Coughing that seems never ending!

[Bakbre]

Hi everyone

I will apologise now because this is a very long post.

I have had 3 chest infections since January with a really bad cough. The kind of cough that starts with a tickle in the throat and then you just cannot stop. I cough so much I am nearly sick. On the first two occasions I felt really ill and my GP gave me antibiotics and sent me for a chest xray. Both times the xrays were clear. The 3rd time, I didn't feel that ill but the cough was getting me down and the GP just gave me antibiotics. The problem is about 3 to 4 weeks after I stop taking the antibiotics the cough comes back, just as it has again for the 4th time now.

Unfortunately I am on Rituximab and was due to have my 2nd cycle of infusions next Monday and after speaking to the Specialist Nurse. these have now been cancelled. She spoke to my Consultant who has said that I should stop taking the lefludomide tables I am on for 3 weeks as apparently they can give you a bad cough. After the 3 weeks I have to speak to the Nurse, who will tell me whether to start them again. She has also re-booked my Rituximab for 8th & 22nd August.

The consultant also said I should see my GP who should arrange for further investigations to be done.

My problem is I don't want to go back to the GP just to be given more antibiotics which I am pretty sure is what he will prescribe. I cannot just keep taking them but I am not sure whether he will want to send me for more investigations.

I am unsure what to do - any suggestions?

[PMRpro]

If the GP is to arrange for other tests to be done - that is what he should do. Not hand out antibiotics for a cough that is almost certainly not bacterial in origin. He may not WANT to do so - but it is his place to arrange this sort of monitoring.

I can't find what causes the leflunomide cough - but I imagine they should do pulmonary function tests to be sure the leflunomide hasn't affected them. And before dishing out endless antibiotics anyway and certainly now they should do a sputum culture to see if there are bacteria there and which antibiotic is the best for what is there.

Twenty-five years ago a GP did that to my husband and nearly killed him, instead of sending him for an x-ray. At least yours sent you for one. But chest x-rays don't show everything! This year he had had repeated "chest infections" that returned weeks after finishing the antibiotic. In the end we discovered there was increasing fluid in his lungs - and that was making the cough far worse - a good course of far more diuretic than he was on has sorted it out but it meant 10 days in hospital to rule out other possibilities.

So see your GP - and tell him you want it investigated and not another script without proof it is needed.

[Bakbre in reply to PMRpro]

I have an appointment tomorrow with my GP and at least now, thanks to you, I know what I am going to request.

I agree that endless antibiotics are not right and that is why I didn't want to go see him, nevertheless I am now armed!

Thanks a lot

[weathervane in reply to Bakbre]

Wishing you good luck for appointment tomorrow. Im on rituximab as well and when I started on it i had one chest infection after another along with horrible sinus infections . This has now improved dispite my white cell count being low for months ! I hope your gp does run more tests and another xray . Please keep us updated as to your progress , best wishes 🌸🌸

[Bakbre in reply to weathervane]

Thanks a lot - I will let you know.

[Bakbre in reply to weathervane]

Sorry this is again a long reply.

So I had my GP appointment and I ended up seeing a Doctor I have never seen before (and actually never want to see again!) because my Doctor had had to go out to an emergency. I explained the never ending coughing and that I have UCTD, RA & Small Fibre Neuropathy. He looked on his computer and said "yes I can see that". He then waffled on about even Specialists not understanding Lupus etc and that treatment is all trial and error.

He then said there had been a small outbreak of Whooping Cough in children in our village and surrounding villages and he thought that was what I probably had! I asked if you could get Whooping Cough more than once because I had already had it about 4 years ago. He didn't answer that one! He was going to send me to the Practice Nurse to take some blood which would be sent away and it would take about 1 month for the results to come back.

When I said in the meantime was I just supposed to keep on coughing, his answer was until he got the results back he couldn't do anything else and he wouldn't give me any more pills. I said I didn't want any more pills but I would like some other tests done as well as the Whooping Cough. I also said that a month was a long time to wait and I honestly don't believe that I have got whooping cough. I don't have children, grandchildren and don't really come into contact with them but once again he didn't answer.

I feel as though I wasted my time and breath. He is convinced I have got Whooping Cough and that was all there was too it. I am equally convinced I haven't.

I am now wondering what to do and I am still coughing!

Thanks for listening.

[Bakbre in reply to PMRpro]

Hi there

Sorry this is again a long reply.

So I had my GP appointment and I ended up seeing a Doctor I have never seen before (and actually never want to see again!) because my Doctor had had to go out to an emergency. I explained the never ending coughing and that I have UCTD, RA & Small Fibre Neuropathy. He looked on his computer and said "yes I can see that". He then asked if he could examine my chest & then said he wanted to send me for a chest xray. I explained that I had already had 2 of them both in the last 3 months and both of them were fine and my chest was clear. I said that I had had 3 chest infections since January and each time I received antibiotics which seemed to clear it up but that after about 3/4 weeks it came back. This time I seem to have only the cough and that I didn't feel unwell, just this blasted cough. I asked about the pulmonary function tests or even a sputum culture but he didn't seem to want to answer me on that. He then waffled on about even Specialists not understanding Lupus etc and that treatment is all trial and error.

He then said there had been a small outbreak of Whooping Cough in children in our village and surrounding villages and he thought that was what I probably had! I asked if you could get Whooping Cough more than once because I had already had it about 4 years ago. He didn't answer that one either! He was going to send me to the Practice Nurse to take some blood which would be sent away and it would take about 1 month for the results to come back.

When I said in the meantime was I just supposed to keep on coughing, his answer was until he got the results back he couldn't do anything else and he wouldn't give me any more pills. I said I didn' want any more pills but I would like some other tests done as well as the Whooping Cough. I also said that a month was a long time to wait and I honestly don't believe that I have got whooping cough. I don't have children, grandchildren and don't really come into contact with them but once again he didn't answer.

I feel as though I wasted my time and breath. He is convinced I have got Whooping Cough and that was all there was too it. I am equally convinced I haven't.

I am now wondering what to do and I am still coughing!

Thanks for listening.

[weathervane in reply to Bakbre]

Oooh Bakbre , that is a strange one , 4 weeks to get blood results- I don’t think so , i get most bloods back in a week. Do you feel the cough is the same as 4 years ago ?? I think you should make a new appointment with your usual doctor as that sounds like a very unsatisfactory appointment! ! In the mean time is there anything that soothes your cough , steaming or hot honey and lemon drinks . My heart goes out to you as constant coughing wears you out so do take it easy . Best wishes and feel better soon xx

[PMRpro in reply to Bakbre]

Just been talking about this - they are taught to make a speedy diagnosis to "save the patient" and then won't be budged!

It is possible that you didn't develop immunity in the last episode or what you had has gone - your immune system is compromised after all.

I suppose it is a case of try your usual doctor again - and avoid that one!!!!!