opemrazole gastro capsules

[Tonnross]

having cll and issues I have been on omeprazole for years due to the amount of meds Iam on. However recently been told that these are not for long term use. Anybody used them or have information. Iam in year 12 cll but it’s sepsis that’s causing me havoc and totally knackered all the time lol rant over

[Rando21]

I’ve heard the same but heard conflicting info about risks. It helps me a lot too so I’ve wondered about this myself.

[Hilomom]

I took it for years, until it stopped being effective.

[Suzie42]

I was on it for 4 years when suddenly it didn't work snd reflux got so much worse. I've tried other medication but nothing has worked. I've got to have an Endoscopy now to find out what is going on. It's frightening as all the medication I take has obviously impacted my stomach etc. I didn't have hardly any problems before I started taking Omeprazole, my gp gave it to me as I was having asprin daily for my heart.

[Tonnross in reply to Suzie42]

aspirin comes in different forms. do you take it under your tongue.

[Suzie42 in reply to Tonnross]

No it's gastro resistant and I swallow with water

[Wiggynugget in reply to Suzie42]

Hi Suzie, I feel your pain! I have been dealing with gut issues too, and got to the point where I was only able to eat baby food.No doctors could help me. I went to Mayo in Jacksonville and found out I was severely constipated. They had me take milk of Magnesia for 3 weeks. I felt miserable, but aleast I went. As soon as I stopped I was constipated again. Finally I decided I had to stop the Ventoclax and went to a homepathic doctor. He has me on herbs and a fiber but I only take a tsp of cuz otherwise it causes severe pain. Then he has me juicing and and eating soup with chicken and all kinds of squashes and raw milk cottage cheese blueberries. Digestive enzymes are important too! I hope my post helps you! Your in my prayers hang in there!❤

[Vlaminck in reply to Suzie42]

That's really too bad. Doctors are always putting people on Omeprazole and it really disrupts yourdigestive system if you are on a long time. It's been a couple years since I read all the negatives, but was concerned that they put my son on it for months and months, until we weren't sure if it was the med or not that caused continued gastro problems. Google it. As I recall, it's really a harmful med, useful only short term to let an ulcer heal or for some other temporary use. It even says on the box, if I recall, not to take long term.

[Wiggynugget in reply to Suzie42]

I took it too for awhile. I got really bad and had gas trapped in me and alot of pain and misery. My new GI doctor said you should only take it for a short while. I did research and saw a homeopathic when they discussed taking out part of my colon. I learned that it removes all the stomach acid and you need it to digest food. So nowI take digestive enzymes with hcl and it helps alot.

[LeoPa]

I took omeprazole for a few days before I stopped, because it caused stomach pain to me. Back in those days I had acid reflux. Not because of medications but because of my crappy diet. I cleaned up the diet and acid reflux went away. Never had it ever since.

[Suzie42 in reply to LeoPa]

I've got a crappy diet, but the meds have changed my taste buds and cannot stomach eating healthy foods. It's a disaster, the only plus side is I cannot stand alcohol anymore

[LeoPa in reply to Suzie42]

What do you mean? Food isn't about taste buds but nutrition. Nutritious -eat, crap-don't eat. The rest is just willpower 🙂 Having said that, taste buds can be rewired. I love my meat and eggs 💞

[Suzie42 in reply to LeoPa]

Medication has affected my taste buds and so when I say go to eat an egg I will want to vomit.....the smell of the food makes me really nauseous. Food I used to love, fish, veg, potatoes, cheese sometimes I cannot eat at times. It is not nice and willpower doesn't come into it at all. I have anti sickness tablets to help. I used to eat fish and mainly chicken, I now like lamb but if I eat it after an hour I feel really sick.

[LeoPa in reply to Suzie42]

Wow, sorry about that.

[Suzie42 in reply to LeoPa]

That's OK, it's really hard for people like me

[ThistleBSwiss in reply to Suzie42]

Look into leaky gut and the Auto-Immune Protocol (AIP).

NSaids including aspirine destroys the gut lining. My husband having been recently diagnosed with CLL 7 years ago was put on a high dose of Opemrazole for another issue after an endoscopy.

After researching Opemrazole online and learning about leaky gut and and discovering AIP, he decided to give the AIP diet a 30 day try - the minimal time they say it takes to heal your gut lining. If that didn't work then he would consider Opemrazole.

It was quite a change but we persevered - I did it with him - we lost weight that he never put back on 🙃. Throat issues stopped. No more acid reflux and no more MIGRAINES that he has suffered with most of his life! Who knew!

On AIP you can't take NSaids since they destroy your gut lining. He didn't think he was going to be able to not take any NSaids but in the end never had to take any then nor since -nor had to take Opemrazole.

We are all different. I just wanted to share our experience. We've been told that diet doesn't treat the CLL but helps you withstand the chemo when you need to do so.

[Accordion]

I have also taken ezomeprazol for years. Take it first thing in the morning, before I take any other pill. During the day I then try to spread out the different medicines, for heart and CLL and ITP (among them aspirine and acyklovir). Hopefully that will keep my stomach happy. I never knew ezomeprazole could lose its effectiveness, that was new….

[Tonnross in reply to Accordion]

Thanks, all info is helpful

[Dragonfly2007]

Hi Ton Ross, I'm on them long term. As I have just started treatment with ibrutinib I did some searches to see if it was ok although the pharmacist didn't comment when she saw it on my list. Whilst this link doesn't answer your question I thought it might be of interest.

PubMed says: The pH-altering agent omeprazole affects rate but not the extent of ibrutinib exposure. This drug-interaction study evaluated the effect of omeprazole, a proton-pump inhibitor, on ibrutinib's pharmacokinetics (PK) in healthy participants.Conclusions: The decrease in Cmax without a corresponding decrease in AUC by omeprazole was not clinically relevant for ibrutinib's bioavailability. No dose adjustments are recommended during ibrutinib's co-administration with omeprazole or other pH-altering agents.

I take mine 3 hours before the ibrutinib.

[Tonnross in reply to Dragonfly2007]

Thanks all helps but it seems we are all different in how it works or not

[Phil4-13]

Tonnross, I was put on protonix(pantoprazole), one daily. Into the 4th month I noticed my calves felt "fuzzy" and my legs felt wobbly. I stopped it. I have had omeprazole for a long time, but only took it before a meal that might have a "surprise spice". I now rely on famotidine in those instances. 🙂 Sandra

[Tonnross in reply to Phil4-13]

Cheer seems it’s so different for everybody

[MikeHoff]

I have CLL since 2010. 6 years W&W then 6 years on Imvruvicac(Ibrutinib) and currently MRD Undetectable. In 2006(prior to CLL diagnosis,) I had gastric sleeve procedure for weight loss and after losing 100 lbs I was prescribed daily regimen of supplements to make up for those missed due to reduced diet and also 40 mg Omeprazole daily prophylactic forever in order to avoid ulcer or other stomach issues which would be difficult to treat due to reduced stomach size. I have had no problems with it and my GO and CLL care team are all aware and fine with it.

[ErieSailor]

I have been on daily Pantoprazole for my stomach for about 4 years. I was having gastric distress based on foods (non specific triggers), some acid reflux, but really the acid build up and immense bloating in my stomach after eating, leading to vomiting periods that would come a couple hours after eating. (And yes, even the smell of food would make me feel like vomiting at times). I chalked my issues’ origin up to stress at work. I had scopes all ways and no real issue other than inflamed guts and a small hiatal hernia. My gastroenterologist said that for me Pantoprazole is not an issue for long time use.

I was only diagnosed with Leukemia (13q, mutated, and stage 0 CLL, W&W) 2 yrs ago and taking pantoprazole has not caused anything one way or the other.

However, what I have discovered, being one that doesn’t like meds anyway, is I can halve the dosage (40mg to 20 mg daily) with no change in effectiveness. So I’ve done that on my own with my gastro’s approval after the fact. Retiring has helped reduced stress also.

For ANYONE with gastro distress, please check into the “transit time”* of food through your system. Mine was slow, and so a lot of my gastric distress was caused by not being able to “empty” in a normal time frame. Gastroenterologist then Recommended I take Miralax daily, which helps immensely. (It is not a laxative). Now even if I miss my pantoprazole for a day or so, I don’t have issues. I am about to experiment with not taking it at all as long as I keep faithful to my Miralax. (Note, it’s not just for us old folks, my great nephew at age 9 is on it).

*there’s a stomach emptying test where I was fed eggs and toast that had some traceable contrast in it, and they took scans/X-rays to see how long it took to pass out of my stomach.

bottom line, if you need something like pantoprazole, check into your transit times before hanging onto stomach drugs long term. It doesn’t matter if you “go” every day, you still can be backed up.

[BeckyLUSA]

I had the same fears when my doc put me on Lansoprasole, same type of drug, but he told me that the long term side effects really are “long term” and I was too old for long term effects to be a bother to me. I was 67 or 68 when I started taking them. Don’t know how old you are, but he said he was worried about folks who started taking them at middle age or before.

[Tonnross in reply to BeckyLUSA]

Thanks and regards from Scotland

[BeckyLUSA in reply to Tonnross]

Would love to visit there someday! On my bucket list!

[SeymourB]

On various PPI's (proton pump inhibitors) for decades now for GERD.

The evidence for problems is often contradictory.

en.wikipedia.org/wiki/Proto...

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drugs.com/omeprazole.html

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scielo.br/j/ag/a/6PB9MQSppm...

SAFETY OF LONG-TERM PROTON PUMP INHIBITORS: FACTS AND MYTHS

Arq. Gastroenterol. 59 (2), Apr-Jun 2022

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=seymour=

[paulabs]

Back to the original question-- I have taken 40g omeprazole with my ibrutinib for 7 years. It continues to be so effective I notice even one missed dose. Early on my PCP wanted to dc it on the grounds that it is not safe for long term use. My gastroenterologist (who follows me for hemochromatosis) overruled her and pointed out the specific study that has been wrongly understood. It may be relevant that, when my CLL was diagnosed in 2016, my stomach lining was found to be totally infiltrated with white cells. Immediately following my first rituxan infusion the stomach discomfort cleared.

[InFlorida]

They’ve always been for “short term” use. That’s why the over the counter bottles contain 14.

I still take them and kinda figure with the meds my body has been through, my body can handle it. Also, I think the benefit outweighs the potential long term effects. I tell my doctors that I take it and they have not voiced any concerns as well.

[Tonnross in reply to InFlorida]

Thanks

[DoriZett]

I am a long term omeprazole user. I went off for 5 years for Acalabrutinib treatment and we tried to treat the reflux with other methods (not successful).

PPI acid reducers were contraindicated with the original Acalabrutinib, and after 5 years of CLL/SLL treatment (in a clinical trial), I ended up with 2 bleeding ulcers and had to stop CLL/SLL treatment.

I am back in watch and wait - and partial remission is holding 3 years +.

At gastros prescription, I immediately went back on omeprazole. The bleeding ulcers healed, but last Fall - the reflux increased - even while on omeprazole.

I had a battery of GI tests (CT, endoscopy and HIDA test) and all were normal except for slight gastritis (redness of the stomach lining).

I was eating a healthier diet - but it included a lot of tomatoes (in place of bread), fresh pineapple, oranges, grapefruit, 2 cups of half caf coffee daily, and chocolate as a sweet (versus baked goods).

None of those foods is a good diet for acid reflux, but I did lose 50 pounds.

Since my battery of gastro testing, I now take Protonix 40mg in the morning, and Famotidine 40mg at bedtime, and had to cut out all those foods I listed that helped me lose weight.

Long term used of PPI's/acid reducers is not generally recommended. They are not good for bone health. CLL/SLLers already have bone health issues, then add in age, and being a woman - all factors which do not bode well for good bone health.

But here I am - still needing the acid reducers. I do have osteopenia, so weight bearing exercise is advised (I had an adverse reaction to the bone strengthening medication/treatments).

So I walk/march 30 minutes daily, as well as the change in diet to accommodate the reflux, and my 2x daily reflux meds for, apparently, the rest of my life.

Better news - the new Acalabrutinib tablets do not contraindicate PPI/acid reducers, and we also have other BTK inhibitor CLL/SLL treatment options.

All the best to you as you figure out your health path.

[AussieNeil Partner Administrator]

Tonnross, you've had some excellent replies. No medicine is risk free and ideally some of us wouldn't need to take PPIs. Reducing stomach acid can reduce the absorption of some nutrients, but having acid in your oesophagus might put you at increased risk of developing oesophageal cancer* - something to particularly keep in mind when CLL puts us at increased risk of secondary primary cancers.

I'd suggest that in addition to stress and food sensitivities, there is a genetic component to why some of us have difficulty with the valve at the top of the stomach properly closing. It's definitely worth experimenting with dietary changes and stress management. If that doesn't work then we can explore different drugs and reduced drug dosage. For some, surgery - Nissan's Fundoplication can be warranted.

Nissan's Fundoplication

my.clevelandclinic.org/heal...

"Sometimes, you can find relief from acid reflux symptoms with medication or lifestyle changes. If symptoms continue after trying noninvasive treatments, your healthcare provider may recommend Nissen fundoplication surgery. Both children and adults can be candidates for Nissen fundoplication."

Also in the same article:-

"Relieving GERD keeps you more comfortable and reduces the chance of developing Barrett’s esophagus. Barrett’s esophagus raises the risk of esophageal cancer."

Personally, I've found that I had acid reflux of which I wasn't aware, which caused sufficient scarring of my lower oesophagus to require a stricture dilation (done during an endoscopy investigation). A blood relative had Nissan's Fundoplication operation in early childhood - so that's unlikely due to lifestyle choices!

My gastroenterologist prescribed omeprazole and that was over 15 years ago. Due to concerns about long term use, I have found that I can generally control symptoms with 20mg of omeprazole taken alternate days. During my clinical trial on AVO, I had to switch to famotadine and take it a couple of hours after taking my acalabrutinib dose for the day. (This was before the reformulation from capsules to tablets that  DoriZett covered.) I was very relieved at the end my treatment to be able to switch back to omeprazole.

Edited per below meta-analyses :healthunlocked.com/cllsuppo...

Neil

[Astro617]

I would look up side effects of long term use of omeprazole. A cursory google search says that long term use can increase the risk of gastric cancer by 45%, among other possible side effects. I had to take it for a month or two and it did not agree with me. I read that when you stop it you can have a rebound with the acid reflux. To wean myself from the omeprazole I took DGL capsules (deglycyrrhizinated licorice) for a short time. It is important to not just stop it abruptly if you decide to stop taking it.

[Cornhusker]

I specifically addressed this with my PCP on my last visit. She said that as long as my bone density scans were good that she wasn't worried about it. Her only concern was that it can affect your bone density.

[lexie]

My husband was on daily omeprazole for 8 years.

[Tonnross in reply to lexie]

Did he have any issues may I ask

[lexie in reply to Tonnross]

He had no issues and if he had I would have detailed them for you. Good luck.

[Motorman]

I was on Lansoprazole for 6 years, I now have Parkinsons Disease, do PPIs cause Parkinsons, well the jury is out but there is some evidence that PPIs increase the chances of getting Parkinsons. A Google will provide lots of reading. MM

[alexask]

Long term use of PPIs has been associated with an increase in stomach cancer. An alternative worth trying might be Orange Peel extract (d-limonene) (which some studies have shown may be beneficial in reducing colorectal cancer).

Some reviews from out there.

reddit.com/r/Supplements/co...

amazon.com/Jarrow-Formulas-...

Doesn't work for everyone. I did find it helpful (though I don't have CLL)

[AussieNeil Partner Administrator in reply to alexask]

Alexask, I'd be very wary of anecdotal evidence. Also, two recent meta-analyses show no association between PPIs and gastric cancer and that PPIs are not risk factors for esophageal cancer respectively.

Meta-analysis: Use of proton pump inhibitors and risk of gastric cancer in patients requiring gastric acid suppression

pubmed.ncbi.nlm.nih.gov/365...

Conclusions: We found no association between PPIs and gastric cancer in NRS having adequately controlled for confounding. Published studies may suffer residual confounding.

Assessment of the Relationship Between Gastric-Acid Suppressants and the Risk of Esophageal Adenocarcinoma: A Systematic Review and Meta-Analysis

pmc.ncbi.nlm.nih.gov/articl...

Conclusions: The results found that gastric acid suppressants do not have a protective role in EAC and are not risk factors. Future studies of confounding variables and risk factors are needed to understand what affects EAC development.

Neil

[alexask in reply to AussieNeil]

Hi Neil,

Well it would be nice if some company did a double-blind randomised control trial of d-limonene and it's impact on reflux, but since there would be no money in it it's not going to happen.

Also given that 79% of over 1500 people on Amazon rated it 4 or 5 stars it seems somewhat unlikely we can put all these positive reviews down to the placebo effect.

Cheers

Alex

[AussieNeil Partner Administrator in reply to alexask]

Positive reviews or not, why take the chance on a supplement marketed for occasional use for mild oesophageal discomfort, for which there is no long term safety data, when there's a low cost alternative for much more severe oesophageal discomfort that does have long term data. (D-limonene is also currently unavailable from Amazon.)

According to webmd.com/vitamins/ai/ingre..."When taken by mouth: Limonene is LIKELY SAFE when taken in food amounts. It is POSSIBLY SAFE for most people when taken by mouth in medicinal amounts for up to one year."

Also, "Medications changed by the liver (Cytochrome P450 2C9 (CYP2C9) substrates) interacts with Limonene", which makes its use with many drugs problematic.

Also see mskcc.org/cancer-care/integ...

Neil

[alexask in reply to AussieNeil]

Because trying to explain away the many studies showing elevated cancer risk from long term PPI use as confounding issues doesn't fill me with confidence. The other advantage with D-limonene is that for me, and I think others, you may only have to take it for a couple of weeks and it resets your system for a good few months, so the risk is further reduced from this occasional usage.