Newly Diagnosed and wondering about Treatments - Bone Health

Bone Health

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Newly Diagnosed and wondering about Treatments

CDreamer profile image

Hi - I had a Dxa scan score of -2.6 In my spine, 2.4 in my hips. Calcium, VitD, B12 all good and at the higher end of the range.

My GP recommends weekly tablet of Bisophosonates. The risks were explained and I have agreed to try see if I can tolerate them.

I would be grateful for any experience of these drugs - good or bad. I also have a pacemaker and take immunesuppressants for autoimmune so my drug regime is pretty heaven already, but necessary. I have excellent diet and do some exercise when I can.

Any thoughts?

42 Replies

I’m sorry no one has replied to your post and I don’t know the answer myself. All I can suggest is that you contact one of the ROS administrators or the ROS phone helpline and hopefully they can help you. Did your doctor check your parathyroid gland? That’s not the same as the thyroid but it can affect your bones too. I would definitely read lots about the different treatments before you start. Also maybe make a list of questions you want to ask when you find someone to speak to.

To me, your results are not too bad. Of course I do not know if you have fractured or why you had a Dexa scan done. If it were me, I would not rush into take OP drugs. Doctors appear too hasty to prescribe Alendronate Acid/Risedronate. Make sure you have enough calcium in your diet, take supplements like K2, Boron, magnesium and Vit D3. Exercise is important and if possible, should be done on a regular basis. Walking is good if you are able to do this.

I did try AA and Risedronate and did not get on with either as many other do not either. There are of course those that are fine on these drugs but they do not often appear on this forum very often to let us know. ;) They are busy getting on with their lives. :) At least with a pill, you can stop taking it if you find the side effects too much to bear. Usually any side effects disappear fairly soon after stopping these two drugs so that is a relief.

CDreamer profile image
CDreamer in reply to Kaarina

Thank you. Re: fractures yes I had the DEXA following distal wrist fracture. Because I have a neurological condition regular exercise can be very difficult so I do what I can, when I can which includes resistance and weight bearing. My diet is excellent and although not high in dairy I do take foods rich in calcium but Magnesium is contraindicated for the neurological condition. That’s the trouble when balancing various conditions!

Kaarina profile image
Kaarina in reply to CDreamer

Out of interest when you, unfortunately, had the distal wrist fracture was it caused by a heavy fall that even those with good bones may well have fractured or not?

CDreamer profile image
CDreamer in reply to Kaarina

Probably marginal it was a fall but wouldn’t call it a heavy fall. I did put hand out to break my fall but I was very surprised I broke it, thought it might have been a sprain.

Your fall is exactly like mine and consequently my hyperparathyroidism was diagnosed. As previously suggested please ensure this has been checked out. If you did have an enlarged glad any medication you took for osteoporosis would have no effect and could even cause harm.

Thanks, I will ask my GP. I looked up the symptoms and I couldn’t resonate with them, did you have symptoms?

My blood calcium is normal and as is my kidney function and I have high VitD. I have muscle weakness from my neuro-muscular condition and occasional symptoms which could fit but come and go ie: frequent urination (but also caused my heart condition), occasional brain fog but not confusion and I have had a kidney stone some years ago.

I think I will ring the OP nurse on Monday, thanks so much for your help. I’m already on some heavy duty meds and don’t want a batch of side effects without benefit!

Houseelf profile image
Houseelf in reply to CDreamer

Worth getting the parathyroid checked anyway. My blood levels were also fine but I had hyperparathyroidism for years brought on by stress.

CDreamer profile image
CDreamer in reply to Houseelf

Thanks I’ll bear that in mind and suggest to my GP but having just had my 12 week bloods I doubt that they will make it a priority in the current test tube shortage.

Your GP should check the level of calcium in your blood. Excess could indicate possible hyper parathyroidism. I didn’t realise my tiredness and thinning hair had been caused by it! After surgery I felt so much better. Good luck.

Had blood Calcium checked in June just after the fall - it was middle of normal range. I am lucky in that my GP seems very thorough and on the ball because she ordered the DEXA and the calcium test right away.

There is also normocalcemic hyperparathyroidism where calcium is normal and parathyroid hormone high. If either are high end of range something is wrong and needs looking at. Are you a member of hyperparathyroidukaction4change? You should be as your advice to other sufferers could be very helpful 😉

I’m not but I will look into it. Have you had your surgery yet?

Yes I'm 8 weeks post op and feeling much better. Just hope it reverses my osteoporosis. My surgeon is confident it will🤞🙏🤞

Great news. I really hope it does.

I really hope it does too x

Cant reply about bisphosphanates as refused to take them as a study showed they could cause as many fractures as they prevent. As you say your calcium is high end normal then I suggest as does fruit and nutcase that you get your parathyroid hormone levels checked. Hyperparathyroidism can directly cause osteoporosis and in my opinion if anyone is found to have osteoporosis then their calcium vit d and parathyroid hormone levels should be checked as a matter of course !

Hi, I have been taking Alendronic Acid for about 6 months. I felt as though I had been trampled by a herd of cows after the first dose but was fine after that. I stick religiously to the instructions on how to take the medication and have had no gastro problems. I would say that my wrists are stiffer and painful when I do yoga and support my body weight through my arm but that is the only side effect I am experiencing 6 months on. I am 53 with a score of - 3 in my lower spine and - 2.5 in my hip. I still wonder whether it is the right thing to be on AA from what I have read but I have decided to give myself a boost for 2 years, get another scan and then decide. I am physically active and do all the recommended dietary things as well. I am also on HRT now so hoping the estrogen will also help. Hope this helps. Good luck in your decisions. At times like this I think it would be lovely to see the results of our decisions 10 years down the line to help inform our choices!

CDreamer profile image
CDreamer in reply to Amber53

Foresight would be a spectacular super skill!

Thanks for your input.

My GP asked me to think about meds & I do research before making a decision and she was careful to explain there were some cases of fractures & jaw problems which were irreversible which is why she thought weekly dose might suit me. She also warned me to get any dental work done prior to starting treatment.

Hi CD,just wondering what neuro muscular condition you have?Any treatment for it?I have M.E.I refused Prolia due to hideous side effects & didn’t try AA coz can’t sit or stand up for more than few mins re spinal fractures.Hope you find sumat that helps.X

CDreamer profile image
CDreamer in reply to fraid

I have Myasthenia Gracie treated with Mycophenolate mofetil - immune suppressant & Pyridistigmine bromide to control symptoms. Also have pacemaker & take anticoagulants. It’s a peculiar condition as much of the time I can be ‘normal’ but at others struggling to see, swallow, hold my head up & on a few occasions - breath. I also have chronic fatigue which seems unrelated to the Mg and also comes & goes. I must be the most unreliable person to make a date with😂

Hi there, my numbers are much worse than yours- -3.2 and -3.7 I take Risedronate once a month and have no adverse effects at all. At one point my doc tried to move me onto the injection and I refused as I heard bad things about it so I am carrying on with the risedronate for as long as they will let me. I am not sure it has made much difference but at least it's not getting any worse. good luck

I was offered Alendronic Acid and I am not taking it. My overall spine T score is -3.4 my L3 is -3.7. I have a good diet, run 3-5 times a week & I’m in my late 40s. I discussed medication with ROS - they suggested HRT which protects for spinal osteoporosis (my hip score is much better) but GP wouldn’t entertain it. I asked for a medication review with Consultant and they refused. So will see what outcome of next years DEXA scan is - I hope not significantly worse....

CDreamer profile image
CDreamer in reply to KayEmJay

Thanks for your reply. May I ask what your reasons for not taking Alendronic Acid were? I have the prescription but having done further reading I’m not sure that it will suit me as I need to take another medication as soon as I awake and from what I can gather it’s best taken first thing in the morning. I’m talking further with GP tomorrow.

Unfortunately my exercise tolerance is very limited because of neurological/muscle condition. I do what my GP calls snack exercises - a minute here and see a neuro physiotherapist but walking anything further than 3000-5000 steps a day is normally the most I can manage and then that wipes me out for the next 24 hours.

I didn’t like the side effects of AA. Also it says clearly it’s meant for post menopausal women. I’m not post menopause- I still take the pill. It just felt like my concerns were pushed to one side because I’ll be going through the menopause soon! I don’t have any osteoporosis risk factors & have never broken a bone. So I plan on seeing where I am at next DEXA scan and go from there... I’d rather explore Raloxifine - HRT as an option or understand why this isn’t an option

I had a DEXA scan at the end of May. My surgery has been very busy as three practices have joined together to form one brand new, state of the art, medical centre. They moved in last month and I really ought to get the results of my blood test and the scan.

Anyway I was prescribed Alendronic Acid 70mg once a week and Adcal-D3 two a day. I've been taking them for five or six weeks now but have felt no adverse reactions.

CDreamer profile image
CDreamer in reply to Physalis

Thanks Physalis - just another thing to consider!

Physalis profile image
Physalis in reply to CDreamer

I am beginning to think that taking the Adcal-D3 tablets is a bit ridiculous. I drink two pints of milk a day! Why do I need more? I will write to my doctor today.

I'm also taking 3000 iu of D3, why do I need another 400 iu?

Physalis profile image
Physalis in reply to Physalis

Two pints of milk a day contains 1220 mg of calcium. Recommended 1000 mg a day!

However, maybe I need to top up my 1220 mg with one 1500 mg tablet to give nearly the amount two tablets would give.

CDreamer profile image
CDreamer in reply to Physalis

Those Ad-CalD3 tablets just made me ill so stopped those years ago. I don’t drink milk at all but do take kefir, yogurt, lots of broccoli & kefir so I think my diet contains enough. I have D3 supplements & my GP monitors those & currently it’s way above recommended levels.

Physalis profile image
Physalis in reply to CDreamer

I don't really understand why the recommended daily amount is 1000 mg and for someone with osteopenia it's good to give 3000 mg. The calcium carbonate doesn't seem to have affected me.

CDreamer profile image
CDreamer in reply to Physalis

I do remember getting more AF taking Calcium which figures if calcium excites activity and magnesium soothes - that’s why calcium channel blockers are affective in fact I cut all dairy for 12 months so it’s a really difficult one getting a balance.

I think I’ve decided that I’ll leave it until I’ve seen my dentist - early October - try the 4 weeks of the AA and see how I tolerate it.

Thanks for your help.

Just read this "Since magnesium works closely with calcium, it is important to have an appropriate ratio of both minerals in order for them to be effective. A good rule of thumb is a 2:1 calcium-to-magnesium ratio. For example, if you take 1000mg of calcium, you should also take 500mg of magnesium."

I'll think about that tomorrow!

CDreamer profile image
CDreamer in reply to Physalis

Thanks, I leave you to work that one out. Trouble is I can’t take any magnesium

Kaarina profile image
Kaarina in reply to CDreamer

Would it be possible for you to use a magnesium spray? I believe there is a gel one can buy too. I recently bought a BetterYou Magnesium Oil Spray and spray on my body and massage in well.

CDreamer profile image
CDreamer in reply to Kaarina

Thanks, yes I do use a Magnesium Spray occasionally. I like Ancient Minerals or Dead Sea.

Have a look at this, for ideas to add to any medication you decide to take:

healthunlocked.com/pmrgcauk...

CDreamer profile image
CDreamer in reply to HeronNS

Thanks, that looks very interesting.

Exercising is my main difficulty as I do really well if I can manage a mile and then that wipes me out for several days. I have started using vibrating plates - on recommendation from neuro-physio the theory being that a few minutes on that is equiavalent to about 30 mins of walking. It’s also excellent for connective tissue. Swimming was always one exercise form I could do easily but our beach has been too crowded this summer and not chanced indoors as I didn’t produce antibodies after 2 vaccines.

Read the Magnesium Miracle - but as I say taking Mg orally is out completely for me - even 2mg as a filler in a B Complex supplement laid me low.

I take K3 but not the K vitamins so that’s useful information and I will do some research on VitD overdose - my GP is very keen on high levels but my neurologist less so.

I think you have given me enough links to keep me very busy for the next few months!

Thanks for posting.

HeronNS profile image
HeronNS in reply to CDreamer

I hope you meant D3, not K3, as K3 is toxic and not a supplement for us! It is unusual to overdose on Vitamin D, especially as nowadays we get so little sun exposure even in the summer when our skin can actually make Vitamin D. Normally we only activate the D we need, otherwise a day in the sun would poison us, wouldn't it? Even I, with sarcoidosis tending to lead to high D levels, take a supplement, but not as much as would normally be prescribed. Hopefully when pandemic issues settle down you can have your D level checked.

CDreamer profile image
CDreamer in reply to HeronNS

I have it checked regularly - latest 2 weeks ago & it’s above normal. Sorry my bad - I meant K2 - which is included with the D3 supplement I was prescribed.

My GP thinks I need high VitD - serum for August =95 - for my neurological condition whereas my neurologist is more conservative but they both monitor my blood draws which are done 12 weekly - used to be monthly but as I am reasonably stable they went to 12 weeks.

HeronNS profile image
HeronNS in reply to CDreamer

I think the tendency these days is to prefer higher Vitamin D levels than traditionally thought sufficient. Have you had your parathyroids checked as they can lead to high blood calcium - which means the calcium is not staying in your bones where you want it. Is it safe for you to get magnesium from your food? As magnesium is to green plants what iron is to animals it is readily available in a lot of healthy foods, but of course not at the high level you'd find in a supplement or even an Epsom salts soak.

CDreamer profile image
CDreamer in reply to HeronNS

Thank you, parathyroid was discussed above, my blood calcium’s normal. I ensure I eat foods high in calcium and magnesium, potassium and sodium for other conditions. Epsom salt soaks puts me in bed for 2 days afterwards but occasional (no more than weekly) Sea Salts work. I use a Magnesiun Oil spray for muscle spasms and that works without weakening me.

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