I'm 48 years old, have unmutated "accelerated" SLL diagnosed January 2021, been on BTK (acalabrutinib) since then.
Periodically I experience awful outbreaks of hives. It started a couple years before diagnosis and still recurs even though disease is controlled.
It's happening right now, brutal. Mostly on my right arm. I also have a sore throat and the nodes seem to be aggravated in my neck and upper body (shooting pain). Joints in my hands also inflamed. Interesting to me how those other symptoms flare up with the hives.
I never got hives before so I figure they are the result of an aggravated immune system; in fact, prior to diagnosis I remember looking at them thinking something was up with my immune system.
Rheumatologists say they don't know why some people get hives for repeated or prologed periods (chronic uticaria) but I chalk it up to SLL / CLL.
Anyone else experience this or know of a link between the two conditions?
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Amberesque
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I started developing hives to assorted things since diagnosis. To the dye for CT scans, to things with iodine like shrimp, and cottonwood tree fluff. For years before CLL I took benadryl daily to prevent vertigo so that may have staved off hives until I cut back the antihistamines around diagnosis. I don't know if linked to CLL but I suspect it, too. Zero history of hives before vertigo and antihistamine use. As soon as a hive appears I take benadryl so I don't have the intensity that you describe.
Hi yes I have that! I had the hives getting progressively worse about four years ago. My doc did a bunch of genetic testing before my treatment began last August. I, too, have more of an SLL presentation. Anyway, they tested me for the cryogobulinemia and it came back positive. It appeared that this very rare blood disease can be caused by CLL and is the culprit of the symptoms you describe.
I am on Venetoclax mono therapy. The hives have gotten better, but some other symptoms are a problem as bad we are determining the next steps. I would suggest asking for the very specialized tests for cryo,
I get hives, too, and apparently what I thought was acne on my face is also hives. Thank God for make up. I have had them on numerous drugs. Never had them before. So don't know why. Hang in there!
Like your other respondents, I also began to get hives after diagnosis. They would appear every morning, like clockwork, shortly before dawn. Benedryl helped with the considerable itch. Then, after this had happened for 2-3 months, it just stopped, and I haven't been bothered since. Hope yours stop, too.
I've had hives and itchy skin on and off (mostly off) since childhood, and at times it's been rather debilitating. I take a Xyzal once daily at night if needed, and if it is really bad Atarax always knocks them out and works way better for me than Benadryl. I only take the Atarax when absolutely needed since it is very sedating, way more so than even Benadryl. I've also added famotidine or Tagamet to the mix at times, and the combo with one of the above-mentioned antihistamines has brought relief.
Hi Amberesque , i started getting hives occasionally about 2 years before my CLL diagnosis , and sometimes all over my body but mostly localized to one part of my body. sometimes for a few hours and sometimes for a couple of days .. it is TERRIBLE .. my wife thought it might help me feel better to rub COLD aloe vera gel on my skin , well amazing within an hour or so i could tell they were going away in 3 or 4 hours they were all gone and i felt like i had never had them to begin with ... .. we buy it in a pint bottle and keep it in the back of the fridge .. i had hives occasionally when i was on calquence but i had to stop the calquence because it caused cytopenia ...then i started O and have not had hives since ... my raynauds that i have had for years went away also ..😊... i am now on V for the past 7 months and doing very well ... hope you find relief soon ... blessings , and 🙏,,, james
Amberesque: I have also been having outbreaks of hives the last couple of years. I am still in Watch and Wait so medication isn’t an issue. I have talked to both my oncologist and a CLL specialist and neither think they are related to my CLL. I am currently taking a daily Claritin to keep the hives at bay.
I also talked to a hive specialist, and he seems to think that I have a hyper active immune system.
They seem a bit mystified as to why I keep getting them.
I find it annoying when CLL specialists say this kind of thing isn't related to CLL, a systemic disease that affects the whole body including skin. I'm sure I have a hyperactive immune system because of the CLL and that's why the hives. I did see a rheumatologist once and he said no one knows what causes chronic uticaria (hives). I'm going with a confused, reactive immune system. I hope yours settle down.
A confused, reactive immune system., indeed! I also hope mine calms down. I have been able to manage it with antihistamines. I’m dreading the day that sort of thing doesn’t do the trick! Good luck to both of us!
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