Hi, I have been on W&W for over ten years now. For the past four months I have been suffering from an Upper respiratory infection. After being on four different Antibiotics to no avail and my consultant has now put me on Azithromycin 250mg for three months. (5days on and 2off).
I am very still very congested and have lost my hearing. I have been referred to an E.N.T clinic but my appointment is not until the end of March.
Ada, you might get some replies if you give some information about the type of Dr. who is seeing to your respiratory struggles and maybe let us know if you have had any treatment for CLL. Reading your posts about having had this condition for so long is concerning in that you don't seem to have a diagnosis for the respiratory situation.
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Thank you for your comments and I will do my best to answer your queries. The doctor I see is in Haematology and no I have not had any treatment for CLL as yet. My G.P who was seeing me referred me back to Haematology as I was not responding to antibiotic treatment and I have not been given any diagnosis for my respiratory infection.
If your issues are mostly the sinus / nose then it’s possible that it’s not an infection at all or maybe partly an infection and partly allergies.
I used to have very mild hay fever and mild allergies to dust mites. Oh and every now and then I’d get hives / urticaria. Ie itch skin. Then I got CLL and it all went haywire. I’m told that it’s not uncommon with CLL to experience massively worsened allergies. Due to immune dysfunction. Of course you can get infections on top too so it can be a mixed picture.
I had a LOT of gunk going down my throat as well as a constant itch of nose and skin and constantly blocked nose.
In the context of a mixed picture where some of this was believed to be infectious here is what my ENT allergy expert prescribed me thus of course might not be right for you.
— sterimar nasal spray (a sterile saline wash designed to keep the nose cleaner and wetter and try and loosen the gunk. Note that drinking more water and trying not to dry your house out too much can help keep the mucosa moist too. Some use a netti pot instead but I worry about that for heigiene reasons.
-dymista combines steroid and topical antihistamine in a nose spray.
-high dose fexofenadine (in my case four times the licensed dose after ECG tests as we went up the doses. This is mainly for the skin but probably helps the nose a bit.
-like you I’m on azithromycin but I’m also on cotrimethtoprim and aciclovir to try and stave off other infections. It is also worth considering fungal infections as a possibility. Has a sample been obtained?
You might want to explore IVIG however your level of iGG doesn’t look that low so as my immunologist cheerfully said to me “you’ll have to get worse before we can treat you to get better”
I would also question which antibiotics youve tried and for how long. I’ve had to take a month of a penecilin before to get on top of a sinus issue. If I had just a week or two it came right back. Complete with temperature.
Sinus infections usually give pain and a sense of pressure in one or more of The sinus areas.
Of course if your ears are blocked another issue is to look at the adenoids as they can be contributing as can tonsils. So it is good that you are seeing an ENT doctor.
Hope that helps. Of course this is not individually tailored advice for you just some general advice that I’ve heard morr than one patient with similar problems be given by different doctors.
It’s worth trying to get as much on top of things as you can. For me now my nose is almost clear most of the time tho still a bit itchy but without the throat irritation. And I still get a bit itchy skin but not as bad.
I should say that despite the prophylactic antibiotics I seem to have got another sinus infection this week in the right cheek area this time and we will see how long it takes to get that one in control.
This may be of no help, but back in 2016, after a year on ibrutinib, I had bronchitis almost constantly for 13 months. Antibiotics helped a bit, but what finally got rid of the constant coughing was monthjy immune globulin (IVIG). Nothing has helped sinusitis and runny nose. It's become a part of life.
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