Advice needed for bone medication.: At last I... - Bone Health

Bone Health
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Advice needed for bone medication.

At last I have an appointment to see a rheumatologist next week.

My GP found an appointment with an out of county hospital. (Only a 30 week wait instead of 42 weeks - so much for the 18 weeks) Excuse the irrelevant rant.

I had to come off alendronic acid tablets because of side effects.

I also have severe neurological problems, balance very poor and degeneration of spinal cord, caused by B12 deficiency and treated with injections. I hope any medication will not interfere with that.

Does anyone have any advice on what to ask for, refuse to take etc.

PS I have 2 fractured vertebrae.

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Hi ,I'm no expert by far,so I can only give my experience.

I could not take tablets, because I suffer severely with my stomach,so my GP put me up for Prolia injections twice a year,I've had them now for over 5 yrs,with no problems at all. The last scan I had last January was fine.

Just my experience,but I can understand your anxiety.

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Thank you. I have made a note of Prolia.

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Also I don't know if you've tried either phoning or emailing the NOS nurses they are really helpful. I was given there advice a couple of weeks back.

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I spoke to a NOS nurse some months ago when the fractures were found, (she was very helpful) perhaps I should phone again.

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Why not,or if you find it easier to write your situation,email them.

There the ones with the best information,in my opinion,I even mentioned that I had emailed/phoned them to my Osteoperosis nurse,and she said any time I need advice to ring them if I couldn't get her.

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All I can say, Gemini71, is that you are extremely lucky. I have had one injection only, and that was due to being pressured into it by my local GP. I ended up with shingles (Prolia lowers your immunity and therefore makes you increasingly susceptible to infections) and discovered that the common negative side effects of Prolia are not nice. The drug itself goes against nature, as it prevents the growth of new bone cells, and causes old bones to become brittle. I can't wait until it's out of my system. My plan is then to build up my bone strength via natural means: weight-bearing exercises, walking, a healthy diet and plenty of calcium magnesium, Vitamins K2 and D3.

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Hi just to reply to you. Nobody could have a lower immune system than me,I have Emphysema which nearly took my life,due to chest infections,which I haven't had in the last 12yrs,not 1. I have Reuhmatoid Arthritis and the tablets I take for that lower your immune system,and I have underactive Thyroid which don't help either.

I've been taking Prolia now for 5 yrs,and everything's fine,so I think if it caused infections I would be dead by now. So how you can blame having shingles after one injection is beyond me. If anyone has a very low immune system it's me,but I takegood care of myself,and Prolia certainly has done the job for me. Oh and just to add,the only way to get vit D is the sun,so don't waste your money.

And if that's what you call lucky,I'm glad I'm not unlucky.🤔

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It was my doctor that confirmed that the shingles was due to the Prolia injection, caused by the Prolia lowering my immunity considerably. He said I was obviously not suited to Prolia. And this was confirmed by other medical staff when I was admitted to hospital. The Prolia definitely lowers your immunity, which is slightly different from actually causing an infection. As a nurse of 30 years experience, I discovered that many patients are suffering from adverse effects of Prolia, ranging from severe infections to necrosis of the jaw, losing the ability to walk, and spontaneous fractures of vertebrae and limbs. You are one of the very lucky ones who have had no adverse side effects. Congratulations :)

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Read your own post,you say " makes you susceptible to infection" I'm only relating to what you said.

And boy I wish I had a doctor like you,because I've never met a GP yet that knows about EVERYTHING.

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Even if you aren't on an immune suppressing drug shingles is actually listed as a possible result of receiving the original live vaccine. I don't know if the new one using killed virus can also trigger a shingles attack but it seems less likely.

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Hi Heron,I haven't had shingles. I think you sent your post to the wrong person.

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I was responding to your comments about the immune system.

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Sorry

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Gemini71 "the only way to get vit D is the sun"

"Vitamin D is also found in a small number of foods. Sources include: oily fish – such as salmon, sardines, herring, mackerel" ... from NHS site

Beef liver.

Cheese.

Egg yolks.

There are also foods fortified with vitamin D, like some dairy products, orange juice, soy milk, and cereals.

You can also buy Vit D capsules.

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Just like to say the main source of VitD comes from the Sun.

I have a very good Pharmacist who told me buying vit D capsules are a complete waste of money.

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That surprises me, as in the UK we are now all being recommended to supplement with Vit D in the winter months because the sun's too low in the sky for us to get Vit D from it. My Vit D levels were too low till I started taking a supplement, which almost certainly contributed to my osteoporosis.

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Hi Met00

I agree, Dr Sarah Myhill has a page on Bones on her website, recommends supplementing a large amount of vit. D. Not only is the sun low but it does not shine for weeks on end, I've forgotten what it looks like.

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And interestingly, if it's correct that you can't get Vitamin D from the sun until your shadow is longer than your height, where I live you can only get it from late April to late August - just 4 months of the year!

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That Pharmacist is out of order. One should never generalise. Patients are individual's, we are all unique.

However, if I remember correctly, you do not have Vitamin D deficiency? Didn't you used to be presribed Vitamin D & Calcium?

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Why would I be prescribed vit D if I didn't have vit D deficiency????

I've never been prescribed vit D,so don't know where you got that from. Get your facts right.

And I have every faith in my Pharmacist.

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An informal study on Trust Me I'm a Doctor found that people's blood levels of Vitamin D recovered nearly exactly the same whether through diet (carefully selected oily fish), sunshine (ten minutes exposure at midday) or supplements.

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The sun is not the only way to get Vitamin D. Supplementation is necessary, and should be presrcribed, in cases of Vitamin D deficiency and Vitamin D insufficiency. So it's - sun, healthy diet, plus supplementaion where required in accordance with the individual's medical conditions & needs.

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Hi I was on AA and taken off becuase of hiatus hernia and awful reflux. Doc put me on Risedronate and I am suffering terribly with pain in my bones, I have stopped the Risedronate and the pain has lessened somewhat but not altoghether, awaiting results of an X Ray, I too have 3 fractured vertibrae. Let me know how you get on X

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I will see if I can avoid Risedronate. I don't need any more pains. Will let you know.

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Hi angie26 I used to have bad indigestion and reflux but got rid of it with a very good probiotic. The AA started it up again, so back to the probiotic. I also ate raw organic sauerkraut, which is good for the gut. Some people make their own but I either don't have the energy (or am too lazy)

How did your xray go, or are you still waiting to hear.

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Hi beginner 1

Could I just ask you which probiotic you used for acid reflux please? I am taking Ranitidine and it’s not good for people with osteoporosis. Thanks

Good luck with your appointment by the way

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Hi Carol-P It is Symprove. There was research done at Cambridge - the findings were that very few probiotics survived the acid in the stomach, and this was the best.

It is expensive, and many people think that organic, raw sauerkraut is just as good.

If you do try it the 'mango and passionfruit' has a very nice taste, the original less so. There are posts on this in the PAS forum where I come from.

-

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Thanks for the info. It’s very helpful. I’ll give it a try.

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Carol-P I forgot to say that some of the people with reflux , indigestion etc. drink lime juice with meals and others cider vinegar.

I expect you know that reflux etc. can be caused equally by low acid, so lime etc. helps balance it. There are some good posts on the PAS forum about this, as low acid stops the absorption of vitamin B12.

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Thanks beginner1 all thats really useful to know. I didn't know about the low acid stopping absorption of B12. By the way can I ask what the PAS forum is please?

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Carol-P Hi It's the Pernicious Anaemia Society forum on HealthUnlocked - deals with B12 deficiency which is sometimes caused by low acid so B12 cannot be absorbed and reach cell level and if untreated can cause nerve damage and damage to spinal cord.

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I think my problem with my reflux was due to a hiatus hernia, doctor said I should never have been on AA. I got the results of the x ray only yesterday, such a long wait!! however these were fine, showed only normal degeneration for my age, now looking at why the joint pain, it is getting better day by day and I'm wondering if the Risedronate is working its way out of my system. I do take a good probiotic too and I love sauerkraut and have promised myself that I would make some, hp[ing to do that soon! Hope things improve for you, take care.

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This is not just to you beginner,it's to you Met2 as well.

You've obviously got your own way of thinking,or learned from whatever,same as me,I've learned from who I think is the best.

So let's just agree to disagree.

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Gemini71 Of course you are allowed your own opinion and can treat yourself how you like.

For people who need to know how to get enough vitamin D I think these are more reliable sources.

From the National Osteoporosis Society

“There are three ways you can get vitamin D:

•from sensible sunlight exposure

•from food and drink containing vitamin D, either naturally or fortified

•from vitamin D supplements”

I have already quoted from this site

Vitamins and minerals - Vitamin D - NHS.UK

More information, on vitamin D supplementation, in the BMJ and NICE.

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For goodness sake, what is happening to this post? Let’s just try to help each other that’s what this forum is all about xx

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I would recommend Forsteo which lays down new bone.It is not always available but is excellent.

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I have heard this is the best medication on offer but is expensive so there is a reluctance to prescribe. The not so good news is that as I understand it, one can only be on this drug for a maximum of 2 years and have to follow up with another bone medication so as not to undo its good work but what a dilemma as there is not much choice.

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Hi megalyn and Kaarina thank you for your answers.

Perhaps I will be lucky as my appointment is out of my county and presumably they won't be paying. I've read about the medication, most do not seem very nice.

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