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Lung issues?

Hi. Just looking for some advice or help. Have any of you got any lung issues associated with your arthritis? Do you mind sharing how these came to light?

I’ve read that other organs can be effected by arthritis (e.g. lungs and heart) but are there protocols for regularly checking these with patients? Would it usually be tour rheumatology team that keeps check on this?

Many thanks, Fi

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Good question. My rheumatologist doesn't do much other than ask how things are and check for joint swellings. Of course I get regular blood checks.

I'm guessing GP would check on other stuff. I did have a chest xray when I developed an horrendous cough. GP arranged this

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Okay. Grand. Thanks for that. My new GP flagged something last week. Hadn’t expected it at all. Cheers

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If your Rheumy is on the ball and you develop cough or lung issues he/she should follow this up as it could be your Rheumy meds causing the problem.

I developed serious breathing issues on methotrexate. I let Rheumy team know, saw rheumatologist and he arrange x ray and subsequent change of meds

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Okay. Thanks James. That’s good to know. And how are things now?

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Hi

Came off methotrexate and started on biologicals - Benepali / Etanercept. Best med I’ve been on. No lung problems, greatly improved mobility and much lower pain.

Hope you keep well

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That’s great. I’ve not been on MTX for over a year and am also no on Benepali which has been really pretty good for me. Have your lung issues sorted themselves out too?

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Yes no lung issues now thanks

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Hi, my husband is on methotrexate and developed breathing problems a year into treatment, they gave him an inhaler, he’s just got worse and still in pain, will be going to the hospital soon so will ask about changing meds, breathing problems I believe are down to methotrexate as he also has large nodules on elbows.

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Ask for an X-ray. Also methotrexate is known to cause breathing problems in some patients. It can cause fibrosis of the lungs. Don’t be fobbed off with an inhaler unless a diagnosis indicates such.

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Hi there I have had problems with methotrexate and developed pneumonitis and lung damage due to that drug. Have been off all meds except steroids since July last year because of this and last week started abatacept. Been the worst year of my life.

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Sounds awful. Hopefully abatacept will give you some relief soon. Take care, F

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wow you shouldn't be given an inhaler without a chest x-ray!

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James, do you take this solo? As my Rheumy wrote to my dr stating I am on mtx and Etanercept, one of the reason he changed me to biologics was the stomach burning when taking the mtx. I have been taking the Etanercept on own its as he hasn’t even got back to me.

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Rheumy stopped my methotrexate when I developed lung problems. Started my on biological thereafter. Only med I am on is Benepali/Etanercept.

Works a treat for me

Hope you keep well

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I also had X-rays when starting new DMARDS. Although I do have Bronchiectasis.

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I've read it too Fi23, worries me as whole RA symptoms for me started with extreme breathlessness, then joints. I get out of breath when flaring still or walking too far, nothing like at start though'. Rheumatology not interested to point of saying nothing to do with RA, though GP agrees with me it can affect lungs: it worries me too. I had chest x-ray with it (and before starting methotrexate) and lung function test, all clear, though spirometry nurse said she could hear still breathless.

I rang help line on audible recurrence when I first started Mtx as I know it can be side effect but got told, and I quote 'we're not a chest clinic'! So GP gave me steroid inhaler. Never had breathing issues before RA, gave up smoking over a year ago before dx (yeah more fool me, I know) but the whole disease started when I couldn't get over flu virus; had stonking immune system before, worked in school, never went down with anything. Sorry, bit of an essay but like you, don't know who to ask next.

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Sheesh. That’s not great Kerena. Funny my disease started after a really bad virus too, and I work in a school as well so my immune system in my previous life was pretty stonking too 😬

My GP gave me an inhaler last week - I didn’t even go in for chest issues... whole thing has thrown me tbh. My specialist nurse hasn’t long called me back actually and she is going to speak to Rheumatologist and see about requesting another chest x-ray. If I have any progress I’ll let you know!

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No it's not is it, same goes for you too. Someone else on here had to push for chest issue too, had bronchiectasis, hopefully you ll get one from them. I'm not lacking in confidence usually but you have to sort out so much with this health and finances etc, it gets wearing.

I've had rheumatology say it's only hands and feet before, then do good letter outlining other joint probs, go figure eh? Keep us posted. X

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an x-ray would clearly show any problems with nodules in the lungs. That's what doctor told me.

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Hi Fi23,

My rheumatoid arthritis first manifested itself in my lungs. I was pretty healthy mom of four boys, very active. No one at the time was familiar or knew it could do this. I certainly didn't. I was having an extremely difficult time breathing as time went on but thought it was my asthma, or maybe pneumonia. Finally so bad I went to Emergency, where after a chest xray and CT scan they saw a nodule in my lower lobe. They thought cancer and wanted to do biopsies, and I was very sick.

They didn't think I would make it, many times wanted to intubate. Called in a pulmonary specialist, who said my lungs when she saw them were shocking-looked like shattered glass inside. Thankfully the pulmonologist put me on high dose prednisone, 80 mg immediately when she saw it, which stopped the damage from continuing, and talked of lung transplant. At first Many scans to rule out cancer for a year. Then said interstitial lung disease of unknown origin. I have pulmonary fibrosis of the lower lobe..

She explained to me that unfortunately it's rare to see rheumatic damage that severe as a first presentation, and many are still not familiar with rheumatoid first manifesting in lungs and other organs, and to be sure that every family member knows to be aware.

It is very important to have a pulmonary doctor, especially if you already have lung issues, so that it can be caught and dealt with immediately. They will do lung function tests periodically to make sure nothing has developed/changed If you have any issues. A cardiologist should be part of your medical group too(especially if your dealing with breathlessness not caused by lungs). Rheumatoid is not like Osteo-rheumatoid is a systemic disease (affects organs)that needs monitoring, especially if you already have other health issues.

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Bingo! Thank you, kautique. 🙏 😌 Don’t know if you’re already familiar with orchidcass77 & her Facebook group ( facebook.com/rheumatoid.lung/ ) or the British Lung Foundation (BLF) forum ( healthunlocked.com/blf ). Very best wishes to you, kaitique & Fi23. 😌 🙏 🍀 🌺 🌞

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Thanks 👍🏻

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Thank you!😊

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Wow Kautique. What a time of it you and your family must have had. Thanks so much for taking the time to share all that with me.

My dad has had pulmonary issues for years and my Mum has cardiology issues along with numerous auto immune conditions.... I always felt like the healthy capable one in comparison!

Sadly in a cash strapped NHS it doesn't always feel like there’s a “group” around you at all but I think it sounds like I need to be asking a lot more questions the next time I am at the hospital.

Thanks again 😊

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Fi23, I was started on methotrexate. I didn't like the side effects of the medication. I told my RA doctor that cancer ran in my family big time, With in 7 months I had nodules on my lungs. I was put on different RA medications. I was on oxygen in 2014, 2015 I had 3 didferent types of skin cancer after taking Rutan . One being melanoma. Feb 2017 Metastasize Melanoma to my lower left lung. That was removed. I am on Opdivo now for my cancer and just had to do more Rutan because the opdivo causes RA flare ups. They can blame something for what we go through but it is the RA medication. My lungs are so bad that I can't have anymore surgeries because my lungs are so bad that I am a high risk now. I am just glad that they got the port in first. So please be careful and good luck.

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Oh Danna. I’m so so sorry to hear that. I lost my cousin to cancer 2 years ago now, not long after my diagnosis. He had been on MTX for years. Take care of yourself. I’ll remember all that the next time I’m feeling nervous about asking too many questions at the hospital.

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Hi hope you are ok.they should keep an eye on you and patients at rumatology and ask questions and symptom specially with those horrible drugs that can and do effect the lungs etc

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Thanks Ajay

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Yes Cylindrical Brochectastasis and had PE's.

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I have a lung condition and saw a respiratory specialist who said I have bronchiectasis. Also mentioned that possibly due RA medication but I need to take them to treat my RA.

I have had a chesty cough for approximately a year before diagnosis.

My rheumatology assessments usually homed in on my joints. Don't have enough time to do a thorough check so things can be missed.

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My GP know very little about RA supposed to have shared care but when I have a problem with my GP they just say speak to rheumatology service for advice.

Once i was in a flare saw GP can't do anything so needed to wait 2 weeks before I had a steroid boost.

I have an annual review but skim through everything as I have asthma underactive thyroid RA and now bronchiectasis. In 15 minutes.

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I think that's the trouble, rheumatology say see GP, GP says see rheumatology, where's that leave you as patient, stuck in middle. One of nurses at last rheumatology event moaned about GPs referring back to them all the time and I can see where both are coming from but it is a systemic disease and all the emphasis seems to be on joints. Same with name really: arthritis is main symptom but there are others that get missed or ignored as not relevant, reading everyone's posts: why not call it rheumatoid auto immune disease or something?

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Hi Kerena, you hit the nail on the head, I get the same thing when I go to my gp. They are unwilling to interfere with ra consultants treatment, so tell you to contact rheumatology. When you contact rheumatology they tell you the first port of call is your Gp!!! Also agree with changing the name of this condition as people do not realise how serious it is, they think it is just aches and pains in your joints that only older people get, I am 63 and have had it 30 years. Also it annoys me so much when they say the weather affects it ????

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Hi Calla

Glad it's not just me, 61 & had it a year and tbh had no idea what it was myself: it doesnot get publicity it deserves. Weather? Well my hands always ache, so cold doesn't help but it's not cause. Someone else did post on ridiculous remedies people come up with, seriously 😄

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yes rheumatology would get really cross when GP would refer me back to them.. especially for a steroid jab.

I was told has something to do with who pays for it so GPs don't like it?

Yes I always call it RD now instead of RA. Fed up with people saying oh yes I get a touch of arthritis too when it's cold.

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Not just me is it? Started to feel like hypochondriac or broken recod 😀

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That's why it's so important to tell your rheumy team about any new symptoms. Last year I flared and then started getting breathless very easily. I told my rheumy and was sent off for lung function tests, and then a CT scan which showed nodules. The radiologist felt that they weren't the issue, and had probably been there a long while (I have a long history of lung problems) so this was followed up during the year, rather than doing a biopsy. After 12 months when nothing had changed they decided that they were benign and stable and no further action needed. Turns out my breathlessness was actually a heart valve and nothing to do with RA or the drugs at all.... even so happy it got checked out.

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Hi I have lung problems, lot of trouble breathing if I have to walk up a hill.

I am always puffing.

They give you puffers for this.

I go to a lung specialist, cannot remember their correct name.

I have had three bouts of pneumonia .

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My practice nurse refused to give me a pneumonia vaccination recently said I was at risk. Had one in 2004 so not necessary although my RA consultant said I should have every 5 years. She also mentioned very low stock nationally. They had 6 and needed hold for someone that really needed it.

Eventually I had the pneumonia vaccination now. GP said I should have it and sanctioned it. What a waste of an appointment when someone else could have it.

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When I was taking methotrexate it began to make me breathless.had xray and was ok .when in hospital 2016 when discharged I was told I had some noDales on my lungs related to RA.had another CT last year and told no extra ones thank goodness

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Thank you. So to confirm the nOdules showed up on CT but on the X-ray they did not?

Good news you’ve no new nodules. Do they effect your breathing much now?

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I do get puffed out sometimes but consultant said it's my Fibromyalgia .not sure believe that

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Ha! Yes. I’m kind of that way myself now. Gone are the days when I used to think medics knew it all!!

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I had an x-ray and ct scan last month ago Rheumatologist told me last week that x-ray would clearly show nodules anyway if I had them so not to worry - after we realised that once again RUH in Bath gave me someone else's diagnosis and scan couldn't have been mine. Am still waiting for my scan result! and correct discharge letter!

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Hi F123

I was diagnosed with RA in jan 2016. Started mtx in June came back off my holiday in sept and struggled with my breathing. Drs said chest infection and gave me doxycycline to which after a few days I got worse. I was admitted to hospital to find out I had a mild heart attack ( no damage to heart or valves, lucky me) and inflammation in the sac around my heart and also my lungs. The cardiologist told me it was mtx that had caused this not RA. After ct scans & mri scans & medication my heart was fine but my lungs, I was told, had ground glass opacities. I was transferred from cardiology ward to respiratory ward. I had bronchoscopy & biopsy done and luckily for me after a year long recovery and no more fibrosis in my lungs I’m fine. I’ve struggled with reactions to 2 more dmards after. Tried benepali in may ladt year which was great for a few months then ended up neutropenia. I was without any dmards for 5 months ( just managed on 10mg prednisone) but started to get swollen joints. I’ve started on Humira in jan this year which was great after the 1st injection. 2nd injection no pain but joint stiffness. Took 3rd injection last Friday & ive had swollen, stiff joint pains and really bad fatigue so maybe this isn’t working either?

Sorry for the long story it’s the first time I’ve ever ousted in here 😊

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Thanks for taking the time to post Shelly. It is really helpful (although a little concerning!) to see all the different issues people have had. Hopefully your Humira will eventually work for you. 👍🏻

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Hi Fi123

Quick update. Had phone consultation yesterday with rheumy nurse. Was really badly yesterday with shortness of breath & chest pains told her this and she went to speak to a dr and said she’d ring back with an appointment to see dr but might be middle of March. Rung me back dr wanted to see me today. I’ve been told to stop Humira had to have ECG , chest X-ray, bloods done & sent home to wait for results & another appointment. Told to take 15mg steroids for 1week then drop to 10 til I go back.

So doesn’t look like the Humira is gonna work either lol.

Just to add, this all started from a viral infection in October 2015 which led to me having severe chest infection.

Thanks for taking the time to reply it feels good to know that other people understand 🙂

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That’s good they’ve been able to see you so quickly Shelly. It’s a rotten time of he year. Any chance it might be another chest infection causing the problem and not the Humira per Se?

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It’s possible it could be. That maybe why he’s said to stop the Humira and sent me for chest X-ray just in case it is infection?

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Fingers crossed you get some answers soon Shelly. I’m off to see my Rheumatologist on Tuesday. We can keep each other updated!! It’s funny, hearing you talk about how yours all started, I had a bad virus which then brought on my other symptoms. But it had got into my chest too! Life has been such a blur in the past 3 1/2 years I hadn’t made that connection till now.

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Looking forward to hearing all about it on Tuesday.

What meds are you on now and are they working for you?

I’m thinking of asking if I can go back on benepali but a lower dose when I next see my rheumy as it worked great. Looking back now I think maybe I just needed the dose reducing.

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I’m on Benepali - it’s my first biological and apart from the pain injecting it, it’s been good. Started on prednisolone, sulfasalazine, MTX right up to 25mg... Benepali is the only thing that has had any impact on me overall.

Definitely worth trying things again. First time I tried Benepali I wasn’t in a good place, really struggled with the injections and had virus after virus so was terrified of it tbh. Second time round (until now!) I have had no issues at all.

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What issues are you having now is it the lung issues?

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Yep. Tightness across chest, shortness of breath, dizziness. Also had a virus too and had been feeling particularly wiped out before hand. When I first went to the gp it was really with the viral symptoms but she totally focused in on the breathing, said my lungs sounds crackly. Noted that on my previous 3 GP visit over the period of 18months they had also sound crackly so then started to ask questions. I think tbh, life has been so tough that I have put down a lot of the tight chest feelings I get down to anxiety and sometimes even heartburn! That and the fact that I am ridiculously aerobically unfit!

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Awe no bless you. You’ve had it pretty bad then these last 18mths.

Have you been on the benepali for 18 months?

I’m not surprised your aerobically unfit (your words not mine might I add lol) when your struggling to breathe

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Lol!! I know right?! The funny thing is the Benepali has worked so well it meant I have been more able to get more active again... I love cycling with my kids when I can (flat places only for now 😂) I have also had no sick days for 11 months till the last fortnight.... Anyhoo... guess this is just the next step I need to try and sort out.

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And I’m thinking back... it pretty much has been exactly 18 months since I started it but I had a big break this time last year when I had loads of colds and stuff and couldn’t get well. It was all pretty new and I got scared about taking it when I was already feeling so poorly.

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🤞you get things sorted and soon hopefully. Let me know how things go on Tuesday

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Hi, I was in hospital with pneumonitis and after numerous blood tests, the only thing that came up positive was an excessively high rheumatoid factor. At that time I had no joint pain but he referred me to rheumatology. I was under a rheumatologist for inflammation in my head two years earlier. After seeing the new rheumy doctor she has diagnosed me with MCTD but I'm not too happy with that as inflammation going round my organs, I now have joint pain, I have an overlap of different diseases. She put me on hydroxy and occassional steriod jab. My kidney gfr is at 53 which my own gp noticed and not the hospital which has also annoyed me, it was the hospital that did the bloods. I have been checked every month and it's still at 53 which could be stage 3a ckd. I was told if the next one is still the same she will have to contact rheumatologist as it could be the hydroxy or it could be inflammation in my kidneys. I have had pneumonia twice as well, I also worked in a primary school and put it down to all the wee germs flying around. I got made redundant last year because of these illnesses and I haven't had any more lung problems (touch wood) but the flares keep coming, is it the kidneys now, time will tell? But as you all know, rheumy docs will only deal with their problems, I've been sent for X-rays by her but told me it wud be passed to my respiratory doc, I've also been referred to a gastro doc as well. I guess they all have there own fields of medicine and mine won't comment on any other problems but her own but she did think my problems are all linked. Time will tell.

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My saga started in the eye department There I was re-referred to the hospital every month when re- presenting myself at my surgery with a very inflamed eye. No change in condition, 8 ?different locum consultants; all took a meticulous history ( Not re-reading past notes, it seems) Interestingly, their prescriptions were much the same .Had none of them come across the idea that to repeat the same treatment, expecting a different outcome was just not a good idea.

My 8th consultant read the notes back for the 10 years I had been attending the department. ' You've had this a long time'... and referred me to the rheumatology clinic

There I was referred to ENT, cleared and back to rheumatology and given a prescription for methatrexate. All well and good, I thought, until I learnt that, although the condition was considered to be deteriorating by the ophthalmology dept. it was the rheumatologist who was prescribing, based on the assessment in the eye department, I discovered later, that as different computer systems were used in these 2 departments, few/ no results seemed to arrive in rheumatology ( although the prescription of methatrexate emanated from there )

So the poor rheumatologist was prescribing without being kept up-to-date.I tried to find another hospital where the computers were talking to each other...... In the meantime, I rang the rheumatology department. I was pretty fed up.'I am on my own here, it seems. Where do I go? What can I do?' At this point, for the first time ,Rheumatology learnt, from me, the patient, that the eye department considered the condition was deteriorating. They have started to communic\ate. maybe there is hope but why should it have required me to have hysterics down the telephone?.... and in how many other hospitals do we have more than one department involved with little or no communication between the two

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I was put on mtx a little over a year ago. Shortly after, I started having strange breathing/lung problems. Nothing serious, but made me concerned. I told my rheumatologist about it and she brushed it off along with my hair loss and depression. By October I had had it and asked to be put on a different medication and I was put on sulfasalazine. My lung problems stopped, my hair started growing back and the black cloud of depression lifted! Doc's response was that for some people mtx is toxic. Thanks doc for letting me suffer for 10 months and almost becoming suicidal!

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Jeepers Sharon... I was the same on MTX. Hair loss, depression, severe nausea. It’s tough at times knowing all the things to watch out for. I had no idea my lungs could have been effected too. How are things on sulfasalazine?

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Hi. I did mtx injections and felt like crap for two days after the shot. It is, after all, an old chemo drug so maybe that's why. Right now things are good on sulfasalazine. It was tough in the beginning because you start slow and work up to 4 pills a day and I think I may have rushed it. I got so sick that I just started over - much slower and that worked. Right now, I do not have any pain, no depression, and no hair loss. Sadly, we all know this can change in a heartbeat! It escapes me why these rheumatologists treat us like children and don't let us know about the side effects of these drugs. Most of my answers have come from blogs like this one where others share their true stories and experiences.

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Well just back from first lung function test. Lung function definitely reduced. Didn’t show any improved function after sabutamol (sp??) inhaler.

So definitely something going on. Next step will be X-ray and another meeting with GP. Rheumatology nurse was supposed to get back to me too yesterday but didn’t!

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Hopefully my story is more of a positive one ......

I have UCTD with lung involvement. My RA (specifically UCTD) did not started with a joint issue it started with a persistent dry cough which went on for a number of weeks. At the time I thought I had picked up a bug as I was long haul flying with work at the time.

Then the cough stopped and a couple of weeks later I could not get out of bed as my joints had all frozen up.

To cut a long story short I am under a Prof at a teaching hospital - my local hospital being classified as crap by my GP and myself! Luckily for me the Rheumatology Prof started his career in the chest clinic and so put 2 and 2 together within an hour.

I was on Azathioprine but it failed to work. So was put on MTX. Sounds mad when you read all the stories but I am a scientist and the Prof explained the stats and basically the risks were less than 5% in total.

MTX has given me my life back and 5 years down the road the lung damage has remained v mild and there has been no progression in my RA.

I was told that if MTX is going to cause problems it tends to do so in the first few months and thus I was told if I developed a persistent dry cough I was to come of the MTX straight away and go to my GP re getting a chest x-ray.

I am under both the Prof in Rheumatology and the chest clinic. As my condition remains consistently mild I have a lung function test every 9 months.

I do aqua aerobics and swim like a nutter - that way I get my cardio 3 times a week.

I hope my condition remains mild and stable and I try to remain in the 'glass half full club'.

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Hi Joy! Thanks for your positive, glass half full response!! Sounds like you are getting some great care. Enjoy your swimming. I find being active so helpful when I can. Stay well 😊

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Thank you F123. Wishing you all the best too!

Joy x

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A Little over a year ago I came down with a bad cough. The doctor sent me for x-rays and there it was discovered I had a mass in my lungs. I then was sent for CT scan and a pet scan. Luckily it is not cancer but a lung nodule. My last CT scan showed that it has not grown so that is good! I do feel like I struggle with catching my breath when exercising. I am not on methotrexate, I am on Humira. It’s so ridiculous though that even though it’s all auto immune diseases, every doctor only wants to treat a certain part of the body. It’s very frustrating!

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My rheumatologist listens to my chest at each visit. I developed a cough a few months ago and was sent for a CT scan. If you have any conerns you should raise them.

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That’s great thank you. I called my specialist nurse to let her know what had been going on and I was as really impressed that she called back before 9 this morning to arrange for me to come in and be seen by the rheumatologist on Tuesday! Never had such a quick appointment ever. Glad they’re taking it seriously though.

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Let us know how you get on ?

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I will thank you. Had initial lung function tests yesterday which showed reduced lung function and no improvement with asthma meds so I have no idea what will happen next.

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Hi there... so I was at the hospital for ages on tuesday. The rheumatologist was really fantastic and seemed really thorough. She did a chest x-ray initially which was clear but wants to do further tests in 6 weeks time when hopefully the virus I have had has cleared. She suspects I’ve had a flu virus which has given me varied symptoms and effected my chest and breathing but also recognized that there is a risk that the medications can cause issues in the lungs. She wants to be cautious so says the further tests will show us more. Thanks again for responding and asking!

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Hi Fi23, my ra was diagnosed after getting fluid on my lung. I now have interstitial lung disease along with ra. I asked my rhem to refer me to chest clinic because as you say it is related, for this reason I am not on mtx. It took them 6 months to diagnose my ra & start me on sulphazaline. This was 9 years ago and my lung probs & ra are no where near as bad, I also have asthma. I think there is a prob with docs linking symptoms & side effects of ra medication. Doctors are here to help but at end of the day its our body and we know it best. Hope you get sorted soon

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Cheers Cheryl. All good to know! 😊

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