I am wondering whether more of you have had a problem with allergies since your CLL began and since you have started treatment with Ibruntinib or suchlike. For me it seems to be an ever worsening problem. It began 2 years before diagnosis with an insect bite allergy, which by now totally dominates my life in the summer months here in Provence where there are mosquitoes and other biting insects. Then I have had a serious allergic reaction in 2013 while on holiday in Turkey and was on cortisone for a month - the suspect was the high doses of complimentary medicines I was taking. Then 14 months ago I had a reaction to a local anaesthetic called naropeine. It did not work and caused me extreme pain until I passed out and my heart rate went very low. After tests they could not establish a true allergy but said it was an intolerance. In fact something like this had also happened a few years earlier. And now I have suddenly had a bad allergic reaction to a food I have eaten, most probably almonds and walnuts. I usually eat a lot of nuts since I like them and believed they are good for me and because we have many walnut trees in our garden. But I am not sure yet that it was only the nuts and have cut out dairy as well. As I love yoghurt that is a hard one for me.
I am still on cortisone and antihistamines but after 6 days am beginning to feel better. It is worrying though , and I cannot help thinking 'what next?'. My inclination is to think that the Ibrutinib could be making me ever more sensitive. The CLL itself is well under control and so I do not think that is a factor in this event.
Does anyone have any comments on this?
Thank you,
Kunderke
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Provence
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hi Provence. I saw a dermatologist for increasingly severe reaction to insect bites 4 years before my diagnosis, but looking back at my blood results I clearly had cll at the time. It’s apparently well known, but rare, in CLL. Because I quickly get cellulitis I have to keep antibiotics at home.
It’s a real nuisance but must be a nightmare for you if you have mosquitos all around.
I’m obsessive about stopping bites too so I carry on with DEET and screens. To be honest I’ve always had big reaction to mosquito bites but worse since CLL and the increased reaction completely correlated with my blood tests. I have been on V&O for 5 months, and weirdly I now can tolerate lilies in the house (used to make me sneeze), and I don’t get wheezy anymore.
I have noticed that allergic rashes also came with cll for me - eg very allergic to some natural botanical creams, and ivy! I haven’t tried those out while on V and o.
I have an inherited rare skin condition called DSAP Which also appears spontaneously in some people with depressed immunity - and indeed, while being treated it has got worse.
I assumed that being on treatment was suppressing my immunity so that I didn’t get my hay fever etc, but that it made my skin condition and skin allergies therefore worse.
I was hoping that some of mine would improve after stopping treatment in about 7 months.
Sorry I’ve waffled a lot - for me, it was the cll that made all my allergies worse. I agree, would be useful to hear from other people on Ibutinib.
Thanks Pearlpink for sharing your story so comprehensively. Yes, the insect bite allergy is a real nuisance and it completely dominates my life as soon as the insect season starts. It is now mid-February and I was in the garden two days ago and already got bitten and have a big red swelling on my forehead! I am in the South of France so spring does start earlier than further north. I have to live with it and have made many adjustments. I wear a net over my face ( can be found in Amazon as mosquito protection fishing gear ) and have a net barrier at our front door so they do not get into the house. I do not like DEET and use a very effective spray based on essential oils. In the house there are mosquito zappers. In addition I use special clothing when I go outside for a significant amount of time. Against the bites I take a daily anti-histamine and have an effective local steroid cream, which has really made a huge difference in managing this problem.
I have become a very indoors person as a result of all of this, which is a great pity since we live in a beautiful area.
So since I am already living with such restrictions, as well as having to avoid the sun, my heart sinks a bit if I think that food allergies are the next thing to be taking on board. But on the other hand , I usually feel well and the cancer is under control, so I have a lot to be grateful for.
Yes, having had no allergies pre-CLL, I've developed 2 big adult-onset food allergies since my CLL appeared in my bloodwork - dairy and tree nuts (cashew/pistachio as the "primary" anaphylactic so mango is also included b/c it's the same family - the mango actually hurts the most b/c I loved it). Both appeared following periods of strong illness, so now I really, really eat a careful diet when I'm really sick (vs just a sniffle).
TL/DR - I've been there, and the allergy development sucks. Although in a small silver lining, it makes eating a clean, low-inflammatory diet so much easier b/c you can never get dessert at restaurants and you can't eat 90% of grocery store processed foods if you can't eat dairy...
Thank you MisfitK, for sharing that you too have developed food allergies. I am not sure what TL/DR means, could you please clarify? I am no good at abbreviations, this may be a cultural thing for I do not come across them in my contacts usually. But anyhow your message is clear and yes I can see the problem that most processed foods become impossible. I am still hopeful that I do not have a dairy allergy's, that it is only the nuts. That in itself is already difficult since we have 6 walnut trees in our garden!
I do think that it is good not to eat processed foods, so this will indeed be an incentive to eat purely.
too long - didn't read:). I've posted about allergies before, so that way folks who've seen those posts could just read the bottom (and didn't need to read another full post again:)...
I was allergic to crab long before CLL but I developed an allergy to nuts and also treatment for heartburn.
When we go out to eat, of course I advise the waiter about the crab allergy and nuts. If my son is with us, he can’t eat gluten. And we have to choose his menu items carefully because he has no teeth. Veggies are restaurants are rarely cooked enough for him to eat at restaurants.
I don’t have a huge reaction to crab now - just get itchy after a few hours. Benadryl works well if I wake up itchy.
Thank you CycleWonder. It seems that the reaction to crab is your main problem from what you write. And good that it is not so serious anymore and can be controlled with a little Benadryl. Unfortunately my reaction was much more severe than that and now a week later I am still on cortisone as well as anti-histamines.
There are a lot of things people are allergic to, and nearly all of them are plant-based. On top of that are the dairy based allergies. I heard about an allergy to clams and eggs , but those are very rare. This brings me to my favorite subject of "just eat meat and eggs and nothing else" and all your food allergies will magically disappear 😁
Totally agree! ALL of my lifetime allergies completely disappeared when I started eating a meat-only diet a year and a half ago. It's been over 2 years since my CLL diagnosis.Most auto immune conditions disappeare on a carnivore diet.
Everyone their own preferences but I would not feel good on a meat only diet. And I think it is very important to have fibre for the gut, as well as many of the nutrients that plants and fruit provide. But I am taking note of what you say and have noticed myself that I have wanted to eat a lot of chicken over the past week. I have always known that chicken is a very safe food for me in many ways. I am not convinced about red meat, however.
It might be something worth looking into. I feel absolutely amazing on a meat-only diet. Expectations may not be reality. Your allergies are bad enough that you decided to post about it. Completely eliminating them with diet could be a solution that is only a 30 day trial away. I guess it depends on how important it is to you. I absolutely believe that it is plant toxins causing autoimmune issues. I've seen what happened to me when I completely cut plants out of my diet.
I do not believe that fiber is important at all. We have been led to believe that it is, but there has never been one interventional, randomly controlled study that has ever proven this. Correlation is not causation. Rather, the research shows that fiber itself can lead to cancer. Fiber is what causes the "Blockages".
There are no necessary nutrients that are in plants but not in meat. And nutrients in meat are much more bio-available than in plant form. I haven't died of scurvy, for example. Yet most people wouldn't even consider red-meat to be a source of Vitamin C.
Allergies are a big problem for me. I had a bad reaction to a certain type of tree when on holiday in Barcelona, over 30 years ago. Since then I have had food pollen allergies to lots of fruits and nuts. I also have insect bite swellings and hay fever and I’m allergic to cats, some dogs and lots of random things like shampoo and face creams and sun cream. All if this started in adult years. I had a horrible reaction to an accidentally consumed hazelnut a couple of years ago. I had an over-sensitive mouth for several weeks afterwards. I was diagnosed with CLL stage0 in August 2022. My worst experience happened this Christmas. I’m still suffering. Something caused a reaction which affected my mouth, tongue and lips. My face and jaw were very swollen. I still have a slightly swollen jaw, swollen gums, blisters on the roof of my mouth and canker sores on my lips. My GO referred me to the facial clinic but no one has determined what is wrong and no treatment offered. I’ve managed with a mouthwash for sensitive mouths which I bought online and which has helped, a lysine based lip salve, which has soothed my cracked and bleeding lips and a propolis based ulcer product which also seems to help. In addition I’ve had lots of headaches and muscle aches. I saw my dentist who said I have no dental problems but thought I had either an allergy or a virus. Very gradually, it is leaving me and I’m starting to feel better but it has been a really unpleasant couple of months, especially when the doctors were checking for mouth cancer. I’ve been very stressed and miserable.
Sorry to write such a long reply but I do empathise with your problem. I was wondering, too, if CLL and allergies are related.
Hello, Trying to keep bite free where you are must be very difficult. I used to live in Normandy and there were what translated as August mites - microscopic, you picked them up in the day, they bit at night, then the bite and itching lasted for days. That’s without extra reactions.
I’m happily still on watch and wait (diagnoses five and a half years ago), since diagnosis I have developed some arthritis - nothing too bad right hip has its moments from time to time and some of my knuckles have swollen up. Which may be cll, run in the family or just one of those things.
Recently I became aware that I had developed a reaction to dairy - not a full scale intolerance (post nasal drip, cough, congestion, dry mouth - that sort of thing) and now try to avoid dairy (I have found a very nice plant based yoghurt). I don’t go the whole hog (can’t resist the occasional pizza) but the reaction comes every time. I feel “sure” that that is a cll thing. As such I suppose it is more of a nuisance to people around me having to listen to me clearing my throat every few seconds.
I feel very lucky that so far any symptoms that I have come down to a nuisance but interesting in a “what is my body doing now”? kind of way. Good luck to you.
Thank you, Clare, your post makes me think of symptoms I have been having for years without paying much attention to them. Since starting on Ibrutinib in August 2020 I have been having a runny nose, especially in the mornings. I don't eat at night so it makes sense that that could be food related. Was it the nuts already, or do I also have to look out for other allergies? That is the question, and for now I have no answer yet. But to be prudent I am now also not eating dairy.
And yes it is an ordeal in July and August when insects are everywhere! Even the bite of a tiny tiny insect becomes a large itchy swelling, whilst a mosquito bite can become a significant problem. I am managing though by staying indoors and doing all the things I have described in my previous email. Life continues!
I am glad for you that you have such a long watch and wait and hope that your allergic symptoms will remain light. All the best.
to be fair it took over a year to notice that I was fine in the morning and getting worse throughout the day - I was eating a lot of dairy so I cut that out. Instant improvement. Ate a piece of cheese - runny nose the lot. Still eat the occasional pizza though!
Like you, I look forward to going through Lankisterguy’s very helpful reference bibliography to see if I can find some answers to my own rapid increase in allergies which may or may not be linked to CLL and/or CoVid (regarding the latter, my doctor has said there has generally been a large increase in allergies over the last 18 months which could well be down to CoVid in some form).
Whilst I have yet to experience major problems from insect bites, and although I have had cellulitis, my major problems seem to have been a rapid increase in severe hay fever like symptoms all year round, and even worse when in Mediterranean countries, including sore throat, poor mouth and gum health, a sudden emergence of eczema over the last year and a slightly debilitating recurring dizziness over the last 18 months.
Current diagnosis is a complete histamine overload with my body managing histamines badly, and although the various anti histamine pills I have started taking help a bit, they certainly have not proven a miracle cure.
Immediate next step is some fairly comprehensive work with a nutritionist/functional medicine practitioner to see if the histamine agenda in my gut micro biome can be reset. In the meantime, very sadly, red wine and alcohol generally are very much off the menu!
Here’s hoping that your symptoms continue to improve and that you find a way to control the issues over the longer term.
And as a final thought, almost certainly not related, but our 4 year old Labrador has suddenly come up with bad allergies which the vet has not only said is a histamine overload, but also that they have seen an unexplained rapid increase in the number of dogs with histamine related allergies over the last year. Curiouser and curiouser…….
Thank you for your post. You have said two things that have aroused my interest. The first is that you link your gut microbiome and your 'histamine agenda'. This is obviously something I need to inform myself about, since I had no idea there was a connection . And the other is that you refer to the possible influence of Covid on allergies. I think of course immediately of the vaccines I have been taking. Could they have an influence? I suppose no one would know as yet, but it is an interesting thought.
I am at an early stage in trying to work out whether I can manage my histamine overload with rebalancing/improving my digestive system but if I come up with any conclusions I will certainly repost here.
Allergic reactions is how many of us get duag with CLL. I myself like you years before diagnosis started reacting to insect bites that as an outdoor person made summer a nightmare. And they got worse every year needing antibiotics and antihistamines to control it . But good news is once I started treatment in my case ibrutinib back in 2017 once I reached remission around 10 months later the reactions have stopped . Hope this helps
That is wonderful that the reactions stopped for you! Unfortunately that is not the case with me. I have been in remission for 2 years now and I have not noticed any effect on my insect bite allergy and now I have this food allergy as well.
I started taking Loratidine 10mg daily a couple of years ago during hayfever season and found it helps with bites and sore eyes as well as respiratory problems. This year I have carried on through the winter and have had fewer food reactions and no eye infections. My haematologist is aware of my seasonal use but I need to discuss continuous use at the next appointment. I discussed this informally with an immunologist who thought it was OK but said that Cetirizine might work better. Generics are a lot cheaper!
I take a daily anti-histamine from June to October - during our mosquito season. I will watch with interest this year whether it had an effect on other allergies as well. Thanks for sharing.
I am glad for you that that works. I don't have sun allergy but have to stay out of the sun nevertheless because I get skin cancer very easily since I am taking Ibrutinib.
Hi Provence. I have had horrific reactions to mosquito bites. For a repellent, I have had success with a product called Repel. I am in the US so don't know if it is available in France.
Hello Jorjabcs, I have quickly googled Repel, but it does not seem to be available here. I am however very satisfied with the UK brand Incognito, which protects me well. It is just a nuisance to be constantly applying it! Thanks for your suggestion .
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Eye and facial problems - CLL or something else?
SKIN WELTS!
Not “sick” enough for an IVIG treatment...
Still testing positive after 10 weeks
