Stopped AA but taking EvacalD3

[MaggieSylvie]

After an MRI showing four compression fractures, my GP put me on Alendronic Acid and EvacalD3. I read about some side effects for AA and stopped taking it after nine months. I am still taking Evacal. Is this safe enough? I am nearing 78 and my risk for osteoporosis is not high. My bones are in quite good shape.

[Met00]

Taking AA would only reduce your fracture risk by 50%, and if that risk isn't high (although you've had compression fractures, which does suggest a high risk), then it's certainly questionable whether it's worth taking it (see NICE patient decision aid: nice.org.uk/guidance/ta464/.... However, Evacal is just a calcium and vitamin D supplement, so cannot build bone, though will help ensure that low levels of both don't contribute to bone loss. Many of us get calcium from diet, which is now the recommended approach, just supplementing to make up any shortfall. There are other supplements you can take, in particular Vitamin K2-MK7 or K2-MK4 (helps send calcium to the bones) and magnesium (as important for bone health as calcium). Exercise is really important, as high impact as is possible and safe for you, including weights and resistance bands if you're able.

[MaggieSylvie in reply to Met00]

Thank you for your reply. I am having a blood test on Monday when Vit D will be tested. When I get to talk to someone, I'll see about getting K2-MK7 or K2-MK4 and magnesium, though I'll probably have to buy those myself. I'm actually being tested for thyroid problems, and if I do end up having to take levothyroxine it would be best not to take Evacal or I'll spend all my time clockwatching. Exercise is difficult at the moment as I'm just getting over the last painful fracture (assuming it is a fracture, as it seems to be "healing" more quickly than the others) and I'm spending nearly all my time on the laptop researching my various health problems, as well as doing whatever housework I can manage. I know I should be doing more but I didn't even get a chance to rest when my back "went ping".

[Met00 in reply to MaggieSylvie]

Sorry you've had another fracture and I hope it heals quickly. Once it has, I'd recommend you get some professional advice about what exercise you can do safely. You'll definitely have to buy supplements yourself, and it's doubtful the doctor will even have heard of Vitamin K2. When I asked my GP about it, he said "what's that?"! It's really important to supplement with Vit D3, as we should be aiming for a blood level of at least 75nmol/litre (30ng/ml if in US), and ideally 100nmol/litre (40ng/ml), some say even higher than that. (My doctor told me my level was OK at 47nmol/litre, even though that's below the normal range!) It's likely that you'd need 2000iu Vitamin D supplement daily to achieve optimal levels (I assume you're getting 800iu from Evacal?), but this does vary enormously from one person to another, so monitoring with blood tests is the only way of being certain what's right for you. Have you been tested for underlying causes for your fractures? Apart from Vitamin D, you should be tested at the same time for blood calcium and parathyroid levels (not the same as thyroid), which all work in conjunction with each other, plus a full blood count, a coeliac test and thyroid (the latter I assume you've already had done).

[Clyde12 in reply to Met00]

my GP said , when I mentioned K2……oh yes , that’s a mountain!

[Met00 in reply to Clyde12]

😂😂

[wellness1 in reply to Clyde12]

Hilarious!

[MaggieSylvie in reply to Clyde12]

🤣🤣

[MaggieSylvie in reply to Met00]

Thanks Met00, I have a blood test for thyroid tomorrow, so hopefully that will give me Vit D3 information. I have been tested before for parathyroid levels and assume they are unremarkable. I guess if my bloods show anything of note, I will then get tested for coeliac and calcium later. I'm taking two EvacalD3 per day, so yes, that would be 800iu. I've had a DXA scan but I don't remember doing any blood tests specifically for fractures. I had physio and chiropractor advice on exercise, so I can still use those. I find the knee swinging exercise on the bed and pelvic tilting quite good. I'll have another blood test at the end of November for my blood cancer, so hopefully that will include relevant bloods.

[MydogBrandy]

hi , took the weekly dose of alendronic acid for 6 months and then started feeling really sick after taking it…so the doctor put me on a monthly higher dose.. went 6 months again and started feeling sick again so now I have stopped seen the specialist who is going to give me an infusion once a year for three years. I have to make sure my dental work is all complete first though because an infusion can possibly give trouble to the jaw. So I have just had two extractions and now have to wait 6 weeks for mouth to settle before the infusion. Good luck regards Ursula x

[MaggieSylvie in reply to MydogBrandy]

Ursula, I didn't have any side effects! You were unlucky. I've given up AA anyway, and had already had an extraction. But no-one asks any questions about what one's taking or what dental work we have planned; seems it's all down to us. Hope it all goes well.

[MydogBrandy]

oh, I have been advised not to have an infusion until all major rental works done. This is from the doctor and the specialist. My dexa result is -3.5 and I am 73. I must say I am worried about having an infusion.

[MaggieSylvie in reply to MydogBrandy]

Good morning Ursula, I'm not really sure which of the scores are my DEXA score. I have one each for spine, femoral neck and total hip. If I go by the hip, last year it was 1.1 at age 76. The spine (L1, L3) was 3.4. 10-year risk of hip fracture was 3.5%. I was advised, given my history, to continue bisphosphonates for 5 years, but I have not.

If you have an infusion, how will it affect you compared to your previous doses? Will it release all at once or gradually over the year?

[MydogBrandy in reply to MaggieSylvie]

I presume gradually over the year, I will go in depth about it before they put the infusion in😊I am so worried about it. I have just asked my doctor what happens if I need dental work during the three years so he is going to ask the question and get back to me. Will keep you updated x

[MaggieSylvie in reply to MydogBrandy]

I can imagine it is quite a worry to you as it has the potential to make a misery of the whole year. I hope they can maybe get the dose right.

[MydogBrandy in reply to MaggieSylvie]

🙏🏻🤞x

[MydogBrandy]

sorry should say dental not rental 😂

[mushwee]

The problem with biphosphates is that they do grow bone but it is inferior brittle bone.

[MaggieSylvie]

well, I've just had another "injury", but perhaps it would have been worse with brittle bones! I'll just have to be more careful I suppose.

[LynneH-19]

Have you discussed your concerns with your GP? I had problems with AA and stopped taking it after 10 weeks. This was in 2011.

I've been on prescription Strontium Ranelate ever since, without problems and no more broken bones. This drug is not prescribed for patients with heart or circulatory problems. It's also more expensive than AA, another reason why is not readily available!

I tend not to take Ca supplements but usually manage to get my 1200mg a day from my diet. I was a vegetarian for over 40 years until I started breaking bones. After looking closely at my diet, I realised that my protein and fat intake were below the guidelines for my age.

The animal protein is needed for building the collagen bone framework and the fat is needed to aid the absorption of the fat-soluble vitamins: vit A retinol and vit D3 both essential for bone health.

During the week, I now include in my diet, some meat, free range eggs, dairy milk with its 120mg Ca per 100ml and tinned Wild Red salmon. I try to balance it all with veg and fruit.

When you eat tinned salmon, you must include all the liquid and bones. I mash it all up with a fork, so the bones are not visible! !00g of this mixed up, tinned Wild Red Salmon contains approximately 20g of protein, 1200mg of healthy omega 3 fat and 760 IU of vit D3. as well as 220mg of Ca,

I have a daily 150g portion of full fat, St Helens Farn goat yogurt, which I buy from Sainsbury's. It contains about 360mg of Ca per 150g portion. This is delicious with fresh seasonal fruit, as a substitute for custard, as a topping on home make soup or curry etc.

I take vit D3 supplements and get my blood level checked twice a year. I take 1 teaspoon of cod liver oil for vit A retinol a day. I now take Chelated Magnesium 400mg a day. This form doesn't upset my guts how the Mg oxide does. Holland and Barrett used to sell their own brand, which was great, because each tablet was 150mg. Unfortunately, they appear to have stopped selling it, so I now get the Solgar brand, which is gut friendly, but only comes in 100mg tablets, so I need to take more.

Good luck

[MaggieSylvie in reply to LynneH-19]

Hi Lynne, Thanks for all your tips. I have never heard of Strontium Ranelate. And no, I haven't discussed my concerns with my GP yet.

My first step is to try and get an appointment with the physiotherapist who was able to refer me for an MRI that diagnosed the compression fractures. The young physio they have recently employed at my surgery was unable to do that and told me to refer myself for an x-ray. I have found in the past that x-rays show very little, and besides, while I am expecting it to be a compression fracture, I am not entirely sure that it isn't something else. His examination of me wasn't exactly thorough and by the time I got the appointment, the pain had abated quite a lot.

I'm taking loads of supplements and not about to give up vegetarianism. If I were to be housed in a care home and had little choice, that might be the time for that, but I'm not there yet. I must say I am attracted to magnesium but I've got blood cancer and thyroid "oddness", so can't just take what I want. I'm sure my supplements supplier would have suggested it if it were the right thing to do. I will definitely look for the goat's yoghurt that you recommend in Sainsbury's (I don't think I've seen it yet) as I've been looking for something that will keep my guts working at their optimal level, so thank you for that tip. Otherwise I use almond, coconut or oat milk on my morning cereal.

[LynneH-19 in reply to MaggieSylvie]

Hi Maggie I’m sorry to hear you have other health issues.

I forgot to say I also take Life Extension Super K . It contains mainly mk7 with a small amount of mk4. Been taking it for years, but as with all supplements, I’ve no idea if it’s actually helping me. I’m 73 and my main aim is to keep as active as possible without falling again.

I appreciate your feelings about a vegetarian diet. It took me a long time to gradually include none vege foods in my diet.

Best wishes

[MaggieSylvie in reply to LynneH-19]

I'm nearly 78 and have been asked "have you been supplementing B12?" And no, I haven't. While being vegetarian, my diet is quite varied and I am clearly getting B12 from somewhere! I don't know what MK is or Super K, but if it's vitamin K I don't think it would be right to take it because I take aspirin as a blood thinner daily.

[LynneH-19 in reply to MaggieSylvie]

Hi Maggie I don’t routinely take a B12 supplement. If you felt you were becoming anaemic, have a Full Blood count done, via your GP, or request it during a routine hospital check up.

A B12 (or folate deficiency) will be indicated by a reduced Haemoglobin level, an increase in the size of your red blood cells and changes in the appearance of your polymorph neutrophil white cells, as seen under a microscope. Assuming the haematology staff or GP, are on the ball, they should then request B12 and Folate assays, to tell which the deficiency is.

I’ve been taking daily vitamin K2 ( mk7 plus a little mk4) since reading a book called ‘Vitamin K2 and the Calcium Paradox’ by Kate Rheume Bleue. If you Google the title, it comes up with several links and summaries.

Basically, if you take more Calcium than your body actually needs, there’s a chance that your kidneys won’t excrete all the excess. Although some of it could form kidney stones, the greater danger is that it will end up being deposited in your arteries, potentially causing serious heart problems.

Vit K2 is said to be essential for the correct utilisation of Ca, directing towards the bones rather than the arteries. There’s different opinions as to whether the mk7 form of vit K2 is the best one for this function. Whereas the mK 4 form of K2, may be more specific for OP treatment, as used in Japan. K2 is found in some fermented foods, but generally is taken as a supplement.

The RDA for Ca is usually stated around 1200 mg of Ca a day. I usually manage to get this from diet. If you cannot achieve this level, you can make the shortfall up to this level, with a Ca supplement. There’s no advantage in taking a lot more.

Ref your comment about taking aspirin. Vit K1 is the one found in green veg. This takes an active part in stimulating the normal blood clotting mechanism. I’m not sure how much vit K2 actually affects blood clotting, if at all. Vit K2 was unknown when I did lab work, 14 years ago.

I far as I can remember, Aspirin works on a later stage of the clotting pathway, involving platelet cells, which normally stick together, when stimulated, helping to form the blood clot. Aspirin makes them less sticky, therefore reducing the likely hood of the clot forming.

You really would need to discuss this with a pharmacist or your doctor.

Sorry if I’ve caused more confusion on the subject!

Best wishes

[MaggieSylvie in reply to LynneH-19]

Lynne, I am definitely not anaemic ie that I need iron. Eating more foods containing iron would not be good for me! I have blood cancer. What makes you think I have not researched this thoroughly and would take advice from someone who has not? That diagnosis is so scary, you don't just sit back and wait for a doctor's appointment, especially when they don't understand the condition. You get on and read everything the blood cancer charities provide, and which are recommended by the Haematology team.

[LynneH-19 in reply to MaggieSylvie]

Hi Maggie. Sorry, I didn’t mean to cause any insult, I was just trying to be helpful, with you mentioning B12.

[MaggieSylvie in reply to LynneH-19]

It's ok. B12 isn't an issue. Hard to believe, I know.

[MWZ3]

That is quite interesting that you have had fractures but you don’t have osteoporosis. What is the cause of your fractures? Why then was a medicine that treats osteoporosis given? It seems there is a push to prescribe these meds?

[MaggieSylvie in reply to MWZ3]

Yes, it is interesting. Compression fractures often happen due to a fall causing a jolt to the spine. Yup - T4. Lifting something heavy can cause another - T5. After that, any little thing that puts the spine a bit under stress can cause more - L2 and 4. The latest - undiagnosed - L5 again, caused by stretching, but probably, like earlier ones, caused by heavy lifting.

Medicine was given, as you could probably have worked out, to give bones some strength and help prevent further fractures. I don't know whether there is a push to prescribe these drugs. When I stopped Alendronic Acid, no-one complained. I haven't heard anything untoward about EvacalD3, so am continuing, but clearly, it's not helping that much. Perhaps I am expecting too much of myself at nearly 78 and what I need to do is more actual exercise.