PPIs?

[Miserere]

Just wondering how many are taking a PPI if they are taking Pred and alendronic acid? I have not taken any Omeprazole so far and my stomach has been fine but for the first time last night I had painful, burning reflux and I can still feel the after effects today so am not eating very much. This is the first sign of any upset but it has made me think about it.

[SheffieldJane]

This has always put me off PPIs over the 8 years I have been on Pred. I successfully took Pred for years lining my stomach with thick, live, Greek yoghurt. Following a year on Actemra/ Tocilizumab for GCA, I developed Diverticula Disease and a small Hiatus hernia. I had Colonoscopies, Endoscopies and camera endoscopies and this was found. The treatment is Omeprazole and when that caused oral thrush, I was put on Lansoprazole. So I didn’t achieve much by avoiding it for 8 years. My symptoms are low, abdominal pain on the right side and an erratic bowel function. IBS has been mooted.

I expect my GP would change you to another PPI. Had you been trying to come off them ?I know this can cause a surge in the original symptoms unless done very carefully. This needs some further investigation in my view.

I have no experience of Aldenronic Acid and what it brings to the party ( I side stepped that too) due to the scary side effects and a good DEXA scan. This needs to be unpicked unless it was a dosing error.

[Miserere in reply to SheffieldJane]

The practice nurse said he would prescribe Omeprazole purely because I was taking Pred and Alendronic acid - no other reason. I have never taken it and have not experienced any digestive problems before. I actually have osteopenia, not osteoporosis so wonder if I really need the AA. I always ensure that I eat before taking Pred - AA has to be taken on an empty stomach. I shall nurse it with bone broth today and see how it goes - just feeling completely off it at the moment. Thanks for your response.

[SheffieldJane in reply to Miserere]

Heron wrote a really considered piece on how to improve bone density naturally. I wonder if it had been preserved in FAQs. ? This was with diet and weight bearing exercise. My bone health has deteriorated a little over the years and I have, in the past, experienced considerable pressure to take AA. It genuinely frightens me. A very good DEXA scan result a few years back got them to leave me alone. These decisions we make, who knows?

[Miserere in reply to SheffieldJane]

Thanks, I'll search for the piece.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Here -with a load more info to boot-

healthunlocked.com/pmrgcauk...

[Miserere in reply to DorsetLady]

I like Ken Berry - although he's carnivore now I think

[Miserere in reply to DorsetLady]

Thanks DL. I've just had a small amount of corned beef (the only other thing I've had is bone broth) and my stomach is distended with pain under the sternum and a lesser discomfort through the shoulders at the back. I really cannot think what has caused this. I've been fine until yesterday and can't think of anything out of the usual. I'll have to sleep sitting up, I think. Just wish I could think of a cause. I'll see if I've any Milk of Magnesia or something. Sorry, just baffled.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Yes it has

[Miserere in reply to DorsetLady]

Thank you - I just found this and it sounds good sense. Once I have a working knee I can get moving! In the meantime I can be careful with diet and take supplements.

[Miserere in reply to SheffieldJane]

I'm really sorry to hear about your diverticular disease and hiatus hernia - that's no fun at all. Thanks for letting me know about the links - I've read through a good few of them now - very helpful!

[SheffieldJane in reply to Miserere]

Thank you !

In later life most of us show signs of diverticulosis during an colonoscopy and it gives no trouble. The doctors didn’t seem bothered about the hiatus hernia- it’s very small. It is a nuisance and Lansoprazole seems to help. I am more wary of drug side effects than the disease these days.

[Missus835 in reply to Miserere]

Take Rabeprazole to protect my stomach 2x per day. It was originally prescribed years ago for GERD. One of the side effects of long-term use is brittle bones. I have been on Pred for not quite 2 years. I now have osteoporosis and just had surgery for two fractured vertebrae and have many small fractures in my spine. I could not tolerate AA but I'm scheduled for a Zolendronate infusion in a couple of weeks. It's a damned if you do or don't situation. I'm terrified of the infusion. BTW I do take 4000 mg D3 and also K2, as well as calcium daily and have all along this journey. I hope you get sorted. xx

[Miserere in reply to Missus835]

Thank you, Missus835. I do hope the infusion goes well. Damned if you do and damned if you don't is about right, isn't it? That's why I try not to add to the medication load - you never know what all the effects are. I shall ask for coated pred; at the moment the GP only prescribes 2.5mg as coated. I know we do need the Pred.

I take the same as you - D3 and K2 - I also take fish oil and magnesium as well as CoQ10 and Vitamin C. I think that's enough to be going on with.

Good luck with the infusion. xx

[Missus835 in reply to Miserere]

I too have avoided some of the medications, mainly because the side effects have affected me. Pharmacist recommended stopping, but less than on the ball rheumy does not read the emails or faxes sent to her. Thank goodness I now have a Nurse Practitioner and awaiting a call from my soon-to-be GP. On the list since end of 2021.

[piglette]

I have the coated version of pred, so just take a piece of hard cheese with the tablets.

[Miserere in reply to piglette]

For some reason my GP only prescribes 2.5mg in coated Pred - I will push for coated next time.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

It’s worth a try, but just aware some health authorities have instructed GPs to prescribe plain uncoated ones only..based on costs. Most GR/EC tablets are more expensive, apart from 2.5mg for some reason….so you might be in luck

[Miserere in reply to DorsetLady]

Now I am on 6mg I could use 2 x 2.5 and 1x 1mg I suppose. Just to let you know the slippery elm powder seems to be soothing things nicely - I had forgotten all about it as I've not used it for a long time; now I shall order some more.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Good -whatever works -stick with 😊

[piglette in reply to Miserere]

There has been some shortages of 1mg tablets, but they should be around.

[PMRpro Ambassador]

I have never taken either a PPI or alendronic acid - I have osteopenia but it was nowhere near osteoporosis, even after 12 years of pred. Maybe time to have another look!!

Mt rheumy doesn't make a song and dance about a PPI for pred - just if I need to take a lot of an NSAID for other reasons/

[Miserere in reply to PMRpro]

Thanks, PMRpro, that's encouraging. The fewer medications the better for me.

[Greensleeves]

I had several awful experiences of feeling as though I was having a heart attack.

It was silent acid reflux, gastritis was picked up by an Endoscopy and I had my gallbladder removed for pancreatitis and a few small stones in 2016 . I’d been very careful, always took my morning pred with breakfast.

I’ve never taken the AA , I remembered my uncle’s awful nausea Fridays when he took his and I’ve had dental implants thus need good jaw bone strength.

My bones are okay after 11 years. I take calcium and vitamin D and K2.

I do however take Omeprazole , it’s very difficult to stop it or even taper down.

Even if I try 10mg or miss a days dose , my stomach bloats up and I feel wretched. It’s really taken a battering . I had to see a colorectal surgeon this year, it’s been horrendous whilst dealing with grief , being placed in the 2 week urgent referral process. My stomach has been awful with one thing and another.

It’s a nuisance, you start one medication and need another for side effects . I’m determined I won’t add steroid sparers into the mix too .

I’m taking gastric resistant pred , but still need the PPI. I’ll tackle it again when better.

I hope you can get an Endoscopy if it doesn’t settle, or ask for coated Pred . Often Gaviscon or Famatodine can help if it’s picked up quickly.

Take care and do eat bland foods to soak up the acid . x

[Miserere in reply to Greensleeves]

Oh, gosh, what a journey you are having! I do hope things start to improve for you.

Last night I suddenly remembered slippery elm powder and managed to find some in the cupboard. I haven't used it for years but I'm glad to say it soothed things very well as I expected to have to sleep in an upright position. However, I shall take more today and gently introduce food. Just a very sudden instance and I hope it will settle.

I take the weekly dose of AA and I haven't yet taken Omeprazole but you are not the only one that says they are hard to stop taking once you are on them, so I shall try to do without.

Thanks for your respones.

[Greensleeves in reply to Miserere]

I forgot about slippery elm Miserere , I take that too if I feel any discomfort in the evening. It’s wonderful, I do believe these natural remedies are wonderful. It coats the oesophagus beautifully.

I hope things settle and you don’t need PPI’s or at least you could change to Enteric. Coated .

Take care x

[Bcol]

I've been been on Omeprazole for a few years now with no discernable or obvious problems, but as I'm now down to 1mg I've started to try and wean myself off, will take a few weeks but will see how it goes.

[Miserere in reply to Bcol]

I hope you manage it successfully, Bcol. I found some slippery elm in the cupboard so I am relying on that at the moment - it does seem to have soothed things. Always worth a try.

[Bcol in reply to Miserere]

I always take my Pred early with some Greek yogurt which seems to work well.

[PMRnewbie2017]

If you switch to e/c Pred you may have to alter the time of day you take your tablets. They take longer to get into the bloodstream than plain uncoated ones. This isn't a problem but just be aware of that.

[Miserere in reply to PMRnewbie2017]

Thanks - I'd not thought about that!