later.xxxxx

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Yes it definitely can cause lung inflammation, I've had pneumonia twice and pneumonitis once. When I went to the hospital they thought it was a clot in my lungs and started me on heparin. I then got sent for ct scan which showed pneumonia, it took me eight weeks to recover from it, I had four lots of antibiotics to take before it shifted. Take care and I wish you a speedy recovery x

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Hi thanks for the reply. Sounds similar. I’ve only had one lot of antibiotics. I spouse I’m expecting too much to soon. I just convinced myself that the 2nd X-ray would be all clear & I'd be back to ‘normal’. I’m still dragging myself to aquafit, which I normally enjoy, afterwards I’m fit for nothing. I need to be more patient.

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I had pneumonia few years back and it took me nearly a year to recover from it. I am still very wheezy even now and get out of breath very easily. My rheumy tells me RA has affected my lungs (also my heart) and this can be an unfortunate complication of the disease. Hopefully you will be well monitored re. Your lungs now they know there’s a problem. Meanwhile look after yourself well and make sure you stay away from polluted air, ie cigarette smoke, chemicals which might irritate your airways etc. A little tip Caza, I got myself a steam cleaner for kitchen, bathroom etc and threw away all my cleaning sprays because they caused massive irritation to my lungs. Thinking of you, Lynda xx

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I CANNOT give advice except to say check in with your rheumatologist. I am so sorry you had such a bad time. No wonder you were tired. My thoughts are with you. Us h a PS. Sorry about the word cannot in capital letters. Cannot seem to get rid of this.

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Thanks for your reply Grace, I won’t be seeing my consultant until July unless of course my Gp advices otherwise. My gp is pretty good 🤞🏻so far. I think the folks on here are right I’m being a little impatient. It’s probably fine, thanks for your kind thoughts

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Caza, bleach is awful for me as well, makes me cough and splutter. You’re right RA is a bugger ! 💕

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Thinking of you, bought tears to my eyes. My family & friends make no allowances for me having RD or pneumonia. So I’ve felt a bit of a fraud & tried to carry on.

It’s interesting that you say about cigarette smoke, I was in Cambridge last week, a sunny day, so everyone was outside & the world & his wife were smoking. I came back coughing & spluttering & feeling ill & bleach seems to have the same effect.

Sorry to hear your lungs & heart have been damaged by this awful disease it’s a bugger isn’t it 😟

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Hi caza I have the same with cigarette smoke too. Cough like a anything when exposed to cigarette smoke. The say that second hand smoking is worse than smoking.

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It’s a real problem with outdoor eating. So nice to sit outside to have a coffee or a bite to eat then a table of smokers turn up & sets me off coughing. & don’t start me on coming out of airports 😡. Apologies to smokers for the rant 🙄

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Can I just add as I have had Pulanory Embolisms and am on Riveroxaban for life, that if you had had a clot then the A&E would have treated you for it and it is a pain unlike any other with weird tiredness and literally not being able to stay awake. I've also had pnumonia and for me it was very different to the clots. Had your blood test and thats not the usual one but an Arterial Blood Gas from the wrist (and its agony) showed a clot then you'd have been given medications and a VQ or CT scan. Try not to worry please as stress can make everything worse.

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Hi, I’m pretty sure it isn’t a clot as you say I would feel an awful lot worse. After the doctor had looked at the X-ray he seemed concerned & said he’d have to take more blood to rule out a blood clot. He took it from my other arm but not the wrist, it didn’t hurt at all, so guessing it isn’t the one your talking about. When the results came through he explained it like a set of traffic lights, green was all clear red could mean danger & amber (which he said mine was) meant that it could mean an infection or it could mean a blood clot. He thought it was an infection & so did I. He wanted to keep me in but I wanted to go home, he spoke to his boss & with a list of dos & don'ts & promises I got to leave. He phoned me a couple of days later to check that I was ok, which was so nice & not what I would of expected of the nhs. So I was expecting this last X-ray to be all clear, so it’s thrown me a bit. Thinking helix is right it’s probably a harmless nodule. Thanks for your reply & sorry you’ve had to go through all that

Take care

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I'm fine its three years ago now but feel so much sympathy for you as worry is awful and makes pain a lot worse.A blood clot means no home !! and so please do try not to worry.

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Pleased your fine now. I’m not to worried just like to be forewarned. Ok I am a bit worried!!

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Hi

I have RA with lung involvement.

To get a really good look at the lungs in terms of the RA requires a CT Scan - at least that is how Rheumatology and the Chest Clinic keeps an eye on me.

My RA started in my lungs with a persistent dry cough and the RA in my hands and feet came a number of weeks later. I did not suffer from breathlessness. However my RA in the lungs is to date thankfully is very mild.

So hopefully you have an infection and not RA in the lungs - sounds a strange thing to say - but you know what I mean.

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Hi Joy, yes I do know what you mean. This all came about after I’d had the flu so hoping it isn’t RD related apart from the fact that my Immune system couldn’t fight off the virus on its own 🤞🏻🤞🏻.

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