Generic Name: Ibrutinib Capsules
Brand Name: Imbruvica
Imbruvica Drug and Medication User Reviews
No side effects for me dropped my numbers from 420,000 to 11,000
I’ve been treating on this drug for almost 2 years. My IGM has decreased from +5800 to 1100. IGA and IGG are almost normal. All other blood test are within normal range. I’ve had off and on diarrhea and slight bone pain. Otherwise the side effects have been minimal. In summary, although this is a lifetime commitment, I favor this drug as opposed to chemo.
I've just started my 4th year on imbruvica. Remarkable results. A wonder drug! I have many side effects, but I deal with them. The most serious side effect is lungs always filling up with mucus and congestion. My oncologist also has had me on I.V.I.G. along with the Imbuvica. It makes a big difference for me.
This medication has been effective for me. My counts are generally acceptable and the side effects are tolerable, though irritating. Initially, I was on 280's but had excessive bruising and bleeding, so was reduced to 140's. Those have reduced the bruising and bleeding, but not eliminated them. Let me list the side effects in order of intensity. 1. Skin effects of fairly extreme nature on ankles and calves, with thickening of skin into plaque structures and general reddening 2. Constant fatigue with barely sufficient energy for daily tasks 3. Occasional dizzyness 4. Rectal and urinary incontinence that is irritating but not severe. I spend way too much time on the toilet. 5. Exacerbation of neuropathy already present from T2 Diabetes 6. Extreme sensitivity to both heat and cold with shaking from cold and collapse if exposed to too much heat I have had CLL since 2009 and had 5 sets of chemo leading up to my use of Ibrutinib. I had one remission of almost five years. Largely, previous chemos did not have extreme side effects, but some short hospitalizations. This latest chemo with obinutuzumab and bendamustine almost killed me, putting me in the transplant ward for 47 days and then rehab. I was told that another dose WOULD kill me, so I took the ibrutinib. It has been effective if not pleasant for the last year and I hope it will stay effective until something like CAR-T is applied to CLL.
My father had CLL. He previously was treated with chemo. Didnt lose his hair, tolerated pretty well and CLL sent into remission. 2 years later it came back. They wanted to treat him with Imbruvica. I was worried about the lifelong commitment of this drug and questioned the doc especially since chemo was tolerated and qorked previously. Plus long term studies I was having trouble finding data and what about patients that couldnt tolerste this treatment...could they go back to chemo after using this drug? The doctor siad this is the new standard of care and chemo is more harsh and this drug could potentially keep the cll i. Check for a long period of tume. We reluctantly moved forward. To mentio. Dad was 65 strong man, not many health issues. Just high blood pressure but effectively being managed with meds for years, no blockages, always active. When getting chemo he would do oil changes etc. He started treated on imbruvica. In 1 month lymph nodes were shrinki g but side effects started. Bruising, weird marks on skin, cough. Fatigue was very bad and got worse, he also got dizzy, had some trouble breathing, and got feel his heart beating. He saw pulmonologist and cardiologist test performed, no flags. The gave him an i haler a month ago saying he developed asthma. We spile to oncologist numerous times about side effects. My dad was getting depressed from fatigue. They said the longer you are on the drug the less side effects you will have. Reluctantly he remained on. He went upstairs two weeks ago Nd collapsed. They tried to resuscitate and could not. Cardiologist is perplexed. Medical examiner classified as a cardiac event. In so heartbroken. After his death I found an article from sept 2019 stating cardiac deaths are happening especially in the cll population. I wish I saw this sooner.
This medication has worked well to lower my IGM numbers but I wish I wasn't so tired all the time and I have a hard time eating. On the other hand, I have dropped >40lbs.
My only problem with Ambruvica is that my blood pressure is steadily been increase .I use to have great blood pressure 120 over70 now its 147over 90 I am about to go on blood pressure medication .I also have left shoulder pain for 4 months now all test came back negative...
Tolerated 3 weeks, daily dose. Spiked BP, wbc. Had wknd of fevers, bone pain. Stopped b/c of recurring migraine. Need to find gen prac before continuing who can manage side effects with me. Thinking of self advocating for apherisis followed by steroid treatment to build up my ability to handle the drug. That said, 3 days after my fever wknd, my wbc dropped by 66K!!! I think if I get some TLC now, I'll be more ready for the next round. I am worried about my other chronic health conditions (MS, heart murmurs, familial hyperlipoedemia)and how the fevers exacerbate my MS. I'm challenged by side effects. But this drug is VERY effective thus far (2 months in).
It brought all of my blood indications back into the normal range. Only side effects observed are adverse reactions to insect bites.
After treatment with Rituximab and Bendamustine in 2011 my lymphocyte count went up to 160,000 in 2014. Have been taking Ibritinib for 3 years now with good results. Initially I had some pacs (not pvcs) but they went away after a couple of months. Expensive but worth the cost.
white count 188 now 15 this in 6 months this medication is life changing. I do have some minor side effects but nothing I can't handle.
Have been on it for 6 mounths wbc went from 350 to 10.8 red cell near normal and swollen lymph glands normal. Platlets still low but improving. No side effects noticeable enough to complain about. A miracle drug
My husband had severe side effects. Swollen mouth,swollen tongue,two very bloody urines. Had to stop after a month.
On imbruvica for 5 months. My wbc and lymphocyte counts went to normal fairly quickly, but I have had multiple side effects. Am now trying to decide whether to stop taking it. I've been in hospital twice and ER once due to chills and high fevers. Now I have severe neutropenia, thrombocytopenia, and hemolytic anemia all apparently related to the imbruvica.
Side effects were minimal
Starting third month (cycle). All costs paid by insurance with copay assistance. Hgb up to 11.7 from 6.1. PLT u from 18.9 to 141. White blood count holding in 5.0 range. Virtually no side effects. Diagnosed with CLL 10 years ago. Been treated with Rituxan, Bendamustine and gamma globulin with success over nine years when I then tanked which resulted in my movement to Imbruvica. So far so good. Fingers crossed.
I was first diagnosed with CLL in January of 2010. I started using Imbruvica in September of 2014. My blood work is completely normal after reaching a WBC of 200K+ prior to starting this drug. Lymph nodes are normal. Side affects include easy bruising; chest congestion; and swollen feet. Nothing that I can't handle.
Just developed abnormal liver function tests after only 7 weeks on it. All viral studies are negative. Am very disappointed with this, since I was tolerating it well otherwise. Now holding drug and repeating blood work.
I was treated with Rituximab and Bendamustine for stage 4 cll in 2012. Relapsed in 2015. Have been on Imbruvica for well over a year. Great results and surprisingly no abnormal blood numbers so far. Great quality of life. I have had small, stage zero melanoma areas, removed from the back of my neck and some increased GURD and hypertension. These were pre-existing conditions that may have worsened with age. Also live in the AZ desert with very strong sun. I use plenty of sunscreen when outside, have increased prilosec (Omeoprozole)and Lisinipril doses. I feel no ugly side effects. For me, this has been a wonder drug. Real glad my insurance is picking up the tab. Almost $10,000 per month.