I've had a persistent dry cough since the start of July approx.
I went to my GP around 20th July and she said my chest was clear. Probably viral. And I'd hurt my self coughing so the pain was musculoskeletal.
I took a course of steroids for 4 weeks from then, as feeling like no energy and a bit run down with the children off school for the summer.
Still coughing.
Went to GP two weeks ago. Different doctor. Chest clear. Costochondritis. Pain in chest is inflammation. But sent for a chest X-ray to be sure no underlying issues or swollen lymph glands.
Just called at my surgery - chest X-ray is clear, no action required.
But still coughing.
My chest is clear.
X-ray was clear.
I'm not coughing all of the time.
But when I do cough it quite violent and loud, it alarms my children as they think I am choking every time.
I have only coughed up phlegm once or twice but otherwise 10/11 weeks of dry cough.
I'm on Hydroxychloroquine, 3g of MMF and mepacrine.
Any ideas?
Apart from the cough, a couple of styes and lip sores, I am relatively well. Drugs combo is controlling the Lupus.
All I can find is this NICE article which says if dry cough stop MMF and seek specialist advice????
I have a diagnosis of SLE but recently a few things have thrown Sjogren's up.
I initially had a positive ANA, ENA and anti-RO blood test, but I thought the anti-RO was found in SCLE - my initial diagnosis and sunsensitivity. I had no idea it was also linked to Sjogren's until Twitchy told me recently.
But I had the Shirmer's test in April and all fine. Plus I have plenty of saliva etc.
I have very dry skin though and have suffered from it since a baby - eczema, asthma and hayfever from childhood.
Hello. I did tell Dr C about the costochondritis and chest X-ray at my first appt with her on 13th. Can't remember how much detail we went into. I will speak to Dr K in London at appt in October, as Dr C never told me when we'd have a follow up appt. definitely on my list though. X
I have Lupus and Sjogren’s A couple of years ago I had a persistent Dry Cough I was referred to the Hospital Respiratory dept who treated me for Reflux They gave me Lansoprazole And Gaviscon It miraculously stopped my cough I never felt I suffered from indigestion but it worked I just take the Lansoprazole in a morning now and it keeps it under control Don’t know if this helps or not
I was going to add silent reflux to the suggestions above - do you take a PPI or Ranitidine consistently? I do take the max of Ranitidine daily and this way I'm confident that it's not my reflux. But heck it used to be relentless when I was younger - I'd go to GP to get chest checked but usually it was clear. I did say it's worse if I bend over to pick something up - then I'll be coughing for ages - occasionally make myself sick. The gp did then mention reflux but didn't give me anything for it apart from Gaviscon maybe.
This was all well before my diagnosis of RA/ Sjögren's though. Reflux is well controlled now.
But the dry cough I get now is another matter and is entirely Sjögren's related as this is where my dryness sits - not at front of my mouth but at back - starts in eyes and nose and goes down back of throat then trachia then all the way down to my backside.
I've had years to work this out but it's actually only really dawned on me properly quite recently. When I fail to blink tears (not enough good quality tears to blink) this triggers an autonomic response from my parasympathetic nervous system which triggers a chain reaction throughout my body. I explain mine just in case it's relevant to yours too X
I have never taken anything for indigestion or reflux, ever in my life. Even when pregnant, I never suffered. I have no idea what PPI is???
It is very interesting though, that when I was diagnosed, I'd been suffering from an extremely sore throat. It felt like I had swallowed glass and had been going on for months really. I got referred to an ENT appointment quite quickly. I had the camera up the nose and swallow straight away. The Consultant said he couldn't see anything that would explain my symptoms and certainly nothing sinister to worry about. He said it's either part of the lupus or you have silent reflux. I had only ever heard of reflux as with friends babies etc. I dismissed that, as I really couldn't think of me having indegestion or reflux of any kind. I didn't ever see a follow up letter form him and neither my Rheumy or GP ever mentioned it again.
My sore throat did improve with the hydroxy and it's never been that bad since. I get a sore throat when flaring or run down, but I have never thought of it as a constant thing. So I always thought it was the lupus, as the lupus meds seemed to control it.
But now, here I am with a persistent dry cough for 11 ish weeks and no explanation and you lovely people are throwing a few new ideas my way.
I need to look at what reflux is, silent refux and the document below talks about GERD which I have seen mentioned here a few times and I have no understanding of it.
Thanks again Twitchy. It's a terrible day here today. Husband is treating us to a takeaway tonight, as after a very stressful week, thinks I deserve a night off cooking. Bless him.
Thank you! I have heard of GERD but have no real idea what it is. I have taken a quick look, but it appears quite heavy, so I will read when I have more time to concentrate. Friday evening after the week I've had is not good.
I have found this too - slightly different to GERD.
I have felt what I think is a post nasal drip just a couple of times.
I do take 2 antihistamine daily.
I have suffered asthma before, but not used an inhaler for about 7/8 years???
History of asthma from my Dad's side - lots of the 8 siblings have asthma and serious lung issues, involving long stays in hospital throughout their lives.
But reading this has scared me a little, as it talks about a risk of cancer if not treated and my Dad died 8 weeks after his diagnosis of Esophagul Cancer.
Hi Wendy When you pick up...asked rheumy nurse today about dry cough ie caused by our meds or post cold/flu, hopeless😬😬😬😬😬 😵😵😵😵 no answer, still hacking away & differently not the reflux kind, dry scratchy today... Have a good weekend...ML 😁
I would try not to worry about the cancer risk as you say you've had the scope down to have a good look at what's going on. If there was anything flagged up there they would have followed this up and put you onto meds. I've been on omeprazole for the past few months but am tapering off them at the moment - unless absolutely necessary, they don't like us to be on them for too long because of other problems they then cause.
As Twitchy says, it certainly sounds as though you could be becoming more 'sjogrensy' as time goes by. This is what has happened to me over time. I had lupus when I was younger complete with all the typical lupus symptoms ranging from fever and rash, joint inflammation and pain that would flit from one joint to another through to liver and kidney failure - I used to test positive for anti dsDNA but don't any more out of interest - I am Ro positive though and my doctor has in fact told me that Sjogrens can present more like lupus in younger patients and it's possibly been this all along but the symptoms became more Sjogrensy once I turned 40.
I have periods of cough with a crackling, wheezy chest sound - I was diagnosed with asthma about 11 years ago but it's not really true asthma and is more likely related to the Sjogrens - I don't get inhalers any more as they don't really help at all. I also get that aching pain around the ribs and chest which comes and goes - I don't know if this is costochondritis or just fibro type pains. It's hard to get any distinct answers. I don't think the GP is the right person to be talking to about this - I know you are not in a good place with your rheumatologist right now but is there any way you can speak to the rheumy department or a rheumy nurse about your concerns? (We have a rheumatology helpline at my local hospital).
Thank you for your lovely reply. It's just been an emotional week for my family and then thinking about my Dad. It's Friday and I can't even have a glass of wine, as not allowed on mepacrine. I don't smoke. No alcohol since start of June. I will discuss with Dr K the private Rheumy I am seeing on 27th October. There is a Rheumy nurse and I think a helpline - but I think that is a misnomer! Chocolate tea pot springs to mind. Just not specialised enough. I did discuss some of this with my new NHS Rheumy on 13th but she never commented and I've not had her letter yet - so maybe she'll come up good after all. Coughed tonight and heaved as it caught. But I never get acid in my mouth or heartburn etc. Just the odd belch -which I guess is normal? So much to consider. Your information helps a lot. Thank you. Wendy x
Wendy it may well be worth getting some Ranitidine over the counter. It's not a proton pump inhibitor so side effects unlikely and it has really helped my GERD and gastritis.
The reason it would be a good idea to protect your stomach and oesophogus - particularly when you're on such big meds - is because, occasionally, we can have silent reflux - as Sjogibear has recently had. But also, if Ranitidine helps your cough then this is a really simple and harmless way of finding out? If the cough dies down then you'll know it's silent reflux and if it continues then it obviously it isn't reflux related. This is what my ENT told me to do and his area of expertise is throat cancer. He says that I should just stay on 300mg Ranitidine daily to protect my throat and oesophogus. He is confident that this and the odd Lansoperazole as and when is enough protection for me
As you know I've posted recently about how my mouth isn't actually very dry at all - certainly not at the front. But the lip biopsy proved that I have very longstanding Sjögren's so please do tell Dr K about your friends here and what we are saying. The drugs you are on may be masking the more obvious features as they did for me. X
Thank you Twitchy. More to take on board. The Lupus is scary enough. But I'd totally dismissed the sjogrens. I have found this article - although I don't know how reliable the source - says inflammation of the spine & sjogrens. Plus the facial pain. And I experienced burning in my arms at Sports Day etc. Does all this fit? Only time will tell. X
Thanks for this link - never seen it before and that's some admission from a rheumy nerd like me!
My first symptoms - prior to RA like onset - was warm glow in my arms - like a hair dryer on full heat - pointing at parts of my arms. It was so random and I assumed it was a strange hormonal thing since I was in my early 40s then. Then came burning soles so I could barely walk to the bathroom without groaning in agony.
Later came facial pain, BMS, awful rancid taste and some numbness - droughts through my legs, burning and freezing extremities etc . These are the constants now along with tinnitus and small fibre neuropathy throughout my legs and arms.
Sjögren's could possibly be your disease instead of SLE (since you aren't seropositive for Lupus)? - and with a positive Ro you'd be seropositive Sjogren's. SCLE can overlap with Sjogrens - they all can!
The thing is that, determined as you are to find a very clear distinction between these two rheumatic diseases - I really don't really believe this exists unless you have Lupus Nephritis or very severe sicca. The majority of us seem to have these things in shades. For example I had butterfly rashes all through my childhood - was once asked by a big girl in the playground why the birthmark across my face kept coming and going?!
My ANA is now a clear positive with pattern of Scleroderma - but not the more specific markers or the classic symptoms. I still think I have shades of CREST and Lupus and the vascular doctor didn't dispute this but my main disease is Sjögren's If you had dry eyes then, with a plus anti Ro that would be enough for a diagnosis. But without dry eyes this diagnosis wouldn't probably be forthcoming for the time being. For some of us it takes menopause for things to become finally clear. But being Zebras is the fate of many and - in comparison to severely diseased joints or advanced kidney disease or losing all our teeth or badly damaged corneas - perhaps these shades of many disease aren't so terrible? X
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Ps my Schirmers test was normal but my slit test / tear break up showed I have almost no tears. Rheumy's can't test for Sjogren's as I learned for myself the hard way!
That is such a good idea and might just ease things. I'd not heard of silent reflux before and had never even knowingly had indigestion - not even when I was pregnant so it's one of those things that can be happening without you knowing. I also sleep with numerous pillows arranged in a wedge shape so the upper part of my body is raised and not just my head. This can help if reflux is part of the picture.
That’s such an interesting reply - I think that the same might be true for me too. This could explain my lupus like disease pattern without the necessary antibodies. My rheumy nurse wasn’t especially interested when I mentioned it in December - they have a fondness for shrugging and saying ‘well, you’re on the right treatment anyway’. I have Small Airways Disease which is much more common in SS than in my diagnosed SLE/UCTD. I maintain an open mind - I just hope that my doctors do too. X
I think it's easy to blame Lupus for every ailment, and indeed it might be related to the disease or medication. Viral upper respiratory coughs can go on for 12-18 weeks. Generally a spirometry breathing test (usually done at a GP surgery) can be a useful tool to help distinguish between the different respiratory problems. If the chest X-ray is clear and the dry cough persists, then maybe one would be useful. You could ask maybe?
Thank you for your thoughts. It could be so many things. And I think the GP is just like, well chest X-ray is clear, so that's the end of it. But it's embarrassing when it happens in public and I heaved really badly with it tonight. Don't want to be like this forever. No wonder I've developed costochondritis. I've never heard of that test before. I've done the asthma thing, can't remember what that's called. Dr K stated reduced air entry both sides. But no further comment and I just presumed it was due to my history of asthma. May be related, may not. I want to see my GP before I go to see Dr K in London at the end of October - so will discuss with both. Thanks again. Hope you are doing OK and enjoy the weekend. Wendy
Hi. No appointment, left a phone message to call me... I wanted to know if the scratchy throat & hacking cough was due to meds or sjorgrens, no clear answer for that, I live in hope. The next was if I should come off the mycophenolate mofetil for a few days around getting the flu shot as I had a bad reaction to pneumonia, again no clear answer I.e. maybe, tried to find out about my blood results, didn't know that either, ho him, not to productive... Will read up on all the informative contributions above now...did read 25% of SCLE and many other autoimmune crosses to other autoimmune such as sjorgrens... Big hug ml
I have also suffered from a dry hacking unproductive cough all summer. It actually started on June 10th! I have been to the ER, my ENT, a GP, and a Nurse Practitioner. I have had a chest X-ray (clear) and a CT scan. On the CT I found out I have a few foci of emphysema (YIKES) and atelactsis of the base of my lungs. That means collapsed. But there is nothing wrong with me they say! I am beyond frustrated. I have tried everything under the sun from allergy pills and nose sprays, prednisone(only for one week), going to the desert sun, and now I am inhaling Advair twice a day. I don't think it is helping. My throat feels so irritated and sore but it is down lower in my bronchial area. I have an appt with a respiratory dr to test my pulmonary function in Oct. So thats my story. Really had a fun summer--not!! I was too tired to get up out of my chair.
I have a question for you: Does your cough wake you up at night? Does it get worse as the day goes on?
Mine doesn't affect my sleep and upon waking I am not coughing. Its like it gets woke up as the day unfolds. Weird. I truthfully feel like I have sores down inside my windpipe.
My main airways are fairly ok too but my small airways are shot to bits. If you read up on it, you will find that collectively these tiny bronchioles make up a significant % of your airways. Inhalers are poorly effective as the drug simply can’t get far enough into your chest. I’m on quite a few inhalers and you may need to try others to get one that helps. Unfortunately I am allergic to the one that I think would have been really effective. PFT’s should give some clues - don’t be fobbed off. They’ll tell you that it’s all normal because they see so many people with lung cancer and other advanced lung disease but these things are best treated early. I’ve been told several times that my PFT’s are normal by doctors who haven’t even glanced at the results . .
I'll be the gothic one again. With SLE, the sack inside the lungs can be effected by antibodies. 'Back in the 20th century', specialists were able to diagnose this by listening to your chest instead of sending you off for futile scans that cant detect microscopic activity. Its not a serious condition - but again - upping the immuno- suppressants fix it.
Be sure to tell your specialist about it when you see him.
I'm fairly new to the world of rheumatology connective tissue disorders. I was finally recently diagnosed with two overlapping rheumatoid connective tissue disorders, which are not rheumatoid arthritis. Lupus hasn't been ruled out because there is no specific test for it.
I just got started on hydroxychloroquine or Plaquenil 2wks ago. I already have a fussy bladder and Plaquenil seemed to cause bladder retention plus some other nasty side effects. And also, my seasonal allergies had become bad and I was developing a virus, so I stopped the Plaquenil for now.
Sorry this is my point. I was first diagnosed with connective tissue autoimmune problems earlier this year, and about 2-3 months ago noticed that I have this annoying dry unproductive cough. I have also been diagnosed with costochondritis a few times, and prescribed steroids for it which works well.
Last week I started feeling very sick with either a bad cold or virus. I saw my doctor on Friday. She believed it was just a virus and not bacterial; however, she did give me a prescription for 10 day course of Doxycycline antibiotic. She told me to wait to see if the virus would run its course before starting the antibiotic. Well, I was feeling so lousy that I started the antibiotic immediately on Friday, and have noticed that the dry cough has loosened up and is not painful and also my breathing has improved greatly. I too was sent for chest x-rays twice this year and both times my lungs were clear.
I have a feeling that when this course of antibiotics ends, I will go back to the decreased breathing sensation and the dry cough, but I hope not. It just seems like a dry cough is part of the package with these Rheumatology connective tissuedisorders.
So I guess I'm suggesting that you may want to see if your doctor would prescribe an antibiotic for an upper respiratory infection, or other type of infection, to knock out that cough.
I hope this helps. I am not feeling my best here with a virus/ infection and on my 3rd day of antibiotics. But your topic of dry cough really caught my eye because this has been a very annoying problem for me also and these antibiotics seem to be helping that.
For some reason I couldn't see that anybody had replied before I did before. I was diagnosed with Sjogren's and have had gerd reflux for many years, plus IBS-C.
So lots of dryness... and it makes sense what everybody is saying that a dry cough would go along very nicely with all the rest of this dryness,.... unfortunately!!
Has anybody else ever had drying of the bladder or bladder retention? This is a new problem for me to go along with my already fussy bladder, urgency and frequency.
Hello Lou! Been a busy time and I'm behind here! I hate not being able to catch up here every day. I've had a lung function test back in 2014. My chest, hands and feet were xrayed then too - I guess as a base line. But no investigations since then, until this chest X-ray. At the moment, as things stand, my priority is a Neurology referral. The MRI issues and the neurological symptoms & headaches etc worry me. I'll see what my new Rheumy's letter says and then take stock again. I will reply to your message ASAP. Xx
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Sjögrens Dry Cough
Chest problems and Lupus
