Irratating Constant Cough

My son has had WG since 2008, he had a flare up in 2014 which threatened his eyesight and it was also found that he has a thrombosis in the jugular vein. The illness has flared up again causing problems with his eyes. The rheumatologist decided to treat him with two cycles of rituxamab. He has now got a very irritating constant cough which his rheumy said was caused through the steroids burning the bottom of his oesophagus he also has reflux. The chest Consultant thinks there could be another problem. Has anyone else experienced this?

22 Replies

  • Has Andrew had a chest X-ray or lung biopsy ???

  • Just had a chest x-ray which was ok now waiting to have a scan.

  • Is the Scan appointment soon?

  • He's on the waiting list. The cough is worse at night Suzy.

  • I hope his appointment comes through very soon. he knows he can always to talk to John anytime.

  • Thanks Suzy.

  • Is he on an ACE inhibitor as that can cause an irritating cough?

  • No he isn't on them.

  • My Mum has had a cough since her first and only vasculitis flare. Her coughing has very slowly reduced over three years. She only takes 5mg pred.

    I would suggest being checked for reflux before anything else, this is/was part of my Mums problem.

  • Hi,

    I have suffered and often, from an irritating and persistent non productive cough. This tends to be one of the signs that precede a flair of what is believed to be WG aka GPA but I am going through the long & arduous process of a definitive diagnosis.

    I really feel for you as its evident that you are worried on this account.

    When I was a youngster, my mother used to always keep a basic level of OTC medication which included the now banned Germolene, bandages, plasters and paracetamol plus aspirin.

    If any of us had a really dry and painful cough then she would give us a small tablespoon of what was then called codeine ! Who knew that such a OTC cough syrup could be bought at your local chemists ?

    I recently had this type of horrid cough plus a bad problem with my nasal passages feeling so blocked and, even if I had 8 good hours of sleep, I would wake up feeling very drained.

    I have an excellent pharmacist who told me not to use it too often as it can be very addictive and he told me that he tells his list of drug abusers, that it is no longer available. I can only tell you, from my own experience, that it really works and is so much less expensive to buy. I am careful not to use it too often but then again, I don't feel any need to do so.

    If you are worried about asking then it can be bought online via chemist direct. It is, by a long way, the best of the other dry cough syrups and I find I don't need to use it often.

    I hope this helps you as I know a few who just won't take it because they then believe they will become drug dependent. As long as you talk with your GP and don't take more than the information says to abide by, then I don't think you will cause any worsening of symptoms. Just make sure your specialist and GP know, so they can then make sure there is no conflict with the immunosuppressive drugs etc.

    I hope you start to feel better very soon. I know how slowly life can drag when you see no end of the pain in sight. Suffering from vasculitis can be the worst and the worry can make things feel so dark and it's a lonely old road to come to terms with.

    Take care & be kind to yourself


  • Thank you for taking the time to reply & for all your advice.

  • Sorry, I didn't actually tell you the name of this. It's called codeine linctus and each 5 ml of syrup contains 15mg of codeine phosphate. I find it also helps when I get loose. It may be an old fashioned syrup but it really works, for me in any case.

    My own views are that I now don't really get all bent up with worrying that I may become dependent. I used to worry so much about this.

    We all become our own best medical experts as I see it.

    Good luck and may God bless you & your family

  • I developed chronic gastritis and oesophagitis from cortisone - apparently a side effect. It's not dramatic but I do have a similar cough and have been told is due to reflux irritating the oesophagus (gullet). This was confirmed by a gastroscopy. I also had lung function tests and chest x-ray to rule out lung involvement.

    I now have to take proton pump inhibitor (omeprazole) for a couple of days once in a while when it gets to irritating. If you take this stuff for longer, you need to also take a magnesium supplement.

  • Thank you very much for your post I have forwarded the information on to my son.

  • Hi sorry to hear about your cough. I had a productive cough which always grew bacteria for 20 months I had antibiotics for a week, for two weeks for six weeks, try two together for a week, for two weeks for six weeks. I even went into hospital for two for intravenous infusion of guess what another antibiotic. In all this time the drugs made not a jot worth of difference. I have now decided I have a resident bug and I have decided it can stay cos it ain't going away no where soon.

    I know there are lots of cough bottles out there but unless it phyocontin and that doesn't always work it is the best. You might want to try fresh Pineapple, eat the fresh one not tinned or juice just fresh it's easier on your body and I know Drs know an awful lot even they themselves don't know everything. Best wishes and I truely hope your cough gets better.

  • Thank you.

  • Hi I too have had a constant cough since October. So far all tests have been negative

    ( chest x rays, CT Scan ) but I'm booked for a bronchoscopy next week as my team at Addenbrookes feel it could be a low grade chest infection due to long term use of Rutiximab.

    I have had Vasculitis for 18 years.

    Hope your son is getting some relief


  • Thanks Jill - he had a barium meal test last week just waiting for results & is having a scan soon. Cough has eased a little. What type of vasculitis do you have? Margaret

  • Hi Margaret

    I have Wegners affecting mainly my nose ( Saddle nose deformity ) hope you get some answers with the barium meal and the scan. How old is your son please ?

    Which hospital is your son under the care of ?


  • He is 46 and is under the care of The University Hospital. Durham and Sunderland Royal. The WG first affected his gums, sinuses and lungs, the second flare affected his sinuses and eyes - when they did the head scan that is when they discovered he had a thrombosis in his jugular. The recent flare up again affecting eyes and sinuses. I have a post on the Vasculitis Uk Facebook page and you will see he has continued running & competing in triathlons throughout this illness. He is doing one at Ripon tomorrow to raise funds for Vasculitis UK. However, he could barely walk when first diagnosed as he was so ill.


  • Thanks Margaret for your reply.

    Well done to your son for raising funds for Vasculitis. He has come so far since first diagnosed which gives inspiration to fellow sufferers recently diagnosed.

    Best wishes to you both and good luck for tomorrow . Look forward to his post

  • Thanks Jill - he is very determined. Mgt x

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