Immunosuppressed- whooping cough

[SF1000]

I just wondered if there’s anyone else going through this at the moment?

I’ve never had this before and imagine being immunosuppressed due to lupus is a factor as my husband and 88 year old mother who has been staying here have not caught it.

I have had this for over a month and am still waking up with the choking, stridor and inability to breathe- sometimes for several minutes at a time. Also can happen at any time during the day. This is the most scary thing I have ever experienced. Eating can set it off and I daren’t go out or drive because episodes can occur with no warning so my life is on hold.

I had a chest infection on top which antibiotics have helped- now finished. I’m using steam inhalations and a room humidifier but have been told not to use cough syrups. There does not appear to be anything medics can do to help.

I’ll attach a video I found which is exactly what I experience to illustrate the issue.

I’m just looking for any support/suggestions…

youtube.com/watch?v=31tnXPl...(Not working as expected?)

[corinusha]

Hello, it seems Europe is under a wave of pertusiss, which has been actually eradicated before, but vaccinations have declined and now it is sort of back. It takes a very long time to heal since it is called the 100 days cough. Antibiotics are known to help but not to heal. It takes time and it is dry and unpleasant. I would certainly advise you to see a GP and a Pulmonary doctor, also an Immunologist that can suggest better treatment. I wish you health!

[SF1000 in reply to corinusha]

Thanks Corinusha. I have seen the people you suggest and noone has any answer. Sounds like an area ripe for research!

[Mctd]

I've had something similar, starts with nasal congestion, sinus headaches, go on to lose my voice, can't clear my throat. This last episode was terrifying. Every time I coughed my airways seems to close and I couldn't breathe, I would be gasping for air. The doctor gave me antibiotics but it didn't touch it and eventually got steroids, which cleared it up in the main. However. I have an horrendous post nasal drip which seems to affect only one side of my throat, constantly throat clearing as I keep going hoarse and still got a cough (though I'm not gasping for air). Like you I've tried everything, syrups, nasal sprays, humidifier... The only thing I know for sure is the doctor said I won't choke to death... I know it will come back and my anxiety is through the roof. Now having an endoscopy to see if if silent reflux that's the issue as I mentioned my ears were blocked... It seems never ending. Hope you find an answer xx

[SF1000 in reply to Mctd]

So sorry MCTD that you’re going through this- I can only sympathise. Good luck

[BukkyApampa]

I could not believe this when I opened the app this morning and read this, I’m going through this right now, I’ve also never had it before and was vaccinated as a child, GP told me yesterday that whooping cough is making the rounds and those who are immunosuppressed are most susceptible, it’s the most horrible type of cough, dry tickly and painful, I have constant chest pains, sore throat and headaches, also my whole body hurts from lack of sleep and having to sleep elevated, it’s worse when lying down. I was given antibiotics but told while it’ll ease a bit but could still take a while for the cough to clear, I also do get the coughing till I can’t breathe, it’s horrible.

Not sure if you were advised the same, I was told to stop taking the immunosuppressant, MMF in my case till it’s all gone so now I’m worried about a flare while not on meds, I may have to up my prednisone’s which gives me insomnia, it’s a vicious cycle.

I hope you get some relief soon, sending you lots of love

[SF1000 in reply to BukkyApampa]

Thanks for your reply. I have only recently come off my leflunomide due to side effects but the immunosuppresssion apparently lasts for months.

I think it’s going to take a long time to get over this. I have been sleeping upright for 6 weeks which makes me more sore in the day. The lack of sleep doesn’t help in lots of ways too. The lupus symptoms at the moment are overshadowed by the difficulty breathing. Never thought I’d be glad to get back to my usual symptoms!

[Treetop33]

I've had this before and it is absolutely awful. I'm not making any medical recommendations and I cannot testify to whether this is a legitimate approach or not, just that I've tried it. So look up whooping cough Vitamin C. The way I saw it when I tried it, was that Vit C is not harmful and the approach - that it deals with the toxins from the pertussis bacteria that cause the cough - made sense to me. Up to you though - just putting the information out there for you to research. Admins may not allow it, which is fair enough (though people here know I don't normally broadcast alternative medicine or anything).

Also you need antibiotics, though it doesn't deal with symptoms only your infectiousness. And everything else people are suggesting.

I'm guessing we should all be having the pertussis vaccine.

[SF1000 in reply to Treetop33]

I agree with you about the vaccine but I’m not sure it’s routinely offered even to those who are vulnerable. I think it should be.

I’m look into the vitamin C idea thanks.

[Guatmom in reply to SF1000]

I’m in the USA and many new mothers won’t let any relatives near their newborns who haven’t had the pertussis booster.

[Treetop33 in reply to Guatmom]

The UK is very hands off. I suppose it's worth thinking Covid as well because my latest bout with it was problems breathing etc. Quite serious despite being vaccinated. Recovering now, only six months later!

[KnitSewPurl]

Umm, very interesting you mentioned this , I am still on antibiotics, because of the incident I had unable to breathe we had to call out the ambulance literally could not breath airway was closed and I was unable to speak lungs was very tight as well. The only thing that opened up the airways was steroids nebulisers which the ambulance ladies gave me salbutamol did nothing much to the airway. But it was a very short relief . Overy night I continued to struggle to breath. Had very bubbly chest and continuously bringing up disgusting gung but what I don't understand was all the sputum test came back was negative 🤷🙄🤔 how do I explain that ?? But I am going to finish my antibiotics. I did have a X-ray as well. I am just waiting on that result as well.

If after the completion of antibiotics is done and I continue to be bubbly in the chest I will contact GP to see if he can suggest anything like a steroid tablets or inhalers. Or referral to chest specialist.

[KnitSewPurl in reply to KnitSewPurl]

I did do steam inhalation with menthol drops they are strong menthol drops. It did helped with clearing the nasal and chest daily . I did it x2 a day

[SF1000 in reply to KnitSewPurl]

My husband called the ambulance one night because I couldn’t breathe. It gradually settled but is a horrendous experience. I do steam inhalations regularly and have a humidifier in the bedroom which I think helps.

I have had antibiotics and a normal chest X ray. I believe that sputum tests don’t usually reveal the pertussis bugs and you need a pernasal swab to find it which is not commonly available at GPs.

I do hope your symptoms settle soon x