Deep sleep problems with Ibrutinib?: Has anyone... - CLL Support

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Deep sleep problems with Ibrutinib?

alexismitchell51 profile image

Has anyone with Oura ring, Apple Watch or FitBit noticed that they have no deep sleep and lots of restlessness according to the sleep info on the apps for those devices? I’m wondering if this is a side effect of Ibrutinib??? Oncologist has not heard about such issues but the drug is relatively new. If u have sleep problems, what are they and have you found any solutions???

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alexismitchell51
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19 Replies
Nickos66 profile image
Nickos66

Hi,I've been on Ibrutinib since June 2019,I get many a restless night,sometimes side effects from the Ibrutinib, sometimes they are due to low immune system caused by the CLL.I always have a box of remedies for various ailments and a full glass of water by my bed.

alexismitchell51 profile image
alexismitchell51 in reply toNickos66

Thank u for the insights. I was wondering how much the cancer itself contributes to sleep issues.

Jm954 profile image
Jm954Administrator

Do you feel tired all the time, snore loudly? Could you have sleep apnoea?

Jackie

MN1999 profile image
MN1999

I have been on Ibrutinib for about 3 months and using an Oura ring for the same period. My deep sleep varies from just over 20 minutes to well over an hour. The only connection to sleep I have found is diet: if I eat in the evening, my sleep is restless. If I am more careful with time restricted eating and avoid sugar, I usually have a better night's sleep.

Getting up to use the bathroom is another factor since I drink much more water since I am on Ibrutinib.

Canuck901 profile image
Canuck901 in reply toMN1999

Try accupuncture it’s really good for sleep improvement . Do you take your Ibruntnib in the morning. Or evening ?

MN1999 profile image
MN1999 in reply toCanuck901

I have found that taking Ibutinib in the morning works best for me, on an empty stomach.

Canuck901 profile image
Canuck901 in reply toMN1999

I don’t think it makes a difference if you take it on an empty stomach or not .

MN1999 profile image
MN1999 in reply toCanuck901

Taking Ibrutinib on an empty stomach helped me a great deal with medication-related nausea. I would expect it's an individual issue.

Canuck901 profile image
Canuck901 in reply toMN1999

Agreed

alexismitchell51 profile image
alexismitchell51 in reply toCanuck901

My husband is now taking the Ibrutinib in the morning. That does seem to help. Took us a while to figure that out. Thank you

alexismitchell51 profile image
alexismitchell51 in reply toCanuck901

My husband has been talking about going back to his acupuncturist. Sounds like a good move. Thanks

Canuck901 profile image
Canuck901 in reply toalexismitchell51

Yeah acupuncture really helped with sleeping but yuh need to go 2-3 times per week for 5-6 weeks . He really noticed a difference around the 12th -14th time.

Going once a week is just poking the problem , yuh need to hit it at least twice a week

alexismitchell51 profile image
alexismitchell51 in reply toCanuck901

Again. Thank you!

alexismitchell51 profile image
alexismitchell51 in reply toMN1999

Thank you! I do believe that u r on to something. U r doing well compared to my husband. We were wondering about eating before bed and sugar. We have just recently made the changes u described. It seems to help.

vog292 profile image
vog292

I have both sleep apnea and CLL. For CLL I am on the 17th cycle of Imbruvica, with very good results. For sleep apnea I use the Dreamstation with a "Dream Mask" since 2016. My sleep is terrible with dry mouth and respiratory discomfort. The CLL may provoke swelling in the nose and in some cases Rhinitis. I have severe sneezing attacks. It is possible that both the Dreamstation as well as CLL and Imbruvica may contribute to bad sleep. I have a bottle full of water laying on a heatingpad, and when necessary I take a bit of warm water to irrigate the mouth. I am now experimenting whether aromatic oil diffusers may improve the air. But I have not some to a conclusion. Thus, unfortunately I can not offer helpful advice.

LynnB1947 profile image
LynnB1947

Initially, I took ibrutinib in the evening but I noticed increased insomnia. Now I take ibrutinib in the morning around 8 am. Sleeping better. Almost 6 yrs on ibrutinib.

LynnB

alexismitchell51 profile image
alexismitchell51

Thank You. We also tied flipping the timing of he drug from night to morning. It does help but we have a ways to go.

Canuck901 profile image
Canuck901

If you are taking thyroid medication in the morning it’s not a good idea to take Ibruntnib in the morning . Talk to the pharmacist but my dad was told to take Ibruntnib in the evening so it doesn’t interfere with his thyroid Medication that he takes In the morning

alexismitchell51 profile image
alexismitchell51 in reply toCanuck901

Thank you!!! Who woulda thunk. Taking Ibrutinib at night seems to hurt my husband’s sleep. Instead of taking thyroid and Ibrutinib together, we will try taking Ibrutinib with lunch/ mid afternoon. He will also check this with the pharmacist. Good info!

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