Omeprazole

[Trek2]

I am now down to 1 mg on Prednisolone and all through my journey I have not had any relapses. Can I ask, If you are also down to 1 mg can you please let me know whether you are still taking Omeprazole and also Alendronic acid. I was wondering whether it was necessary now on a low dose of steroids?

[TheMoaningViolet]

Hi, I stopped AA when I reached 5.5mg, usually they say 5mg is a good time to consider stopping it. Once I stopped AA, I tapered Omeprazole as well. I had some good advice from the forum on what to do when I had a bit of heartburn following stopping Omeprazole; you could look at my post, but this comes up very often.

[Arflane97G]

I stopped taking omeprazole when I got down to around 2.5 mg with no problems 🙂

[borednow in reply to Arflane97G]

Have been down to 2mg for some time now but never thought of tapering/stopping the omeprazole! Will now try taking 1 x 20mg omeprazole on alternate days and see what happens. Under the current situation, this is probably the most exciting thing that's happened for quite some time ........... Many thanks for the thought.

[PMRpro Ambassador]

I've never taken either!! My bone density is nevertheless fine! I think most doctors would say at 1mg you don't need either. When you decide to stop the omeprazole remember to stop it gradually, first halve the dose, possibly halve it again depending what dose you were on. And then stop on perhaps alternate days. Otherwise you run the risk of rebound acid production which can be worse than you had before the PPI.

[Trek2 in reply to PMRpro]

Thank you for your advice. I am on 20 mg omeprazole tablet each day and they are capsules so I can’t cut them in half. Should I perhaps cut down by taking one every other day?

[PMRpro Ambassador in reply to Trek2]

You could try that - or the GP can give you a 10mg dose. I think you can get 10mg OTC as well.

[Trek2 in reply to PMRpro]

Thank you. I will check that out.

[ClarkB in reply to PMRpro]

I never took either, despite a low bone density. ‘Your Bones’ by Lara Pizzorno, is worth a read. She writes of the dangers of bisphosphonate drugs, which I found enlightening, but people obviously make their own decisions on them. I only wish there wasn’t such a long gap between dexa scans!

[Telian in reply to ClarkB]

And even longer wait for dexa’s because of covid!

[ClarkB in reply to Telian]

I have a hospital appointment after Christmas for an ultrasound kidney scan and am apprehensive about too many hospital appointments anyway. However I have no idea if my bone density has worsened or stayed the same since the last one!

[Telian in reply to ClarkB]

Good luck with the ultrasound.

I don’t like going to hospital either but they do look after you and over running clinics are virtually eliminated. I’m hoping similar continues when the virus is more contained.

My dexa’s due in January so will wait to see what happens re an appointment. Like you I won’t know if there’s been any deterioration without it.

I know some areas are starting to do regular appointments as opposed to urgents. I was told that by Dermatology on Tuesday as I’m waiting for allergy testing.

[PMRpro Ambassador in reply to ClarkB]

I pay 37 euros here for a dexascan - and can have one practically on demand and with a few days wait! I should have had one in March/April but we couldn't travel to the clinic 70km away at the time because of Covid. But in October I rang and got a double appointment (OH and me) just a few days later. I would love to know how a private clinic here can manage it and the NH/UK private clinics can't. I thought it was subsidised by the healthcare system here but apparently it isn't ...

[ClarkB in reply to PMRpro]

I am having a phone consultation with a doctor next week and will mention having one done privately if possible. I am actually having the call concerning blood pressure and cholesterol, and my reluctance to take the statins prescribed.( I wonder about having high cholesterol when I weigh 7+ stone and am vegetarian.) The problem with having several conditions and several doctors at my practice!

[PMRpro Ambassador in reply to ClarkB]

My experience with a statin and existing PMR was NOT pleasant. They are now red labelled on my notes ...

[ClarkB in reply to PMRpro]

I haven’t taken them and need to discuss with whichever doctor I get to speak to on phone consultation. It’s so difficult when there’s no continuity and they only have time to read recent notes. Half the time I don’t really understand or remember what they’ve said. I know the last one told me that I had a 23% chance of a heart attack or stroke in the next ten years, but it was to be my decision whether to go on statins. To think I had enough to concentrate on with other medical issues I never gave this a thought! I am currently only on low dose steroids, but I was told I should be off them altogether and blood pressure medication.

[PMRpro Ambassador in reply to ClarkB]

"I am currently only on low dose steroids, but I was told I should be off them altogether and blood pressure medication."

Why?

[ClarkB in reply to PMRpro]

My wording! It should have read that ‘I am currently only on low dose steroids , but I was told I should be off them altogether by now. I’m also on medication for high blood pressure.’ I think my brain was addled from writing too many notes inside Christmas cards!

[PMRpro Ambassador in reply to ClarkB]

Someone obviously doesn't know that PMR and pred go together as long as PMR stipulates - not the doctor or the testbook! 40% of PMR patients still require a low dose of pred after 10 years although it is not possible to say whether it is due to the PMR or lack of return of normal adrenal function.

[ClarkB in reply to PMRpro]

I still don’t know if it’s PMR that’s causing all my aches and pains, etc or my Osteoporosis or even arthritis. I have a friend who says she has lots of pains all over but she thinks hers is arthritis. The stabby or dull pressure headaches, well I don’t know if they’re connected or not. Internal problems I link with diverticulitis. I know that when I was on a much higher dose I had made notes in my diary of similar feelings. I am not in touch with a rheumatologist as I saw him privately when he diagnosed PMR but since then just had prescriptions from the GP.

[Telian in reply to PMRpro]

So civilised!

[keeptalking]

I stopped taking Omeprazole at about 5 mgs. I asked my rheumatologist if I still needed it and he asked me why I was taking it in the first place! Told to stop it and just take for short periods if I need it. I never have. Can’t comment on AA as I had to stop it after two weeks. Lucky you to be down to 1 mg.

[Maisiek]

At my last telephone consultation with Prof Dasgupta he said as a “prize” when I got to 5mg I could stop the AAcid. Now I’m wondering about Omeprazole as well? Thanks Pros for your advice.

[Kendrew]

I get so bewildered at times!! I'm under Prof Dasgupta also, as some of you know, and for quite some time I was on just 2.5mg, and at no point did he suggest to me that I might be able to consider coming off Alendronic Acid!......not even the mention of another Dexa scan to check on things! Several times now I've heard of specific regimes he likes to operate when treating PMR, but this has not been the case with me! (Eg: he likes to keep people on 3mg for a long time.) With myself, his tapering regime didn't even include 3mg!.....it went from 5mg to 2.5mg! Maybe I wouldn't have had a flare if I'd been advised differently by him? (I'm much wiser now following advice from here!!!)

I'm confused why he doesn't seem to be advising me with his normal protocols. Makes me feel like I'm just a 'guinea-pig for trying out new regimes!)

[Telian in reply to Kendrew]

Ask him! He was my Rheumie for over 6 years before I moved. I always had a good tête-à-tête with him about my meds.

[PMRpro Ambassador in reply to Kendrew]

Are you on enteric coated pred?

[Kendrew in reply to PMRpro]

Yes I am and have been the whole time.

[PMRpro Ambassador in reply to Kendrew]

Sounds as if he doesn't realise there is 1mg enteric coated pred. If you have 1mg tablets you can reduce down to 2mg in 1/2mg steps with no problems at all. He may have been looking for a way to do something he didn't need to do. And - as any of us would have told him - those swings of dose are sometimes really not a good idea in practice.

[Kendrew in reply to PMRpro]

Maybe he was. He was also very unhappy though that I'd had to increase steroids after returning to work and initially told me he'd leave me "to get on with it then"! (Managing my own dosages) Rather petulant I thought and not particularly helpful. Certainly not representative of "a good tete a tete"! Hey ho.

[PMRpro Ambassador in reply to Kendrew]

Yes - I'd concur with that adjective ... Almost everyone would need more pred to be able to work instead of sit at home. I couldn't have even dreamed to doing the job you do!I have other suspicions ...

[Kendrew in reply to PMRpro]

Other suspicions as in?........

[Telian in reply to Kendrew]

Not the first time I’ve heard that sort of response. It is hard when you’re working. Why don’t the doctors get that?

Best wishes

[Kendrew]

I definitely will......now this pattern of differences is emerging. Unlike with yourself though, he's not seemed willing to negotiate on different meds options and even seemed quite annoyed with me when I refused to go back on amitriptyline (to help me sleep apparently.....even though I told him several times I sleep ok!) Anyway, things could be a lot worse so it's all good. Thankyou for your response.

[GerriMc]

I’m at 1mg as well. I stopped taking Omeprazole early on as I never suffered from reflux. My rheumy said it was not necessary if I didn’t have that problem. I stopped taking the once-a-week calcium (I think it was AA) as I was convinced it was making my teeth loose. Rheumy would prefer me to take it but I don’t.