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Rank: Newbie
Groups: Registered
Joined: 10/12/2011
Posts: 9
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Hi,
I was diagnosed about a year ago and at the time was suffering from breathlessness and chest problems, coughing up lots of phlegm etc.....I spoke to my rheumatologist and consultant nurse about this. They checked it all out, chest x-rays etc and said all was clear. Since starting treatment some symptoms have decreased markedly ( joint pain) but I'm still getting chest infections regularly ( last one needed 3 courss of antibiotics). I also have awful fatigue a lot of the time. Are the chest/lung problems part of the RA?. Any advice and experience would be welcome!
Thanks
Ashley
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hi
Welcome but sorry you are having to join.
Yes,chest and lung problems can occur with r.a. you could ask your gp to refer
you to a respiratory consultant. Sometimes things don't show up on xrays. I say this
from experience. There are several stronger antibiotics which the consultant may
choose to use. The fatigue is common in r.a. but won't be helped by breathing
problems. take care and keep posting, Anne
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Rank: Newbie
Groups: Registered
Joined: 10/12/2011
Posts: 9
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Thanks for your reply Anne,
I've asked my GP and nurse for referral to chest specialist. As the X-rays were clear they both said no but did refer me to ENT which showed nothing and which I thought was the wrong place to go. I have an appointment with my rheumatologist tomorrow so I'll ask again, with more conviction this time!
I'll also ask about more (stronger) antibiotics - I've had so many infections in the last year it's getting ridiculous.
Thanks again
Ashley
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hi, again
Have the courage of your convictions (as they say). Please persever.
After all it's you that's having problems, not them. By the way I
presume you are not a smoker!! Good luck tomorrow Anne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hello Ash, and welcome to the forum. You do not say what drugs you are taking for the RA, and I just wondered if one of them was methotrexate? I ask because it caused me some respiratory problems, such as a really persistent cough, which would last for weeks at a time. Eventually after a short spell in hospital - admitted as they thought it might be pneumonia - I was told to stop taking the MTX, and things cleared up. Have you been given any Lung Function Tests? When I turned up for mine the lady doing the tests asked me if the problem was "methotrexate cough!" Hope you get some answers soon. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Great advice above, Infections tend to be slower to pass and quicker to get when you have ra Mtx can effect your lungs too There is some thing called rheumatoid lung that your rheumatologist may want to check out with you Best wishes Jenni how to be a velvet bulldoser
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Rank: Newbie
Groups: Registered
Joined: 10/12/2011
Posts: 9
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Thanks all,
I saw rheumatologist today who suggested I stop the MTX for 2 weeks followed by returning to it at half the dose I'm currently on
Hopefully this will help....
I've had regular chest X-rays, recent lung function tests which all seem clear, yet I'm still getting chest infections, coughing up lots of mucus and breathless at times.
I am still going to ask my GP for a referral to a chest specialist.
I don't smoke but did for 20 years so that's no doubt part of the problem - however the chest infections have only really begun since taking MTX...
Ashley
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ashley Welcome to the forum. Please do as suggested and have the courage of your convictions, sooner rather than later. Without wishing to scaremonger I have current experience of this (see my blog "Rheumatoid has travelling companion", in members blogs) and would advise early intervention. My chest X-Rays were clear and my spirometry was excellent. I stopped methotrexate believing this may be a likely cause of the shortness of breath, wheezing, coughing etc. but it wasn't. I actually have advanced heart failure, possibly caused by the Rheumatoid (hopefully know more next week). I have never smoked and until being diagnosed with Rheumatoid 24 years ago was a county athlete and very keen on fitness. Since being diagnosed with Cardiomyopathy my research has led me to understand that Cardiac and Pulmonary problems are actually much more common in Rheumatoid than is often acknowledged, one study suggested as many as 1 in 4! In reality RA patients should be checked regularly for this type of problem. I have never been checked and I imagine majority of others are in a similar position. Breathlessness should always be checked out as a matter of course as it can be due to either a lung or heart problem or indeed both. Please don't dither, heart failure can be treated but not cured. Hope you get an early referral and can be traeted quickly for the problem. Do let us know how you go on. Lyn x
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Rank: Newbie
Groups: Registered
Joined: 10/12/2011
Posts: 9
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Thanks all -
Still suffering with chest infection. Fatigue is at its worst - sleeping most of the day and aching muscles etc...
I keep asking for a referral to chest specialist but keep being told there's nothing wrong, chest x-ray is clear etc - by drs, rheumy and nurse.
At a loss what to do as I've never felt so ill for such a period of time - I was complaining about my breathing before my RA diagnosis over a year ago.
Is it worth seeing a consultant privately though that's all I could afford! - Is there any advantage in doing that?
Ashley
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ashley Please don't linger with this you MAY be seriously ill. As I said previously I have current experience of these problems and if I had my time again I would have taken matters into my own hands months ago before irreparable damage occurred. Shortness of Breath and Fatigue are two of the main symptoms of Heart failure, the other being oedema. Not everyone will present with all three symptoms. You sound as though you at a point where you are struggling to cope, as was I. Take yourself off to A&E and get checked out by people who know what they're doing. Doesn't matter what they think. I left it too late and by the time I went to A&E in the middle of the night 7 weeks ago struggling to breathe I was diagnosed with Advanced Heart failure, Dilated Cardiomyopathy and liver congestion. My body was shutting down. I now have only 23% output from the left ventricle, it should be between 55-70%, 40% absolute minimum to carry on a 'normal' life. The prognosis is not good. My X-Rays were clear and my spirometry normal. I too stopped methotrexate, but it made no difference, the breathing problems continued. Means nothing if there is a problem with the heart. I had large amounts of fluid around the heart and abdomen and in the limbs when I got to hospital and this added burden affected the pumping action. Please don't think "Oh. my heart's fine, I don't have a heart problem", it can happen to anyone and is common where auto-immune disease is involved. I've seen GPs, Rheumatologists, Nurses almost every week for the last 6/7months and no-one picked up the failing heart. I can't urge you enough to get to A&E straight away. I'm not a scaremonger but I am concerned that you need to be seen as a matter of urgency by a respiratory medic. Please keep us posted on progress Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Ashley
Just caught up with your post.
Definitely get referred to a chest/respiratory consultant and ask for a CT scan. It sounds very like my daughters.
My daughter (23 year old with RA) had terrible chest problems and non-stop infections and coughing up loads of stuff non-stop (for 2 years). When she eventually got a CT scan by the respiratory department it turned out she had bronchiectasis. This is a widening of the tubes in the lungs, so they produce too much mucus which easily gets infected. She needed special very strong antibiotics to clear it. She also takes a drug to thin the mucus - which she takes everyday and since then has had no problems at all... and after 2 years hasn't coughed up stuff since!!! She also has a PEP device for 'new style' physio. She has standby antibiotics at home so that at the first sign of an infection she has to start taking them; then move onto a higher dose if they don't work - whilst producing a sputum sample to the hospital for analysis.
Bronchiectasis can only be diagnosed by CT scan as it doesn't show up on an Xray - but your symptoms sound remarkably similar to hers. Lung function tests are only a bit low... so not much good to diagnose this.
There is a debate about whether the RA has caused the Bronchiectasis (Chest guys say 'probably' and Rheumatologist says 'no - but we do have a lot of patients with both').... but it's best not to know if you want to get travel insurance!!! I couldn't get her insured if I said RA caused it. As the professionals can't really say for sure... my GP was happy to say no it's not related... so I got the travel insurance!!
Since having a diagnosis and managing the condition she has been really well; and is finishing off her MA and off to St Andrews in Scotland to do a PhD!! So we will have to change consultants to make sure she is looked after!
She also takes MTX but we go on Friday to discuss all this as the consultant really wants her to change to sulfasalazine due to the bronchiectasis; but she's really got on well with MTX (unlike me!!).
Hope that helps. It may well be something completely different; but it is worth exploring all avenues until you get something concrete.
Anne
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hi, Ashley
JUST DO IT. Lyn,Anne and are talking from actual experience
not other opinions. Anne
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Ashley - I am so sorry that you're having such difficulties - what a worry to add to the burden of not feeling well. I am newly diagnosed and only just starting treatment (which is helping so far), but the one thing I have learnt is that the patient has to be VERY assertive to get real action - nice and politely of course but backed up by knowledge and conviction, and don't take no for an answer. Take courage and believe in yourself - after all, you are the one suffering and the NHS is there to support people just like us. Write it all down and take copies of these posts and take yourself off to A&E - it definitely sounds like an emergency to me. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Did you go to A and E? Hope the anti biopics are helping how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ashley Hope the symptoms are settling but if not really hope you are tucked up in a hospital bed receiving appropriate treatment! Please let us know how you are doing. Fingers crossed, thinking of you, Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Ashley
I really do empathise with what you are going through, I too have been plagued by continuous chest infections for 12 months, and all the symptoms you mention with clear x-rays and lung function tests.
It really is a matter of trying to eliminate all the serious stuff first, so you do need a specialist to rule out heart problems, rheumatoid lung, COPD etc
Has your phlegm been tested because I was harbouring a really nasty Staph. bacteria last December which was spreading rapidly? A cat scan would be a more detailed scan than an x-ray and also you might want to ask for a bronchioscopy to really see the full picture of your lungs. This was the only way I moved forward. All my chest problems have been caused by anti-tnf, all the R.A drugs can cause serious infection because we have lowered immunity.
I wish you the very best of luck and hope they can sort you out soon.
best wishes
Rebecca x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi there - have just returned from our support group meeting and we had a consultant in thoracic medicine with us today. He amazed us with his knowledge of RA and the affect it can have on the lungs. He said that if you have lots of infections and mtx has been ruled out, you should insist on seeing a thoracic consultant. Hope this helps a bit as it's straight fron the horses mouth, so to speak!!!
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Rank: Newbie
Groups: Registered
Joined: 10/12/2011
Posts: 9
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Hi all,
Thank you for the messages.
I'm only a sporadic user of this forum at the moment so apologies for the late reply.
I've finally got a referral to chest specialist (October) where more will be revealed hopefully.
In the meantime I've continued to get recurrent infections, which go away when taking antibiotics but return as soon as they're finished.
Anne- Thanks - I suspect bronchiectasis as my symptoms are so close - I'm asking the doctor to give me antibiotics at least until I see the specialist - he's resistant as sputum tests have sometimes shown infection, sometimes not, but whatever it is - they work. As soon as I'm not on them, infection, extreme fatigue, loads of mucus, night sweats, itching, breathlessness all return.
The other thing was infection disappeared when I was off MTX for 3 weeks, I went back on half-dose and back came infection. hard to know if this was the issue or the antibiotics, or both.
Don't know what my alternatives are about this but this problem with recurrent infections started when I began the MTX. My RA is fine, no symptoms for ages.
The most frustrating thing is that I feel loads better when on the antibiotics and start planning, doing things ( I didn't even need to go to bed in the afternoon!) and then - bang! - ill again, mood drops etc...
Thanks
Ashley
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Ashley - glad to hear you've got an appt with chest specialist - that's definitely a step in the right direction. Thanks for letting us know how you're getting along and good luck with the appt. Best wishes - Sylvia Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hello Ashley. Welcome to the forum....but sorry you have to be here in the first place, if you know what I mean. I can't really add anything to what the others have said, except to say that I'm so glad you have the October appointment but it's a shame it couldn't be sooner. It makes me mad to think of the people who turn up at A & E with minor problems or things they should see their GP about when someone like you has to wait such a long time. My first 'rapid access' appointment to see the rheumatologist took 3 weeks but it felt like 3 years at the time because I was so desperate. Good luck with all this. I do hope the chest and breathing symptoms are not serious and can be treated. Keep us posted. Meanwhile do use the forum if you need support or information. Naomi.
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