The Leukemia & Lymphoma Society - Fighting Blood Cancers
15 Replies Latest reply: May 1, 2012 2:14 PM by DONNA RSS

CLL and Hives

HeleneL Registered Users
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Hello. Although I was diagnosed with CLL in January of this year, prior blood tests show an elevated WBC going back 5 yrs.. Oddly enough I had 4 CBC's  with a few different drs., and no one thought to investagate it further. I'm not complaining because it would have been 4 more years of "watch and worry" Last night I woke up with a nasty case of hives on my arm and torso. In the past 5 years I had two separate instances of  hives that lasted for apporximately a year each. Each time I went to several drs. and they could not figure out a reason for them. My question is, has anyone else here had an experience with hives and is there any literature out there of hives being a symptom of CLL.?

Helene

  • Re: CLL and Hives
    NorthStar Registered Users
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    Hi : Haven't heard of hives - but make sure they are not shingles. Shingles show up a lot in CLL patients because of the compromised immune system. I'd get to a doctor and confirm the diagnosis. I had shingles a few years ago.. when the welts showed up I thought they were bug bites ( I'd been on vacation) but they got very sore and I had lots of pain... never heard of hives which tends to be an allergic reaction. but I'd get to a doctor as soon as you can.

     

    Northstar

    • Re: CLL and Hives
      HeleneL Registered Users
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      Thanks for replying. These are definately hives.I have had a lot of experience with them. I also have had shingles before so I know the difference.

      • Re: CLL and Hives
        HeleneL Registered Users
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        Hello again.

        I finally found an article on (emedicine.medscape that mentions heat intolerance and uticardia ( hives) as a result/symptom of CLL. I suspected it was connected but I couldn't find any articles on it. Anyway, I would still be very interested in hearing from anyone who has an intolerance to heat and/or hives. I also would like to hear from any of my fellow cll friends. I for one can always use a little support. I would also like to support others like me.

        Helene

        • Re: CLL and Hives
          Mrs.T Registered Users
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          I am in remission from cll. I am 70years old and find it difficult to keep up with all the terminology but  I keep my eye on the postings here. I have found them very helpful and the people have been extremely helpful to me in dealing   my diagnoses. I was given my first treatment of  Treanda lst year and have been in remission since. But I have had two bouts of shingles and now I seem to break out in a rash here and there. It is not hives, no swelling as such just an  itching little  rash.

        • Re: CLL and Hives
          Annette Registered Users
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          Dear Helene,

           

          Hives have been a big part of my life these last few years and I had NEVER heard of it being associated with CLL before. I was diagnosed in 2004, but didn't start having hives until about 2007. They were constant, daily, worse in the evenings and mostly concentrated on my back side between mid back and mid thigh. That lasted until the middle of last year slowly clearing, then stopping all together. In October 2010 my spleen swelled up and it was determined to begin chemo.  I have had three rounds of RFC, Oct.,2010, Nov., 2010 and Dec., 2010, a bone marrow biopsy/asp. in February (which found no evidence of CLL) and nothing since. I am still having extremely low white counts (consistently around 0.5) and platelets, so cannot have any more chemo until these have recovered. My doctor thinks there may be another underlying condition, so we will explore that in June when I got back for my next check.

           

          I hope the hives will clear up spontaneously, as they are annoying and uncomfortable. I thought it was brought on by stress.

          • Re: CLL and Hives
            HeleneL Registered Users
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            Hi Anette,

            My onocologist does not think the hives are related to my CLL. I am not as sure as she is. Anyway, we probably will never know. I hope you are doing better than me. Right now I am loaded with hives. It is so weird , it is almost always at night or in the morning. I took a claritan, I hope it works.

            • Re: CLL and Hives
              Annette Registered Users
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              Dear Helena, my hives always responded pretty well to Benedryl. I never needed anything more than that for the most part. You made me thankful that I am not dealing with hives at the moment. Good to have things to be thankful for. I hope yours improve and finally completely clear up really soon. Annette

              • Re: CLL and Hives
                HeleneL Registered Users
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                Hello,

                I am happy to report my hives have dissappeared as fast as they arrived. I believe they were heat related, (not prickly heat thogh, they were true hives.) Anyway, I am glad they are gone.

                Helene

                • Re: CLL and Hives
                  gritzinger Registered Users
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                  Hi Helene,

                   

                  If they come back, consider that they may be food related. I had hives for 2+ years. They came on suddenly and all food allergy tests were negative. A few months ago I gave up dairy and chocolate and no more hives. If I eat anything dairy they come back.

                   

                  -Greg

                  11q del

  • Re: CLL and Hives
    warrior57 Registered Users
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    I was diagnosed with MDS 1/18/2010 and had a MUD stem cell transplant in May 2010.  I have since developed what they call "chronic hives" that pop up out of the blue for no particular reason and are often worse at night.  I was perscribed 2 Allegra/ day and  that has helped immensely.  The docs at Mayo said they are most likely a result of all the blood transfusions and donor immune system.

    • Re: CLL and Hives
      Annette Registered Users
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      Dear Warrior57,  My doctor mentioned MDS at my last appointment. Not a diagnosis, just a possibility since my white counts has been around 0.5 since my third round of chemo in December, 2010. I even had two shots of Neulasta with no apparent positive result.  I have been reading about it and not real excited to think I will be dealing with something else. That is one of the side effects of cytoxin and chemotherapy in general, but I guess most of us don't go in thinking about the worse case scenario. How did they come to your diagnosis? Annette

  • Re: CLL and Hives
    DanS Registered Users
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    I have had a lot of itching episodes and I suspect it is from my increased white counts. I never had these before I was diagnosed with CLL, and of course it could be psychosomatic.   I am 51 now and I was diagnosed in September 2010 with CLL.  My white counts were 42 k at the time and I had uncontrolable hand itching that was relieved by benadryl.  As of this month my white counts are about 96 k .

     

    I get what I call "white bites".  These seem to be little hives that pop up from time to time and then go away within hours. They look a lot like a bug bite but they have no residule inflammation after they resolve in a few hours.  I happened to wake up this mornng with one under my night shirt on my lower left abdomen.

     

    My oncologist has told me he has seen this in the past with some patients.  Benedryl relieves the itch for me.  Your milage may vary and consult with your oncologist.

     

    Dan

  • Re: CLL and Hives
    nurseshorty1977 Registered Users
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    I tried to send you a private message, but I don't think it went through.  My wonderful stepdad was diagnosed with leukemia 7 years ago and had similar trouble with his stomach.  He lost an extensive amount of weight and the doctors told him that his leukemia and bowel/abdominal trouble was not linked.  They then believed he had Celiac disease when his symptoms did not go away.  I am a registered nurse in ICU and I knew that he did not have Celiac disease.  My stepdad could barely drink water without feeling so bloated that he thought he would explode!  During this time, my stepfather also had three separate occasions where he broke out in external angioedema, or massive swelling.  Twice his face and lips grew about 3 times the normal size and once his groin became enlarged.  Thank goodness, I still lived at home while I was attending college and was able to rush him to the hospital.  Edema and hives are very much the same type of response.  After his doctors told him repeatedly that his leukemia was not related to either his angioedema or his abdominal distention and bloating, I decided to investigate myself.  I found that people who suffer with leukemia can have what is called hereditary or aquired angioedema, which is DIRECTLY RELATED TO LEUKEMIA PATIENTS!!!!  I printed off an article that my stepfather showed his oncologist and the doc decided to test him for this.  BINGO!  The tests he ran were C4, C1-INH and C1 levels.  After confirming his diagnosis, they started my stepdad on a combination of Prednisone and Danazol (a hormone) and he feels much better!!!  Good luck to you, I hope this gives you some insight.  Whatever you do, don't give up!!!!  Let me know how it goes.

  • Re: CLL and Hives
    debwarren Registered Users
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    I hope you all have found some relief from hives. I have Stage 1 SLL which was diagnosed 2 years ago. For the past month I've been dealing with periodic hives that erupt every morning after I stand up (not just wake up). They also came on last summer and the summer before, which I attributed to construction dust since we were renovating and adding on to our house. Both times, they disappeared altogether by September. I went to my PCP for allergy testing and all that came back, other than my known cat allergy, was a dust mite allergy, but a relatively mild one. (I asked for a prescription for a cleaning lady, but it didn't fly.)

     

    Like you, my oncologist doesn't seem to think there is an SLL connection, but I have my doubts. It would make sense that a weakened immune system would lower resistance to any sensitivities. The especially odd thing about my hives is that I don't have much of an outbreak during the day. The major onset is after lying down for long periods and then standing up. I've done a few experiments at home and noticed that the hives come mostly upon waking up and standing. About 5 minutes after getting up they start on my palms and work their way up my arms, down the sides of my stomach, down my thighs and on my feet. This happens also when I lie down on the couch for a couple of hours and then stand up. If I wake up in the morning and then immediately go to the couch and lie down for an hour, the "morning wake-up hives" hold off until I get up off the couch. So it's not the waking, but the standing after lying down that seems to bring them on.

     

    I use a topical cream, triamcinolone acetinide, 0.1% which offers quick relief. I don't like the idea of taking benadryl every morning, so this works for me. Usually, the itching is relieved within minutes and the hives disappear within an hour or so. I'd love to hear if anyone here has updates or resolution to the hive mystery.

     

    Thanks,

    Deb (Pittsburgh)

    SLL, Trisomy 12

    • Re: CLL and Hives
      DONNA Registered Users
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      I have had several rapid outbreaks of hives, including difficulty breathing and syncopal events.  I use benadryl and epipen for my monthly occurances.  Allergy visit with blood work, with high WBC and recommendation for Flowcytometry.  Inviting me into the world of CLL.  Mature CD5+, Trisomy 12, unmutated VHIG.  Did a four weekly round of Rituxan, now every other month for next two years.  I have had outbreaks of the HIVES, again on a monthly cycle, but nothing yet of this month!  Hoping just maybe Rituxan has helped.?

       

      /Donna

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