CLL Support Association
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Bronchitis sinusitis... comes with the territory?

Last year, before being diagnosed with W&W CLL, I got bronchial and sinus congestion that trailed on for a couple of months... This year, dealing with same, mostly sinusitis, but some bronchial mucous, etc. . Prior to CLL, I rarely had colds... now seemingly it will be chronic also. Surely others have had this history. I'm taking loratadine, which makes it less bothersome, but still bothered with sinusitis and some coughing... What say ye all... who have been here before? Thanks to everyone for being here of me, so I can reassure hubby who isn't used to me being sick... married 59 years... and he can't adjust to a sickly me. I'm so thankful for you all sharing your journey... much less scary because of you. :)

Butitisme...

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Mine started with what we thought was chronic bronchitis. Apparently after a year of coughing found out my lymph nodes are enlarged causing some of the issue. Had a bronchoscope done to find something was growing in my lung that causes growth in a Petrie dish. Took antibiotics and that helped for a while. Back next week to pulmonary. Started sucking on halls cough drops 24/7 to slow cough down only to find out that now I have shortness of breath being caused by the menthol in the cough drop that was supposed to help. I’m a mess at the moment but trying to get smarter every day. Feel f r we to message me if I can be of help. Best of luck

Mike

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My husband has had CLL for 3 years, and this last year he has had a dry unproductive cough and draining sinuses....It appears to be chronic as well. We have been married for 42 years and he was always so healthy as well. Hang in there. Gargle with warm salt water and stay hydrated as much as you can. Diffuse with humidifier for breathing.

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Ask to have your IgG level tested. If it is very low it can become hard for your body to fight infections. Also, ask about having the sinuses cultured. I should have when I developed terrible sinus problems. It could be that you are dealing with something fungal, not bacterial.

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I know my IgG levels are in the 300 range now and I’m experiencing more mouth sores and constant dripping sinuses for at least 8 mos - I should probably bite the bullet and admit I need the IVIG treatment - it’s been suggested but otherwise I feel fine - for now ...what led others to finally take the treatment - doctor suggestion? Too many infections?

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Bite the bullet! You won't believe how much better you can feel!

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Ok thanks - will make the appointment then -

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Yes, bite the bullet! It is worth every minute of time. I was having 4-5 sinus infections a year before diagnosis. After starting IVIG, I went 20 months befor I had another one. And that one came when we were trying to step down from once a month to once every two months. It is definitely worth it for me.

BeckyL USA

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Thanks - do you remember what your igG level was before the first IVIG?

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It was 487 the first time I got it. It hovers in the low 500’s now when I am at the end of a cycle. It had really helped so much.

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It was 487 the first time I got it. It hovers in the low 500’s now when I am at the end of a cycle. It had really helped so much.

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@250.

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Mine actually rallied for a bit but fell back to 300 range - 250 is really low - I think it was Neil talking about a patch one can use instead of the poke and sit method?

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Its a subcutaneous version... 6 or 8 fine needles in your stomach ... takes about an hour once a week...

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Ok thank you for the info and video - very helpful - now need to go set up the appointment - 😐

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My husband has had an awful cough and draining sinuses now for almost two years, doesn't matter what he takes it is still there so as he was only diagnosed W/W with CLL only a couple of months ago I can now see from your comments why he has it! He has been on a diet and lost over a stone so stopped taking his blood pressure medication as he is now in normal range and he says that this has helped with the cough. He too has had a couple of doses of antibiotics for the cough which helped for a little while and a couple of X-rays proving chest clear. Any advice please to a newbie as in is there anything else he can do?

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Have his IgG level tested!

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what is that please?

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My chest cat scan was clear also. Unfortunately my cough was constant and had to sleep sitting up sucking on cough drops. Pulmonologist suggested to go in and look at my lungs and do a lavage where they wash a small portion and take the liquid back out for testing. Found something growing in my lung that caused bacteria to grow in Petrie dish. Put me on strong meds and seemed to work well for a while. Actually I think it worked but my shortness of breath was still there. Wound up researching halls cough drops which I was eating by the bag for my cough and found the menthol in them caused shortness of breath and then made me cough more. Perhaps I had too many! Lol. Off the cough drops and cough subsided. Sinuses still drain like a faucet. Guess that is good. Wish you well and hope you find the cause.

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healthunlocked.com/cllsuppo...

You might (barring the weakened immune system situation) benefit from the above posting which includes a link to an interview with two CLL Drs. and gives a regimen to follow to keep allergies and colds at bay so they won't (or will less often) become sinus infections (sinusitis).

I hope it helps you, it has helped me remain sinusitis free for many years. It does take vigilance.

Daily saline nasal spray and loratadine--also, I moisten my nasal lining with a small amt. of petroleum jelly (vaseline) nightly. An ENT told me it was the best way to keep from dryness that can turn into infection.

I dab a tiny bit into the front of each nostril, then squeeze them together to spread it a bit.

The rest of the regimen is important to read, as you may need the steps he suggests if you get further along in a cold/allergy---

Once infection sets in--the antibiotics are called for. And, of course, the suggestions the posters have suggested that require more treatment than for the usual patient.

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