A somewhat new development for me has me wondering if there could be any relationship to our illness, so I'm seeking comments.
My Blood Pressure has been dropping over time, and I did lose some weight in the last year, but I find it hard to imagine its because of the weight. One year ago I was 254 pounds (I'm 6'0"), and the other day I hit the scale at 221. I have seen my CLL Specialist very recently, she saw the drop, and had no concern about the weight. Overall I've just eaten a lot less at meals, but haven't really exercised.
I've been long term on two BP Meds Losartan Hctz and amlodipine, and when noticing a lowering of my BP six months ago my Primary dropped the Amlodipine. Then sometime in the last three months he took off the Hctz from the Losartan. At that point my average readings of around 120/80 had dropped to around 110/70. Last week in his office my reading was 88/65 and he said to cut the Losartan in half for a week and see him again this coming Tuesday. This was last Monday.
I didn't cut the dose, because I was afraid that the very low reading in his office was an aberration, and when I checked my pressure this past Wednesday it was around 114/70. So I figured I was right in not cutting the dose. Then Wednesday and Thursday nights I had very heavy drenching sweats in bed, which I have on and off from week to week but not every night. On Friday Morning , and through the early morning hours in bed, I had severe pains seemingly between the ribs both front and back. I also began to have bad leg cramps. We took my BP and it was 105/72, then Friday afternoon it was 110/66, and then it has gone down from there from Friday night into all day Saturday. On Saturday it went down early to the 80s over 60s, and then on Saturday Night lying in bed it went as low as 64/42.
I made sure I hydrated myself all day Friday from Morning through night. My thinking is I must have gotten badly dehydrated during the drenching sweats Wednesday and Thursday overnight. I was frightened by the very low readings Saturday night in bed, wondered if I should go to an ER, and decided to relax and go to sleep and see what it was in the Morning. When we took it a hour ago it was 114/70 and I was greatly relieved. My wife suggested not taking the Losartan at all this Morning, not even a half dose, and I agreed.
Have any of you experienced anything like this? Is it possible it is related to my CLL? I'm going to see my Primary again on Tuesday, and likely he'll be pissed at me for not cutting my dose in half last Monday after I saw him, but I'd really like input from those who live with CLL like I do. I can message my Specialist in Boston through the Patient Portal, but I'm trying not to message her unless its really important and related to my illness. What do you think?
Carl
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wizzard166
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I can understand why you were frightened. Night sweats are one of the symptoms my CLL specialist pays close attention to. So this may be a sign your CLL is needing more attention.
Taking your blood pressure at home is tricky. It’s not hard to get an inaccurate reading. On the other hand, your body may have been warning you that something wasn’t right with the pains in your chest area.
I would call 911 next time this occurs and call your medical team tomorrow. I’m not medically trained but old enough to have had friends ignore heart issues and wait too long. One friend survived and one sadly did not.
The worst thing that could happen if you call 911 is that the EMTs will check you out and say you don’t need to be transported. If you do need help, they can safely transport you and you will get help very quickly upon arrival at the ER.
My experience has been that men tend to put off seeking emergency medical attention. I would like to see you make many posts on this forum. It is okay to seek medical attention when you have chest pains.
Thank you for your concern and advice not to delay being checked out. I had soaked the bed all night both Wednesday and Thursday, so my first thoughts when I felt the pains all around ribs front and back was that I was cramping. What confused me was that I never heard of cramping in rib muscles, and it did scare me that if it progressed internally to ribs that the heart isn't so far away. When I get leg cramps early Morning hours, they usually start in the toes and can go into the calves. I get up when this happends and the walking around the bedroom and bathroom ultimately relieves it. This time I got up but it didn't help the pains in those rib areas. I actually also began to cramp in my legs when i got up. So it confirmed to me the pains were cramps, but I suppose it wasn't smart to make that educated guess.
I kept drinking as much water as I could during those early Morning hours, maybe three water bottles full, and by 7:30am when I got up again the rib pain areas were better. I read online that severe dehydration can cause fluid loss in the areas ribs attach to muscles, so I'm guessing that was the source of the pain. My BP that Saturday Morning was below 70 on the top number and close to 40 on the low one. I kept drinking both Gator Aid and Water regularly, and didn't have any coffee through the day (I usually drink a lot of coffee). I stopped my BP medication completely both Saturday and Sunday, and this Morning its reading 117/59. Its so weird that for over two decades I've been BP controlled on Losartan and Amlodipine, with beautiful readings close to the classic 120/80, and now its dropping even without medication these last two days to 59 on the lower number. I don't get it, unless I'm still a little dehydrated.
Hi Carl. You dont say what treatment you are on - if any? I'm sorry about your anxiety over your bp, but am interested about ''had severe pains seemingly between the ribs both front and back. I also began to have bad leg cramps'' I'm not medical but do know that cramps can be a result of dehydration, amongst other things. Are you getting enough booze-free liquids down every 24 hours? Regarding the pains you describe, I have these too - irregularly. I started Calquence a month ago and have various side effects (esp headaches), but also the pain you describe. Sometimes it's as you say (from spine?) and sometimes in my upper arms and shoulders. Haven't raised this yet with my haematologist, but the specialist nurses think it may be from bone marrow as the Calquence starts to work. Good luck - Handley
The intense pain is worrying. Could it have been a mild heart attack? You are not underweight and though anorexia can cause the BP to drop a lot you aren't anorexic for sure. I'd get a good checkup at the cardiologist's.
I saw a Cardiologist at advice of my Primary about six months ago, because on an EKG the Primary found something called Right Bundle Branch Block. The Cardiologist did a Stress Test and said I was fine. The then re checked me in three months, and again said I was good to go without followup from him. Then I had my Annual Medicare Wellness visit at the Primary one week ago, and he said the EKG was good.
I see the Primary again tomorrow, and I'm pretty certain this was a bout of severe dehydration from the soaking night sweats. It caused cramps so severe they went into muscles near or in the ribs, and lowered my BP at its worst to 60/40 last Saturday.
What is worrying me almost more, is I just had a PSA test result of 5.9. It was requested by a Urologist who I visited first time ever about two months ago. I had some difficulty urinating during the night, so he did a digital exam and said enlarged but fortunately didn't feel lumps or bumps he said. He ordered a PSA one week before a re visit which I have today. I went online yesterday and saw the result at 5.9 and naturally got scared. I know that between 4 and 10 it can be deceiving and doesnt mean likely Prostate CA, and that over 10 is more suggestive of possible CA. What I don't know, and I was going to post today and ask guys, is if those of us with CLL fare much worse with Prostate CA than do men who don't have CLL. Any input is welcomed.jj
PSA is loosely associated with prostate cancer. Almost all men die “with” prostate cancer as opposed to “from” prostate cancer. It is normally not aggressive but is occasionally. My dad had the normal kind and died at the age of 94. My brother had a very aggressive prostate cancer - his PSA reading was 8.4. Your urologist may do some follow-up tests since your PSA is above 4. I don’t know if patients with CLL are more likely to have prostate cancers that need to be treated. My brother is fine now just sans prostate.
I know we don’t like to bother our medical team everyday but it is OK to alert them to troubling new symptoms. I’m glad you have a heart specialist, CLL specialist, urologist and GP. Don’t rely on Dr. Google so much!
I don't really rely on Google, but I can't help using it to bring my knowledge base up to an acceptable level to then interpret my experts. I rely on the experts of course.
Called my Brother Matt yesterday to run the PSA thing through him. Matt is one of those super brilliant people who was accepted to Medical School straight from High School. He's an Opthalmologist in the Rockies these days. He reinforced what I read on Google about the lack of reliability of PSA tests. He also told me he had a bout with Prostatitis with fever and pain etc, during which his PSA actually went to 35.
His big grief right now, and I have a feelling you can relate to him, is that he booked a very expensive one week bycycle trip to Italy. Within the last week some spine problem caused his foot to drop, so he hasn't been able to bike or run (he runs a lot too). Now he is fretting about the insurance he picked up for the trip, and whether pre existing things will count against him, inability to perform on the trip if he goes, and the possible need for something called a laminectomy. But he did calm me down a good bit, even though I hear the concern in his voice.
Anyway thank you and all others in our group for your input and feeling part of a larger group who are in this together.
I am sorry your brother is having issues with his spine and foot. Italy is not a country to cycle in for the feint of heart (or foot). It would have been a wonderful experience.
I am at home awaiting my husband’s return from the Albuquerque Balloon Fiesta. When we made our plans six months ago, we were all planning to go. But it turns out I could not go. My stamina is low at the moment. Plus, being in the middle of a crowd of 100,000 people, most of whom traveled there by plane, was out of my comfort zone.
And my daughter flew out to take care of me. I don’t like being dependent at all. It’s frustrating to start something and not be able to finish it.
Your brother is handy to have around! And yes, we all look up information online. It’s too easy to pass up.
I figured with your ICON name you might be a bicycle person like Matt. I wish I had been like him with his incredible fitness routines, but life took turns that led me to get out of shape. He lives close to Vale and told me every Morning he gets up early and runs even up hill in that rareified air. Then on weekends he does long distance bicycle riding. He not long ago actually came in 5th in the Coloroado Marathon (he is twelve years younger than me at age 62), although it was 5th in his age band; still, wow.
I've taken many plane flights, and in the last couple of years gone to Broadway plays and indoor concerts etc. I think the fact that I've kept vaccinated, and did have and recover from Covid once before, has kept me alright. Maybe I'm crazy, but i want to keep living and experiencing.
How large is the prostate? If its 60 grams then a PSA of 5,9 is within what a benign enlargement can cause. I'm waiting for my PSA results, due in a week. Trying not to think about it too much. You will likely be monitored more closely for some time to see what your prostate size and PSA level does. I do 6 monthly checkups including sonography.
I have no clue what my size is, other than when he did the digital exam two months ago he said it was enlarged. I also read online that age is a factor in how high the PSA reading is. Supposedly over age 70 it can go up as high as 6. I'm 75 and my reading was 5.9, and when I saw him today to review the reading his first comment was "That is high".
Hi Carl, that is true. I read that even as high as 8 can be caused by benign enlargement as we age. The larger the prostate the higher it can be. As I understand it a high number not accompanied by marked enlargement is what is truly worrisome. So it's good that yours is enlarged 🙂
Forgive me if you already told me this, but do you live in PA?
Ironically I remember even as a young man being told that my Prostate was enlarged. I think on every digital exam, which I really hate doing, the doctor over decades has told me that. So maybe it is simply a combination of a regularly large prostate and increased age; I hope.
Its funny but the prospect of Prostate CA scares me a lot more than CLL. For a long time I was waiting to be told I had CLL, so when the diagnosis finally came it was no surprise to me. I'm the fourth in a direct line row family wise, with my Father, his Mother, and her Father before me. My Grandmother went to around age 93, but my Father ended at 71. My recollection is he was bleeding internally, his stupid Medicare HMO wouldn't bring him in when my Mother called and begged a number of times, and so his heart just went after a week of that. He didn't have to go, if appropriate medical measures were taken, so I figured I could go as far as Grandma did. But Prostate CA I know can be a killer, so I'm a bit nervous to see what the MRI says.
Hi Carl, I'm from Slovakia, a PaLeo nutrition fan, hence the nickname 🙂. Given your age you have all the chances in the world to make it to 95 even. Prostate CA is very treatable these days and 95% of patients are alive 15 years after diagnosis so I read somewhere. In older people even cancer grows slowly, Warren Buffett also had prostate CA a few years ago and is still going strong. Even in the unlikely event that you have it it is likely that you'll die with it not of it. Try not to worry too much. That's what I'm trying to do about my enlarged prostate too. My father had one, my brother has one. Runs in the family.
I took a few minutes away from my crushing lack of time to get ready for the Medicare "Season" which starts Sunday October 15, because I really wanted to understand the Paleo Diet. I found a truly great piece on it done by Mayo Clinic, and I have to admit it makes sense and actually is a diet I would like. This is the article for any who want to know more about the Paleo "Caveman" Diet
That's a good article. What's not correct is the lean meat part. Without going into details, lean meats are for the dogs, fatty cuts and organ meats are far more valuable. Avoidance of dairy especially cheeses and cottage cheese is important for us males. I read that dairy protein is not good for the prostate. I'm living proof. I used to eat cheese like others eat bread. Till I found mine to be enlarged. So the only dairy I eat now is a teaspoon of home made sour cream every day. It's my probiotics. All doubts casted by the article on the PaLeo diet are totally unfounded. May, possibly, blahblah. I understand why crap food producers hate it. The more crappy a food the higher the maker's margin. Cornflakes are a gold mine. Though rats prefer the cardboard box it comes in to it 🙂
I agree totally with you. I've been a big cheese eater also, so I'll heed that advice now. I know a big culpret is wheat with respect to putting on weight and overeating. My youngest Son keeps up on all of these things, and actually was referencing the Paleo Diet years ago to me. He has had three open hearts in his short life, and also trained with American Top Team for four years about a decade ago. So he has been focused on diets and exercise his whole life.
I have experienced a similar phenomenon. The sicker I get with my CLL the lower blood pressure goes. As I get healthier it goes back to the usual higher scores. Mystery to me.
I have a sense that my average BP has dropped, but I think doctors care more about and absolutely high or low BP rather than a trend, given how much readings can vary even within the same session. My absolute BP has always been good in the doctor's office, even though my arm may go to "sleep" when I sleep on it, or I get briefly dizzy on standing. My resting pulse has also dropped from the mid 70s to mid to upper 50s as well. I am certainly out of shape physically, and have increased exhaustion for a couple of days after major exertion, such as walking more than a kilometer, or doing heavy lifting. How much of that is due to CLL and how much to conditioning decline is never certain. We age with CLL. I have been watch and wait for 11 years, and may finally be starting treatment due to the fatigue, an enlarged spleen, further decline in immune function, and a large lump on my face - CLL infiltration of the parotid gland - that makes it uncomfortable to sleep on that side.
One thing to check is whether your BP changes dramatically compared to a sitting reading after you stand up. There is a known syndrome of autonomic dysfunction called POTS.
There is a tilt table test for that. But there's no sure-fire treatment. It's a syndrome, which is saying that it's a collection of symptoms with no apparent single explanation.
I don't seem to have POTS myself, but my daughter has been diagnosed.
Could you be nearing time for CLL treatment? Blood counts and size of nodes are not the only factor driving start of treatment.
Thanks for your input. All of the fabulous input we get on this site, when we reach out to our group, is a huge help as we travel this broken road we are on.
Hmmm there were some studies done with the thiazides specifically, that after a while on them, one can cut the dose and still get therapeutic effect. (This also happens with other drugs, notably the pssychotropics). So it seems reasonable that some people might need a decrease over time, especially if weight was a major factor in the higher bp readings. No way to easily know if weight versus stiff blood vessels are contributing more to high blood pressure. Now that your weight is going down, you may see exponential decreases in BP from the medication, it may not be a linear decrease from weight loss. And I don't think your doc will be "mad", their recommendation could easily have been "let's see if this is an aberration". When you explain you preferred to go the "this may be an aberration, let's monitor the BP instead" route. If you saw him early in the AM, before you had done much exercise, and don't get particularly anxious at doc visits, your blood pressure would likely be lower than if the appointment was in the afternoon, after caffeine & daily routine exercise.
The nights sweats could contribute to "dehydration" pain. And unless you are setting alarms to remember to hydrate, it is so easy to forget to hydrate as we lose the "thirst" drive as we age. I am going to start serting alarms to remember to hydrate; I no longer have the Growler water jug sitting on a desk in front of me, reminding me to finish it before leaving work.
I can't think of a way this might be a CLL thing outside of the night sweats, causing/contriburing to dehydration and pain from electrolyte imbalance. But who knows. As people live longer with CLL than previous decades, we may find there are a new "group of symptoms" we have to adjust to, as part of the "aging with CLL" process.
Dear I wish I could remember your name but I can't
I remember from some post I started a year or more ago about the meaning of our icon names what yours actually is, but I just can't. What I do remember is Sofia is a favorite puppy pet of yours.
Anyway I truly value your knowledge and input. My much younger Brother Matt is a phenomenal Opthalmologist in the Rockies by the way, super brilliant, so if eyes are ever an issue let me know.
My Primary actually called me today to see how it is going with the BP, and I told him I went from not cutting them in half a week ago to not taking them at all two days ago. You're right he was cool with my logic and pleased that after two days my reading today was 117/59. That was actually early AM, and then later Morning I saw the Urologist and was 117/71 there. Now the reason for seeing the Urologist results in anxiety for a while, until I get the MRI he just ordered after seeing the PSA reading of 5.9. I don't scare easy, but now I'm a little nervous. If the MRI shows beginning Prostate CA, I'm frightened about what ability my CLL riddled body has to fight another Cancer on another Front. Guess its stupid to worry about this until we get the results of the MRI. I'll have that Tuesday the 18th.
I'm finally getting more sensible with how much I'm drinking, and also with decreasing the Coffee. I love Coffee so much, that I've historically drank five or six large mugs in the course of a day working in my office in my home. I've heard that Coffee increases dehydration, so since last week when I had the two overnight huge drenching sweats I've drank mainly clear fluids. I gather you are in the Rockies, and my first visit to see Matt over fifteen years ago resulted in a hospitalization for dehydration, because I didn't pay enough attention to their airport warning to drink a lot of water. I'm sure it was the dehydration that dropped the BP so much, but I guess the weight loss is helping too.
Difficult for me to comment from my perspective as I started taking Losartan in 2016 following a minor heart flutter late 2015, and despite never having high blood pressure - maybe a tiny bit low - my GP has kept me on a low dose ever since as a preventative measure. I've not noticed any side effects of tablets and wonder why they keep me on them!
I am aware night sweats can be part of the CLL path so would assume yours would be related to that.
Sorry can't really be of any help but hope things settle down for you soon.
The good news is that I stopped my last blood pressure pill Losartan, haven't had it now for six days, and this Morning my BP was 125/72. Interesting too is that I'm not as tired as I have been for a good while, so maybe my low BP was a good part of that problem too.
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