Cll and hives all of a sudden.

[222husky]

I was diagnosed with CLL about 2yrs ago. I was already doing a healthy diet so tweaked that even more. Joined a gym as well which I generally manage twice a week as well as walking my dogs. Eat very little red meat. Like about once a fortnight and small amount. No packet food or preservatives. Organic veges and fruit. My white blood cell count has gradually kept rising. Which is very disappointing from all that I do. I have now started to get hives. I've never been allergic to anything in my life. Feeling very down with this. Have searched but can't find out why I am all of a sudden getting hives. ? If anyone can help me understand I'd be grateful.

[Glees]

My husband has not gotten hives, but has arthritis & bursitis in his hip - both since CLL diagnosis and post-chemo. I do remind him that as we age we get more issues but also that his health is fragile. He needs lots of rest and to take extra care because he is a lot more sensitive. Sorry, this is not helpful specifically about the hives but more about general health.

[222husky in reply to Glees]

Thankyou. Any info helps.

[Glees in reply to Glees]

I am embarrassed, but in thinking back my husband definitely has had hives but I guess we just thought of it in terms of a rash. It started after chemo when he developed a rash on his face & then he had it all over his hands after starting ibrutinib. CLL has made him more sensitive to his environment. He used aloe gel which relieved it somewhat. The hand rash may have been a reaction to the handles of his motorbike so I got him lightweight gloves to wear. Eventually both cases cleared up. I hope you are feeling better also.

[Newdawn Administrator]

Hi husky,

I don't suffer hives as such but I do have very itchy, irritated skin at times, particularly at night. Essentially this is called urticaria. There's so many reasons for urticaria including allergic reactions, stress, foods intolerance, auto-immune reasons and localised skin conditions which need investigating by a dermatologist but I'm convinced that our underlying immune dysregulation contributes to the problem. I'm no expert on this subject but many CLL'ers report severe itching and skin problems from my observations. Do you have your immunoglobulins monitored regularly?

This is an incredibly complicated article but I've been working my way through it and have been struck by the possibility of explanation for CLL'ers and the complicated chemical processes which must have the potential to strike at the biggest organ in our body, the skin.

This extract is taken from the article;

'It was indicative that inflammatory cascade in chronic urticaria may be triggered by altered chemokine-cytokine network and is attributed to immune dysregulation consequent to disturbed innate immunity in the disorder.'

I'm not suggesting you work your way through this but I'm posting it to reference the above quote;

ncbi.nlm.nih.gov/pmc/articl...

Hope you can find some ease from the hives which are very distressing. I expect that you've tried most of the usual suspects in terms of creams and lotions? If it continues you may need to consult a good dermatologist.

Best wishes,

Newdawn

[222husky in reply to Newdawn]

Thankyou. That is a lot of info to go through. Have been using peppermint oil on the hives. It does help but have to continously apply. Driving me mad I think. I will take not of all you have said.

[Jm954 Administrator in reply to 222husky]

I'm going to give a plug for Aloe Vera gel. It's cool, soothing and really helps to calm my allergic reactions to insect bites. It's available from a wide range of outlets and not expensive.

[222husky in reply to Jm954]

Thankyou. I have it in the garden.

[AussieNeil Partner Administrator]

It seems that some of us with CLL have heightened allergy responses and others have theirs dampened down. I don't think the experts know why...

[222husky in reply to AussieNeil]

I have never been allergic to anything but it seems that's my lot now. Thanks

[Eleanor-at-the-beach]

I was diagnosed a year ago with CLL. I found that too much niacin was giving me a red flush or itchy rash . My multivitamin had a really high dose of niacin plus I was eating foods with a lot of niacin. I changed my multivitamin and from then on have not had a problem.

( too much vitamin B-3 and B-4, or niacin or niacinamide, may cause skin reactions including hives. Also, B-7, or biotin, in large doses is responsible for skin eruptions in the form of hives or other skin reactions.)

[sandybeaches]

Sometimes hives are caused by activation of immunoglobulin E from eating a food that you have a sensitivity to, but may be unaware of. May show up as hives even 5 days after ingestion. Any new foods that you have tried lately?

Also, have you changed anything in regards to your personal hygiene products? If the gym supplies towels, etc, may be an ingredient used in laundry detergent. A lot of people are sensitive to the coconut products used in soaps and detergents.

You may benefit from speaking to your GP about medications to help control the hives.

All the best,

Sandy Beaches

[Hazel33]

I have been on watch and wait for 6 years but have had attacks of psoarisis, eczema, dermatitis and all sorts of skin problems all my life, female now 68. Can be quite upsetting at times but have learned to cope. I have often wondered if this is anything to do with CLL. I stay away from any perfumed products or anything that will irritate the skin.

[AR0613]

Hi 222husky,

I was interested to read your post as recently I have also started to suffer from urticaria (hives). I was diagnosed 6 months ago and am a vegetarian and like you, I try to avoid processed food and additives. In my case, I developed a gradually worsening allergic reaction until my throat was swollen, my mouth blistered and I was unable to swallow food. My GP prescribed 3 different types of ant-histamine which I now take daily, and thankfully those symptoms have disappeared. We ruled out changes in diet, washing powders etc , all the usual suspects. My GP believes I was suffering from an allergic reaction to a virus. At the same time I have developed other irritating symptoms such as fungal infections and an infection in my navel...not serious, I know, but it strikes me as strange seeing as I have never had any of these symptoms before! I know it could be a coincidence but in my mind it is difficult not to associate with my CLL.

I totally understand how upsetting this is for you especially when you clearly try to take such good care of yourself, and I hope you get some relief soon.

[222husky in reply to AR0613]

Thankyou.I do feel better today after Dr told me to take zyrtec. I have very rarely in my life taken any pharmaceuticals so am very disappointed that I have had to. Dr said it was from a virus. The only thing I've done differently lately is join a new yoga centre. Done yoga plenty of times but not at this one. It was the next morning I got the sniffles and then the next day the hives. Hopefully this will be my last attack. Reading all the replies is scaring me though because so many of CLL sufferers are saying they never had allergies before CLL.

[AR0613 in reply to 222husky]

I read something recently:

"Don't spoil what you have today by worrying about what might happen tomorrow".

It struck a chord with me because I'm a worrier and so I have adopted it as my mantra whenever I feel my mind spinning off somewhere unwelcome. Take care.

[222husky in reply to AR0613]

Beautifully said. Will try to remember to keep saying.

[roszika]

Hi You said you recently joined the gym. Are you doing floor work and resting on carpet?. Are you handling equipment you never handled before. Perhaps something in the gym has caused an allergic reaction. Perhaps not. It does sound like an idiosyncratic allergy to something you are doing or eating or handling that you did not do before. Try a process of elimination of new things you have done that may have sparked an allergic reaction. I am only a retired pharmacist but it sounds to me to be and allergic reaction- cheers from a sufferer of CLL

[222husky in reply to roszika]

Thankyou yes I am wondering if it was the new yoga place I went to. I will protect myself next time I go. Much better today.

[BettyUSA]

My Husband gets all sorts of breaking out the DR. gave him some med to put on it, it does clear it up but comes back . I got other Medication over the counter (I did ask DR. first) to use and his itches a lot I have to stay on top of it . At any rate He is down to just a rash and I keep med on that it gos away . Let the Dr.take a look at the hives. Go from there and with your DR. try to find out what it is. I do not know i fit is from the chemo pill are something else,but they can do to test and see . God bless you

[Lojane]

Soon after being diagnosed being diagnosed with CLL my husband developed hives with itching. The GP diagnosed it as ringworm and prescribed anti fungals . This went on for months Eventually my husband was referred to a dermatologist who diagnosed the problem straight away as Aquagenic Urticaria due to disruption of the mast cells in CLL .

The condition was brought under control with an off label use of an asthma drug called montelucast , an antihistamine fexofenadine and low dose aspirin. He has gradually been able to reduce the doses.

I think the lesson is to get referred to a dermatologist who is a specialist and able to give a diagnosis and appropriate treatment.

Good luck

[Newdawn Administrator in reply to Lojane]

Spot on Lojane! Everything I've read leads to this issue about disruption in the mast cells in CLL. Great to hear you found such a switched on dermatologist who could help.

Newdawn

[222husky in reply to Lojane]

Thankyou that is really good information. I appreciate the time it would have taken you. Bless you.

[yorkie19]

I suffered with hives after having FCR treatment. I was prescribed Fexofenadine Hydrochloride which helped a lot. No longer getting hives but do get allergic reactions to insect bites. In my younger pre CLL days I had never suffered from hives or the allergic reactions to insect bites. Good luck, hope you find your solution.

[cllady01 Former Volunteer]

I do not have a solution to offer or an experience to relate, but I am so grateful for the question and the many very well thought out replies that made me think: We need a team of Drs. to all be together when we have an appointment, with none of them being "the authority" but all of them using the scientific method of ruling out and sorting to get to the answers.

Ha! Can I dream big? Anyway, thank you each for your considered and relative replies. It does take a village, doesn't it?

[gnlwood]

I have experienced this more so prior to being diagnosed than now but from time to time I get skin issues. My specialist said that CLL can bring with it skin problems, itchiness, rash and hives as well as Autoimmune issues.

[annabelle63]

I get hives as well and not sure why I get them

[222husky in reply to annabelle63]

Hi annebella63. Hopefully you are reading all these very helpful posts. CLL certainly could be the cause. Or should I say a compromised immune system. Goodluck

[Murzik]

I know it will sound non medical, but I do use cold pressed, organic sesame oil all over the body, 2-3 times a week. In half a minute it is all absorbed. Try also NEEM supplement and/or soap, Aurverdic herb, proven to be great for any skin problems

[222husky in reply to Murzik]

Thankyou I am all for natural remedies.

[kohelet]

Does it happen after your body gets warm from exercise and sweats? It s to me and I put a bit of Cortisone cream and it goes away.

[AnneeNor]

I had similar issues just before diagnosis. I avoid SLS ( sodium laurel sulphate)in products which has completely cleared my skin. It's in nearly all soap products but health stores have shampoos, soaps etc which cost more but are good. Hope you are better soon. Keep exercising!