Bone advice

[Rabbit090]

I was hoping to get a little validation from the experts here after a blood test showed Vitamin D deficiency.

I pressed my GP to check my vitamin D levels as well as any other nutrients she could check due to concerns that I have over my 40mg omeprazole prescription + prednisolone (40mg today moving to 35mg next week and down from there) combined with the fact that I’d been taking 20mg omeprazole for a good 7 years due to a hiatal hernia. I’ve also been suffering from pretty extreme cramps in my hands over the last few days (lasting less than a minute but weird and painful).

Bloods showed Vitamin D at <25 but likewise, phosphate, calcium, and ALP all show significant drops from the tests I had just before I started Pred and this leads me to believe my vitamin D deficiency is directly related to Pred and less likely the long term omeprazole (though it could be a factor). I’m also on 2x AdCal D+ per day

Doctors being doctors, they’ve taken a knee jerk approach and ordered the DEXA (yay), high dose VitD (yay) but also some sort of Bisphosphonate (boo?). My suggestion is going to be this:

1. Start VitD now

2. Reduce omeprazole back to 20mg and see if I can wean myself off with my new, better diet

3. Wait for the results of the DEXA before considering bisphosphonates

4. Ask if Magnesium supplements are a good idea (I’m also taking both lisinopril and Nifedipine due to HBP and arm ischemia.

5. Eat more cheese.

Thoughts?

[SheffieldJane]

I think your plan is very sound and thought through.

[SnazzyD]

Yes, corticosteroids can affect your vitamin D. I suspect it is individual; I was found to be low just before diagnosis and Pred but was fine during Pred after loading doses, on a 1000iu. Since stopping Pred 4.5 years ago, I drop down if I don’t reliably take 2000iu daily. No rhyme or reason.

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

[PMRpro Ambassador]

Omeprazole is unlikely to have affected your vit D level as we get next to none from diet (under 10% of the RDA). That's why supplements are good.

is the ALP in normal range or low? It is often raised in PMR - something a lot of doctors don't know.

The hand cramps could be due to low calcium OR low magnesium - they have given you calcium and vit D supplements but you might need more. I'd get some magnesium too - hand/foot baths with Epsom salts can be useful, you can also get sprays and oils for topical use.

How does the arm ischaemia manifest? Have they identified a cause?

But all sounds a plan! Good place to start at least.

[Rabbit090 in reply to PMRpro]

I was thinking that the dependencies D has on calcium, magnesium and potassium but also I found a study that found 100% of its long term PPI users had D deficiencies vs 30% in the control group. I didn’t read why

Anyway, I have Takayasu’s Arteritis which I think my consultant thinks of as a sort of continuation of GCA but of the Aorta and its major branches. The ischemia is due to inflammation basically cutting off blood supply through the brachial artery which manifested as intermittent claudication of my left arm which is what set off the diagnoses in the first place. So I’ve been having cyclophosphamide infusion due to the severity. Yay.

ALP is normal but just barely and took an obvious jump when I started the Pred.

[PMRpro Ambassador in reply to Rabbit090]

Ah right - that was what I was thinking and concerned it hadn't been linked - should probably have taken the time to look at your past posts but I was in a hurry. Mea culpa!!

I don't know about the vit D - yes, that is what ai tells you and there IS a correlation but as we know, correlation is not causation and we get so little in diet in the UK (the USA fortifies foods but it isn't done in Europe) that I can't see how it will make a massive difference. Though over years, I suppose even what little there is in diet mounts up.

And yes - pred increases ALP for a time when it is started.

[Rabbit090 in reply to PMRpro]

Sorry. When I said ALP jumped, I meant it dropped (like a jump down 😁 ). Phosphate and calcium dropped significantly from the blood tests I had the day before I started Pred to now - only a month later. They never checked my Vitamin D until I asked for it. I’ve been having yearly blood tests for the last 15 years for high blood pressure.

[Sophiestree]

Pre diagnosis years ago it was found my VitD was very low and I was often prescribed the very high doses. I now take 4000iU a day and have done for about 15 years and it is the middle of the range. You should also take K2 with the VitD . I would wait for the dexa results before taking anything so you have a base of what you are dealing with. Can't help with the Omeprazole as I was prescribed it from the start but never took it as I just made sure I ate really well beforehand and I seem to be ok after 4 1/2 years.

[Rabbit090 in reply to Sophiestree]

Thanks very much! I’ll be sure to ask about K2 as well. I’m on so many things right now I’m incredibly wary about what does or doesn’t interfere. I do want to take magnesium but I’m concerned about interaction with the vasodilation medicine.

I have decided to cut the omeprazole back to 20mg though. I suffered a lot with GERD from the hernia previously but that was when I was loose and fancy free with my diet! No more G&T for me now so maybe I won’t need it at all.

[Sophiestree in reply to Rabbit090]

No G&T... that's sad! I don't think they would prescribe the K2, I think most of us buy it as a supplement. I buy my Vit D with K2 as one capsule.

I got an ulcer in my 20s from taking Aspirin for flu on an empty stomach so have had issues on and off for years. But I find the Omeprazole gave me other issues and as I have a fair amount of stomach issues regardless I didn't even start them, although the GPs are not too impressed with me.

[Groggrim in reply to Sophiestree]

Hi, I have vit D with K2 drops, 2 drops in a teaspoonful of water once a day (I tend to choke on tablets/capsules.

[PMRpro Ambassador in reply to Rabbit090]

You are unlikely to get much info about K2 from your medical team - it is regarded by many as a supplement and woo.

[Rabbit090 in reply to PMRpro]

Yeah, they do seem dead set against supplements in general but in a way I can see why - it seems somewhat unregulated and people can get bamboozled.

Was talking with a friend yesterday who is a yoga instructor and doesn’t really do supplements but apparently started taking B12 at some stage only to find through a blood test that he was… let’s say, overly replete.

[PMRpro Ambassador in reply to Rabbit090]

You really don't normally need any supplements unless there is a good reason - like being on pred for a lot of things. B12 is one to ask your GP to check BEFORE taking supplements because with a decent diet it is covered - except for vegans. They NEED Marmite ... Or a supplement. Too much in the way of B vits can contribute to neuropathy - I posted about it a few months ago.

Almost everything except vit D is covered by a good diet - spend your money there! But K2 is only found in foods that aren't that common in the west these days, fermented foods. Sauerkraut and certain cheeses have it but the claim is that those cheeses are made from milk from cows fed on a less good diet so less of the required nutrients present. Kimchi and natto are good - and far more easily available these days. Then you need to fit them into YOUR diet.

[Rabbit090 in reply to PMRpro]

They checked B12 and it’s all good. My (new) diet is good, I think, but trying to stay in a slight calorie deficit to get rid of the 20 or so extra pounds that aren’t doing me any favours, while also eating more cheese is a challenge so I’ll accept the D and calcium while I get through these first 3 months and see where I end up. The hand cramps do concern me though as they aren’t entirely explained by the stenosis since I have that only on the left side and the right hand cramps just as badly.

[PMRpro Ambassador in reply to Rabbit090]

Ignore calories - you get far better results with reducing carbs when on pred. And cheese fits Brilliantly there, - or don't you like it? The bilateral cramps when on pred - most likely a magnesium deficit and you don't have to eat it, use topical options or arm baths with Epsom salts.

[Rabbit090 in reply to PMRpro]

I eat almost no carbs actually or sugar. I’m OK with cheese but it gets a bit cloying to be honest so I eat it rarely and prefer soft cheeses like Brie and mozzarella. Yoghurt is OK but in moderation. So far portion control (using calories as my guide) is the only way I’ve managed to lose weight since menopause decided I should no longer look like my skinny old self.

Other challenge is I’m also not keen on any of the veg that’s calcium rich - seems to be most of the bitter stuff like kale.

That said, having cut out added salt, I’m getting used to the taste of foods I used to dislike so there may still be hope.

For the cramping, I’m not entirely sure if it’s muscular or nerve-related at this stage or whether it’s Pred, magnesium or a cruel coincidence, which is why I had hoped there was some sort of test for deficiency. Topical sounds safer with the Nifedipine though so I’ll look into that.

[PMRpro Ambassador in reply to Rabbit090]

Strange that about salt - I haven't used salt for the best part of 40 years - when I got my first microwave you were advised to salt veggies after cooking and I always forgot! There is almost no veg I won't eat and I really enjoy the flavour without - eating out poses a problem now, restaurants use far too much salt!!

Have you tried broccoli roasted in the oven - completely changes the taste? I make individual "cauliflower" cheeses using broccoli and the sauce is an egg beaten into a single portion tub of Greek yoghurt and whatever cheese - loads of calcium there with very little carb.

I can almost live on cheese! Love a chunk of parmesan with an apple - though I suppose with an orange would be better!!

[Rabbit090 in reply to PMRpro]

I loved salty things but having now stopped, I find I don’t really miss it! I used to love cantaloupe with salt, believe it or not.

Broccoli is good. It’s quite sweet unlike kale and the like. It’s a shame that the UK is surprisingly limited in the types of green veg offered. We tend towards salad leaves, broccoli, sweet cabbage, spinach and sometimes spring greens (but I need to douse the latter with vinegar to stand it).

[PMRpro Ambassador in reply to Rabbit090]

I know - I look at the fresh produce here and think how I will miss it, especially the giant twisted bell peppers. And possible to buy most things without a load of plastic! Except - and please can someone explain why - organic cucumbers come in plastic coats while non-organic don't!!!!

[Rabbit090 in reply to PMRpro]

Ha! Wrapping cucumbers is so odd to me!

I lived near Bologna for a few years in the early 90s but for the life of me can’t recall what I bought in the way of vegetables. I think we lived on meat and pasta for the most part.

[PMRpro Ambassador in reply to Rabbit090]

My experience of "Italy", i.e south of me, is they use a LOT Of veggies!

[Rabbit090 in reply to PMRpro]

It was 30 years ago for me so I’m struggling to recall. Bologna is pretty much the carb capital of Italy I suspect! Polenta, beans, risotto, bread, pasta, pastries… the only veg that sticks in my mind is the radicchio risotto!

[PMRpro Ambassador in reply to Rabbit090]

I think most places are similar - just right down south it is more veg and less meat, too expensive so you get Cucina Povera which is very veg orientated and the true Mediterranean diet with lots of olive oil. Carbs abounded up here - one traditional home meal is Mus, basically a milk and flour sauce that is slightly burnt onto the bottom of the big metal pan which is put on the table and everyone digs in with their spoon! Done well, it is lovely,

[Rabbit090 in reply to PMRpro]

That honestly sounds delicious. Harks of bread sauce for some reason, which is something I discovered very late in life but love it. I haven’t entirely given it up as we rotate Sunday roasts (farming family so it’s a given) and a roast chicken without bread sauce just isn’t right.

[PMRpro Ambassador in reply to Rabbit090]

A local posh-ish restaurant in the village, very traditional South Tirol food, makes it in tiny pans to bring to the table while you are waiting for your meal to be served.

[Tribie in reply to PMRpro]

Love the sound of your cheese sauce, do you cook it in a saucepan first or just pour it over the veg and put it all in the oven? I love it on any vegetable, and the more cheese the better!

[PMRpro Ambassador in reply to Tribie]

No, just beat an egg into the yoghurt, with care you can do it in the tub to save washing up, and pour it over the veg in a dish, I use an individual lasagne dish, a bit of cheese over the top and into the oven, 160C or so until it sets and the cheese is browned. I mean, a "BIT" of cheese is relative!! I use the same technique with Greek yog or cream to make a quiche-like pie in a silicon mould, no pastry needed.

[Tribie in reply to PMRpro]

Sounds great, will definitely try this 🙂🙂

[Francesbarbara in reply to PMRpro]

I asked my GP for Vit K2 and he said that he was not allowed to prescribe it. I have read much about Vit k2 being useful for directing calcium away from blood and into bones but the GP knew nothing about that. I have had slightly raised calcium for over 10 years but it never 'spikes' but I do get it tested regularly. He raised no objection to me buying it myself but I suppose I'm unhappy if NICE are not allowing it. Perhaps they see all Supplements as unneeded.

[PMRpro Ambassador in reply to Francesbarbara]

In the UK, nothing supplemental will be approved without proper documented backing. That isn't available for K2. But it isn't necessarily the case that NICE approves something and it will be prescribed at the expense of the NHS. It is the same in every country - the Italian state healthcare system won't reimburse anything you can buy OTC at the pharmacy, There are some things that you need a prescription for but you still have to pay for them yourself. Doesn't mean paracetamol or ibuprofen are bad used properly.

And vice versa - here in Italy I get Actemra paid for, same in most other EU countries. But NICE has only approved it for inflammatory arthritis and GCA for a limited time so I might not be able to get it in the UK.

[Francesbarbara in reply to PMRpro]

Thanks you . As always, a straightforward explanation.

[Bramble2000]

Hi, my Vit D is so low it’s almost unreadable. Has been like this on and off for many years and I’ve been on Pantoprazole for decades, can’t get off it. Most people have low vit D in the UK during the winter. You could try getting your bare arms out in the sun for 20 minutes per day. My GP told me that’s usually enough for healthy people. Might help. I’m not going to take the drugs they’ve thrown at me until I’ve had the DEXA scan.

[Rabbit090 in reply to Bramble2000]

Yeah, could be part of it but my GP and consultant were sufficiently alarmed that they decided to go all in with the high dose D and bisphosphanate. It’s a shame I don’t have any previous levels to compare to but you live and learn.

[PMRpro Ambassador in reply to Bramble2000]

"You could try getting your bare arms out in the sun for 20 minutes per day. My GP told me that’s usually enough for healthy people."

Possibly, For a 20 year old. Between May and September around midday to 3pm in the south of England. But by 60 we make about a quarter of the vit D in skin that we did at 20. And we are mostly on pred, it depletes vit D. And are encourage to avoid the sun in those hours or slather a ton of Factor 30 on before emerging. Even make-up often has Factor 15 protection. All of them move the goalposts - sometimes out of sight.

[Rabbit090 in reply to PMRpro]

I’m also doing cyclophosphamide which has a propensity to non melanoma skin cancer as a side effect so there’s that joy as well.

[Grammy80]

Sounds like a plan to me. I've been on pred for 5+ years now and after presenting with low Vit D, I've been taking 50mcg, 2000UT, twice a day now for some time. (States) When I had my bone scan last year, very little osteoporosis mostly osteopenia. I also take Pantaprozole and Sulcrafate for my long standing stomach issues.

In the Midwest it would be almost impossible to maintain healthy Vit D levels but I feel almost impossible given all the steroids. My best to you...💞

[Rabbit090 in reply to Grammy80]

Thank you! That’s good to hear about the osteoporosis at least. My dentist said my bone density was good when I last saw him but I’m not sure how he’d know that from an xray. Perhaps he just meant nothing looked like it was ready to fall out!

[PMRpro Ambassador in reply to Rabbit090]

To some extent he probably can but you can't get a reliable result from an x-ray - and it is disputed.

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

It might pick up osteoporosis - but probably not the smaller changes in BMD.

[Rabbit090 in reply to PMRpro]

Yeah, my assumption was that why would you need a dedicated dual x-ray scanner if a normal x-ray worked.

[PMRpro Ambassador in reply to Rabbit090]

Indeed

[Grammy80]

Even nothing falling out is good news!!! We take it when we can get it. (He can see the bone density of your upper and lower arch when x-raying your teeth.) So! You are in good shape.💞

[PMRBarbie]

I think your plan is very sensible.

I had Vit D deficiency pre diagnosis and have been on Omeprazole 40 mg for years until my new GP almost fainted and cut it down to 20 mg immediately as I had no critical clinical reason to be on that dose. I did some more research and now take slippery elm tablets to coat the stomach and heal the gut. Had the usual rebound with Omeprazole withdrawal but I only have Omeprazole very rarely as the slippery elm helps immensely.

My dexa showed good results which surprised me...but I do love 🧀 🧀 🧀 🧀

[Rabbit090 in reply to PMRBarbie]

Slippery elm? I shall have to investigate!

[PMRBarbie in reply to Rabbit090]

Puts a slimey film on your gastric tract and has a healing property. Some of the gastro clinicians I worked with sait had benefits. Also recommended for dogs with sensitive stomachs. Just remember going off Omeprazole will give you a rebound effect until your stomach juices return. It does suppress some of the normal function.

Hernia - small meals, less wheat products helped.

[Rabbit090 in reply to PMRBarbie]

Yeah. I struggled when I missed a dose but didn’t realise there was a rebound component at that point. Even had a little indigestion last night having cut my dose from 40 Back to 20 on Friday.

Thank you!

[PMRBarbie in reply to Rabbit090]

Yogurt😀