Hi All. I'm newly diagnosed and new to this group. Wondering if anyone has had a similar experience with allergies.
Six years ago, I took an allergy skin test that was positive for just about every tree, grass, mites, dust etc.
I took the same test about a month ago and had a completely negative test. Not one immune response. From severe allergies to nada on the immune response. My doctor told me it was because of the CLL.
Has anyone else had this happen? How do you manage allergies/asthma with CLL? Any advice is appreciated.
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Tracibfine
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I was diagnosed with Chronic Idiopathic Urticaria 9 years before I was diagnosed with CLL. Allergic reactions to everything and nothing.I was prescribed an antihistamine to take every day and I still struggle now,
I have worse flare ups when I feel run down.
I am thinking of revisiting an allergist to gain more information on how the CIU and CLL are existing together. From what I believe for me with CIU the body is really sensitive and quite over reactive to anything that may be deemed an invader, this ranges from foods to chemicals, the onset of illnesses to the everyday indoors and outdoors.
I constantly feel like my body is in battle and I’m exhausted.
I have many questions to ask, the primary one being that if my immune system is overactive would this be helping to to slow down the progress of my leukaemia?
Also I need a plan for when I am in a worse flare up and the attacks are quite scary, particularly when there seems to be an huge adrenaline rush, I have not experienced actual anaphylaxis nor have I been prescribed an epipen.
It’s all so complicated and there does not seem to be any definitive reasons or concrete answers. If I get any valuable information I shall let you know.
Do you have a hepa air purifier? If not, get one as it will reduce the number of problem particles in indoor air. You may be using a vacuum cleaner which is spitting out as many particles as it is taking in eg. Dyson and Henry are particularly bad. If so you could get one with a hepa filter and sealed bag so no dust leakage like Miele or sebo. Also if you are in the U.K. there is an overplanting of silver birch which has particularly allergenic pollen in April. If your tree pollen allergies are earlier it may be hazel or alder. Look around at what trees are around you during your day and look up whether they have allergenic pollen or not. Only certain ones do.
Funnily enough my son has an air purifier and when I am down there the air does seem clearer, also apparently my snoring is better..😂I think I shall invest.
Your right about the birch and others, sometimes my tree pollen can start as early as February...
It will probably be hazel and alder you are allergic to in February if you are in the U.K. which are both have highly allergenic pollen. You could get anti dust mite bedding too for snoring/vacuum any fabric headboard with the Miele or just go with the hepa air purifier to start you off. The snoring is related to this and will decrease if you are not inhaling particles while you sleep. You will notice the difference once you start.
In that case may not have been a reliable result. I am not sure doctors always remind people not to take antihistamine before the test so they can throw up some less than reliable results. If you are still getting bad reactions and breathing problems then there is probably still an issue and inhaling those particles even if you are not allergic could still be a problem if you are inhaling too many
Very interesting to me! I know I have allergies and when I finally went for testing two years ago (just before my diagnosis), I tested negative to absolutely everything.
Iam also having this exact same problem, after possible covid last feb (was never tested) i developed really weird breathing problems when outside in the garden lasted march - around september/october time (i live in UK) , they have started again this year , asked doctor to do allergy tests , and they came back negative , i cannot understand this at all. What is CLL ? I havent heard of that
IMO- many of us experience changes in our immune system, and even though CLL is known to depress our reactions to infections - bacterial, viral and fungal, we often see exxagerated autoimmune reations. Some are dramatic increases like skin sensitivity to bug bites, sinus problems, rheumatoid arthritis and others are subtle. A few patients report dramatic decreases in allergies. It seems like the entire immune system gets out of balance. In my case my skin rash that has been visible since 2006 gets less severe when my CLL is progressing and much more active when my CLL is in complete remission.
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We have had more than 60 past discussions of allergic reactions, most of the recent ones were on vaccine reactions, but there are many older ones that might be interesting to you:
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Thanks for alerting me to the possibility that my lack of skin-prick reactions might be related to CLL. Similar to your experience, my allergy skin tests prior to my CLL diagnosis > 25 yrs ago showed reactions to dust mites, pollens, and mold, but a repeat test 2 yrs ago showed nothing. Even a follow-up RAST (which tests for IgE in the blood rather than skin) showed no evidence of allergy. Yet my sinuses, burning eyes and rhinitis told me otherwise. My allergist didn't make the connection to CLL, but concluded that I was one of the rare folks whose allergies still manifest in affected tissues despite not testing positive via the usual tests.
I manage my allergies by taking an antihistamine and using Flonase (fluticasone propionate) nasal spray daily. During peak allergy season, I add prescription antihistamine eye drops (Pataday) and nose spray (azelastine), and use a Neti-pot for sinus irrigation. Other than that, of course, the strategy is to minimize exposure to the offending agents. I avoid morning walks because the pollen counts are higher than later in the day. Wearing a mask will likely also help. I also use a Miele vacuum cleaner, which has a HEPA filter, and very high-efficiency filters on my HVAC system. An especially nice treat is escaping to the beach during pollen season. Best of luck managing your allergies.
So weird isn't it? I saw an allergist a couple of weeks before being diagnosed and he said i had vasomotor rhinitis. Basically same symptoms as allergies....without allergies. I also take azelastine. And use Florent inhaler modified with baby bottle nipple, to take it through my nose. It helps a ton controlling my "allergic" asthma
Are you still suffering from allergies ? I've found my allergies are almost non existent as are illnesses that get everyone sick. When I got my first covid vaccine my wbc went up 13,000 immediately. 10 days later, it went back to normal. Immune response. I feel almost like having CLL helps fight disease. I know everyone's going to come down on me on this but it's been my experience, not a doctors.
I have CLL and take antihistamine 3 a day for allergies. But I am also allergic to allot or drugs too. As for the probiotics you mentioned I took some and they made me very sick. Interesting about vitamin B12. I might try some thx
I am totally fascinated by this topic. I had severe, sometimes truly debilitating, allergies from age 3 until I started treatment (ibrutinib + rituximab) at 46. It was not unusual in the spring and fall hay fever season for me to sneeze 50 times and go through an entire box of tissues in a day while feeling like I had the flu (but no fever, etc.). Often it would lead to 3-4 sinus infections a year and all my childhood asthma attacks were triggered by allergies. I don’t know if it was the disease or the drugs that stopped this but I now only ever have any issues if I’m outside when the ragweed is at its hilt. I’ve switched to Venetoclax and was worried they would come back, but so far so good.
I kicked my 20 year Zyrtec and Flonase habit and have had basically no sinus problems in 2 years. On your comment about Neti pots, I also used them constantly and was probably too blasé using tap water. I have given them up completely; if I’m ever sniffly or have a blockage I just use Arm & Hammer saline solution in a pressurized can so there’s no risk of admitting any microbes to my sinuses. If I’m honest there are lots of days when the quality of my daily life is better with CLL than with the level of allergies I had. Silver linings I guess! I very much hope that yours level off. I’m personally convinced there are connections between the immune imbalance inherent in severe allergies and CLL, but I’m content to let the researchers figure that out over time.
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