I started treatment with Acalabrutinib June 2020. During first 2 months my only side effect was lightheadedness due to low Blood Pressure (BP), especially during first few hours of taking Acalabrutinib. In October and November 2021 I had gallbladder issues and suspended treatment. I lost 20 lbs and that I could not afford to lose. Resumed treatment 12/3/21. Currently gained 10 lbs back but still low. The past week, the lightheadedness returned along with low BP only when standing after sitting. I also had vertigo during past week but those symptoms disappeared 2 days ago. Now I have only the lightheadness especially mornings 2-3 hours after taking Acalabrutinib. My Cardiologist and PCP and CLL doctors believe it’s not the treatment rather it’s low weight and not enough sodium in my diet. I know it’s well known that Acalabrutinib side effects can be high BP and/or Afib. I don’t have Afib. Before treatment never had BP issues. Has anyone ever had similar experience?
ANYONE WITH LOW BLOOD PRESSURE ISSUES WHILE TA... - CLL Support
ANYONE WITH LOW BLOOD PRESSURE ISSUES WHILE TAKING ACALABRUTINIB?
Hi CADreamer,
It looks like no one else has experienced this with Acalabrutinib.
I've never taken Acalabrutinib, but a couple of years after starting Ibrutinib, I started having problems with low blood pressure. Dizziness, light headed, brain dull, cured by sitting down and putting feet up.
I realize Ibru tends to cause high BP not low, so my doctors don't think the Ibru is causing it. GP suggested adding bit of salt to meals (I tend to avoid salt), and drinking more water. Can't say it's helped much, but I still go easy on the salt.
GP gave me a face to face appointment, listened to heartbeat and said no obvious problems there.
My problems probably have different causes to yours, but I thought I'd share anyway. Like you, I'd really like to know the cause of the low BP and what might help.
Paula
What would be the reason to avoid salt? Given we are made of 70% saltwater and losing salt perspiring all the time it has to be replenished right? When sodium levels are low our nervous system can't function properly. I understand that most people consume more salt than necessary, and that can be unhealthy. It happens mainly via eating junk foods (salted pretzels and such). Those who consume whole foods only, in their unadulterated form, and no highly processed junk, should just salt to taste. Does anybody know the feeling when during a hot summer we keep drinking and feel already full of water but at the same time still thirsty? That's the sign of being low on sodium. It's not the water we crave but the salt. Just something to keep in mind.
I hear you, Leo, and will keep that in mind.
I don't totally avoid salt, and my blood sodium and calcium levels have always been OK.
It's just that I'm used to thinking too much salt isn't good for us. My husband has high blood pressure so needs to restrict his salt, so I do the same, especially knowing that Ibrutinib tends to raise blood pressure. It hasn't done that with me though.
Paula
Thank you Paula for response. I love your “brain dull” description. Perfect. Are you still taking Ibrutinib?
Glad you like the "brain dull" description, CADreamer, but sorry it rings bells with you! 
Yes, I'm still taking Ibrutinib. The dose has gradually been reduced from 420 to 140 mg daily, because I was getting various side effects. I'm not a large person (60kg), so my haematologist reckoned that the smaller dose of 140mg was fine for me.
I've been on 140 mg for over three years now and my CLL remains stable (though lymphocytes never got back to normal range.)
My low blood pressure is a relatively new problem over the last year, so may not be connected with Ibrutinib.
Paula
It may be a coincidence but I have also experienced bouts of low blood pressure in the past year. I started Acalabrutinib about a year ago in February 2021.
I have been taking meds for essential hypertension since I was a teenager (last 60 years!!) and with a combination of exercise, diet and meds it has been under control during that time. So, it came as a surprise that in the last 6 months or so, I have had bouts of low blood pressure off and on. I only notice it when I get up from a chair suddenly and experience the same dizziness and light headedness. It passes within a minute or two while leaning against a wall or counter. I verified the low blood pressure with my home monitor.
Of course, when I mention it to my GP during a visit, my bp is normal. He suggested that I might reduce my bp meds but based on my reading, occasional low bp is preferable to occasional high bp.
Like a majority of seniors, I’m medicated by a combination of bp drugs, statins, prostrate “helpers” and sleeping pills. I’m a fairly analytical person and I figure that since BTK inhibitors are fairly new, there is some probability that there may be some side effects when you combine them with a number of other drugs.
Since, this occasional light headedness comes and goes and I can control its intensity by remembering to get up a bit more gradually, it has not been a major issue. But know that you are not alone and I suspect the drug company (AstraZeneca in the case of Acalabrutinib) may look at this potential side effect, the more people that report it.
Sounds like you have orthostatic hypotension, and glad you figured out a couple of lifestyle changes that you can make to deal with it. How you went from hypertension to your current condition is the mystery to be solved IMHO.
From looking over past posts, it seems more common than we are led to believe. This is one of the benefits of sites like HU - sharing info means that you no longer feel you are alone with cll and/or no longer feel you are imagining things. Thank you for your kind response
Dear CA Dreamer,
Yes, I have had the same lightheaded, low blood pressure problems with Acalabrutinib. You are not alone. My symptoms occurred primarily in the mornings, but persisted throughout the day. It may be coincidental that we have the same issue, but I did not have a low weight problem. I am average weight for my height.
I did fall and broke my wrist due to the dizziness. Subsequently, the very low blood pressure, (88/53), and low heart rate as well were diagnosed. Orthostatic hypotension was the diagnosis, however the low heart rate was addressed with a pacemaker. The pacemaker solved the heart rate problems and some of the lightheadedness throughout the day. My bp hovers around 104/70 now.
However, I still have the morning orthostataic hypotension. Additional water intake has had a minimal affect. I don't know if Acalabrutinib is the cause or your low weight and need for additional salt, but I wanted you to know that you are not alone in symptoms. Hopefully, you will start to feel better and your doctors are on the right track.
CAD, do you want to lock your post?
What does lock my post accomplish & how do I do that?
A member here called "hidden" explains well and I'm sure won't mind my quoting him. I would have replied to your post if it had been locked which most are.
" Its individuals choice to lock a post or leave it unlocked.
Left unlock means the www can view, and posts will be picked up on google search for all and sundry to see.
If the post is locked for this community members only to view, it keeps the content more private.
Those who believe someone has got something to hide because they lock their post would be mis guided in their presumptions as any one who wants to see a locked post, only has to join the community.
I wonder why someone would suggest a member has something to hide just because they prefer their post to be viewable by members of the community only.
So to answer your question "Should I hide this post" I would say "its entirely your choice""
I'll reply further in a minute on how to lock a post.
When writing a post, you'll see at the bottom of your form:
Who can see my post? Anyone ........... Only community members
The box applying to Anyone is default ticked. To restrict view to members of this forum, tick ONLY COMMUNITY MEMBERS.
Leaving box Anyone ticked may result in your post being quoted on Facebook or Twitter, or anywhere. On the other hand, I found healthunlocked.com via finding a post on a Google search.
......
TO EDIT WHO CAN SEE A POST ALREADY UP ON THE SITE.
See link: support.healthunlocked.com/article/41-how-do-i-edit-a-post-or-reply
I find I've been asked that question several times and I'm not aware that I've been on any such drug. Sorry I couldn't be of any help.
Hi CADreamer,
I have been taking acalabrutinib for 9 months. Previously, I had taken ibrutinib for 2 years followed by a 2 year break, but don't recall dizziness or headaches like I got right after I started acalabrutinib. Headaches disappeared when I started niacin for a few months, but dizziness with low BP is the only side effect that remains. It can be mild but usually causes me to steady myself on a wall upon standing, and mainly occurs several hours after I take my 1 and only morning dose.
My acal dose was reduced a few months ago as I approached normal ALC to see if that eliminated the dizziness and low BP, along with a perplexing itch that later was identified as reactivation of a 20 year old lyme disease infection as my ALC declined. Prior to dose reduction, dizziness was throught the entire day and night. After my dose reduction, only morning dizziness remained. I tried switching from morning only to night only dose of acal which greatly reduced morning dizzy spells, but night dizziness continued in addition to more sleep disturbances and reduced REM sleep time per my watch, so I shifted back to morning dose and dizziness followed along. My dizzy is most definitely related to acal, and I'm hoping to find a solution.
When I started acal treatment, I was at an extremely low body weight 102 due to enlarged spleen and inability to eat, but have finally gained back 6lbs which is closer to my normal 110.
On salt, my labs say I'm normal range, but I find that I'm constantly craving more salt, so that may be part of the equation. My partner is on hypertension meds and he prefers to eat heathy well-balanced low salt meals as I do. I supplement salt with nightly pretzels or baked chips which never seem to have the salt level I crave. I've also been sprinkling Pink Himalayan salt with every dinner, which I really didn't do as much before.
I drink a good amount of water and other beverages daily, and do not often sweat with my ceiling fan running all winter, but if I ever sweat, my doctor told me to try drinking Gatorade all year.
I've also tried increasing caffeine from 1 to 3 cups coffee to see if that counteracts the dizziness and it does a bit, but it can take hours to drink a few cups just as dizziness normally declines around noon.
I still haven't solved my acal-related dizziness and low BP but after reading everyone's thoughts here, I think I may try adding more salt. Cravings may be telling me what I really need.
Have you talked to The dietitian at the Cancer Center. Maybe they can set you up with a diet to help you gain some weight and get your proper electrolytes. I have been on alcabrutinib for six months. I have been feeling great especially as my counts have gone down although still 70s. My main problem now has been cramping in my feet and legs at night and in my hands during the day.
I have MCL since September 2019, after benedustine + Rituximab for 6 months and 24 months of Rituximab I have cramps in my legs and some times in my hands. Been dyagnosted sensitive neuropathy Alpha Lipoic Acid 600 mg every 24 hours works fine for me.
Since january 24, 2022 Im taking Acalabrutinib 100 mg every 12 hrs, doing fine except feeling a little dizy when standing
I am not familiar with MCL. What does that stand for? I do have neuropathy in my feet. It feels like there is a half inch of rubber under the balls of my feet lol. I have told my Dr about the cramps but she never said anything about that condition. I will ask. Thanks for the input!
I want to thank all of you for taking the time to respond. Clearly low BP appears to be side effect as I expected. Have any of you stopped Acalabrutinib or any BTK due to low BP? If yes, did your BP return to normal with no lightheadedness/dizziness?
In response to some of you, my salt level is normal but on low end of normal range. I have always been careful about salt intake because I once had hypertension 10-15 years ago when my weight was normal which is around 150 lbs. I have seen at 3 or 4 dieticians over the past few years and they have helped. My diet is somewhat restricted right now due to gallbladder removal 11/9/21. Eating high fat high calorie foods difficult. My current weight is 134 and difficult to get above that weight no matter how much I stuff myself.
I’m seriously considering temporarily stopping Acalabrutinib for a few weeks to see if BP increases and morning lightheadedness disappears.
CADreamer, I just noticed you've had your gallbladder removed, and eating high fat food is difficult. 
I have the same problem. Gall bladder was removed a few years ago, but I still can't eat high fat food without severe indigestion a couple of hours later.
There's probably no connection between gall bladder loss and blood pressure, but I thought I'd mention it.
I'd be wary about stopping Acalabrutinib for a few weeks, as a test to see if it helps the blood pressure. If your CLL is stable it would probably be OK, but sometimes there are unexpected problems. I understand the temptation, but better to check with your doctors first.
Best wishes
Paula
Thank you Paula for additional info. I have update to my original post. Lightheadedness in morning disappeared. I feel much better. However, low BP (about 105/60) usually remains first thing in morning standing up. BP improves usually as day progresses. I completed a quick analysis of my BP and weight the previous 6 months to treatment with Acalabrutinib in June 2020. I obtained data from online “summary of visits” to various Doctors. The data showed that I had low BP (as low as 100/60 sitting) several times and my weight was close to normal. Therefore, it appears low BP was present prior to treatment. I still think it’s possible Acalabrutinib could have some impact on low BP but impossible to measure.
I developed low blood pressure shortly after starting acalabrutinib. I have always been a bit hypertensive prior to this. Never put it together that it might be the drug. It caused lots of other issues for me as well.
Hi, I have MCL, started w Acalabrutinib Jan 24 2022. When liying in bed and try to stand up I feel dizzy but after sitting in bed for 30/45 seconds I’m ok. Same happens when sitting for a long time
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