Cough

[tlcladygiraffe]

Hi...anyone else having a cough as a side effect of imbruvica?I was fine til 1 month ago..had been n the meds for 11 months...now I have this persistent cough.

[Yvbb]

Yes! Since end of July very persistent cough and I feel quite tired because of it. I mentioned it when visiting my trial team. Not quite sure whether it’s the medication (Ib and Vtclx) or just the opportunities my system gives to infections. So we just wait a few weeks more for a natural recovery. I have IGIV every 4 weeks to support my immune system, but...

wish you strenghth and also quick recovery

Yvonne

[tlcladygiraffe in reply to Yvbb]

Thanks for the info..I had a chest xray ...no results yet..one teaspoon of honey stops the cough...natural remedy and good for you..cough does fatigue me.

[tlcladygiraffe in reply to tlcladygiraffe]

Posting an update..I have pneumonia so the xray showed...never ignore a cough when you have a chronic disease...have never had pneumonia in my life and I am in my 70.s..however will be on antibiotics for a few days.

[Justasheet1 in reply to tlcladygiraffe]

It’s a good thing you took care of this. When I had pneumonia, I needed iv meds and I was 52 at the time.

[Jm954 Administrator]

Yes, I had one just first thing in the morning. Eventually went with no intervention.

[tlcladygiraffe in reply to Jm954]

Great..I want mine to disappear....

[MartiP2009]

Funny you mention these.. because I was on it for 4 years then last March I developed a cough then other issues and was taken off of it, not because of the cough. I have been without it for 2 months now and no more cough.

[tlcladygiraffe in reply to MartiP2009]

How are you doing off the drug?

[MartiP2009 in reply to tlcladygiraffe]

First few weeks numbers off the chart, hospital twice with high fevers, however last three weeks feeling great, even though my blood work still high and platelets low. I’m scheduled to start venetoclax in a week or so.

[lankisterguy Volunteer]

If you have a dry non productive cough and antibiotics are not solving it quickly, have any of your doctors tested for fungal infection of the lungs?

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From our low immunity and especially when Neuts are low, we can get Pneumocystis or Aspergillosis / Aspergillus

See: en.wikipedia.org/wiki/Pneum...

cdc.gov/fungal/diseases/asp...

Len

[cllady01 Former Volunteer in reply to lankisterguy]

Excellent resource, Len--Thanks for the link,

[lankisterguy Volunteer]

During the clinical trials for Idelalisib in untreated patients they found that pneumocystis - lung fungus was a significant issue, and the trials were halted.

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I was put on a prophylactic -Atovaquone first then later Bactrim ( both are antibiotics but they can act as prophylactic for fungus also- I do not believe they can be used for treatment once a fungal infection is active).

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Recently (while I am on Venetoclax), Dr. Furman checked my CD-4 T-cells and decided I was no longer at risk.

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Len

[annmcgowan in reply to lankisterguy]

I have had tests for fungus and viruses all negative. The only thing that helped was Steriods but slowly starting up again as they have finished. Might try the honey tonight.

Ann

[Cllcanada Top Poster CURE Hero]

I was on Zydelig (idelalisib) and Bactrim, but was invaded by Aspergillosis a fungal lung infection, that in now chronic and can't be cured... I only have about 25% lung capacity... and require O2 for life.

You need to see a doctor about this...

~chris

[annmcgowan]

Hi I am on Ibrutinib 6 months in and have had a cough for a while now. It is a tickly cough, bad at nights.

I have asthma and my asthma nurse thinks it is due to that and the summer which has brought different pollens and poor air quality. I am not usually bothered in the summer months so she could be right.

I had chest and neck x Ray all was well but GP to refer me to ENT if it persists beyond summer season.

Ann

[MsChief]

If I don’t drink enough water I start to get a cough. It is hapoening this week while we are on vacation driving around everywhere and not drinking enough. Had to get up middle of night to drink last night. Other issue us unsomnia every night- don’t ever get a night’s sleep . Of course I have severe reflux so have poor appetite too. On low dose Ibrutinib, acyclovir, sulfa ss, IVIG every 4 weeks. Having AUS next week for abdomenal swelling.

[tlcladygiraffe in reply to MsChief]

I take a tablespoon of liquid calcium and magnisium every night before bedtime and sleep like a log...no meds..just natural product.

[Graham2222]

I'm afraid I did. I was on Ibrutinib for two years. It worked brilliantly on the CLL but I developed a persistent cough in the last nine months. After extensive testing to rule out other causes, I had to come off Ibrutinib.

It had unfortunately caused interstitial lung disease. I lost 20 per cent of my lung capacity through fibrosis. I had to take a (good) lung recovery course, which helps to teach you to breathe in a different way, to make the most of residual lung capacity.

The beneficial effects of Ibrutinib lasted another 18 months. Eventually the CLL came back aggressively, and I am now five cycles into FCR treatment.

I hope this is not the same in your case. There could be many causes of a cough. But I cannot stress highly enough the need to have the professionals get to the bottom of it quickly, before you potentially lose significant lung capacity. I was told that without early intervention I would have ended up on oxygen. Sorry if this alarms you, but you do need to act urgently on the findings you expect shortly.

The very best of luck.

[Berrytog]

Yes, seven years on Ibrutinib and a non productive cough for the last two years. Nothing on x-Ray's etc., but nobody has suggested the CLL or Ibrutinib as the reason. Eating and colder damp air brings it on or even a cup of coffee.

[skunkbay53]

My husbands asthma got really bad in month 2 of Imbruvica. It lasted for about 3 weeks. The side effects with Imbruvica come on fast and go away pretty fast.

[Yuck]

Follow up on a cough, especially if you get a low fever, whether or not on medication or with CLL. The ordinary mucus in one’s sinuses and throat can make its way into the lungs and cause bacterial pneumonia which can become very serious. It is not as uncommon as it may sound. Again, beware of a fever or increased malaise. Good luck!

[tlcladygiraffe in reply to Yuck]

You are so right..always best to have it checked it.. I thought my cough was from the air conditioning...dry air..