I was diagnosed 15 years ago and have had several treatments. I started getting colds, and sinus infections a few years ago. I foolishly thought that Imbruvica was the reason; I now realize it is the CLL. I am wondering if anyone else has had these issues? More importantly: any suggestions on treatment? I would sincerely appreciate any suggestions. Thanks so much.
Dorothy Star, 72, from Colorado
Hi Cllsller / Dorothy,-
If you are seeing a CLL expert doctor or a good diagnostician, you may want to ask if monthly infusions of IVIG would be appropriate to reduce / prevent your frequent infections. The treatments are expensive and require several hours in an infusion chair, but they help many patients that have low IGG and/or frequent infections.
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Len
Thank you, I do get monthly IVIG infusions.
Do you mean Urinary Tract Infections? I use d-Mannose supplement (fruit and cranberry sugars) as a prophylactic. Take 500 mgs daily and your urinary tract infections will not be able to take hold. It coats your bladder with acids that bacteria don't adhere to.
Do you have a link to how this works? I have trouble understanding how sugars become acids and make their way into the bladder. Thanks.
Not sure whether it's similar to your problem or not, but I have had a constant runny nose for about 2 years. It's made worse by cold temperatures or being in even a slight amount of breeze. Haven't found a solution yet except to keep warm. It's been quite good today (30 degrees plus where I am (86deg F). I guess an IgG of 1.7g/L doesn't help. I'm not on IVIG because I don't get any other infections.
I just recently have had runny nose. I started treatment, ibrutnib, in December. Since January I have had constant runny nose, in addition to dryness when my nose is not running. I know this may sound minor to other side effects but it is annoying. Thank you for sharing as I know someone else is experiencing.
I am not sure if the runny nose has to do with treatment.
Thank you for replying. Yes it is good to know someone else has the same issues. Thank you again.
Yes I was exactly the same with constant sinus and eye infections. My consultants put me on permanent Antibiotic Doxycycline and I have had no further trouble. I know they recommend no long term Antibiotics, but as I'm 74 years of age I don't think that long term use would give me any problems. They have given me a better quality of life that is for sure.
I get these issues - I have always tended towards sinus issues. The first thing which helps it not to happen as badly is being careful around cheese and anything with high dairy content. I know that if I eat cheese I will become congested. I still eat cheese because I love it, but I know what the reaction will be. I had a tooth abscess - unrelated to sinuses, and I was given a heavy dose for antibiotics - it cleared the sinuses it was lovely. They also gave me a nasal spray 
it helped a little the two days I used it, but at the end of the second day I got a nose bleed, one of the side effects of said spray - and it lasted on and off for several days, so that went in the bin. I find Sterimar, a saltwater based spray helps a lot - available from chemist or online. It keeps the nostrils slightly damp and being salt based has a natural anti bacterial action. All my Gp does normally is give me a asap spray which doesn't work and/or gives me nose bleeds - but I am on a medication which makes nose bleeds more likely anyway. Good luck, I hope you sort the problem
Liz in UK xx
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