2 Yrs without Omeprazole- Now they want me start ... - PMRGCAuk

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2 Yrs without Omeprazole- Now they want me start taking again!

DavidMF profile image
51 Replies

I've had PMR for 7 years, during the last year I've got down to 4mgs Pred a day, split early morning and evening ( 2 + 2)

My electronic request for tablets has been approved, as per normal.

This morning I get a text from a prescription clerk, saying they've added Omeprazole to the request as taking Steroids long term can damage the stomach lining, especially as I'm taking blood thinning tablets. (This is new)

I stopped taking Omeprazole 2 years ago. After discussions.

I tried writing back, but they don't accept texts. I've now got to request a discussion with a Doctor.

Q: should I need Omeprazole at this low dosage ? I thought I came off it because it also had side effects, which were worse.

Currently I'm not suffering, but who knows!

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DavidMF
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51 Replies
SheffieldJane profile image
SheffieldJane

I am not medically trained but if I was fairly (digestive) symptom free and on a low dose, I would be inclined to take my 2 mgs of Pred with greek yoghurt or similar and take Gaviscon or similar for the occasional heartburn. As you know Omeprazole and similar are not without their own complications and side effects. You probably stopped them for these reasons. To be honest I would be reluctant to take up the GP’s time for this, unless I was worried about something related. I imagine the nurse is just doing as she was trained to do regarding preventative medicines. Just my opinion. I gave Omeprazole up years ago.

DavidMF profile image
DavidMF in reply to SheffieldJane

My thoughts exactly, thanks for replying.

Kendrew profile image
Kendrew

Hi DavidMF. I agree completely with SJ....when I was prescribed pred 2½yrs ago the rheumatologist wanted me on omeprazole too. I said no thankyou but I'd reconsider if I started to experience symptoms that required omeprazole. So far I've not required them and so I continue to take gastro-resistant tablets after my breakfast (which usually includes some natural live yogurt too) This seems to be working for me. On the rare occasion I do experience indigestion or heartburn, I find a Gaviscon tablet sorts it out. This is usually only required though if I've 'over indulged' or eaten food that's very rich or very spicy.Hope this helps you with your decision.

PMRpro profile image
PMRproAmbassador

I've never taken it. In 12 years and at far higher doses.

I'll bet they have a pharmacist reviewing scripts - some chump on Sky News (a previous health minister I think, had never heard of him) was going on about how wonderful pharmacists are at dealing with prescriptions and how they were helping the GP practices. Given how often we've had patients being told to STOP pred because they have been on it too long somehow I am a tad sceptical as to their value.

DavidMF profile image
DavidMF in reply to PMRpro

PMRpro I looked up the person and it was a new Doctor to our practice, I've written to Admin, to ask what I should in regards to this action. It really should have been discussed and perhaps I could have changed her decision, before all this waste of time & effort. The new electronic system doesn't allow discussions with patients, far too time consuming, I presume. Might have been better to look at why I'd stopped the tablets, you never know my Doctor might have put a reason on file, but maybe not. Flu jabs this weekend, WhooPee.

PMRpro profile image
PMRproAmbassador in reply to DavidMF

The joys - you can always just be non-compliant and hand the tablets back to the pharmacist before leaving if dispensed and if not, just decline them.

DavidMF profile image
DavidMF in reply to PMRpro

That's not as easy as you might think.

Hildalew profile image
Hildalew in reply to DavidMF

I had a call from a pharmacist who said she had added Omeprazole for gastric problems. I said I had no gastric problems (I think I'd been on Pred for about 18 months at that time.) She said something about taking it to ensure that I didn't get those problems, so I just agreed. Collected the box with my Pred and put them in the medicine chest where they still lie, 18 months later. When I next needed to get Pred (on my repeat prescription) I just didn't tick the box that was needed to get more Omeprazole..I was asked about it again a few months ago by another pharmacist who, of course, saw that it had been prescribed. She expressed concern when I said I had never taken it - and told her that I relied on live yoghurt to protect my stomach and had never had any gastric problems in the two and a half years.

So, reluctantly she didn't include it in my next prescription.

Somewhere, clearly, there is a list that instructs them that they MUST prescribe an accompanying medication to deal with the stomach problems that 'always' accompany Pred. Both pharmacists were, I believe, genuinely concerned about what they believed would be the inevitable consequences of my not taking this medication.

Suffererc profile image
Suffererc in reply to Hildalew

A few months ago I told my GO that I was going to stop taking Lanzaparol and try yogurt instead. She was aghast and said it was foolish because it protected my stomach. Now, two weeks ago, she is saying you must try to do without Lanzaporole. She dropped the dose from 30 to 15. I decided myself that I would take the yogurt. They want to make their minds up but I think a pharmacist is advising now so change happens

Suffererc profile image
Suffererc in reply to PMRpro

Think the pharmacists are taking to much in. Why do we go to the Dr if they can prescribe without the Dr. Mistakes are being made.

piglette profile image
piglette

So much for GPs cutting down on the 10% excess meds they are currently prescribing.

DavidMF profile image
DavidMF in reply to piglette

I think it was a genuine decision, made by a newly qualified doctor, who thought it was a good idea. Unfortunately it was worth discussing with the patient before taking that step.

piglette profile image
piglette in reply to DavidMF

This is the problem. A friend has just been round who said that her doctor did not tell her she had cervical cancer. We got through a very good bottle of Sancerre while she told me about it.

PMRpro profile image
PMRproAmbassador in reply to piglette

Hope the bottle helped her a bit.

Not quite in the same league - but recently the palliative care unit stopped one of OH's diuretics without asking WHY he took two. If he doesn't his lungs get terribly soggy which REALLY doesn't encourage breathing well ...

123mossie profile image
123mossie in reply to PMRpro

I’d be incensed..

PMRpro profile image
PMRproAmbassador in reply to 123mossie

I was!!!

Iamfedup profile image
Iamfedup in reply to PMRpro

The receptionist at my surgery took it on herself to stop my Prednisone as she said I needed a review!!!!

DavidMF profile image
DavidMF in reply to Iamfedup

Against all medical advice, sounds like a poor set up, urgent talks with the senior manager.

PMRpro profile image
PMRproAmbassador in reply to Iamfedup

I hope you reported her - loudly.

Iamfedup profile image
Iamfedup in reply to PMRpro

I certainly did!

Viv54 profile image
Viv54 in reply to Iamfedup

Wow!! That's a first, how dare they !

in reply to piglette

My pharmacy keeps filling my script with everything on the repeat list rather than just what I ask for and it’s costly when you don’t need it. Prior to Covid GP would let me run out of HRT patches for example before supplying more, now I have four months supply in hand!

PMRpro profile image
PMRproAmbassador in reply to

Here I can check each item and say no thanks - or choose to pay the difference in cost for a generic to have a preferred brand. So nothing gets wasted. I am appalled at the penny pinching over whether the patients gets only the EXACT number of pred tablets they supposedly require to the next renewal - while unwanted stuff is handed out willy nilly by the pharmacist. Which, when I think about it, may have something to do with the fact they are paid a dispensing fee for each script and feel they have already earned it by the time you look at your bag of goodies and say you don't want the black licorice in the Allsorts ... So refuse to retain them

in reply to PMRpro

At least they are not dispensing dormice - yet

PMRpro profile image
PMRproAmbassador in reply to

Give them time ...

Suffererc profile image
Suffererc in reply to

Mine did that too.

piglette profile image
piglette in reply to

Have you mentioned it to your pharmacy and asked them why?

ChrisinNam profile image
ChrisinNam in reply to piglette

Only ten percent? Are you sure it isn't nearer fifty percent?

piglette profile image
piglette in reply to ChrisinNam

The press said 10% recently but I could believe it was more!!

Janstr profile image
Janstr

I’m in the same boat as you David, & was going to raise a post myself, as am totally confused by advice from different GPS.

I was on omeprazole until 2 years ago, when PMRpro suggested that I may not need it. I discussed this with my now retired GP who agreed I should come off it, & I had no problems for 18 months. I then started getting reflux & heartburn ( that gaviscon had little effect on) & went to my new GP, who was very anti-drug & suggested pro-biotics, rocket & yoghurt. I insisted on omeprazole as well as wanted to get rid of the problem, & as well as taking the drug followed the more natural approach suggested. The problem was resolved after about a month, & I stopped the omeprazole.

Now that GP has left the practice & I had my first appointment with another GP yesterday. She is insisting that I take omeprazole & says if I don’t there is a risk of stomach bleeds $ ulcers.

I am totally confused & really don’t know what I should do. I do occasionally have slight reflux. I always have my pred with food

PMRpro profile image
PMRproAmbassador in reply to Janstr

You seem to have dealt with it very well so far ...

Janstr profile image
Janstr in reply to PMRpro

Do you think stomach bleeds & ulcers are of concern when taking pred?

PMRpro profile image
PMRproAmbassador in reply to Janstr

For the majority of people, probably not if you are sensible about taking the pred with food and have a low threshold for wondering if something is happening. Tha vast majority of people don't get put on a PPI - certainly not here in northern Italy. I've been on pred for over 12 years and have a cast iron stomach as far as I know ;) I haven't been on plain white pred for most of that time though - enteric coated in the UK and a short period of methyl pred here but the adverse effects of that didn;t include gastric irritation. Since then I have been on Lodotra/Rayos which has a coating and must be taken within 3 hours of a main meal or with a substantial supper (taken at 10pm) so that when it releases 4 hours later it is still in the stomach and is no different from plain pred.

There ARE people who do have problems - hence my caveat of having a low reporting threshold.

Janstr profile image
Janstr in reply to PMRpro

Thankyou for your informative reply. Here in NZ we don’t have the enteric coated pred, just the plain white ones ( pink on higher doses). I’ll have to think about this for a bit.

Janstr profile image
Janstr in reply to PMRpro

You may be interested that I have just been speaking to a friend who has lupus & has been on pred for about 40 years & a maintenance dose of 5 mg for 25 years. She has just seen a gastro specialist re a hiatus hernia, & he didn’t suggest her going on omeprazole.

Sophiestree profile image
Sophiestree

That's really interesting as I never request it when I go online to reorder my drugs but this time it was in the bag. I saw it in the chemist and told them I didn't want them and to take them back as I know since Covid if you go home with them they can't accept the return even if the box has been untouched.

Christine2307 profile image
Christine2307

My Doctor said it was OK to come off Omeprozole which I did for 2 weeks but couldn't settle the reflux and heartburn with anything - so have gone back on them - when anyone came off them did you taper off them or just stop taking as I did - I take 20mg. I want to be off them but life is miserable without. I am thinking perhaps the sudden stop upset me

PMRpro profile image
PMRproAmbassador in reply to Christine2307

You will suffer if you just stop it - you must taper the dose over a few weeks to avoid the development of what is called rebound acid production and which can be worse than normal acid production. You should start with halving the dose for a time and then try missing doses until you get to taking very little before stopping, You can also get one of the H2 antagonists, famotidine or cimetidine sold as Pepcid and Tagamet, to use for a few weeks before stopping them since it is claimed they aren't associated with this rebound effect though it is disputed. Whatever you use - tapering off the dose is a good idea.

Christine2307 profile image
Christine2307 in reply to PMRpro

Thank you so much - this is what I thought but the Dr said it was ok to do it! I'll try again!

PMRpro profile image
PMRproAmbassador in reply to Christine2307

Bet he's never done it! And there IS a warning about discontnuing PPIs ...

Ronnie101 profile image
Ronnie101

Do you take gastro resistant pred? I may have missed that point, but my understanding is that gr pred has no effect on the stomach. In any event, I've had reflux for years, and have been on and off ppi's such as omeprazole without any reference to taking pred by the doctors.

In fact, they've encouraged me to use gaviscon or something like nizatidine, which has the same effect but not the side effects - but only when I have reflux symptoms.

PMRpro profile image
PMRproAmbassador in reply to Ronnie101

That's disputed - some doctors claim the gastric effect is from the level of pred in the blood so the systemic effect is the same. Your doctors have the right idea I think - long term PPIs aren't ideal either

S4ndy profile image
S4ndy

Hi David, I see we have both been around a while 🙂 I started taking pred in 2016 and I took a ppi to protect my tummy. About 2 years ago just before pandemic I came off them as they were causing me to have bad IBS. I did see a consultant and had lots of investigations but in the end it was concluded that it was my IBS being triggered by ppi's. I haven't gone back on a ppi. My GP keeps trying to put me back on one I know not why as both my Gastroenterologist and my Rheumatologist both said that it is not necessary! I am on 5mg of Pred long term now and use Peptac liquid or Rennies if I get indigestion. My IBS is now back under control thankfully.

USAGCA profile image
USAGCA

Hi David. The last that I heard is that there is no need for PPIs (omeprazole) while taking (low dose) prednisone unless you are also taking NSAIDS. You mentioned taking blood thinners, but those aren’t NSAIDs, unless you meant aspirin. Prednisone apparently impairs the stomach lining’s ability to heal. Just like when you cut yourself, it takes longer for your skin to heal. NSAIDs actually damage the stomach lining. Low dose prednisone without NSAIDs should not necessitate a PPI. The risk of bleeding should be average. However, IF you bleed, the situation would be worse due to the use of blood thinners.

Suffererc profile image
Suffererc

What will GPs do without prescriptions to dish out. Won't need them soon 😂😂😂😂😂😂😂 No f2f . Feet up on the desk

Jane424 profile image
Jane424

I find Pepcid works and it is a different type o drug. Good luck.

phebamom profile image
phebamom

PMr 20 years, GCA 10 plus. For the past two years my stomach was bleeding. Biopsy showed the culprit to be prednisone. I am on Actemra for GCA. Prednisone down to 5mg. If If I go above 5mg. stomach starts bleeding, I have been down this road for many years. I can not take Prilosec. Prilosec makes me feel awful; my joints ache, and I have a lot of bloating and issues with it. I took Pepcid AC and Gaviscon for years. They stopped working last year. My gastroenterologist has been begging me to take a PPI for years. I was in so much agony I started taking 15mg. of Prevacid each morning. My gastro was thrilled when I told her I was doing that. Here is the thing that most people don't understand about prednisone and their stomach. Prednisone does not just damage your stomach from physically being in your stomach, Prednisone damages your stomach by causing bio-chemical changes in the structure of your stomach wall. This damage happens over time. Think of it this way. You know how prednisone makes your skin very thin. I find this very annoying, especially my lower arms. they are a mass of ugly red bruises from bleeding from broken blood vessels right under the skin. That is because prednisone causes thinning of the skin, and damages blood vessel walls over time. the same thing it does to skin and blood vessels, it is doing to the lining of your stomach,

So, over time, and I can't stress this enough: Over Time!! prednisone will damage the lining of your stomach. Over time; it does not matter if you take your pills with yogurt or any other food you think will coat your stomach. the damage is being quietly done at a cellular level. A PPI or H2 blocker antacid is absolutely a good ideal. Consider it a gamble, or an insurance policy. I told my gastro that I was concerned that the PPIs can cause stomach cancer. She agreed they could. Then she listed all of the other problems they prevent. In my case, the most important one, bleeding from my stomach wall. Personally, since I have been on my low daily dose of Prevacid I have not looked back. For the first time in many years I am not in constant pain with my stomach. Oh, and I find no side-effects from a low dose of 15mg. I was on 80mg. per day of Pepcid Ac, and the side- effects were ghastly.

DavidMF profile image
DavidMF in reply to phebamom

phebamomMany thanks for taking the time to detail your information. It sounds like Doctors have been given new information about long term Steroids. I have written yesterday to our practice manager asking why this was done without discussion with me, the years I have worked with PMR might have been instructive to both of us. Rather than just treating me like child who has no right to question the actions of a Doctor. I'm looking forward to the reply, incidentally I took Omeprazole for 5 years.

phebamom profile image
phebamom in reply to DavidMF

5 years is a long time. It says on thee bottle not to take more than 2 weeks without consulting a physician. My longstanding chronic dyspepsia is so disabling, and the stomach bleeding so bad, I was left with no other choice. I find Prevacid easier to take than Prilosec, but more difficult to find. Here in the U.S., wal-mart is the only place that carries it in my area. From my 20 year experience the side-effects of prednisone are insidious and can be hard to see. Also, and I think very few doctors understand this; the PMR/GCA also damages our stomach. This is the article that finally defined and explained what I have been going through for 20 years:

jrheum.org/content/jrheum/4...

If so much damage is done, then having damage done to digestive system is no different.

Karendeena profile image
Karendeena

Hi DavidMF, I am on apixaban anticoagulants and was put on lansoprazole to protect my stomach whilst on prednisolone. After a few months it really started to mess with my bowels and stomach so they swapped me to omeprazole which unfortunately did exactly the same. I have been taken off these now and on 3mg pred. My doc is happy for me to take them with food and gaviscon when needed

DavidMF profile image
DavidMF in reply to Karendeena

Kerendeena

My second rheumatologist, at about year three/four advised that if I could get down to 5mgs or less I could stay on that for the rest of my like, without risk. Your doing great at 3mgs, it's more about how you are reacting to medicines, Apixaban, being twice a day, hopefully means it's not as strong as once a day medication.

I take half my Pred when I get up with yogurt and the second half after dinner. It works for me. All the best.

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