Wegeners- Persistent Cough with loss of appetite

[Robb]

Hi-

My wife has recovered well from WG since May 2011 and she has rarely suffered from infections due to her low immune system- This past 6 weeks she has developed a cough which is like an irritation- no mucus- and has lost her appetite for food although she does eat in small quantities.

Just wondering if anyone with WG has or is experiencing this type of symptom. Her GP checked last week that her lungs and chest seemed OK. and did not recommend antibiotics. She is due a monthly blood test on Monday.

[Suzym2u Moderator Vasculitis UK]

Maybe give the doctor a ring who treats your wife for the WG , just to be on the safe side. It is something that probably should be nipped in the bud if it should develop into something more serious. Do you have a contact number or a specialist nurse you could talk too. Robb.

best wishes

Susan

[hamble99b Volunteer in reply to Suzym2u]

I agree, always get new symptoms checked out.

[Robb in reply to hamble99b]

Thanks Hamble-we will keep on top of it.

[Robb in reply to Suzym2u]

Thanks Suzy- we will check after her blood test on Monday-

[Nadine99]

This is no help really but my husband has WG and often suffers from this cough, good xrays but no solutions. The cough comes and goes and drives me mad!! The only way it calms down is for him to sit up more in bed, it mainly happens at night.

[Robb in reply to Nadine99]

Thanks Nadine- keep strong yourself too!

[AllyGY2013]

I often have a cough and indeed have an annoying one at the moment. I too lose my appetite for food and drink. It aggravates my throat and can make my cough worse.

I do eat but tend to nibble on what I fancy and I take note of all that I drink to ensure I keep my fluids up.

As my cough subsides my appetite restores.

My cough can develope into a chest infection but have learnt to recognise this. If you are in any doubt though seek medical advice.

Hope she recovers quickly,

Ally

[Robb in reply to AllyGY2013]

Thanks for your comments Ally

[luggsey]

My mums cough turned out to be pcp pneumonia, mum was immune suppressed and should have been on a long term antibiotic.

Strongly suggest you get it checked out and confirm no infection.

[Robb in reply to luggsey]

Thanks for your comment Luggsey

[MAC12]

My own experience of WG suggests that your wife may have a chest infection and there is a possibility this could be a staph aureus infection - common in those with WG and something that can damage the lungs. The only real test a GP can do for this is a sputum test but - again this is my personal experience - this test can show up negative when there IS a staph aureus infection present. The only sure way of testing for this is with washings from a bronchoscopy which is not a procedure a GP would carry out. So it might well be the safest bet for your wife's GP to prescribe a course of antibiotics suitable for treating staph aureus - just to be on the safe side. Personally this is what I would ask for… I hope she recovers soon.

[Robb in reply to MAC12]

Thanks Mac- for your detailed reply

[jeang]

Hi - I too have WG and always seem to have a cough. I was taking Ramipril tablets which made it a lot worse. Since I have stopped taking them, the cough has got a lot better. Is your wife on them?

[Robb in reply to jeang]

Thanks for your response Jeang - no she is not taking anything at the moment- She is only on Cellcet 500mg twice daily and Pred 2mg daily reducing to 1mg in 5 weeks then hoipefully no Pred in 3 mths.

[Lauriescott1]

I too have a background cough although not necessarily a problem or persistent & was told by my Consultant that sadly this was a known side effect of taking Ramipril

[Robb in reply to Lauriescott1]

Thanks Laurie-

[Greenkit]

Thanks for posting this.

I have had "The Cough" since last October after having the flu & pneumo jabs.

A visit to the Dr in November i was told it was "viral" just to drink lots of water it will just work it's way out of my system.

I had an hip replacement just over two weeks ago and "The Cough" just got a lot worse a few days after i got home.

I had an emergency appointment at the Dr's yesterday after a good check up my lungs are clear but they realised coughing all the while was making me tired so i have been prescribed 7 days of antibiotics and if i still have the cough i have an appointment next week to see the Dr, i will then be sent for an X-ray.

I had a similar thing last year but this was more in the throat with it been difficult to talk as i sounded very hoarse also like i was on 100 cigarettes a day...i dont smoke but was constantly told to pack up....... I went to see my consultant and after all the tests it came back negative for Weg's even though i know it is this that is causing me the problem.

I was given a nasal spray "Avamys" to use every day till the end of September this stopped most of the coughing but i really would like to know what the cause is so i can get a cure once and for all.

Hope your wife is feeling better real soon

XX

[Robb in reply to Greenkit]

Thanks Greenkit- I hope things do improve for you-and ood luck with the hip re[placement physio and walking-

[AndrewT]

Do get this 'checked out'- if only to be on the safe side.

Best wishes to you both

AnderewT

[Robb in reply to AndrewT]

Thanks Andrew- we will

[SandieB]

Hi there i have had my cough for nearly 6mths now, had Antibiotics and sputam tests and the doctors are now saying it is caused through a nazal drip going down the back of my throat the only relief i get is when i am in bed believe it or not. I suffer with WG and have done for many years now and have been told nose trouble is one of the side effects. Hope you are soon feeling better......

[Robb in reply to SandieB]

Thanks Sandie- I do hope you too get some relief from your persistent cough. We will take things further if her blood tests show any decline on Monday.

[shazza09]

Hi Rob. Yes I have experienced exactly the same. They sent me for chest X-ray and discovered that the WG had caused a hole in my lung which a fungal infection grew in (aspergillosis) and this was causing the constant cough. I am still plagued by the cough 2yrs on. Get ur wife to go for X-ray to check it out good luck

[Robb in reply to shazza09]

Thanks for your comments Shazza We will get it checked if it continues You cant be too careful where WG is concerned Hope you continue to improve in your fight with WG

[Robb]

Hi all you guys who left comments-thanks again-

Just thought I`d let you know that my wife is now much better and her cough has disappeared.

She was on a 2 monthly INR check for Warfarin following a DVT clot in her leg that happened 3 1/2 years ago while she was in hospital getting tests prior to her WG diagnosis (she had been in hospital 5 weeks with no real progress in finding out what was wrong with her)

Her INR test on 12th Feby revealed that her blood was far too thin- INR 4.4 and her Warfarin dosage was reduced to get her blood back to around 2.

This is probably what caused her symptoms.

3 years ago she had three life threating conditions while she was in hospital trying to get a diagnosis-

WG

DVT

and a Subarachnoid Haemorrhage !!!!!!!

So glad she is now doing so well.

Keep your spirits up guys and never give up!!