Help dealing with frequent URIs.

[Cllsller]

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

[lankisterguy Volunteer]

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

[Cllsller in reply to lankisterguy]

Thank you, I do get monthly IVIG infusions.

[Hidden]

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.

[LeoPa in reply to Hidden]

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.

[guzzifan]

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.

[jjaye in reply to guzzifan]

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.

[Cllsller in reply to jjaye]

Thank you for replying. Yes it is good to know someone else has the same issues. Thank you again.

[Cllsller in reply to Cllsller]

I thought the problem was from Imbruvica. They took me off for 2 months. I have still been getting runny nose, sinus infection, watery eyes and post nasal drip. My hem/onc says it is from Cll.

[jjaye in reply to Cllsller]

Thank you!

[Eric70]

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.

[Cllsller in reply to Eric70]

Glad to hear that. I am going to ask my hem/onc about doing that for me. Hope things are still going well for you.

[blowinginthewind]

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