Ibrutinib and Dryness

[Davidcara]

Hi Everyone, wondering if anyone has thoughts or suggestions for the following. On ibrutinib for 3 months now ( first line treatment). Starting to feel dried out. Drinking 80 ounces of water a day. specifically the soles of my feet are very dry but, gold bond helps with that. The troublesome issue is my nostrils. Using saline and water soluble jelly, but still very dry. I know these little complaints could seem silly in the realm of the disease, and what is happening in the world. Still suggestions would be welcome. Hope everyone is doing well

[AnneHill]

Hi, Saline may make things worse. Petroleum jelly sorts most problems. A little bit up each nostril will help hopefully, Anne uk

[Davidcara in reply to AnneHill]

Thanks AnneHill, I thought about petroleum jelly, but I had heard small micro chunks can be inhaled into lungs. I realize many Doctors recommend petroleum but most pulmonologist recommend water soluble jelly.

[Canuck901]

Hydrasense nasal wash works great and also a nasal gel called Secaris

I prefer hydrasense

[Davidcara in reply to Canuck901]

Thanks Canuck. Might need to give this a try

[PaulaS Volunteer]

Hi Davidcara,

I have the same problems with Ibrutinib. The skin all over my body has become very dry - my hands and feet are particularly affected. I use gallons of moisturiser cream every day. (Well not gallons exactly, but you'll know what I mean). I have to rub the cream carefully into the backs of my fingernails, as they get a lot of cracks/skin sores.

For my nostrils, I also use petroleum jelly, like others have mentioned.

Hope you find something that works for you. Paula

[Davidcara in reply to PaulaS]

Thanks PaulaS

[dr007]

My ENT recommended a small dab of Polysporin, switching off with petroleum jelly sometimes. It also helped prevent sinus infections as I often work in dusty environments. I used to get them every few months, but haven’t had one in a couple of years now.

[Davidcara in reply to dr007]

Thanks dr007

[BeckyLUSA]

This has been an ongoing problem for me, and even cutting back the Ibrutinib to 140 for other reasons has not completely cleared up the dryness problem. My fingernails are much better ( I actually have longish nails now!) but the dryness around my mouth is actually still a real problem. I got a little cut in the corner of my mouth Back in April, because of it and now the dryness has compounded the problem. Cannot get it to completely heal up. Doctor gene me a topical Nystatin but it will not go away permanently. Seeing my dermatologist in 3 weeks for a screening, so I am going to run it by her.

BeckyL USA

[Davidcara in reply to BeckyLUSA]

Thanks Becky, I would be interested in hearing what your Derm has to say.

[5454]

Try a tablespoon of high quality olive oil each day takes a while but really helps also helps the stomach. Works for me . Still use my share of moisturizing and so much water. God Bless.

[Canuck901 in reply to 5454]

Olive oil is good for sure as well. I like hydrasense, easy to use

[MaxSmart]

I used to be on Ibrutinib with very similar side effects. My original doctor said there was nothing much that could be done about it. I went to a different doctor. He said there are now medications very similar to Ibrutinib, but with less side effects. These are Alcabrutinib and Zanubrutinib.

First we tried Alcabrutinib but that gave me really bad headaches. Now I am on Zanubrutinib with no side effects.

[Davidcara in reply to MaxSmart]

Thanks Max. Except for the dryness, am not have much side effects, and the ibrutinib is working. So do not necessarily want to rock the boat.

[MaxSmart in reply to Davidcara]

It’s an option. Side effects either go away or get worse over time

[MN1999]

Interesting post. I have experienced some of the dryness (nose, sinus, salivary glands) -- but not much ... I wonder if a high intake of dietary fat due to my keto-influenced diet, has helped.

[kimiD]

Coconut oil worked for me. The dryness is a real issue with ibrutinib.

[vog292]

I got your problem identically ! I am on IMBRUVICA 420 and doing very well and almost normal CBC after having Stage 3. I can't offer a solution. Saline Nasal Mist makes it worse. There is an article: CHRONIC RHINITIS : A MANIFESTATION OF CHRONIC LYMPHOCYTIC LEUKEMIA . It seems to be quite seldom. I have both nasal dryness and congestion plus some brutal sneezing. I use essential oil difusser which brings a bit of moisture and therapeutic oil into the air of the room. The best I fould after many trials: Olba Oil, and Pura d'Or Eucalyptus. For strong nails works: Onyx Hard as Hoof.

[vog292]

For essential oil diffuser I use VICTSING : Simple, reliable, inexpensive.

[U2me]

I have the same issue. Very dry skin especially the soles of my feet.

My wife rubs my feet and skin area with coconut oil, which seems to help.

No problem with the nostrils though.

I drink lots of different teas.

Green tea, dandelion tea, hibiscus tea, brandnetel tea etc.

I wish you the best

.

[BluMts]

Yep, my skin is very dry on Ibrutinib. Boots online now stocks Cerave body moisturiser. So does Amazon, but check prices. Careful as they have several types of Cereve. , one I use is a cream in a tub. Have a look at the ingredients online. It does not have Vaseline/petroleum jelly which Is a plus for me. Has got a special protein. I found it soothing for a rash I got in early days of IB Treatment.

You say you've found something that's good for your dry soles. I'll check it out for myself.

[Davidcara in reply to BluMts]

Gold Bond foot creme. Also have bag balm but have not tried it yet

[annmcgowan]

Hi I use a cream prescribed for me years ago for perennial rhinitis which also dries the nostrils. It is called naseptin. It is a localised antiseptic and antibiotic so I don’t use it all of the time. I think it has to be prescribed. Hope this helps.

Good luck

Ann