I have been suffering from a dry persistent cough with breathlessness for a year now. The frequency of the cough is increasing and getting uncomfortable and l am becoming more breathless. I have been on Mycophenolate, Steriods and Plaquenil for the past 11 years. I saw a consultant in May 2012 and he ordered a chest X-ray. I see a rheumy once a year. (So far l have seen 3 different consultants in the past 3 years)
My appointment was last week and l was quite prepared and asked the right questions including the results of the x-ray. I was quite upset but not shocked when it became obvious that there was no record of my x-ray results in my 2012 notes! More baffling was that the current consultant could not see any referral of my concerns in the 2012 notes. I could only conclude that the last consultant had not even bothered to write any of the above in my notes. I am not surprised because the consultant l saw in 2012 was cold, distant, detached and dismissing of my concerns.
A CT scan has been ordered and l will be ringing the lupus clinic for my results as I am too anxious to wait another year.
I am feeling fed up and having a persistent cough whilst having headaches and joint pain is keeping me wide awake.
On a cheerful note this consultant was more human and cheerful.
Regards to all
Eunidarling
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eunidarling
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It comes to something when we can't rely on our consultants - but sadly that seems to be the case. You have to try and be on the ball (not easy when we are unwell ), l always chase up all my results until l am happy, l learnt this after becoming so ill due to late diagnosis, l no longer trust any -body in the medical profession and try and learn and educate myself as much as l can about my condition - that way l feel as if l have more control over my care. Hope things improve for you and you get some answers from your CT Scan, ask all the questions you want to - write them all down so you don't forget anything and if possible take somebody along with you to any of your consultations. Take care
I am also taking the above medications. I am currently on 2000mg of Mycophenolate oer day - which can cause some of the breathlessness.
I had a CT scan done and a pulmorary lung test when my breathlessness got so worse even on the least bit of movement lol!
Everything came back fine with my lungs, but due to the reduced red blood cells they noticed that i was slighly aneamic. They have prescribed 350mg of iron ( i should take them 3 x per day) but they were upsetting my digestive system and now take one every other day.
I have noticed after a couple of months i have improved greatly.
make sure that you are given the above scans and query this with the Consultant as you may also require iron.
Hi, I agree with patti, Write All your questions down a few weeks before you go and take the list out when you sit down. Then say "I have several questions I would like answering please" as though you were just talking to a Friend. They Are Human, trouble is a lot of us think 'they' know best - well not allways, YOU know YOUR body better than anyone.
Make a Diary starting TODAY of any and all the pain, problems and where the worst pain is and times of day when it is at its worst. Who told me to do this - MY consultant ! YES I have the perfect doctor for me. I Allways ask Him, as soon as I go in, HOW HE IS - no one thinks to ask that, I also ask how his family is and take time to get to know him and any new doctor I come in contact with. I am 65 years young and it has taken OH so many years to get a handle on Doctors. I should have listen to my dear old Gran - I used to be frightened to go to the doctors - she said "they are only like us only know different things, imagine him in his Pyjamas and with a teddy bear in his arms ready for bed " I used to laugh so much and then I would walk into the doctors with a smile, not a frown and I think that makes "them" take notice of you a bit more. Who would want to sit there and every time the door opened you knew that someone was going to frown at you - I know it is their Job, but would we be as misserable with our own work mates? And yes if it makes you feel more confidence take someone with you, but Do ask if it is ok if they come in with you and tell him/her why, you will be very surprised at the reaction - Doctors have NO idea that some of us are intimidated by them - don't forget - LIST, PYJAMAS, TEDDY and How are You? Good luck my friend.xxx
Wow, I am feeling more confident reading your advice. I am going into my next appointment with a different mind frame and I think my next visit will be very rewarding for both the consultant and I. (Smile)
I had a dry hacking (non- productive/no phlegm) cough for a year!...it was so bad I used to choke. I thought whooping cough as I developed the 'whoop'. GP thought hay fever as could see the phlegm at the back of my throat. The hayfever meds didn't work and my symptoms got worse...felt really ill at the beginning then it was just the cough but then I had racing heart, thumping heart, dizziness, crushing pains and couldn't lie down. Doc looked into heart issues and had some dodgy readings...after months of different ideas he referred me as pericarditis is common in Lupus but it took about 4 months after he referred me to get an appointment and months after that for results...after all that time my body had healed itself as there is no treatment for pericarditis anyway. The Cardiologist said, why are you here you're a young women, your results are fine!...are you stressed?....NOOOOOOOOOO! (only when I have to spend my afternoon in the company of doctors)
Anyway, I asked the Lupus specialist if it could have been pericarditis like my gp said but that it had cleared by the time they did the tests and she said it was possible.
Pericardits isn't dangerous, so fair enough but not once did the cardiologist stop to think how horrible it was to suffer with this terrible cough for almost a year...fine, tests results were clear...doesn't mean the suffering from the symptoms wasn't real!
I'm convinced this is the NHS's plan...leave it long enough and people will either heal naturally (good, but sometimes you need a helping hand), or we'll 'disappear'!...both are good for them as both more cost effective lol!
Hope you feel better soon, my cough just gradually disappeared.
Possible you have slight inflammation (that won't come up on scans) on heart (or lungs or both (not necessarily dangerous!)) Do you get pleurisy/chest infections? struggle to wee?
Doc explained that if heart is a bit inflammed it rubs on the lungs and makes you cough, which will explain the dryness as not necessarily lung related. People with Lupus can get it from time to time.
Good luck with everything and take care, fingers crossed you get it sorted
HI, just to say keep on at them about your symptoms. I've had similar problems for 2 and a half years now. Kept being fobbed off. Finally a new consultant did a bronchoscopy in January this year and found a massive thick black sticky mucus plug in my right bronchus. 'See, I told you I was ill'! They're all still squabbling about the diagnosis but at least I feel I'm being taken seriously now.
And, most important, please note, all my Xrays and CT scans were NORMAL. Nothing showed up until they actually went into my lungs.
Of course, none of this may apply exactly to you. But my point is that it's important to persist if YOU know you're not right.
I was with my rheumy just yesterday I ask him about the dry cough I have had for the past couple of years. The cough comes in flairs where I can cough for days on end when I get to this point my gp usually gives me steroids which always settles it. It stays quite for a while then gradually it comes back. My rheumy said yesterday it's not related to lupus it's breathlessness with out a cough that would cause him concern. So I don't know, my gp thinks differently I'm going to see a respiratory consultant next month maybe she will be able to shed some light on it. I'm glad I'm not on my own with this cough I was beginning to think I was as I never see anyone else post about it.a
Hello Copdber, I am also glad I asked this question because this symptom has always been dismissed. Finally, we have been given excellent advice as above.
I plan to be assertive, calm and make sure I get a logical conclusion to this condition.
I wish you all the best at the respiratory appointment.
I have had a really bad chest for last 5yrs, I stopped smoking 7 yrs ago. And was diagnosed with COPD. I was getting worse and worse and thought I have stopped smoking 7yrs this is stupid I was getting bronchitis every couple months so constantly on steroids and antibiotics .I decided to check side effect of my meds. Turned out perindapril for blood pressure can cause cough, chest infection, wheezing etc. so I stopped it. It was another 18 mths before my next chest infection. My doc agreed it prob was tabs. I think it is always good idea to check meds.
I have had a terrible cough for weeks, I do also have COPD . I am on gabapentin and amitryptalene. I am sure are read that gabapentin can cause cough. I went to see doc yesterday cos I had such a sore throat and my cough was worse despite being on steroids for 3 wks. He said my throat would clear on its own, and never even looked at it. All my glands are swollen in my neck. I am a retired RGN so am not stupid.
Last time I saw him he said that he thought I had prob had lupus and fibromyalgia for a long time, I can prob go back 2 yrs at least. When I saw him yesterday I asked him about my last lupus bloods, he said they were negative this time and my ANA positive. He then said can't understand why you have got so bad since diagnoses. Durrr you told me prob had it ages. See my rheumy next month. Do many people get pos. then neg. lupus checks. Think I will keep a diary. My doc has been so supportive but yesterday a bit distant.
I had the same thing - was given an inhaler but did not use it. The instant I think the cough is starting in the morning I sip warm water I can now take a tiny drop of Turneric in it. Warm tea helps too. I use Jakesmans menthol sweets. As soon as I begin sucking them they loosen my throats and the menthol helps my breathing. I also keep Broncho Stop nearby or their pastilles - hope they help. I have started seeing a Medicinal Herbalist privately and feel so much better - he really cares, listens and follows up. Have had a year of great indifference and dismissiveness from most Docs - this guy treats ALL of me. Good luck
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