Hives and CLL

[DaveCll]

This is my second bout with Hives. Does anyone know if it is related to the CLL?

[cllady01 Former Volunteer]

DaveCll, yes hives can be associated with CLL in several ways, treatment, foods and insect bites can cause flare ups for us.

Your best bet is to talk with your Dr./RN, give a description of your rash and let the Dr. determine your next move.

For some reading of other's experience until others reply, there are several suggestions in previous posts from those who have experienced hives. Beside your open post (or scroll well below) there is a "Related Posts" list that has several Hive/Rash titles showing.

[DaveCll in reply to cllady01]

Thank you

[cllady01 Former Volunteer in reply to DaveCll]

Also, aloe vera is said to be a good soother for rashes by some who have been on Ibrutinub and had rashes. I'd use the plant direct, it is a succulent and easy to grow as a house plant. You just cut off a limb and apply the gel.

Or, you can also buy aloe vera creams.

[81ue]

Where are the hives located and are they small red bumps, or large? Limited in area or all over?

[DaveCll in reply to 81ue]

They began on my knees and on my thighs. Then moved up to my waistline and on my back and chest. The Allegist suggested I double up on the antihistamines taken two Xzzal at night and two Allegra in the morning. So far only a little improvement mostly gone on my chest and back but still on my legs from calf up to buttocks. I was sopposed to have knee replacement surgery today but was postponed until middle of next week.

[81ue in reply to DaveCll]

So sorry you have that extensive involvement of hives. I do believe it could be CLL related and hope you can soon find relief. It also may take you awhile to determine what the trigger was if it repeats given how spread out it is. It could be external or internal cause.

[stunned]

i suffered for 4 months with severe hives from my knees up to my shoulders and varying in size from small heat lump sized one to a huge one that covered my stomach in a mass that was raised and red and very itchy.

Tried several anti histamines until i was put on Atarax twice a day and i havent had a single hive for 3 months and i have now started on Flair Trial on Ibrutinib and can still take the Atarax.

Anne

[DaveCll in reply to stunned]

Thanks for the information what dosage and strength Ararax did you take?

[Lisa-1959]

I dealt with several bouts of hives a couple of years ago, but in looking back, it was always associated with a lot of stress and anxiety. Obviously the CLL diagnosis itself can bring that on, but I also had other things happening with family/work that added to my stress load. Wonder if the extra stress of the knee surgery could have contributed to your hives???

[DaveCll]

not sure but the Hives occurred two month ago and went away after treatment of Pregnasone. This time same treatment but they haven't gone yet.

[tomreynolds]

I don't know the answer BUT I have had them twice. never ever had them before.I took benydryl ..seemed to help

I wish i knew the answer to this too tom

[WinJ3]

I suspect it's CLL related. About two years before I needed treatment for cll, I started getting rashes all over my body. It was diagnosed as urticaria vasculitis. The itching was so bad I couldn't sleep. After my treatment, the rashes subsided a lot. Now I can sleep thru the whole night. I Would suggest seeing a dermatologist.

[DaveCll in reply to WinJ3]

Thank you for your reply but I have already seen a Dermatologist and he sent me to a Allergist seeing him now but keeps going away and reappearing the next morning

[LovecuresCLL]

Yes I get hives and it’s related to CLL. We produce “junk” antibodies that get triggered easily to anything. Get a great dermatologist.

Avoid bug bites and foods (shellfish) that you may be allergic to. Get hypoallergenic soap for showers and washing clothes. Avoid the sun as it can trigger a solar urticaria. Stress can trigger hives so avoid stressful situations.

I take Claritin. It helps some. Of course oral steroids will help, but I avoid them unless it gets really bad because of the side effects of oral steroids.

As I am getting treated for CLL (O plus V) it’s slowly occurring less and less with time. So there is hope you won’t have to live with it forever.

Good luck.

[DaveCll in reply to LovecuresCLL]

Thank you

[Izuni]

Hi, I have been suffering from chronic urticaria for five and a half years now. Doctors don't know its cause, I've been taking Allegra for all these years. There were periods in which I had to take 4 x 180 mg a day to stop the symptoms. In Sept 2018 I was diagnosed with CLL. I live in Poland. My oncologist say there is no connection, except that chronic urticaria shows a dysregulation of the immune system. I wish you all the best.

[DaveCll in reply to Izuni]

Thank you for your reply. Best of luck to you.