Side effects of IMBRUVICA : I am 2 weeks in... - CLL Support

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Side effects of IMBRUVICA

dantetheinferno1 profile image

I am 2 weeks in Imbruvica. Did someone say facial blotches can be a side-effect? What did they look like? Also my ankle is all bruised and swollen but I’m not aware of injuring it. Medication side effect? How long until lymph nodes shrink? My parotid gland is so big and impinging on and affecting my hearing, I fear. Dr one week from today. Thanks.

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22 Replies
PlanetaryKim profile image
PlanetaryKim

You should be noticing some improvement already on lymph node reduction in size. But everyone is different I suppose., My nodes went down quite quickly after starting. I didn't have the blotchy effect you describe. Good luck! Beginning can be the hardest because we are nervous about so many possibilities. I think most people find that some initial side effects lessen on disappear as the body gets used to managing the drug.

kim

dantetheinferno1 profile image
dantetheinferno1 in reply toPlanetaryKim

Thanks for responding. Yes, this can’t work fast enough for me!! Glad I will see doctor next week. 🙏

81ue profile image
81ue

My experience on imbruvica monotherapy was that my oily facial skin became drier which I liked, but then I had to change the skin care routine. My armchair non-doctor theory for others who get blotchiness is that if you start out with normal skin, you'll get angry irritated dry skin on imbruvica. If you have oily facial skin, you'll enjoy a more normal skin. However, on imbruvica my legs were very dry and I could see skin flaking off and had to add oil. When I went on venetoclax and rituxan, the face oiliness was back.

dantetheinferno1 profile image
dantetheinferno1 in reply to81ue

Thank you for sharing your experience. 🙏

Redlion profile image
Redlion

Some find that their lymph nodes reduce very quickly with a noticeable reduction within days while for others it can take longer. Your ankle pain could be a manifestation of the well known roving arthralgia side effect which often targets prior joint and ligament weaknesses. Many find that these issues reduce and resolve over time on treatment. Good luck.

dantetheinferno1 profile image
dantetheinferno1 in reply toRedlion

Thank you for responding. 🙏

LynnB1947 profile image
LynnB1947

I've been on ibrutinib for 5+ years, & I get pimples on my nose & other areas of my face. Kinda like being a teenager again. After 3 months on ibrutinib, the lymph nodes in abdomen & chest had reduced significantly (2/3?). The only nodes I could feel otherwise were on each side of my groin, and they went down in a couple of weeks.

Ibruintib has been a good drug for me. Wishing you the best .... Lynn

dantetheinferno1 profile image
dantetheinferno1 in reply toLynnB1947

Thank you for responding.🙏

Cindi73 profile image
Cindi73

Hi,my lymph nodes went down relatively fast. I do experience some bruise like marks on my face from time to time. Swollen ankles , foot, wrist n hands seems to be a side affect from the Imbruvica. Hang in there. Wishing you the best. Cindi

dantetheinferno1 profile image
dantetheinferno1 in reply toCindi73

Can you define relatively fast? I’ve been on it 2 weeks. My parotid gland seems to be getting bigger and I’m losing my hearing because it’s pressing on my ear. Thanks.🙏

Cindi73 profile image
Cindi73 in reply todantetheinferno1

I would say 3 -4 weeks I notice a difference. My largest was my armpit. So I'm going by that. I know it may be different for everyone. Wishing you the best. Cindi

dantetheinferno1 profile image
dantetheinferno1 in reply toCindi73

Thanks again🙏

W00dfin profile image
W00dfin

After 2 years on Imbruvica I recently began having redness around my nose and under my eyes. Coincidentally so did my wife. She found a “Zinc Therapy Soap” (online) with 2% Pyrithion Zinc which seems to be helping both our faces.

I also have increased facial acne at 68 years although mine has not ever gone away. I have been using acne soap with 10% benzoyl peroxide for years. Hadn’t thought about Imbruvica causing acne to get worse.

I recently had a PET scan which showed no lymph node activity.

On the subject of of Imbruvica side effects could it be related to the hair on the top of my head (what little there is) become stiff?

Thanks for the discussion.

dantetheinferno1 profile image
dantetheinferno1 in reply toW00dfin

Thank you for responding.🙏

AnneHill profile image
AnneHill in reply todantetheinferno1

H, I have been taking Ibrutinib for just over 12 weeks. My skin is good. I had bruises and spots mostly on my thighs. A few on my arms and lower legs. I had terrible pain in my hands, wrists, ankles, knees and back. It would be in 1 area for about 3 days and then it would start somewhere else. I use a product called biofreeze that was recommended to me. I bought the roll-on. This gradually improved. I couldnt drive to begin with, the pain was so bad. By 6 weeks most were gone.

I still get small patches but not agony and I use the biofreeze.

I did have some noticible lymph glands in my neck but they werent obvious. I did have discomfort with my under arms and ribs.

Lymph glands usually go quickly. Give it 2 more weeks and see how you feel.

After 8 weeks things were a lot better. Best of all my wbc went from 148 to 38. Its now 12 weeks and my wbc is 19, My Rbc and platelets are getting higher.

My main problem is repeat urine infections making me feel grotty.

Be patient. The not knowing is the worst. Iv always been lucky with my facial skin but I have never used strong cleansers etc. Start by washing your face with warm water and a clean flannel. Then use an unperfumed moisturiser.

Good luck, Anne

dantetheinferno1 profile image
dantetheinferno1 in reply toAnneHill

Thank you for your response.🙏

MyStarlite1 profile image
MyStarlite1

For those on imbruvica, I am seeing different side effects on different ppl. First 3months on Imbruvica , I had bruising, headaches,terrible indigestion, fatigue, ulcer on my lip, and BP climbed. After 3months on imbruvica : indigestion disappeared, bruising , headaches and ,fatigue lessened. BP still a problem. I had to go off imbruvica for 6weeks due to a infection in my knee and my lip healed and very little headaches. I will see what happens when I go back on Imbruvica in 2-3 weeks.

dantetheinferno1 profile image
dantetheinferno1 in reply toMyStarlite1

Thank you for your response.🙏

Varney profile image
Varney

Sometimes an enlarged Parotid gland is the result of blockage of Stensen’s duct. It is the route the saliva takes from the gland to the mouth. Pain usually increases when eating from the build up of saliva in the gland that can not be released into the mouth. May want to consult with an Oral Surgeon to rule that possibility out. Good luck and I hope that abates soon.

Varney DDS

dantetheinferno1 profile image
dantetheinferno1 in reply toVarney

Thank you for responding.🙏

vog292 profile image
vog292

My facial cheeks developed a rash when I started Imbruvica which provokes blood leakage in skin that has been damaged previously. Clean skin daily very softly and apply a skin conditioner daily, which is recommended by your specialist. Now after 11 cyles of Imbruvica my face is back to normal. Avoid the sun!

dantetheinferno1 profile image
dantetheinferno1 in reply tovog292

Thank you for responding.🙏

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