Omeprazole and CLL: Has anyone noticed a jump in... - CLL Support

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Omeprazole and CLL

Rando21 profile image
21 Replies

Has anyone noticed a jump in Lymphocyte # or increase in symptoms while on Omeprazole for heart burn? Also, did anyone have heart burn leading to diagnosis, problems swallowing, or odd arrhythmia type sensations in their chest?

I was diagnosed summer 2021. I went to the doctor because I thought I was having heart palpitations but I was also having symptoms like esophagitis with heart burn. I was able to dig up old CBC panels from 2014, 2016, and 2018. From those it looks like my numbers were first elevated in 2017. It’s interesting because between 2017-2021 my number grew only about 7% a year. However, once diagnosed and simultaneously treated with omeprazole for the esophagitis I had an abrupt 23% jump in lymp# in about 2 months with increasing symptoms. I am not sure if the two are related.

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Rando21 profile image
Rando21
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21 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Rando21,

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I don't have experience with Omeprazole, but I would guess that your ALC / Lymph# may be still very low for a CLL patient. Perhaps in the 15 to 30 k range.

Most CLL doctors will not be concerned until the Lymph# is over 30k and doubles in less than six months or one year. Many of us do not have CLL B-symptoms and need treatment until our Lymph# is well over 150k and can be over 500k in some cases before treatment is needed.

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I would expect most CLL experts to observe your Lymph# changes for several consective tests (likely testing every 3 months) before considering the trend as significant.

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If you want to read our past 26 discussions that included the word Omeprazole click this link and then you can scan through the discussions to see if any are helpful: healthunlocked.com/cllsuppo...

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Len

GMa27 profile image
GMa27

I was taking Nexium when it was still a prescription when I got diagnosed with CLL. I read that 1% of the population had elevated WBC. I was sure that was it. I challenged my PCP & he agreed to take me off of it for 2-3 weeks. Luckily I didn't have reflux issues while off of it. I still had elevated WBC. My PCP knew I had CLL cuz I had told him my Dad had it. It's hereditary but I didn't know that so I was still shocked I had CLL. Good part was, I weened myself off Nexium. I just take occasional OTC meds if I get an attack of GERD.

Sushibruno profile image
Sushibruno

I remember having horrible chest pain and heart burn before diagnosis. I've never suffer with this before.

Rando21 profile image
Rando21 in reply toSushibruno

Interesting. I wasn't aware omeprazole could elevate WBC and your symptoms before diagnosis sound fairly similar to mine.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toRando21

This recent reply to someone else, also from lankisterguy , concerning what may have caused your CLL is quite relevant:

healthunlocked.com/cllsuppo...

The only association I know of between omeprazole and cancer is that it reduces the risk of oesophageal cancer. That's because it reduces the continual scarring of the oesophagus from stomach acid. Otherwise the regular replacement of damaged cells lining the oesophagus increases the (small) risk of oesophageal cancer arising.

The insidence of GERD (Gastro Esophageal Reflux Disease) increases with age and it's very common above the age of 50. The median age of diagnosis for CLL is about 70. So you are going to observe a correlation between GERD diagnoses, resulting in the prescription of omeprazole and CLL diagnoses. That doesn't mean that omeprazole can cause CLL.

I was diagnosed with GERD just after my CLL diagnosis and I've been on omeprazole ever since, other than when I had to switch to famotidine to be accepted on a clinical trial. I was very relieved to go back on omeprazole, because famotidine didn't do that well at controlling oesophagitis. I was diagnosed with stage 4 CLL/SLL and lasted nearly 11 years in watch and wait.

You haven't shared your absolute lymphocyte counts before and after starting on omeprazole. My lymphocyte counts were fairly noisy, making impossible to identify any trends.

Neil

Rando21 profile image
Rando21 in reply toAussieNeil

You guessed right my numbers are very low. I was about 13.5 before and about 16.5 after. That small jump carried with it some odd symptoms. Aches and fevers. I wasn’t diagnosed till 2021 but I can find evidence of CLL by elevated lymphocyte counts going back to 2016. I ruffly averaged a 7% growth in lymphocyte numbers per year with no real symptoms assuming I had CLLprior to diagnosis. This is part of the reason the 23% jump with symptoms seemed to stand out but it’s certainly not definitive. I just find it hard to accept coincidences at times. Thanks for your input, it was very helpful.

LeoPa profile image
LeoPa

I had reflux and excess stomach acid earlier, before I went on a no processed food low carb diet, which fixed it. I was on this diet for a few years already when I got diagnosed. I did not take Omeprazole.

1935husband profile image
1935husband

I have been taking omeprazole for 2 years now. Took care of my heartburn and no other reactions. Blood numbers have improved and although still high are stable. Been on Ibrutinib for almost 3 years now and doing well.

Pin57 profile image
Pin57

Hi Rando21 - Been on PPIs for over 6 yrs (mainly Omeprazole) though my GERD/EOE doc has had me try em all to solve my mystery cough (not suffering heartburn, but GERD n EOE are the cough culprit doc says … they seem to help the cough but not cure it).

I’m W&W, dx in Sept 2021 no treatments.

Can’t say Omeprazole has an affect on my particular CLL. My ALC number in 2015 was 4.4, now it’s 8.3 so no huge increase in 6 yrs, in baby-stage of CLL. PPI use ok’d per my CLL specialist for my case to take.

Take care and hope you enjoy a long W&W. Sucks to see that you have CLL so young but with great science maybe they’ll find a cure within the many decades you have ahead of you!

BellaBee10 profile image
BellaBee10

Ok. Bit of a wildcard but just in case it helps. Some of us have low immunoglobulin numbers, and low iGa can cause something called SIBO which can cause havoc. This led me to be put on PPIs. Which made the SIBO worse in my case.

Rando21 profile image
Rando21 in reply toBellaBee10

That is helpful thank you. I guess I am just trying to get an understanding as I was only diagnosed a few months ago.

Smakwater profile image
Smakwater

Rando21,

I have been on omeprazole for more than 15 years without any perceived connection to increase in lymphocytes or cll symptoms. In addition, omeprazole was approved for me during my treatment with Gazyva and venclexta.

It is my experience and observation as is with all medication, that unless you work with a doctor or pharmacist who are both willing and capable in accurately diagnosing your individual symptom cause, it will be difficult to define relationships in influence measures.

JM

Rando21 profile image
Rando21 in reply toSmakwater

Thanks. That was very helpful. I guess I am still sorting out what’s normal with CLL.

Smakwater profile image
Smakwater in reply toRando21

Good luck with that - The Normal measuring device is being re-calibrated, and nobody knows where that is being done at.

KirbyBH profile image
KirbyBH

I have been on Omeprzaole for many years and am still W&W almost 16 years. It has not caused me any problem related to my CLL.

Rando21 profile image
Rando21 in reply toKirbyBH

Thanks for the input.

CCgroup profile image
CCgroup

I have been taking Omeprazole for 20 years as I had fairly serious GERD. I have had no problems or side effects in this time. I have been taking Ibrutinib for almost 3 years with no problem with the combination. The same hospital and oncologist gives me the prescription for both, so must feel the combination is not problematic.

The best of luck in finding what it is that is causing you grief.

Dan

NaturalWaze profile image
NaturalWaze

I complained to my CLL doc for over a year about what I thought was my heart beating wildly and burning. I would get in bed at night and feel beat-beat-beat. I was convinced it was the CLL but she knew it was acid reflux. She pointed out that she heard my stomach gurgling, with her stethoscope. At my next physical my primary put me on Omeprazole and all the symptoms are gone except the burning throat, which has subsided and seems to act up depending on what I eat.

Nugent666 profile image
Nugent666

I have had Barretts Esophagus for nearly 10 years and have been taking omeprazole the entire time. Last year I began getting severe burning in throat and upper chest when I did heavy physical activity or got anxious. It finally went away but last month I was diagnosed with CLL.

BellaBee10 profile image
BellaBee10

Wild card for you. Because of low iga we can be more prone to SIBO. And this can cause havoc.

schmooth97 profile image
schmooth97

OMG. I’m having issues with swelling more than normal and I did switch to Omeprazole in the Fall when things started.

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