Hi everyone, I joined a few weeks ago and have found the reading enlightening , thank you. This is my first post , seeking some info about your experiences with V.
I am just on 8 months thru the program, of ramp up Venetoclaxfor a month, then 6 mths of monthly Rituximab infusion and continuing V for 2 years.
Except for an initial bout of fevers in week one of V, and with that a recurrence of atrial fibrillation (deriving from FCR five years) everything has gone smoothly except a bit of nausea. The AF was corrected in Dec and the last month or so have been becoming more energetic.
Until early this morning, when I had heavy nausea, fainted twice without warning (fortunately without injury) and vomited , so off to the emergency dept (which is conveniently only 0.5km away from home).
The ECG, Bp, pulse check etc are all good. I’ve been checked in overnight and heart is on monitor. Tomorrow my heart specialist will come by and co-incidentally it’s my haemo appointment so he will see me here in hospital as well. In the meantime I’m interested to gather your experiences.
Low BP is in the manufacturers list of possible Venetoclax side effects and the Mayo clinic also lists fainting & dizziness.
Has anyone out there had a similar experience ?
Thanks for reading and warm wishes to you all .
Lester
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Hello. I’m sorry to hear of your experience, but it sounds like you are being looked after well.My husband has not experienced low blood pressure or fainting , yet (he has just had his last rituximab infusion) but we are now aware.
Hi Lester, I’m sorry to hear about your problems and hope it’s sorted out quickly so you can go home (unless your hospital food is better than ours!).
I’m taking Venetoclax and started last summer. It is expected to be for a year, and my blood results are fairly good so far. When I started (with Obinutuzumab first - the protocol in the UK) they were quite concerned about my low BP, and after checking with the heart nurse specialist, one of the heart failure meds was dropped. Since then another one has been halved. That was before I started on Venetoclax.For me the main symptom was mainly dizziness from standing too quickly, so gave myself time to do it slowly.
Thanks Chris , everyone seems to have different responses. I haven’t had any dizziness and am pretty cautious about pausing before moving after standing up. I’d been up and moving for several minutes before my blackouts. Hopefully my excellent pair of Drs sort it out today. All the best Lester
Hi Chris, your hopeful diagnosis of “just one of those things” is looking more likely. In fact the nurse who just came on shift used the same expression.Nothing exceptional on the heart monitoring or BP checks or bloods. BP tests moving from sitting to standing are ok.
Am in hospital another night with the monitor etc .
Hospital food here is ok for a couple of days, then becomes a bit testing and I revert to the sandwiches. Lester
Are you taking any other meds that potentially affect blood pressure, or can cause nausea? Or that potentially interact with Venclexta? Was this episode shortly after taking any medication? Have any life parameters like fluid/food intake, level of exercise, etc. changed recently? Any new/different foods, or takeout? Are you dealing with stresses from flooding or other weather problems, for yourself or family/friends? These are things I would be looking at and questioning, in addition to it being Venclexta related. Some combo of stuff, if not 100% Ven.
Hi Sofia, that’s a helpful checklist of possible other factors. The difficulty is that none seem to apply !My med’s are unchanged over the last 5 months. The nausea meds didn’t work for me and for several weeks I’ve had an eating routine with the V that avoided the worst. Personal stresses are easing as I’m feeling mostly less fatigued and thought I’d escaped treatment complications, and exercise has increased gently. No diet changes, no floods here, our daughters and their families are well and prospering. Grandchildren are back enjoying school & sport and we are having careful visits with them.
The only thing I can think of is perhaps unconscious under hydration with milder weather, tho it’s unlikely I’d have slipped under a couple of litres the day before..
Drs should be by in the next couple of hours and they will have the heart monitor data.
When husband first started Venclexta and upped to 200 mg he got dizzy and nauseous and I called hematologist who said go to er to rule out stroke. Did that with negative stroke findings. After that we had a second opinion with CLL specialist who said no treatment at that point. Went back on Treatment a year later without incident. So it may have been the Venclexta. No spells like that with rituxan or O.
Thanks for getting in touch. My heart is checking out Ok as well. I didn’t have any dizziness so a bit different. Heart specialist just came by and doesn’t understand why I collapsed tidily into a sit (twice) ‘cos a damaging splat is the norm and thinking somehow I was lucid enough to control it. Besides wanting to know and to be able to fix the problem he’d like to do so for me to be able to continue to drive otherwise here I’d (reasonably enough!) have a six month blackout free period before driving again.I’m pleased to hear your husbands current treatment is going smoothly, it’s encouraging to see positive posts ! all the best Lester
Wishing you all the best. He is now off all treatment and is UMRD with all blood work normal. He didn't do the full course due to ongoing severe neutropenia but if he gets a few years treatment free it was worth it. Take care.
Hmmm, when you said "fainted" earlier was thinking more uncontrolled. Some people lately have been asking about ear related problems with Venclexta, any chance this is a vestibular issue? It's rare for vestibular issues to cause fainting, nausea, and vomiting but it's been reported. Do you have any other ear issues, have your sinuses/ears clogged up lately? Do you have any atherosclerotic issues, could there be a narrowing of a cerebral artery contributing to intermittent oxygenation issues contributing to a "faint"?
Thank you again. No , I don’t have any known ear issues but I’ll raise that at my review as they are still struggling for an explanation. overnight , the monitor shows heart rate was down to 47, but otherwise nothing notable. Also wondered if I may have had a quick food poisoning caused episode, cos the nausea and vomiting was way worse than any I’d experienced prior. (tho my wife was/is fine).
They never really discovered why I lost consciousness, neurologist felt it was a vasovagal exacerbated by severe cramping - I concussed myself on corner of walls & then ended up in hospital for a month, then experienced a phantom RT
Thanks for getting in touch. I think today a neurologist will have a look at me as nothing particularly out-of-ordinary is seen on the heart monitor. I was much luckier than you and was un-damaged , could have been bad as I was only a couple of steps from going down a steel spiral stair. Hopefully my cause can be determined & is “fixable” since I’m now into 70s with a bit of osteopaenia and really don’t want to have falls. Best wishes Lester
I was on Venteclax for 2 years. I never had any dizziness or fainting episodes. So glad your at the hospital and being well cared for. I'm sure your drinking plenty of water. I have no idea what could have caused that but I'm so glad you are ok from the falls! When you find out please let us know if you feel comfortable doing so. Praying for you to be able to go home soon with answers.
I had to come off meds for A-fib due to that med plus Venetoclax lowering my BP too much. I came close to passing out many times during that time. I also had a marked increase in PVCs (extra heartbeats) while on Venetoclax. My normal is 2 to 3% of my beats being PVCs which increased to almost 15% on V and returned to 3% after stopping.
There are many unlisted side effects that the FDA is unaware of unless we report them - which I did.
Updating by replying to myself.Back home today after several heart and brain exams none of which contributed anything to clearing up why I blacked out for a moment X 2 times.
However, The MRI found a rare brain feature that’s apparently usually caused by meds, so I add a neurologist to my stable of health experts. Tho he confidently says it wouldn’t have caused this weeks problem and that it’s interesting but not concerning, I’m booked for an MRI and review in a couple of months.
Between his accent, mask and my deafness and instant alarm, I didn’t absorb the name or detail of the condition so will need to followup again, maybe via my GP, to understand a bit better.
Hi. I have the same symptom you just explained happen to me today. I black out while so was sitting on the toilet and somehow was in a sitting position 5 feet away from where I originally was. Do you have any answers or resources what this could be from or how to prevent it?
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