I have persistent Sinusitis over 6 months plus and have now tried 3 different strength antibiotics with the last being
co-amoxiclav. None have helped and I’m unsure the ENT specialist correlates the diagnosis with CLL. If anyone has any thoughts or experience of the same ? I tested positive for COVID 9 days ago -that added to the nasal issues but aside that, the symptoms have been mild and not debilitating.
You don't say if you are taking any CLL meds like ibrutinib, or meds for other disease states that can have sinusitis as a side effect. Being indoors in dry or dusty rooms can contribute to sinusitis. Being outdoors in high pollen, or pollution, or smoke from wildfires can contribute. A cracked wax ring on a toilet can leak "sewer gas" containing Hydrogen Sulfide, which can irritate the respiratory tract. And we have lymph nodes in our head/neck/sinus area, if your CLL is affecting any head/neck or sinus area lymph nodes, that's potentially a contributor. I know when my neck area lymph nodes swell I start to snore at night.It's a little concerning to me that you have said "3 rounds of antibiotics" but haven't told us you have had a definite bacterial infection (Infection can affect sinuses, bacterial or viral) because you don't want any possibility of resistant organisms in your body moving forward. Has your ENT suggested any kind of scan to see if there is lymph node swelling, etc or other physical blockage or reason for sinusitis?
Hi SofiaDeo. I’m on W&W so no medication. The diagnosis was made by the ENT consultant as was the medication. I’m very open to any ideas or suggestions that will improve both understanding and potential treatment of the same.
Hi Nell!I just went to my hematologist and also complained about a constantly drippy nose and post-nasal drip. I am also on watch and wait. He recommended the use of a saline nasal spray a few times a day, an air purifier, and also a humidifier if the house is dry. And at this time of year with cold temps, it certainly is. I use the saline spray a few times a day and that helps with the swelling nasal passages. I did buy an air purifier for the room that I am in the most and it has helped, along with the nasal spray, to stop the constant runny nose. The humidifier I'm still working on it. His suggestions have helped me as my symptoms are certainly less than what they were. Hope this helps!
Well, if the humidity in at least the room you sleep in is too low, that can aggravate sinuses. I am allergic to dust & I can tell when I fall behind in cleaning. I had a pneumonia/pneumonitis earlier this summer that was aggravated by construction dust (we replaced all 1st floor windows) during Forest Fire smoke hazardous air warnings, plus a broken wax ring on a toilet all at the same time. A number of people here are posting that treating their CLL has caused or changed eye, ear, nose & throat problems so thats why I commented about Lymph Nodes in head/neck. Many people find saline nasal irrigation with a Neti Pot or similar helps; one person wrote about how their ENT had them add an antibiotic to a saline nasal irrigation & that helped better than just taking the meds orally. I was using a saline nasal Gel during the heavy smoke & that helped some. I do have some mild sinusitis but doesn't sound as severe as yours, I don't need as much treatment. Hope you can figure out some things to get some relief!
Sorry to hear of your sinus problems and of recent COVID19 diagnosis..Have you got a pulse-oximeter? - finger-tip device to check your blood oxygen?
It is wise to keep track of that, as it is easy to miss it falling, through oxygen deprived confusion - so called ‘happy hypoxia’ — dm me if you want directing to a relevant device from Amazon.
Sinuses are deep tissue, such that the ‘strength’ of antibiotics may be less relevant than the penetration of those antibiotics..
Did your three abx include metronidazole = flagyl ?
This is an old antibiotic, one which is somewhat unpleasant [it is incompatible with alcohol, even vinegar may smell offensive whilst taking it], but deeply penetrating in to tissues.
Diet / nutrition
Be aware that dairy is deemed to create a lot of mucus, which is unhelpful during sinusitis.
Vitamin A is important for the health of all mucus membranes.. if you have any reason to think that you may somewhat lack this in your diet, either eat liver, eg. chicken or lamb [100g = 7 days value of vitamin A), or, take a supplements A+C+E + selenium is the standard product.. this contains retinyl esters, not beta carotene.. an important distinction for correcting any deficiency.
..one way to establish that you might have a deficiency..
- blood test [UK NHS is guided not to run this test.. a CLL patient might get approval from their Drs]
- dry eyes
- issues with eyesight, such as bright light intolerance, or poor night vision
- various skin issues.. dry; eczema; psoriasis; etc.
Likely no harm supplementing with ACE+selenium daily for a few months and see whether this helps.. whether you get any indication of improvement, say of night vision or lessened sinus irritation.. sign that you might have had insufficient.
Hi Shedman. Many thanks for taking the time to set out a comprehensive steer. Yes,use a pulse blood oxygen daily and practice various breath work daily. None of the ABX were flagyl and I’m sure the ENT person was not well versed in CLL. I avoid dairy mostly but will take the note on ACE /selenium. I’ve had a nasal infection ( one way or another) for 6 months plus now but my bloodwork indicates that my immune system and red blood cell count is effective so I’m baffled as to why I feel ‘ lurgy’ like daily and haven’t felt 100% for the whole period. Doctors say ‘ that may just be you’ which I find particularly daft. I don’t have a ‘specialist CLL consultant’ in Cardiff or South Wales that I speak with but have used a Prof Adrian Bloor in Manchester who was very helpful and knowledgeable -as far as I could tell.
Nell, check out the linked article about Sinusitis caused by mold/fungus and not bacteria. Antibiotics can't clear those.
If I were you, I would be asking for testing be done for this.
sinussnoringent.com/blog/si...
Best wishes for getting this cleared soon.
Nell, here is another site which may be more helpful to you as it points to some medications other than steroids for fungal sinus infections.
theiddoc.com/allergic-funga...
Steroids have been used to treat AFS but like those that respond to antibiotics many patients with AFS relapse once the steroids are stopped. Today the hallmark of treating AFS is with antifungals. The easiest way to deliver the antifungals to the sinus cavities is to have them aerosolized mechanically this can be used alone but more likely in combination with antibiotics, steroids and possibly agents known as mucolytics to break mucous and biofilms which may prevent the medication from reaching their targets. All of these medications can be delivered through nebulizers and atomizers minimizing many of the side effects when they are taking orally.
I had Sinusitis routinely about 2 years ago while on W & W. Antibiotics did nothing to help. I resolved the issue by using Flonase nasal spray, installing air purifier & humidifier in my bedroom. I also put air purifier in living room. No problems ever since. I believe the Flonase was the biggest factor of all 3 but who knows for sure. Best of luck to you.
I would echo albie58 and recommend a saline spray. I recently went to an ear, nose, and throat specialist for my consistent nasal congestion and she suggested a positive pressure saline spray (here in the US the one she gave me is called NeilMed Sinus Rinse.) I use it with the supplied packets containing salt and sodium bicarbonate, and add a drop of liquid goldenseal extract to this mix. Using it twice a day has helped reduce congestion, mucus, and post nasal drip by about 60% in my estimate. I had on occasion used a neti pot previously, but the positive pressure squeeze bottle is much easier, and encourages me to be consistent with the rinse. I've been diagnosed with CLL for 4 years, and on ibrutinib successfully for 3 years. Best wishes, Jim
Hi, if your problem is the congested nose, there's a natural way to unclog it. No need for aggressive decongestants which can't be used beyond 10 days anyways. Exhale and hold your breath (stop breathing) till you comfortably can. When you feel the urge to breath, start breathing slowly and try to not inhale deeply. This will elevate your blood CO2 levels (understandably) which has a relaxing effect on the smooth muscles that are not controlled by willpower. Repeat a few times. Every time I do this it works. I just used it a few minutes ago to unclog my left nostril. And it is said to mitigate the response of the autonomous immune system to infections and perhaps prevent a cytokine storm which might come handy with covid. That's according to Wim Hof and its how his breathing method works. Just Google this if interested.
My hubby has this continually, Sinus drip, we have been testing out antihistamines as advised by CLL members, one worked for about a week then all back to normal, his normal anyway lol, and I am now beginning to think that there his no solution and it goes with CLL, thankfully he doesnt experience the headaches etc., that normally goes with sinus problems, he just continually drips and is forever trying to clear his nose. If you find a solution please let us all know.
I'm very familiar with the nose that runs like an open faucet for days. Flonase nasal spray (a steroid) was a miracle drug for me to curb that. Just be sure to rinse the mouth out good afterwards. I use 50/50 warm water and hydrogen peroxide. Side benefit, the rinse also whitens the teeth and kills germs. I got the idea for the rinse after reading that hydrogen peroxide kills single cell stuff that chlorine doesn't kill.
Thank you for your reply John, will ask doc to prescribe the Steroid spray. I am at the moment searching for a good Hepa filter air purifier, have already covered the humidity factor by buying pottery water holding receptacles in which I drop a little Lavender oil so hopefully with the Hepa filters that will take care of the atmosphere, as for the peroxide, isn't that what they use to dye hair blond lol, interesting factor that it whitens the teeth! Thanks again for your reply, have a great Christmas despite all of the restrictions, I am a non drinker but this year will enjoy some 'Baileys', what the heck hehehe
You're very welcome. Enjoy your Christmas and your Baileys!
Just a thought Nell, I have had dental issues which caused sinus infections and were extremely painful. Lots of antibiotics and tried all the advice you have been given by our very learned friends in our group. Unfortunately in my case it meant tooth extractions.
I hope this is not your problem, but it’s worth a thought.
Stay safe
HazelUK
It may be your indoor air quality is affecting you. This report was recently published. rcpch.ac.uk/sites/default/f... The Working Party found poor indoor air quality has health effects in people of all ages. Our indoor air is filled with particles including waste from dust mites which live in mattresses and soft furnishings. People are often allergic to this waste as well as other particles in the air. On top of this there are non allergenic particles which aggravate too. You may have a vacuum cleaner that resuspends particles in the air and you may benefit from anti-dust mite bedding. A vacuum cleaner that seals the dust away and has a hepa filter can make a massive difference eg. miele with a hepa filter. Not Dyson (you may be able to smell the dust with these). You should also vacuum any fabric headboard in the bed you are sleeping in. Hepa air purifiers can also help.
My Dr. has me on prescription Flonase and Cetirizine (Zyrtec) for my allergies. I also found that the bamboo filled bags from Amazon really helped cut down on headaches and such by (supposedly) taking care of mold and other "dirty air" health issues.
I used to get sinusitis nasal infections, and if the stuffiness was bad enough, it would turn into a debilitating migraine headache with nausea and flu-like symptoms. The above mentioned remedies have turned that around, despite even now being on inhalers for COPD.
Hi Nell2009, I had treatment 3 years ago now and have a reduced immune system as a result. I had repeated eye and sinus infections and eventually I had to be placed on the antibiotic Doxycycline permanently. This was on the advice of bot my ENT consultant and my CLL consultant. Since then I have had no further trouble. I know that they say don't take long term antibiotics, but my consultants said they weighed that up with the rate of infections and affect on my life. They told me they had quite a few patients on long term antibiotics and monitored their situation closely. Having these infections every few weeks and sometimes days was a terrible situation for me and I'm so pleased I took their advice. Hope you have a Happy Christmas and every good wish for 2021.
Hi Nell 2009I get the same but my doctor prescribed Nasofan Aqueous Nasal Spray, It sorted it out for me. Good luck I hope you get some relief soon.
Firstly, try and avoid cheese, and cut down on dairy products generally. Because they cause build up of mucus. My Gp, who is very into evidence based medicine, told me that there is "no evidence to support that". But I told that there was plenty of evidence from generations of grannies. I am just coming out of sinusitis, which happened as a result of a tooth abscess, and the infection from abscess spread to throat, ear, sinus and eye. The antibiotics took a while but they sorted it, and tooth is now fill and infections elsewhere have gone. But stupidly, in the days after the root canal when I was on a "very soft diet" I had cheese on toast. And now my sinuses are grotty again. But will clear in a couple of days if I stay away from cheese. I love cheese. 😏
Welcome to the CLL sinus club. The most effective helper for me is saline spray before I go to bed followed by a couple of squirts of Flonase. The Flonase should be aimed at the side walls of your nostrils, not straight up the hole. This regimen at least gives me a clear mucous and a good night's sleep. Antibiotics only give a temporary relief. The sinus issues just keep roaring back.
Have you used a saline solution thru your nose? Then nose spray?
Hello Nell2009
I don't know if this will work for you. I quit smoking years ago after having mild sinusitis for 25 years. It worked for me, maybe you are around people who smoke. Merry Christmas.
I have had chronic sinusitis now for 4 or 5 years on ibrutinib. One acute attack with actual pain and fever was successfully treated 3 years ago, but nothing helps the chronic congestion. I put up with it, though not happily. My infectious disease doc. does not want to use antbiotics unless they are useful and necessary.
David
I'm the same....2-1/2 yrs on Imbruvica. No painful attacks but a continually irritated nose and sinuses. That and skin irritations are my only side effects so I can live with them. Merry Christmas to all!!
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Andrew SchorrCLL News From Patient PowerFri 18/12100 KB
Neil, I'm attaching a link to a patient power Video from a few days ago. Two doctors, one a CLL specialist, one a sinus specialist discuss causes and treatments. It's long (54 mins) but very informative.
Roger
Thanks Roger, I watched an amount of this and will try the nasal hygiene as a starter.
Nell,Sadly it’s a try different things because what works for me doesn’t work for others.
Not been a fan of Nelmed so my regime is -prophylactic Azithromycin, Sterimar and Avamys sprays daily and if it flares up I move to Nasonex. That keeps mine in check.
My excellent ENT surgeon was luckily against surgery because he said it could cause more problems with infections and scar tissue.
It’s not much fun so good luck.
Colette
Roger, I would love to view your link but I’m not seeing it???
Sorry, I don't seem able to send a direct link. If you google Patient Power and then find their news letter dated 18/12/20 you should find it. Good luck. Roger
I had chronic sinusitis while on treatment for CLL. I took several courses of augmentin but every time I would finish a course, the sinusitis would come back after a couple of days. The doctor finally gave me a huge single dose of an antibiotic (I think it was Bactrim - sulfamethoxazole / trimethoprim 800/160) followed by 10 days or so of daily doses. That cleared it up.
Chronic sinusitis can very difficult to get rid of. I had low-grade chronic sinusitis for about 5-6 years back in the late 90's. I think it was due to air pollution from living in China, but it persisted for years after leaving there. Finally a doctor prescribed a medicated steam inhaler combined with antibiotics for about a month. That worked.
Good luck with this. It can be a very annoying condition.
The only thing that helped my persistent sinusitis was an odour free garlic pearl daily. It takes a few weeks to really improve things but it has been great for me.
I get uncontrollable urges to sneeze and have constant swelling of nose since years. I have CLL and doing well with Imbruvica. Saline spray makes it worse. I do not take Flunase because it containes corticortisone which could aggravate macular degeneration: Sinus and eyes are connected. The sneezing urge is triggered by any cool air movement against my body, thus it could be sensory nerves overreacting to "protect from a cold" . Thanks to all for ideas and suggestion already posted. SINCE A COLIBRI IS SHOWN AT THE TOP OF THIS COLUMN: See the video : TABOU COMBO NEW YORK CITY 1975 - it shows a couple of Colibri birds in the Caribbean....
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