Does anyone get the hives?

[Gman2]

Hi everyone, I have a lot of questions about my cll but right now I get the hives over various parts of my body in the evening( 8pm) or so before bed. The hives last a few hours and they are gone by morning and do not return until the evening. Does anyone else experience this? What does it mean? Thanks, Gerry

[Izuni]

Hi Gman2,

This is also my case.

I am suffering from chronic urticaria for almost 6 years years now, I've been taking Allegra for all these years. I was only diagnosed with CLL in Sept 2018, so my hives were present a lot earlier...

As you I am getting hives mostly in the evenings.

I wish I could give you some bright idea how to deal with it, but taking antihistamine drugs is the only option which works for me.

My oncologist says hives have no connection with CLL, except that chronic urticaria shows a dysregulation of the immune system, but from what I heard from other patients there must be direct link between the two.

Hope that you learn how to cope with it. Wishing you all the best.

[AdrianUK in reply to Izuni]

We have a screwed up immune system. It’s not just the actual CLL cells. It’s the absence of proper amounts of regulatory immunoglobulins, the mucked up levels of various highly complicated and supposed to be finally balanced citokines (which have a regulatory effect on the immune system and also affects our brain re energy levels mood etc). And we have mucked up T cells even before treatment. And all current treatments tend to make the immune dysfunction worse initially.

So no crap we should expect that at least some of us will get problems with allergies being much worse. in my case my asthma, my nasal congestion and my own urticaria which has all been minor issues in the past have become major issues since diagnosis.

Not everyone gets this. But some of us do. Just like some of us get auto-immune problems too. And of course our repeated infections and the risk of secondary cancers are all directly related to our Screwed up immune system. So when someone says it’s not really related to CLL it’s kinda crazy.

It’s probably the case that we should think of CLL as primarily an immune disorder. There are aspects of immune problems which seem to even predate the grown of CLL cells. Our body is meant to destroy any slightly dodgy lymphocytes. They are deliberately engineered to mutate to make new antibodies and to be able to multiply rapidly when those antibodies are needed. So they need to be kept in check. It seems likely that the immune dysfunction that fails to keep the lymphocytes in check is the primary problem.

So what to do about it?

I do wonder(speculatively) if IVIG might help this and wonder if anyone else has experienced that since it might help to regulate the immune system again?

I too am on high dose fexofenadine which seems to be (at least for me) stronger than some of the other antihistamines. Under close medical supervision (including ECG tests) I’ve ended up on four times the licensed dose! I still get itchy skin and sometimes dermatographia but no actual hives.

I’ve been tested and am allergic to dust mites (not new) and I think for me that’s probably the root of the problem but it’s so much worse post CLL. I will be looking into further ways to try and control the dust mite population in my bedroom.

Just in case you also have the nasal issues I also take sterimar (a sterile saline nose wash spray ) and dymista a combination of topical antihistamine and steroid spray. For me at least this cocktail also seems to help me get less sinus infections than I was perhaps by reducing the amount of static mucus.

[Izuni in reply to AdrianUK]

Hi Adrian,

Thanks for your reply and all the suggested solutions.

As concerns the high doses of fexofenadine, there where periods when I had to take 4 x 180 mg Telfast (Telfexo) daily to cope with my chronic urticaria problem. Now, luckily I am only on 1 x 180 mg Telfexo, which is actually enough to get rid of the hives.

As you mentioned, I am also wondering if IVIg treatment could help.

Wishing you all the best,

Iza

[AdrianUK in reply to Izuni]

I’m dreading having a flare up because I need the four tablets all the time!

[Gman2 in reply to Izuni]

Hi Izuni, thank you for your thoughtful reply. It helps to know that you are not the only one with this issue. I am going to start taking querecitin supplement again. It has some anti-cancer properties and acts as an antihistamine and I think it helps. I know many of the very smart people especially the administrators on the board do not endorse supplements but I do take some in hoping not to cure myself but maybe to help hold off treatment. Many tx providers and patients who have tx success talk about attitude as vital for survival. It is hard to w and w when I read that some supplements are helpful in treatment. However, I don't think I am going to cure myself but it is too hard not to do anything especially when I feel some symptoms almost everyday. Thank you for your thoughts.

[Jackpot]

Hi Gman,

I started getting hives Dec. 2018, after over four years of watch and wait. They came out of the blue and often in the evening. They were very uncomfortable and would disappear after a few hours on their own, or after taking an antihistamine. This went on for many months.

I started treatment August 2019. Since then, no hives.

Seems to me there was a cll/sll connection.

All the best.

Cindy

[Gman2 in reply to Jackpot]

Cindy, best of luck in your treatment. Of course, my hematologist tells me there is no connection between the hives and cll. Apparently, many of the strange small things that are happening to my body have no cll connection. What a bunch of baloney! The medical community doesn't want to acknowledge the connection because the they would have to treat the issue. Just my opinion. Thank you for sharing. Gerry

[HelloCLL]

Yes. I developed hives prior to diagnosis of CLL. Hystamine intolerance. I take 100 mg of Hydroxyzine every night, and avoid foods that raise hystamine levels, including alcohol, bacon, aged cheese, and a hundred other things. You may want to have an Epi-pen prescription. I don't go anywhere without carrying antihistamine medicine. No fun. D.

[Gman2 in reply to HelloCLL]

Dalvernaz, thank you for sharing. I think the quereciten is helping as it seems to have some antihistamine properties. I hope you have good health in 2020. Thank you very much! Gerry

[Sierrastar]

My dear Gerry,

Here is my experience. I have been on Imbruvica three months now.

On the very first day, hives started. They were on my upper trunk, arms, face and scalp-bright red. DO NOT scratch the itch-petichia will appear,

I gave myself this simplistic explanation. OK, my body is detecting a strange invader, the Imbruvica, (or vice versa). I kept very calm, did not contact the doctor or take any medications, and the hives would disappear after about two hours.

This lasted for most of the first month, and then they ceased.

I thought, OK, invader tolerated.

Permission and acceptance granted.

I am doing really well on Imbruvica so far and feel extremely fortunate.

I hope things improve for you. Happy new year and good health Elizabeth

[Gman2 in reply to Sierrastar]

Hi Elizabeth, you are very kind in sharing your experience with having the hives. I don't think my hives are as severe as yours were. Thankfully they gave me a break last night as they didn't show up but felt like they almost did. I know it sounds strange. I am still on watch and wait and am trying some supplements to hopefully delay the need for treatment. It is so hard to sit by and not try to help myself. I guess all we can do is to do the best for ourselves that we can and hope and pray for the best. Your information, kindness and support are appreciated. Stay well. I wish you the very best! Thanks, Gerry

[lexie]

I started to develop hives in the past 2 years. I am not in CLL treatment. Mine are not night related but pop out as I begin eating something. I had to take Benadryl to stop the rapid profusion of itchy welts. I mentioned the hives to my nephrologist and because of that and a few other symptoms I was tested for lupus. Just throwing this into the conversation to illustrate that hives might not be CLL but as others suggest an systemic immune glitch.

[Gman2]

Hi Lexie, thank you for sharing your experience and thoughts. I am not in CLL treatment either. However, the hives come and go without anything that I can attribute them to. I do think querectin has helped. Do you follow any specific supplement regime? I find it hard to wait and watch without trying to improve my health and the possibility of delaying or avoid the need for treatment. I do understand if you don't want to mention anything about your practice. Thanks very much for replying as this doesn't seem like much of an issue for the others. Gerry

[Batbie]

Hi Gman2 - I too get the hives. But mine are different. They are extremely uncomfortable and painful. However, mine come any time of the day or night and they itch like crazy. They can last up to a week or more. They fill with a watery fluid and everything around that area swells. My doctor started me on IVIG and that helps. I have to get an infusion once a month. It’s definitely an immune system deficiency. I also take imbruvica everyday. I think my hives are directly related to my meds or they are a combination of meds, immune system deficiency or the CLL. In any case this whole thing sucks!!

[Gman2 in reply to Batbie]

Hi Batbie, I thought I sent you a reply but it disappeared when I hit reply. I think I may have sent it to myself and can't find it. Unfortunately, I can't blame my incompetence on the cll.

Let me know if you received it. Thanks, Gerry

[Batbie in reply to Gman2]

I’m sorry I didn’t get your reply.

Barbara

[Gman2 in reply to Batbie]

Barbara, I did send another one. I don't know what happened.

[Gman2 in reply to Batbie]

Batbie, I can't explain why my other replies didn't send. I just wanted to say that I think I know how you feel with the whole thing-cll and the little horrible things that happens to our bodies like the hives. Mine are nowhere as bad as yours. This disease has been very difficult for me to accept. I wish I had some good advice for you regarding the hives. I take a supplement called querectin and it has an antihistamine effect which seems to help. I have also taken benadryl which also helps. But you are on meds and you should check with your doc to make sure it's safe. I try not to think about my illness but it is always in the back of my mind if not totally. I try to be optimistic as there are advances in treatment and we may be cured one day. I do know that life can change on a dime and you should not give up. You are right-IT DOES SUCK! I truly wish you the best in your treatment and that you will feel better soon. Gerry

[Batbie in reply to Gman2]

Dear Gman2 - thank you for your reply. I wish you well also. We all have a crazy road to travel. We can only try to live our best life.