I have become very breathless over the last year or so and it is getting worse. I was sent for a chest X-ray in February and was told that I had fluid on the lungs and needed to see a respiritary consultant. The chest clinic at our hospital is closed for the foreseeable future so we paid to see a private doctor. He was not very helpful but said he couldn't see any fluid, only scarring on the X-ray and that I could have a CT scan if I wanted to but it would show anything more up. I had the CT scan and have been told by my GP that it shows scarring, a lacy effect and shadowing and that she is not trained up to the standard of a consultant so I need to see one. As the hospital is not open for chest cases I am a bit stuck and am not keen on seeing the private doctor again as I didn't like his whole attitude.
My question is have any of you had chest problems caused through R.A. or it's medications? I take Methatrexate (but have been off it since February because I have a leg ulcer and need to be off Mtx to let it heal up). I have also been taking Leflunomide but have also been off that. I take Hydroxychlorquine and Prednisolone as well as various other tablets that are not for R.A. I do feel worried about all this as I think I could have a serious problem here and it is not being looked into as quickly as it should be.
The short answer is yes, both the medications and RD itself can cause respiratory problems. I started developing respiratory symptoms last summer after starting on lef. Because there is a well known link and it was relatively early in my diagnosis/treatment journey, I was sent for a CT scan that I was told was ‘within normal’. However, I continue to get bouts of breathlessness, and now have other symptoms; in my case, I’m a former very heavy smoker, and it therefore could just be COPD and would have happened anyway, but I’m waiting on a spirometry test to try and help determine what’s going on. Spirometry is useful because the most common consequence of arthritis on the lungs is scarring as a form of interstitial lung disease. ILD is an umbrella term for lots of different illnesses that stand apart from the more common respiratory issues like COPD and asthma by virtue of how they show up on lung function (spirometry) testing: most ILDs show a pattern of restrictive problems on spirometry, rather than the obstructive ones that come with the common respiratory diseases.
It definitely needs looking into and I think you need to really stamp your feet, now. Although it may be something at the milder end of the spectrum, some of the ILDs associated with arthritis and treatment for arthritis can be severe and require prompt diagnosis in the hopes of slowing the disease: it’s not something they should just ask you to sit on, particularly not with an abnormal CT. I can’t understand why they’re saying respiratory can’t see you - respiratory is actually my main area of experience and knowledge due to having a child with complex respiratory disease, and from what I’m seeing on other boards, as well as with rheum immediately getting me scanned (and my rheum team aren’t exactly brilliant), this doesn’t seem an accurate reflection of access to respiratory in the U.K. Even if your local chest team aren’t operational (still seems weird to me, but ok), they can and should refer you to the nearest team that are seeing patients. There have been some restrictions with regards to diagnostic testing, as some respiratory tests like spirometry and full pulmonary function are considered extremely high risk for covid transmission, but access has opened up quite a bit again, and was maintained throughout for patients where there were concerns of a possibly serious or urgent diagnosis. Have you tried raising it with rheum rather than the GP? Either way, I’d also be inclined to take it up with your local PALS service - whilst how good they are varies from hospital to hospital, I’ve found they can be really useful when a fuss needs to be made.
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Thank you for your reply Charlie, I have got a telephone consultation on Tuesday morning with my rheumatologist so I will be able to tell her about it then. My GP was on holiday last week and has told me to ring her by the end of this week if I haven't received an appointment at the chest clinic by then. I agree with you about the situation and think it is terrible that the whole of the chest clinic is closed at present. I also have sleep apnoea and am supposed to be seen about that once a year but haven't been seen for two and a half years now and just get a letter to tell me that it is not possible to see people with sleep apnoea at present.
I think I had a spirometry test when I saw the consultant privately and he just referred to it as a breathing test. However having just read up about it, I don't think it was done properly as he only got me to breathe into it once and a clip wasn't put on my nose. It feels that it is not being taken seriously at all and that it doesn't matter how long I wait. In the past I have contacted PALS about things but the last time I went to their office over a year ago, it said that they were not there during the pandemic.
Yes as Charlie_G said sthe RD and the drugs can cause lung problems. My lungs are scarred from pneumonitis caused by Methotrexate. Do contact your Rheumatologist and ask him/ her to refer you to a respiratory consultant since your GP seems to have not been much help. I had breathlessness and chest pain last September and a D-Dimer blood test my GP organised (after much badgering by me to get if) showed I probably had a pulmonary embolism, confirmed by a CTPA scan.
Thank you for replying Lolabridge, I am having a telephone consultation with my rheumtologist on Tuesday so I will tell her then. My GP has asked me to ring her at the end of this week if I don't hear anything about an appointment by then. I assume you would have been taken off Mtx and I wonder what you were given then. I have actually been off it since February, but I think I have just begun to experience a flare as I am in so much pain all over and so exhausted and keep falling asleep even when my husband is in the middle of talking to me.
I have ankylosing spondylitis and it has fused my ribs, and caused issues with my breathing. I noticed it seemed to be worse the last 1/2 of 2020, and seen gp thinking it was my asthma. However she organised a CT of chest, and just phoned me on fri to say I have pulmonary fibrosis, either caused by the inflammatory arthritis or the MTX that I take. She had already referred me to a respiratory consultant before the CT, but they are not seeing routine patients yet, so I now have to wait for what dr says will be further tests. Quite alarming really. They also discovered an enlarged heart which was discovered when I had a stroke, age 52, but they never told me or gp. I had an echocardiogram which shows pericarditis and pericardial effusion, which the cardiac technician says is due to the inflammatory arthritis. So also waiting for cardiology now. I’m hoping the usual statement things come in 3s isn’t the case. Hope you find answers soon 🤗
Thank you for replying Maureen, you sound like me for having so much going on. It is terrible that we are not getting seen and just been kept waiting to see specialist. Regarding my back, I also have three slipped discs and degenerative disc disease. In fact at the last count I had nearly 40 different conditions and there have been others added since then.
Last November I developed cellulitis and an infected ulcer on my leg and was rushed into hospital because they thought I might have sepsis. I am still having nurses come round to redress my leg every week and although the ulcer is finally improving, I have been told I will always have to wear elesticated stockings which I am going to hate.
My days consist of hospital and doctor's appointments and it is getting me down. Here's an example; tomorrow a phone call from the spinal consultant, Tuesday a phone call from the rheumatologist, Wednesday a visit to a hospital for a pre-assessment about having injections into my back, Thursday I have to ring my GP, Friday the nurse coming, Saturday going for my second vaccine. I often feel that people don't believe me when I say these things and some of my friends seem to have dropped away from me. Enough of my moaning. I hope you get some better news soon.
Yes! I developed a mild but persistent cough after 6-9 months of MTX,at abt age 77, was taken off it while x-rays,scan and lung tests done. I had lost 25% of my lung function; the pneumonologist said it was the MTX, although recently the rheumtologist said it may have been caused by the RD.In the interim period I was back in wheelchair for a few weeks but now it's a distant memory. From memory I had 'dark patches and mild scarring' but was discharged by chest clinic after abt 6 months as I regained most of my lung function, up to 95%, thro' singing [just at home]and swimming.. Since then I've been put on a biologic which has been great 4me. I wish you well. xx
Thank you taking time to answer me GranAmie, I am in a wheelchair or on my mobility scooter and have been for several years now, from before all the breathlessness started, but all the breathing problems is making life more difficult that it already was. It is good that you regained most of your lung function. I love singing around the house and we have a karaoke set up that we use as well but I am now very crocky and not so good at singing. I have wondered about biologic treatment many times, but my rheumatologist always says it wouldn't work for me because I have a lot of OA as well.
I see the sun out today and long to be able to go out for a short walk. We have a beautiful park at the end of our road, but I am not even able to manage to walk that far. Even walking up to the end of our garden path is now very difficult for me. xx
You actually recovered most of your lung function through singing? That's fantastic and makes me feel quite hopeful. I'm 72 and have been taking MTX for 2 years. Until lockdown, I sang in 3 choirs and now I sing regularly at home. I didn't know it had the potential to be so good for my lungs, protecting them against damage from MTX. Thanks for posting that. xx
bless .. I used to sing in an amateur opera society when i worked in County Hall London but not since marriage / move to N Ireland. Until MTX probs. no real voice now but it certainly helped as did swimming... both are about controlled breathing aren't they. Never give up... I'm 80 next year but if i can, I will join some sort of group, glee or gospel maybe thro' U3a {Uni of 3rd age] xx
Hi Holly-willow - as others have said both RD and medication to treat it can cause lung problems. I have had asthma for years and COPD (never smoked) and very prone to chest infections which have sometimes turned into pneumonia and sepsis, requiring hospital admissions and IV antibiotics. I'm better with the "older" types of medication and currently on sulphasalazine and prednisolone for flares. When I've been given Methotrexate I've inevitably developed pneumonia fairly soon after and have declined biologic treatments as, in my case I feel it would lead to more infections. My last chest x-ray showed scarring of both lung bases and was confirmed by a CT scan. My Rheumatologist is sure it was caused by a particularly bad flare-up of my arthritis. I know we are all different and others do well on methotrexate and biologics but I am so afraid of infections. It's trying to get a balance between keeping the arthritis under control and avoiding medication side effects. I do get breathless on moderate exertion but otherwise my condition has stabilised for now. I do hope that you can be seen soon by a respiratory specialist in order to get a clearer picture of what is going on and receive treatment if necessary. Take care. X
Thank you for your reply kitty, I have had asthma for many years and it has always been well controlled. At first I thought it was a flare up of asthma but having used all the things that make it calm down and seeing that they made no difference has made me realise that it is something different. I have been off MTX and Leflunomide since February now because of having an ulcer on my leg and cellulitus and was told to come off them to allow the ulcer to heal. I was becoming a bit breathless before that, but have got worse since then. At first I didn't notice any difference when I came off the medications, but now, the pain is coming back all over me again. I really don't fancy going back on Mtx or Lef but don't know what else to do. I just wish I could see a good respiritory specialist to whom I could ask questions and get sensible answers. xx
Hi Holly-willow - it is really difficult getting the balance of medication right, especially when we have other medical conditions to contend with. I ended up asking the rheumatologist if I could just take sulphasalazine on it's own and have prednisolone during bad flare-ups due to getting numerous infections (mainly lung, but also in bone in my foot). I would definitely try and get a referral to a respiratory specialist - I find my Rheumatologist better at getting things moving than my GP, but everyone will have different experiences. My conditions re lungs and joints are fortunately stable at the moment, but also have Cervical Dystonia and frequent migraines which are not due to clinics being cancelled because of covid. Really hoping you get seen soon and get some answers and a treatment that works well and you can tolerate. It's like walking a tightrope at times! XX
Just for information Holly, there is a lot of information on lung issues on the British Lung Foundation website. There is also a helpline for people experiencing issues with lack of treatment or for advice. You do need to push for this and your GP or rheumatology should help you. Good luck.
Hi Holly-Willow,So sorry to here of your breathing problems and I do hope you get it sorted. I had CT scans, X-rays etc of my chest because I had breathing problems and I saw my doctor who sent me for the said tests because RA can affect the lungs and other parts of the body. I have private health care and it was them that carried out all my tests. I also had scarring on my lungs which they said was probably caused by my smoking habit some 35 years ago, but they also discovered that after a lung capacity test that I had asthma. Medications for RA can cause all kinds of side effects as we all know and I'm not saying that Asthma is one of them. I also have to you eye drops on a daily basis because I have dry eye which was confirmed by an optician and he said that is a consequence of RA too. Stay positive and insist that it is checked out properly, don't worry because that will affect your RA too.
Thank you for your reply cropredy, I have had asthma for many years as well as other connected issues like eczema, psoriosis, migraines and other allergies. Like you, I also have very dry eyes and have to use both eye drops and eye gels every day and many times. Most of the time, I can keep a smile on my face and my friends all tell me I am brave, but just lately it all feels a bit too much and more and more problems seem to keep coming up. Back in November I was rushed into hospital with an infected ulcer on my leg from having cellulitis and it was bordering on sepsis. Even now, I am still having a nurse coming out to re dress my leg etc every week. I have been told that I will always have to wear compression bandages or stockings for the rest of my life which I hate the thought of. It never ends. I need both knees replacing and my foot has become deformed and bent to one side and needs to be operated on and bone taken from my hip to fuse my toe. There are many other things too, and it is hard to cope with so many things. Sorry for the moaning as I am sure you have plenty of problems too. Take care of yourself. xx
Hi again,Like you I am waiting for a double knee replacement and my first knee replacement is on 7th June. Im sorry to hear about your other probs, I just hope you soon get them sorted.
Not too bad. Blood test at hospital tomorrow for the first time in fourteen months so fingers crossed. Make sure you get that breathing sorted out. If they can fly on Mars they can give you a lung test😼
When I was first prescribed methotrexate, everyone had to have a lung function test first, because while most of the side effects were picked up on blood testing, perhaps the most serious - breathing problems - wasn't. You need to do something straight away, as you don't want low oxygenation for any great length of time.
I agree with you Embriony. The rheumatologist is ringing me for a telephone consultation tomorrow so I will tell her about it and see what she has to say. I have also been asked by my GP to give her a ring at the end of the week if I haven't heard anything about an appointment by then. xx
Holly-Willow, it's appalling that you have been told twice that you need to see a respiratory consultant and nothing has been done. If your local chest clinic is closed, your GP should send you to another one. The system is called Choose and Book and - supposedly - gives you a choice of hospitals within a certain number of miles from your home. Your GP can set the number of miles and should discuss all the options with you. I have to admit I once had some crazy choices offered to me - three consecutive appointment times on the same date at my nearest hospital. As the date was impossible because I was away, I rang the surgery and the receptionist tutted and said it was because the GP did not understand how to use C and B. She had put in "nearest" as the choice of hospital, instead of a number of miles. The receptionist overrode it and I chose a hospital, date and time that I could get to.
The moral of the story is that you need to contact the GP and ask to be given an appointment request letter for Choose and Book. You may even be able to get it via the receptionist. Here is a link to the horse's mouth
The same thing happened to me. I was finally diagnosed with Pulmonary Fibrosis. They say that the PF was caused by RA itself but I was on methotrexate for nearly 30 years so I don’t know what caused it. I do know that the eariier you are diagnosed the better. You may have something else but the findings of the CT look suspiciously like mine did. See another Pulmonologist. Don’t settle for one opinion. Good luck. I am now on oxygen 24/7 and have some damage to my lungs.
Thank you for your reply Anonymousgal, I am sorry to hear that you are on oxygen all the time now and I worry that I will end up being the same. How long ago were you diagnosed with PF? I feel that nothing is being rushed with my problems and that it doesn't matter to the doctors just how long it will take to get me diagnosed properly. It is such bad luck that I have got this happening at a time when all the chest and respiritary doctors are treating Covid patients.
I managed to get to see one specialist but there doesn't seem to be any others who are treating patients at present and I really didn't like the whole attitude of the one I saw. He actually said "You can have a CT scan if you like, but there won't be anything found on it". Of course he was wrong and there were things found. I am worried that as each day passes, I am getting that little bit worse. I have never smoked in my life but I have asthma, RA and have been on Mtx for 7 years, although I have been off it now since February and have been told by my rheumy not to go back on it.
I was diagnosed and put on oxygen after my CT showed damage to my lungs in July 2020. I am on Prednisone and celcept. In process of request for Retuxamab to replace Celcept which isn’t working. Remember the squeaky wheel gets oiled. Don’t give up demand a diagnosis. It’s YOUR life we are talking about not their inconvenience. Best to you. Keep me informed
Thank you for trying over again. I know what you mean. I am supposed to be getting a phone call from the doctor today so hope it happens. It seems to me that we are left to diagnose ourselves & treat ourselves these days.
I am like you I had no breathing issues coming into RA and then within months I had really bad breathing issues So did x ray still nothing showing was sent to CT scan nothing showing, sent to respiratory clinic and diagnosed asthma low grade. However everything got worse on each Ra med I took and inhaler being used more and more. Called Asthma UK they talked through issues (nurse) she recommended preventer in haler and GP needed to refer me to chest clinic again so sent letter to GP. Last week at private clinic with Prof G he stated breathing issues for me was not RA as CT scans showed clear lungs. However he was amazed no one had put me forward for allergen testing. I am now doing that privately this week.So work with GP and even call asthma UK and keep chasing as I did but now feel I know it is not RA and other cause but I got so bad any activity was hard. It has eased off with new inhaler but still not great. I am hoping the allergy testing might show something.
Hi Dee , I hope you soon feel better & get things sorted out. I have had asthma for many years & I am pretty sure it is not that as my inhalers are not helping it at all. I think it is coming to the point where I will have to go private. Xx
My inhalers and 30mg steroid was not touching the breathing issue at all the preventative inhaler has soothed throat a little as not choking as much but peak flow still at 300 instead of 440. The Rheumy Consultant was adamant as no scarring not RA but a chest specialist needed and allergens tested to try and move the issue along and he has put this in the letter for me GP and RA clinic so we can move forward. Hope you can too as it is a nightmare trying to get it all managed x
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Had to come off MTX. What next?
what medication could be next . 
Fluid around the heart 
Lung Problems with RA
Did I do wrong going PRIVATE !!
