Having read helpful posts re the above, I've struggled to address the sinusitis since 2020. Saw a consultants who kept prescribing stronger doses on antibiotics over 7 days but none of the 4 courses made any difference. Tried nasal flushing, no real difference.
I constantly feel a little 'off/achy joints/lurgy' and wonder if this is CLL ? My consultant says not and multiple blood tests have not identified anything unusual- aside my CLL. My current WBC is 51 and seems stable. No enlarged lymph nodes and very active /healthy lifestyle. I've been searching for an answer as to why I feel this way but attributed the same to the sinus issue.
The nasal consultant diid say I was more susceptible to infection due to a broken nose from years of rugby etc and suggested an operation to straighten and remove blockages (FESS)
Questions-
Has anyone been through the same and addressed it -aside the above ?
Does anyone else have these symptoms in a similar position ?
Thanks
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Nell2009
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You have verified not having enlarged lymph nodes in your sinuses? Just because ones in armpit or groin are small doesn't mean we can't have them enlarged internally in other areas. Narrowing or obstruction of sinus passages due to sports breakages also could be contributing to impaired nasal drainage and increased susceptibility to infection. Let alone if any sinus nodes are altered, let alone our impaired immunity.
I seem to have some "genetic" sinus abnormalities. My dad had major problems, I have had a lot even before the CLL.
Wow that is interesting so I have multiple nodes around my head and neck but have not explored whether I have them in my sinuses and this is causing my recurring infections.
Hi! Hope you’re feeling better. I also have CLL and went through the same sinus situation. I was scoped and given antibiotics with no relief. The ENT referred me to a rheumatologist who ruled out any other cause other then low immune system aggravating the sinus where bacteria collects. To counteract this hypersensitivity he put me on a low level of prednisone which is a steroid. It resolved the problem completely. I stayed on it for 2 years with no more symptoms and six months ago I weaned off of it and I’m fine. Perhaps discuss that with your doctor and see what he says. Hope you get this resolved soon and you feel better.
Hi! I hope you’re feeling better. The low dose of prednisone is not enough to have side effects of any consequence. I had no side effects. For a short time I felt a little down but I can’t say for sure it was from the prednisone. But when you are ready to wean off after being well for a while you must go down very slowly so the inflammation doesn’t return. I was concerned that it would come back after weaning off but it didn’t recur. It had been so bad that I couldn’t breathe at night unless my mouth was wide open. I would wake up because my mouth was so dried out. My CT scan showed that I was blocked from my sinus all the way up to the brain and there was inflammation all the way down to my lungs. All the rounds of antibiotics didn’t help. Fungus infection was ruled out. CLL was the only health problem before it began and I was on watch and wait at the time. The prednisone was a miracle healer for me. I was reassured that at a low dose there are no side effects at all but when ready to wean off to go slowly. It took a few months to wean off and it went well. It’s been five months since I’m completely weaned off. I hope this was helpful. Everyone reacts and responds differently to meds, but I was reassured that at a low dose (I was on 2mg down from 10mg ) it is relatively safe. A side benefit was that my lymph nodes shrunk down and when I weaned off completely they enlarged again. Recently, I finally started treatment beginning with Calquence which is acalabrutinib, and they shrunk down again. I hope you find a dr that can help you resolve this. Wishing you good health, always. Malkie
Do you have an idea what triggers your sinusitis episodes? I suffered with sinusitis from my teen years through young adulthood. An ENT suggested I needed to have sinus surgery to open better drainage of my sinus. I had that operation and it helped to lessen the number of sinus infections I had.
When I began taking antihistamine in the Spring and Fall seasons when I was affected by allergies that were the cause of my sinusitis, this helped, but I still had at least one episode of sinusitis a year.
I read posts here (in late 2017) at a time I had just had to have 2 rounds of antibiotics with the 2nd one being Cipro ( which should be avoided if at all possible) to clear up sinusitis .
A discussion around pneumonia as the cause of many deaths in CLL patients, and further that sinusitis can become bronchitis and/or pneumonia made me see my need to PREVENT any and all respiratory illnesses within my power to do so.
So, I began taking antihistamine daily all year-round (non-drowsy Claritin) and began using a AM and PM daily saline spray (more times, in the high allergy seasons) as well as avoiding people with cold-like symptoms--I keep my distance. And, now I wear a mask and avoid crowded places, which helps me to be more people friendly.
Because I have had a diagnosis of Bronchiectasis, I have added (as needed) a sip of cough syrup and/or Musinex when needed which has been most helpful to rid of mucous which seems to gather in my throat and be impossible to expel, but causes me to cough.
Also, bacteria is just one source of respiratory infections. When antibiotics do not work, there needs to be some investigation of source other than bacteria--mold spores, soil fungi, viruses are also guilty of respiratory infiltration. So, do talk with your Dr. about any respiratory infection that has not been cleared by antibiotics--esp. if it is a long episode.
All that to say, once you get your current sinus infection cleared, you most likely can keep yourself from having another---but I assume you may need the surgery your "nasal consultant" suggested to be able to then prevent further infections by use of antihistamines and saline spray because the probability of your having enough drainage without that surgery is a possibility.
People sensitive to mold might want to consider Zyrtec/cetirizine instead of Claritin/ loratadine. It's also a once a day non sedating antihistamine, and effective against molds which loratadine isn't.
It is interesting that several of us have experience of frequent infections that are difficult to clear. And the consultant claims it is not about the CLL because it is too early stage, patern of infections pre dates it, etc.
How much work has there really been done on this? I am going to dig out the large scale statistical study from medical records I saw referred to that said that from 20 years before diagnosis CLL patients were more likely to have had problematic infections that had been looked at in a lab. Anyone else come across this work?
I think the consultant is correct in stating the CLL itself isn't the direct cause of an infection. But CLL can affect the lymph nodes in our head, which then can affect sinus drainage, so is an "indirect contributor" if not the actual cause, of sinus troubles IMO.
Hi SofiaDeo,Do you think the general feeling of 'not quite right' /lurgy correlate with the Chronic Sinusitis ? Prior to diagnosis, I had picked up an infection etc. The general feeling on being off has been constant since then (not psychosomatic). To be clear of the sinus issue would be a huge help and roadmap to tracking my real health as the bloods remain stable. I am since requested CT scans on my nasal area.
I think it's possibly related to sinusitis. As someone who constantly battles irritation from dust, let alone when pollens are in the air, and has for decades, I personally think it's possible. I moved to New York state once, and suffered from a series of sinus infections the first year. I felt overall awful, it wasn't just head aches & pains. I took a transfer to Nevada to get away from molds, pollens, high humidity. My problems decreased. Moving to Florida had them pop up again; I started using indoor air filters/cleaners plus controlling humidity indoors and that helped.
But there is something called Cancer Related Fatigue (CRF) that may also be in play. Not all of us get it, and it can vary as to how the fatigue waxes and wanes. Emotional stressors, red blood cell parameters, exercise, can all affect it. Hard to say if your feeling "off' is sinus, or CRF, or emotional stressors (like, Covid issues plus any others). It's also my belief that the prolonged stress from Covid issues, are exacerbating what might otherwise be minor problems.
With you getting your diagnosis in 2020, and sustained Covid stressors on top of whatever the CLL is doing, *plus* older sports related injuries, it's no wonder you are feeling "off" a lot more.
When I moved to Florida, I found mild OTC steroid sinus nasal spray helped, and used it a lot. But that was pre-CLL, and I would not suggest trying this unless OK'd by your doc with more intensive monitoring, from an infection control standpoint.
Hi Nell. I've had this all my life and had my septum straightened a bit in my '20's. I still get sinus issues though - and I'm sure it is becoming more frequent now I'm on the verge of my 2nd line of CLL treatment. In my case, I don't (thank god) get pain around my eyes like some poor people do, and unless I've had a heavy cold, it isn't even productive. With me, it's insidious and creeps up on me. I start to feel a bit under the weather and inevitably ignore it at this stage, wondering what on Earth it could be! In the next couple of days I start to get a bit worse - until I feel totally crappy and then I have my epiphany and realise it's sinuses AGAIN! For me (and many others I gather) a week of antibiotics is no good and a minimum of 2 weeks is essential. I am told that if a week won't clear it, all that happens is that you become resistant. I suggest you get your consultant to explain to you GP that CLLers are prone to sinus infections and may need a longer course to shift it. Good luck! Handley
I use a steroid and saline wash twice a day, which works well for me. I suffer from chronic sinusitis - have done for 30 years - and this is the most effective method so far. I've had three sinus surgeries, which helped but didn't cure me of allergies and further infection. I'm happy to share the steroid I use - it isn't cheap - and is only available on prescription (in the US btw). Good luck.
Yes, there is medical literature that carries studies about CLL-related allergy related to nasal respiration. I thought my 4 years of severe daily allergic sneezing was caused by CLL. But then I discovered it was caused by Phillips C-Pap machine and the problem vanished immediately after I got a Res-Mad Bipap. Thus, my sneezing allergy was not caused by CLL, but in the course of searching, I found the studies in the internet about CLL-related nasal respiration problems. A pharmacist thought it was an issue of leucotrine, not histamine. (Excuse the spelling...)
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