Itchy skin, what can help?

Itchy skin seems to be something many blood cancer patients experience, and it isn’t limited to any one type. Our support services are often contacted by people living with an MPN who are experiencing itching, as well as lymphoma patients too.

Is this something you experience/have experienced? Have you found anything to help?

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Hi Dawn, I have CLL and have not experienced itchy skin, but re-flaring up of shingles over the last 6 yrs and it can feel manifest as itchy skin or a more burning, pin pricking type of feeling and the odd spots. The flare up starts anywhere in/on my body if I overdo it emotionally or physically or with what personally stresses me. I shall be interested in the responses to your post, thanks for posting it.

I have SLL and experience itchy skin, especially at night. I try and keep my skin moisturised but it doesn’t always help. Would like to know what others have found helps.

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@andrea49 If you have tips or advice, or an ‘itch pack’ then please do share, it may be helpful and reassuring to others!

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For me I have had itchy skin since I was diagnosed and it continues till today. The one thing that almost but not quite controls it is a high dose of an oral antihistamine tablet. Although you can buy these hay fever tablets over the counter I wouldn’t recommend people just buy them but instead talk to their doctors first. The one I take for example can in some people cause changes in the ECG so we checked that hadn’t happened to me (which it hadn’t!)

I’ve found over the years that I’ve had itchy skin that I’ve had to change which one I’m using to try and get better control and to increase the dose above the normal licensed dose. A GP may well be willing to discuss with you which one makes sense for you to try, or you could be asked to see a dermatologist.

I should say that if you have any sort of rash it is vital to make sure you find out what the rash actually is rather than just treat it. And you should do that quickly. And I would definitely argue that a brand new itchy or painful rash in a patient who had blood cancer should be considered a medical emergency until its proven not to be.

It could be shingles (usually but not always this rash is in a band on one side of the body) or some other infectious cause (even sometimes a bacterial skin or hair follicle infection), or there are some other important causes (sometimes for example if you have recently started a medication you might have a skin reaction to it).

So with an abundance of caution and ready in most cases to be told it’s nothing to be worried about if a new rash appeared I would definitely book a same day GP appt, maybe ask a pharmacist, or go into an Urgent Care or even an A and E. If it is shingles (which doesn’t always hurt at first) or some other infection you definitely need rapid treatment and hours sometimes count.

I do find “I have a blood cancer and so am immune compromised and I’m worried this symptom might mean I have an infection” is the best way to introduce yourself to new medical stuff in such a situation. They should certainly then understand why you are there, will hopefully prioritise you, and will be only too happy to reassure you and send you on your way if the rash isn’t anything to be concerned about.

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Hi Adrian, I agree with all you say. I was diagnosed with CLL in 2003. In 2013 we decided to downsize to a flat and since diagnosis I do not deal with what personally stresses well. The flat purchase process did stress me and I contracted shingles and 6 yrs later it is still there but again flares up when I overdo it emotionally or physically or get stressed. I usually get one or two spots somewhere but the tingling, stabbing itch can appear anywhere else my body, luckily I have not had it on my face. I have been told by my consultant (rheumatology) that because of my compromised immune system it will always be there to differing degrees. Take care

I have B cell (Low Grade) Non Hodgkins Lymphoma and T cell (Mycosis Fungoides) I suffer with extreme itching at night on the soles of my feet and on the palms of my hands. I am currently having UVB treatment but that is inclined to make the itch on my feet worse. Steroid creams help but over the last five years I have developed my own anti itch kit!
I take Benedryl Acrivastine at night and take a bowl of ice cold water containing epsom salts, some ice packs and menthol cream into my bedroom with me! I find that the chill packs used on wine bottles are ideal to place on feet! If I wake up in the night itching my kit is right by me and I can quickly sooth the itch and go back to sleep.
This might seem quite a performance but it does enable me to get some quality sleep and reduce the sores on my feet.
hope this may be helpful to others.

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Thank you for sharing @andrea49 - are these remedies something you developed over time or were they recommended to you? I’m glad to hear you’ve found something to soothe your itching!

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i have developed these myself over time

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@ladicaz Welcome to our forum! Carol I am really sorry to hear you are experiencing itchy skin, it is unfortunately quite a common side effect of treatment for an MPN, and it sounds like it’s a real challenge for you. Have you spoken to your treatment team about it, and whether the dose of your hydroxycarbamide can be reviewed, or whether it’s the right medication for you?

Does anything help at all?

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