NRAS
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Lung infection

For those of you who have been on this site for some time you may recall me going on about lung function tests and the importance of getting the first one done before starting mex. well it would appear that l was right and three doctors have now told me l was on mex for to long without any tests being done with the result that my lungs are infected and they cannot do anything about it. The down side is they cannot give me my meds when l have this infection so the only recourse is pred and pain killers, as you can imaging l feel let down by the very people who supposed to look after you. I take oxygen for up to sixteen hours per day now and my only hope is that you all ask for these tests if you need them and no one else has to suffer as l have taking mex, l will try to keep smiling thanks for listening to me in advance.

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Thats awful. I hope they get you to very experienced chest doctors asap.

You maybe even have a case to go to medical claims company, I normally wouldn't think that as I think the docs try their best but they could see if it's a suggestion to get lung function tests or it actually is part of your hospitals protocol. I know I got a chest xray only before the start of my treatments.

I hope something can be done to ease your suffering . Thinking of you xx

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Hi Allanah thanks for your reply one of the odd things with regard to lung tests is it depends on the hospitals approach, in that if you have no chest infection at the time of giving you mex then they do not give you the test, they seem to say that due to side effects it would only happen with the odd one in a few thousand so bank on the side of the odds being in your favour when it’s not that’s tough

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Hi Gameo

I’ve recently been told I have brochiectasis. Was told by the respiratory specialist that it’s more likely due to RA meds.

I had chest problems for over a year and each I saw gp said it’s a virus as my chest is clear.

From what I understand this condition will show chest is clear.

I battled between Rhuemy and gp. Had chest X-ray for both same week. GPs showed swollen lymph nodes and Rhuemy clear. Long story had sputum specimen Which showed bacterial growth x2 and several courses of antibiotics which helped for a few days. Eventually Rhuemy referred to respiratory specialist and lung scan showed bronchiectasis.

Hope you feel some relief soon

X

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Hi Matilda thank you for your reply it would seem we have been along the same lines the amount of X-rays l have had would last a lifetime for some people but at each time l was told it was all clear and everything was fine , l have lost all trust in my rummy as l feel l have picked up more info looking at the posts then anything he has told me the length of time he left me without the tests were 2011 to 2013 and l am paying for it now

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I have cylindrical bronciectasis and had ct scan its a genetic condition according the NHS website and have to see respitory consultant next week. Not sure what happens next but not been told its down to RA meds. I've had 11 infections in 16 months with 9 chest xrays, and all the lung function tests you can have, the local hospital has been great but it was the GP who referred me which resulted in a proper diagnosis. I'm optamistic that it'll be ok and I hope you you get some good results too.

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Hi Medway lady l have seen a lot of doctors so far but not one has done anything or put a name to it l will just have to put up with it until l can find out some more

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Thanks for post an sorry you ve had bad outcome. I ve had ongoing problems with breathlessness since last year, before joint problems and starting mtx. Had 2 x rays and spirometry (lung function) clear, tho spirimetry nurse felt something else going on? Rheumy said breathllessness nothing to do with RA which is only hands and feet, yeah i know! GPs reluctant to book another xray as i ve had a few over last year. You re saying it doesn't show on x ray necessarily, aren't you? Whole RA thing started with it for me, do i need to push for ct scan? It has improved since then but still get out of breath on little exertion and worse with flares. Cheers x

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Hi karena thanks for your reply your post is very intresting you say you had breathing problems before being given mex that would go against everything my hospital has said to me with regard to lung function tests if you have no breathing problems you can take mex , but in your case you had the problems before so giving you mex with the side effects could make your breathing problems worst with regard to X-rays and scans l have had so many l could not believe but they all come back clear push for as much as possible and ask questions! l hope you feel better soon good luck

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Thanks Gameo

I know RA can affect lungs too and others have said it started there, not joints. I need to get it checked further i think. Hope you get better relief for yours; it's worrying. Thanks for post.

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I am reading all these interesting posts for sure. RA can cause fibrosis (scarring in lungs) - I have this. Also, breathlessness can come from a cardiac problem as well. I recently had this sob (shortness-of-breath) and took myself to an ER here in US. As it turned out, I have Hypertrophic Obstructive Cardiomyopathy (HOCM), which often presents with breathlessness and can mimic pulmonary problems. I think it is best to never assume with RA that all symptoms are related to auto-immune problems. RA can also present a higher risk for coronary disease. We who live with the disease are our best advocates, I really believe this. Good luck to all, Dorothy

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Hi dryan thanks for your reply you make a great many very good points l feel the more you look at the different things that could be the reason for the health issues the more views you get from different doctors. I am glad you put the the names of the different ailments in the first letters as l could just about get my tongue around the full names. Your last sentence sums it up we who have to live with it l just feel a few simple tests and l may not have been in this position l now find myself l had ideas when l was working about what l wanted to do in retirement going on holidays around the world but alas that is beyond me now still onwards and upwards good luck to you for the future (the weather in the US is hell at the moment hope you are doing well)

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gameo please tell me what is mex?

I hope you are getting some help and being looked after and loved you need better care and luck.huges Fedup5

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Hi fedup5 sorry for the slip what that means is methotrexate it is my laziness to not fill out the full word. At the moment I am in limbo as to getting help I feel my rummy has looked at my age and put me out to grass (sorry done it again) the outlook is not to good but l will keep going and the first thing is stop feeling sorry for myself many thanks for your reply and I hope this has answered your question

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