Now taking Alendronic Acid because of need to take Steroids. - Advice please?

[SomersetWife]

I was diagnosed with Osteoporosis back in 2007. I always managed my condition without Bisphosphonates, firstly when I was able to take HRT and some supplements, then, when HRT was no longer an option, with diet, exercise and supplements. I have just been diagnosed with Giant Cell Arteritis and am currently on a dose of 60 mg Prednisolone daily. On my GP's advice I swallowed my first ever Alendronic Acid tablet on Sunday - having sworn never to take Bisphosphonates! I am also taking two Thei-Cal D3 tablets daily, each tablet is 2500mg calcium carbonate and 22mcg of colecalciferol (thats equivalent to 100mg calcium and 880iu of Vit D3 per tablet). My concerns are:

1: That seems a very high dose of calcium in one tablet, taken at one time - let alone 2 tablets daily - I'm concerned about calcium deposits in my blood vessels.

2. I eat a diet rich in calcium and wasn't taking a calcium supplement before this happened. I was, however taking vitamin K2 MK-7 and a vitamin D3 supplement as well as a multivitamin and mineral.

My questions are:

1. Do you think that two tablets of thei-cal is too many

2. What supplementation regime would you advise for optimal calcium uptake by my bones

3. What are your thoughts on stopping the Alendronic Acid once my condition is under control and my Prednisolone dosage can be reduced or even stopped.

My T- Score has remained pretty constant, starting at -3.0 in 2007 and finishing at -3.3 in my last scan in 2018 - My Z-score at last scan was -1.8, Femoral neck left -0.3 and Total hip left 1.0 (Normal) - though I suspect that these figures will have become worse with inactivity due to lockdown and shielding (for my husband).

Many thanks - I'm feeling I'm on something of a roller-coaster that I would rather like to get off but have to see it through now!

[Hidden]

I would think that one calcichew is enough but I am not a doctor. I had been prescribed Bonvita but was slow to take it. So I have started it as was having falls and the fracture clinic told me it was important. Now it wasn't that I disagreed with it, I was on chemo and the idea of standing or sitting for an hour on an already delicate tummy didn't appeal to me.

[Met00]

I think 2500mg calcium carbonate provides 1000 mg ( not 100), in which case that does sound excessive. I've read that you can only absorb 500mg at a time. I looked up thei-cal D3 and it says it's used to treat low calcium and vitamin D, so it could be that there's a specific reason for prescribing such a high dose. It might be helpful to ask your GP receptionist to give you a print out of your most recent Vitamin D and calcium blood test results. If they haven't been tested, ask your GP to check them and then review the prescription in the light of the results.

[SomersetWife in reply to Met00]

I've just spoken to my Doctor and voiced my concerns. She has agreed that I can take just one tablet a day divided into two (so 500mg at lunch and at dinner). I'm glad that's sorted.

[Met00 in reply to SomersetWife]

That will halve your Vitamin D so will you top that up yourself? Unless there's a specific need for calcium supplement, it's the Vitamin D supplement we need for osteoporosis, with calcium from diet.

[SomersetWife in reply to Met00]

Yes, thank you, I should have mentioned that, good point. I have some D3 and K2 drops to top up with

[Met00 in reply to SomersetWife]

You shouldn't have needed to mention it, your GP should have been aware!

[SomersetWife in reply to Met00]

It’s difficult isn’t it? I do believe that wherever possible, we should endeavour to educate ourselves about our own medical condition(s) and become a sort of ‘expert patient’ - in the early days of my Osteoporosis, I went armed with my research, chapter and verse and negotiated my care plan with my (then) GP. I feel many GPS are not sufficiently up to speed with less common conditions and find this easier to accept because of the broad spectrum of conditions they see, than the attitude of some so-called ‘specialists’ who trot out out-dated mantras to their patients and it’s their way or nothing and they’re so bleeping patronising and condescending as well! (Rant over) - inevitably though, as you say, the point about the D3, should have been pointed out to me -and those who cannot for whatever reason, bring themselves up to speed, could ‘fall through the cracks’

[Met00 in reply to SomersetWife]

My approach is very similar to yours, having had a GP, when I was first diagnosed, who apparently couldn't even read the DEXA report, which said she needed to discuss the options with me as medication wasn't definitely needed. Her response was to put a copy of the report in the post to me, together with a prescription for AA and Adcal. I was not amused!!

[SomersetWife in reply to Met00]

I shouldn’t think you were! Knowledge is power though - so I’m going to keep reading and learning (and keeping a big file of evidence) - thanks

[SomersetWife]

Edit - my initial post at the top of the page, should read that each calcium tablet contains 1,000mg calcium NOT 100!

[Fruitandnutcase in reply to SomersetWife]

You're sure it’s not 1000 spread between two tablets taken morning and night? The ones I was given worked that way - think each tablet provided 500mcg calcium and 400mcg D3 so the total for the day was 1000 and 800.

I stopped taking calcium supplements because I didn’t do well with that amount of calcium supplement - I tried two different types plus I’ve just bought some calcium citrate which is supposed to be more gentle on the gut but it still upset my system - so I’m just making sure I get enough from my food.

The ROS provide dietary information with a good chart of foods rich in calcium (and D3) so although I don’t drink milk and don’t love yoghurt I top up with things like almonds, dried figs, oranges and seeds etc from their list and I’d say I get most of my calcium from green leafy vegetables.

I started AA but felt so ill that after a few months I stopped - although I know lots of people who take it and are fine - it was more my body in general than my gut / oesophagus, that was fine, the rest of me just felt dreadful.

So now I eat the right things, top up with vitamins D3, K2MK7 Natto, magnesium, vitamin C+ zinc, an Omega 3 algae oil - I was taking boron but I don’t think I need to take it all the time as I get it from other sources, I’ve got the calcium citrate if I feel I need it and I’m thinking about a vitamin B Complex but I feel I’m taking enough already.

Know what you mean about exercise, I find it very hard if I can’t get out and get some daily exercise. I bought one of the physiotherapist Margaret Martin’s videos from Amazon and if I can’t get out for any reason I do that or often I do that if there is nothing else I want to do.

It’s quite easy, lots of stomping and general weight bearing exercise, she runs through the exercises twice and although it’s not difficult it keeps you on your feet and moving for about 20 minutes or so, so you know you’ve been exercised. I’d like to started doing osteoporosis friendly exercises with light weights or stretch bands too and I do a Zoom Pilates class twice a week which covers a lot of balance exercises and things to stop you falling over.

Definitely agree with your rant!

[SomersetWife in reply to Fruitandnutcase]

Thanks so much - there’s such a lot of useful info in your reply. No I’m not wrong about the amount of calcium in each tablet -Way too much! Thanks for the tips about the exercise video as well

[Fruitandnutcase in reply to SomersetWife]

Wow - that is way too much and too much is very bad for you.

[Thyb]

I have Osteoporosis in spine and Osteopenia in neck (cervical and lumbar). 1st Spine fracture Sept 2017, 2nd December 2019, 3rd Feb 2020. I took 1 AA In Hospital in 2017 - swollen arm/hand about an hour after it so no more for me.

'They want me to take Prolia (no chance, I've researched it plus read about loads of people's negative experiences on it....couldn't find A Positive!

I tried Adcal *calcium + vit D) But, extreme thirst/urination and it gave me hypercalcaemia.....Drs/Consultants should check our bloods to find out if we have enough calcium before dishing out pulls. Mine is still optimal...

I take VitD3/MK7 sublingual drops, xtra vit D3 25000 iu fortnightly -( InvitaD3, ) Magnesium Spray, zinc, Selenium, Vit B12 sublingual by Nature Provides, Igennus Super B Complex.

Acidophilus Plus probiotic, Acerola cherry powder for vit C.

I really think you need blood results for Calcium as you eat a calcium rich diet...

[SomersetWife in reply to Thyb]

Thank you for the tip re the blood calcium, I will get it checked. Sorry to hear about your experience with AA - I really don't want to be on it so as soon as I'm able, I will be stopping it. Only had one dose so far - with no apparent ill-effects as far as I can tell. Good luck with your journey. I have trouble with vitamin B12 supplements as they seem to set off cystitis. I had read that if you have interstitial (sp?), these can give you problems.

[Thyb in reply to SomersetWife]

Good luck with your journey x

[fenn]

Hi. Just a thought, is Giant Cell Arteritis an inflammatory condition? And if so an Anti-Inflammatory Diet may help. It might help reduce if not eliminate the need for medication. I am on an AID for Arthritis and Gastritis, I can’t see that it would have a negative effect on my Osteoporosis.

[SomersetWife in reply to fenn]

Yes, it is and I have just made another post asking for dietary advice. Thank you