Long term lansoprazole use

[LRH77]

Hello community,

I haven't been very active on here of late, life is so busy!

My question is regarding lansoprazole. I was prescribed it when the aspirin and then the clopidogrel I take for ET was causing issues with my stomach lining.

Now, it's my understanding that long - term use can cause malabsorption issues. I have a very healthy diet and yet feel hungry much of the time, and I'm wondering if this has something to do with it. But what could be the solution? If I miss a day of lansoprazole, I get terrible gastric reflux. I'm 45 and consider myself fit and healthy, but feel so depleted much of the time. My platelet count has stayed relatively low, my most recent was 599 and it makes me wonder whether I even need to take the clopidogrel? I know some haematology teams won't prescribe anything until platelets or risk factors are higher... I'd be grateful for any thoughts on this 🙏🏼

[Mostew]

Sounds like you are struggling to keep up with your usual lifestyle at the moment Have you ever seen An MPN consultant.?

Hematologist s often arnt very knowledge about MPNs .

UK list

Info

[LRH77 in reply to Mostew]

Thank you, I wrote to Prof Claire Harrison's secretary a while back and was told my email would NOT be passed on as I am not a patient of hers... not sure how to achieve patient status, anyone got any tips?

[hall2 in reply to LRH77]

I think you need to ask your current haematologist for a referral.

[Smdg in reply to LRH77]

hi. I had the same response when I wrote to her with a question. You need a doctor or haematologist referral

[Mostew in reply to LRH77]

your dr. Should refer you for second opinion to specialist. You have a right to see one. I asked local Gp. He wrote immediately . I’m so lucky to have good a practice

[Mostew]

mpnforum.com/list-hem./

[hunter5582]

Proton Pump Inhibitors can interfere with metabolizing nutrients. This can lead to nutritional deficiencies. The best way to know whether this is the cae i to do the labs to check on your levels of various nutrients, either a compte panel or specific tests. good ones to check are Vit B/folate, Vit D, and magnesium. It is best not to make any assumptions abut what is going on. Rely on facts/reliable data.

Note that I have been on Nexium for a long time. It did causes magnesium deficiency. i also have measured Vit B and D deficiencies despite a healthy diet. I rake supplement for all of the above with doses titrated based on follow-up labs.

Mostew kames a good suggestion about consult with a MPN Specialist rather than a regular hematologist. Others in the NHS can give better guidance on how to get a referral for either a transfer or a second opinion from the list provided.

All the best

.

[SammieLou]

I have just come off omoprazole as I think it’s depleting my iron and making the fatigue unbearable … my husband is also in the same position as you, his dr has prescribed him an old fashioned anti acid

[Wyebird in reply to SammieLou]

I asked the local chemist which was the best to take. He said lansoprazole. Yet sometimes an indigestion tablet is extremely beneficial.

[Michali45]

I was also concerned about long term use of Lansoprazole because I already have osteopenia verging on osteoporosis. But when I mentioned my concern I was advised that it is more important to protect my stomach when on low doses aspirin than worrying about my bones! I guess it is just a matter of weighing up the advantages against the disadvantages.

[Scaredy_cat]

I've been on lansoprazole for over 25 years and haven't had any problems that im aware of

[ERei]

I don't really have an answer for you but wanted to share with you my experience. I have bad reflux and have been on lansoprazole twice per day for a couple of years. I have tried to wean off it but I get very bad nausea & am miserable without it. Recently my GI doc had me have a hydrogen breath test which was positive for Small intestinal bacterial overgrowth (SIBO). This is because I don't have the acid in my stomach to kill the bacteria due to lansoprazole (I did take pre & probiotics). As a result she put me on antibiotics for 10 days & a low FODMAP diet. Between foods I can't have due to reflux & the low FODMAP diet, there aren't too many foods left that I can have!

[LRH77 in reply to ERei]

Oh goodness, that sounds challenging. Thank you for your reply. Did the antibiotics sort out the SIBO?

[ERei in reply to LRH77]

They don't repeat the test so there is no way of knowing. I've been struggling with the diet so wouldn't be surprised if still have SIBO

[Janis12]

Hi, I was told that 'proton pump inhibitors' ie Lansoprazole and Omeprazole were never intended for long term use for this very reason. I was prescribed this drug when I went onto Hydroxy but I explained that I already had low bone density and was aware of the absorption issues with PPIs. As a consequence I was prescribed Famotidine a H2-receptor antagonist which does the same job. I think this is an important issue for post menopausal women who are at greater risk of developing osteoporosis. I wish the medical profession would look at us in a more holistic way and maybe that would help to 'join the dots up', I find it quite worrying. Good luck.

[Wyebird in reply to Janis12]

that’s interesting. I’ve been on lansoprazole for at least 12 years! Something to discuss at my GP review which is now due. Thank you

[LRH77 in reply to Janis12]

Exactly my thoughts, I'm perimenopausal and looking ahead, want to protect my bone health etc. I've not heard of Famotidine before, thank you for telling me about it, I shall certainly talk with my haematologist about it. Best wishes

[Janis12 in reply to LRH77]

Good luck, we have to champion our own cause.

[Lena70 in reply to Janis12]

I hated Lansoprazole. I just felt weird taking it. Switched to Famotidine and am quite happy with it. May I ask what dosage you take?

[Janis12 in reply to Lena70]

Hi, I take 20mg. I do not take the drug continuously just as and when I start to have trouble.

[Wyebird]

hi I’ve been on lansoprazole years for the exact same reasons. Yes I believe you are right I think it’s calcium it affects.

Like you I have no choice. If I miss that tablet I’m in pain.

Just eat lots of veg. I also take magnesium and a multi vitamin to compensate. It always discuss your thoughts with your heamo. Abefote you take anything.

[LRH77]

Thank you so much for all your interesting replies. I have a haematology review at the end of the month and will be asking lots of questions, I shall feed back what I find out. It's so helpful having other's experience and knowledge on this, I really appreciate it 🙏🏼

[jacquelineruth2000]

Hi I had problems with reflux in the summer last year and was prescribed lansoperazole but it caused chronic diahoerrea so my haematologist told me to stop both aspirin and lansoperazole for a while to let my symptoms settle. Then she re introduced the aspirin but I only take it every other day and the reflux has gone

[LRH77 in reply to jacquelineruth2000]

That sounds so sensible! I'm going to ask my haematologist what they think, I'm very keen to try without the lansoprazole. Can I ask what your platelet levels are like?

[jacquelineruth2000 in reply to LRH77]

Hi they’re running at 450 to 500, they have been higher in the past. I have PMF and I’m CALr 1 diagnosed 2007

[LRH77 in reply to jacquelineruth2000]

Thank you for your reply ☺️

[jacquelineruth2000]

Hope you feel better soon I know how debilitating it was for me 😊