Does anyone know if our condition means we’re more susceptible to allergies?
I’m really struggling at the moment with what appears to be hay fever and maybe dust allergy. It’s making me feel quite unwell.
I used to have hay fever as a child but grew out of it. Also we live in an old house and the dust is a menace to keep on top of.
I’m breathless, have horrible post nasal drip that gives me a productive cough in the mornings and a dry non productive cough afternoons and evenings. My eyes water like crazy, I look like I’m crying.
I’ve done several Covid tests, all negative.
I live in London for reference.
just wanted to reach out to our community, because you always make me feel better.
Emma
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Miu48
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Yes, we are likely more susceptible, but I don't think there's been any long term study done on it. It just makes common sense with the known science about allergies.
I hope you feel better soon. I am also a female in her 40s who experienced adult onset allergies post CLL diagnosis, and now have an Epi pen and pills when needed, although I have only gone to the allergist for food testing, not environmental testing (since my environmental sensitivity is mild, and normally limited to spring, whereas one of my 2 main food allergies is life threatening). I had zero allergies growing up, so this has been new.
I have always thought it did but don’t forget that the pollen count in London is Very High at the moment. Do you take antihistamines ? Might be a good start and discuss with your pharmacist.
I now think this is likely. I have had CLL for 15 years but still on W and W. I had eczema and asthma as a child but grew out of the asthma. I also get hay fever. This year is particularly bad. I had blepharitis (watery eyes) back in May and in the last 2 days really bad hay fever. It was worse yesterday when I took a trip from my home area (Herts ) to near Oxford. I took a COVID test yesterday and it was negative I have also been recovering from a coldDave
This is pretty much what sent my hubby into treatment. His blood work was still in the "normal" range with little change in 5 years. But he had large reactions to his vaccines, not just COVID but shingles too. He got poison ivy that sent him to the hospital even though he was fully clothed. He was suddenly allergic to antibiotics and creams. He woke up with hives covering his entirebody one day for another med and finally symptoms like yours that had sinus surgery next on the list. The surgery found lymph tissue from CLL was the primary cause of his obstructed breathing. All of this compounded over the course of a year and it took consulting between more than one doc to see the whole picture. We are so blessed that treatment was relatively easy and made a life altering difference.
If you are in the US, might read about alpha gal, tick-borne illness spreading widely in east US -- that makes you allergic to any intake of mammal -- so meats, dairy, many medicines and supplements made with gelatin or milk, etc. For many, first symptom is hives. Many docs don't even know about it yet or are just getting up to speed.
I don’t have CLL. I spent several days in London over the weekend and now have the worst hay fever I have ever had with similar symptoms to those you describe. I did know that I react badly to London plane trees (when I worked in London I would end up struggling to breathe in June). This year seems to be particularly bad.
I have had hayfever since I was 10 which got worse in my teens. Because it gives me breathing problems and my throat and the roof of my mouth itch terribly, I always take cetirizine. This year I am using a nasal spray and eye drops. Like you my eyes are dry and gritty.I thought ivig improved hayfever. That would show immunity made a difference. I am not as bad as I was but this year is the first time my eyes have been as uncomfortable.
It is especially bad this year Anne and to make things worse I look like I have spent an evening locked in with hundreds of mosquitoes. Serves me right for forgetting to replace my antihistamine. This is the worse in about 6 years.
Thats interesting because I look like that. My complection is smooth and makeup covers any blemishes but a few weeks ago I thought I had Rosacea. The doctor gave me some fucidin cream prescribed from a photo. It hasnt gone. I am spotty. It looks discusting. Anothed trip to the doc I suppose. Acne at my age.I look like I have been bitten. Red blobs on my arms and legs mostly. Some have a slightly lumpy bruised feeling. Sometimes they fade and come back brighter. I do take meds and they stop most of the hayfever but this year my eyes are really sore and itchy.
If it doesn’t go perhaps ask for a dermatology referral. My eyes are feeling slightly better today, but I am rigorously using my blepharitis cleansers.
A friend of mine ( 🙄 ) hmmm… suggested my bites could be bed bugs, and looking online the bites are similar to mosquitoes, so now I have another worry to add to the list. No blood spots on bedding so I am sure it’s not. 🤞
It does look like bites. It did cross my mind but my hubby hasnt got bites. Maybe its my side of the bed. I will need to google.I bet I wont be the only one. I will wash the mattress cover.
It seems to come from foreign travel and interestingly from second hand furniture, which was new to me, and I did read a few years ago also found in the seating on London transport.
Do you have much water in the garden ? My cats prefer to drink rainwater so I always have a couple of bowls in the garden for them. I am sure mine are mosquito bites 🤞
I don't have CLL but my husband does WW. He has no allergies whereas mine are worse than ever. Wheezy, eye problems and in the past few years eczema. My GP had said it's age related (I'm 70) and pollution is taking its toll.
I had childhood Asthma, Allergies & Eczema & thought I grew out of it too. Last Summer I was outdoors & woke the next day with eyes swollen shut. That started Largnitis & Sinusitis which pushed me to stage 4. Pollen count is high in NYC & with that Canada Fire Pollution the air quality is bad. I wear my goggle mask to prevent it all🤷🏽♀️
Could just be co-incidence but I have had two bouts of burning mouth syndrome, triggered by food pollen allergies, recently. The reactions were severe but I did not go into anaphylactic shock. I tried to get a referral for allergy testing, through NHS but have to wait until Dec 27 for an appointment! Meantime, I have managed to find a nutritionalist who can help with private testing. I have an appointment with her at the end of June. Allergies do make you feel unwell. Since moving to live near the coast, I have not suffered with hayfever at-all. I used to use an ioniser by my bed and that really helped me breath better through the night.
I lived in Croydon for 8 years. The London issue is purely down to air pollution, which is always poor in London. As a resident you get used to it. That makes hayfever worse. I moved to Christchurch on the coast and hay fever was no issue there. However, I am in the Peak District now and my hayfever is quite bad because of all the grass. But, there is very little air pollution over the year. I would never moved back to London simply because air quality is so poor.
I had something similar and they turned out to be food allergies. How do I know? I could not get rid of them for a long time till one day I decided to quit eating all suspicious items. Most notably dairy, nuts, grains, seeds. It was a good beginning for me. The symptoms improved by 90%.
One thing I will add about allergies - if you do get diagnosed with them as an adult, bring the paperwork from your allergist to your CLL doc and your regular primary care doc and get both to upload the info into their system, so the info always comes with your files. You want as many places as possible to know your needs in case you need an unexpected hospitalization where you're gonna need to be eventually eating food you don't cook or meds you've never had before.
Docs just don't seem to send each other paperwork, so you need to do the work to get your files updated b/c allergies matter.
My allergies have gotten much worse since I had FCR. My doc says that they can change with treatments like this. He even sent me for an allergy test and it turns out that I am now allergic to many more things then the test I had before I found out that I had CLL. I am even allergic to beef now and several other food types. I now get two different allergy shots on each visit to the allergist twice a week. Hopefully this will help.
My CLL specialist said I was probably going to develop new or worse allergies as a result of CLL and this has been the case for me. It’s like everything that bothered me a little in the past has been magnified 10 times. Cutting out common offenses like dairy etc., has helped. The IVIG I have been on also caused major problems and I had to stop.
My husband, who has been in remission for the past 2.5 years from CLL, started taking a table spoon of local honey for his allergies and he is doing so much better.
I have had environmental allergies, animal allergies and seasonal allergies my whole life, but always managed them with natural or herbal remedies. However, it the last ten years leading up to my diagnosis I've developed a higher sensitivity to things: much more severe anaphylaxis where I've almost died in the past three years from 3 episodes in the hospital. I've started carrying and EPI-Pen in the last three years. My allergies range from food, medicines, mold and I find I get more wiped out from trees, grass and pollen. It is definitely due to our reduced immune system. As my CLL expert put it, my immune system is hyper reactivity mode so the smallest allergy can set me off into a life threatening situation.
I do take a allergy meds daily as well as allergy nasal spray.
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