Newly diagnosed: Hi everyone I’m 57 and have... - Bone Health

Bone Health

4,468 members1,857 posts

Newly diagnosed

Timothy0172 profile image

Hi everyone

I’m 57 and have been diagnosed with osteoporosis after having had a bone scan, recommended since I am on a lot of treatment for bipolar. My reading for my spine is -4.5 and I am getting the impression this is really quite high. I suffer from constipation already because of my medication and have always had a sensitive stomach. My doctor didn’t mention the gastrointestinal issues when prescribing Alendronic acid and neither did she mention alternative ways of improving my situation. I would really welcome views on whether a reading of -4.5 is too high to be able to treat with exercise, diet and supplements. If I could try these first what would people recommend and has anyone have any advice about alendronic acid which I think I will take this morning as an experiment. I am hugely disappointed at the terrible possible side effects and not very keen but I suppose I must give it a try initially.

Thanks very much!!

25 Replies

I would suggest you try the AA and see how it goes, totally following instructions, take with a glass of water standing up and don't lie back in bed you can move around or sit down but not lie down or bend. You can get Nexium to counteract the tummy issues, not all get the tummy problems but some do. I am prescribed it and have stopped as it was affecting my tummy, my sister on the other hand tolerated it well but moved to Prolia. Interestingly enough my Rheumatologist informed me a good walk and a yogurt was just as effective but I have osteopenia and my scores would be lower than yours

Timothy0172 profile image
Timothy0172 in reply to

Thank you so much Suzuki! So so helpful. So grateful for the time you’ve taken to reply to me. Bella xx

Hi Timothy,

Doctors always prescribe AA and calcium/Vit D pills in the first instance. The only way to find out if it suits you is to try it. This I did and very soon knew it was not for me because of stomach/bowel problems. The doctor then put me on risedronate which is also a bisphosphonate which again I had to stop for the same reasons. I asked to be prescribed strontium ranelate which suited me fine but was unfortunately taken off the market middle of last year. There are injections that can be given which bypass the stomach should you not be able to tolerate the AA or risedronate. I take Vitamin D tablets prescribed by my GP and after a discussion with him, he agreed I have enough calcium in my daily diet so no need for any prescribed calcium. I also take cod liver oil, boron, magnesium and K2 supplements which I purchase myself. I exercise at home and walk daily.

I am not surprised to hear that your GP was not any help. She probably does not know much if anything about osteoporosis.

Thank goodness for forums and for the NOS helplines where you can call and speak with a nurse. Tel: 0808 800 0035 - It is free from all UK Landlines and Mobiles.

Dear Karina

First of all, I need to thank you enormously for your help. There is a lot you’ve been able to make me think about as well as having the telephone number to follow up. You’re quite right about the GP knowing very little - she admitted she had to look up more info on the internet. The extra supplements to my diet are all in addition to what advice you and others have given me which illustrates this. I will be acting on everyone’s advice and keep in touch. So nice to know there’s a little community of help out there!! Thank you all. Bella

in reply to Timothy0172

Check out "Save Our Bones" online. So much info on natural methods to improve bone density and the rest and info on why you shouldn't succumb to AA. Support to go against medical advice.

Is it ok to take indigestion remedies as I’m feeling very uncomfortable indeed! I am assuming not but it would be great to know! I’ve only had one pill so far!! X thanks!

Kaarina profile image
Kaarina in reply to Timothy0172

Hi Bella. I really think you ought to go back to your GP if you are feeling very uncomfortable after taking one of the AA tablets. As you say in your introduction you already suffer with a sensitive stomach so if it was me, I would take no more of the AA and go back for advice. AA can affect the stomach in some people without any sensitivity in that area so I am not really surprised to hear you say you do not feel that great. I hope you feel better soon.

Timothy0172 profile image
Timothy0172 in reply to Kaarina

Ok that sounds a good idea. You are very kind. I will see how the week goes but I’m booking to see her anyway as my husband wants to to have a chat with her too. It’s partly because I take a lot of medication already but I’m hoping maybe some of that can be cut down.

Thank you!! Xx

Kaarina profile image
Kaarina in reply to Timothy0172

Do let us know how you get on Bella. :)

Hi I have been taking half a lemon in warm water every morning along with my vitamin d and k2 I no longer have indigestion. You are always better off to take natural remedies first.

Oh, thanks Eleanor! That sounds interesting. I thought it wasn’t too good to have too much acid in the gut but maybe this is different? Sounds worth a try - thanks for the tip! Bella x

Kaarina profile image
Kaarina in reply to Eleanor01

I was under the impression that Vitamin D and K2 should be taken with a main meal to interact with calcium and fats.

Timothy0172 profile image
Timothy0172 in reply to Kaarina

Hi Kaarina

That’s v helpful. Will do. Thank you! X

Eleanor01 profile image
Eleanor01 in reply to Kaarina

I haven't taken them like that and my vit d went from 9 to 30 in a couple of months. Most of our problems stem from very low vit d and others that interact with it like k2. Everyone should have their but d checked and normally it will be low for bones density and cancers

Kaarina profile image
Kaarina in reply to Eleanor01

I do have my Vit D checked twice a year and the doctor is very pleased with my result. It was 123.2 when tested in October and it was a similar result last April. I shall have my Vitamin levels tested again this April. I eat lots of tinned sardines - bones an' all). :) I have no idea what my Vitamin D levels were before being diagnosed with osteoporosis. It is a patients right to have their Vitamin D checked when diagnosed with OP.

Eleanor01 profile image
Eleanor01 in reply to Kaarina

I was diagnosed with ok when we were having our yearly tests in Poland. I then had vitamin d test and several others. In England the first doctor refused to do as scan as I was not in the category for having it this happened in 2016I changed doctors and had the scan. I also had X-ray for spine fractures thank god I was clear. I decided not to take medication only natural vitamins and minerals. No pain anywhere will have a scan again in April.

Hi Bella,

I was prescribed Alendronic Acid in 2016. It did give me indigestion, but I persevered and unfortunately after a while I started to feel strange and completely spaced out after taking the tablet every Wednesday morning.

When I went to collect my prescription from the pharmacist the following month I told her how I felt and that I was going to stop taking the Alendronic Acid tablets. I asked whether any other people had experienced problems and had stopped taking it. She explained that what I had been prescribed was actually the generic form of the drug and that perhaps I would get on better with the original form which was Fosamax. Many people who changed got on better with the Fosamax and carried on taking that. She advised me to see my GP, explain how I felt and to ask whether I could be prescribed Fosamax instead. They are much more expensive than the AA tablets that I had originally been prescribed but my doctor agreed to prescribe Fosamax.

Fortunately, even though I sometimes have heartburn, I feel much better.

By the way, make sure that you take it on the same day every week, and especially according to the instructions that are enclosed. When I was on holiday I drank bottled water with the tablet and realised on reading the instructions again the next month that it warns not to drink mineral water with the tablet.

I would prefer not to be taking bisphosphonates of course, but my doctors stressed that for me it was better than falling and breaking my hip, so it is the lesser of two evils. Hopefully the medication will build up bone that has been lost causing osteoporosis.

By the way, the nurses at the NOS helpline are very knowledgeable and extremely helpful. They always have time to listen and you won’t feel rushed, as is unfortunately inevitable when you speak to your GP in a busy surgery. Make a note beforehand of everything that you wish to ask them and make a note of any advice that they give you.

Do you have a copy of your scores on the scan? It will help them at NOS to give you the best advice in your situation. I was given a copy of my scores when I asked for it when I visited my GP.

By the way, I have been prescribed sachets of Laxido orange that I drink in a glass of water for constipation.

I hope that you will feel better soon and that you will glean more information to help you decide whether or not you should be taking the medication that you have been prescribed.

Best of luck. Let us know how you get on Bella.

You have been so helpful and so kind to have given so much advice. I’ve felt certainly better today, some indigestion but not too bad and it calmed down this afternoon. The helpline sounds brilliant. I’m certainly going to get the results of my previous scan and the current one so I can understand them better myself. I have my other consultant to ask about my other medication too in case that is causing something detrimental although I haven’t found any info anywhere yet that they do.

I will certainly keep in touch. I’m amazed to have found this forum so quickly and that you all have been so kind and supportive. Many thanks and best wishes. Bella

By the way making Timothy my name was a bit of mistake. I didn’t realise putting in my cat’s name would end up being my name! I’ve been able to edit my photo but not my name yet!

X

Hi all. I reAd a post from someone who knew her exact calcium and vitamin D levels and wondered how she got these. Would it have been through a blood test?

Also I’ve bought some supplements for the moment as the GP didn’t mention anything but haven’t got vit K2. Where do I get it and all the other more weird stuff?! Boron and Kefir for example? I’m having the odd prune but that’s as far as I’ve got on the diet really! There’s been no mention of an osteoporosis department at the hospital for help. Someone mentioned they went to one. Is this common? Thanks v much. Bella. Just out for a walk in the rain!

Kaarina profile image
Kaarina in reply to Timothy0172

Hi Bella, if it was me regarding knowing my calcium and Vitamin D levels,the results were from a blood test which the doctor I see for my osteoporosis at the endocrinology department requested. Boron can be bought in capsule form on the internet or if you eat 6 prunes and eat some nuts daily that will cover the boron. Kefir can be bought very cheaply from Polish supermarkets or some of the supermarkets like Sainsburys sell it too but it is more expensive than the Polish equivalent. I asked my GP to refer me to someone as I knew I would not get very far with my GP regarding osteoporosis. I get on well with the doctor and look forward to my appointments to see him twice a year.

Timothy0172 profile image
Timothy0172 in reply to Kaarina

Thanks so much Kaarina. Again you have been so fantastic and helpful. Everyone’s replies have been so informative and I know so much as a result. So many great tips! X

Hello Bella. I know my exact readings too. I get my Vit D and Calcium levels checked about every 4 months after discussing it with my GP. She wasn't that keen but didn't stop me, and I simply have to make an appointment with the practice nurse to get it done. That allows me to make sure levels stay within the appropriate range and adjust my supplements if necessary.

You can make kefir yourself - it's very quick and easy once you get into the habit, though I suggest to buy some ready-made first to make sure you like it. If you want to buy the grains, look for milk kefir live grains (you can also buy water kefir but I don't know if that's as good for osteoporosis and you have to add sugar to it, which isn't ideal).

If you're getting even small amounts of indigestion from AA it's worth going back to your GP and asking to try something different. The next one they try is Risedronate, which is also a bisphosphonate, but supposed to be gentler on the stomach. If that fails you could ask for an injection which bypasses the stomach. My GP said if risedronate didn't suit me she'd prescribe me a proton pump inhibitor (an antacid), but these are known to increase the risk of fracture, as is any long-term use of any antacids containing aluminium! (I took risedronate for a year, during which time my IBS got progressively worse. I'm now using the diet, exercise and supplements approach and hoping for the best!!!) I found the following about the 3 main groups of medications that may increase fracture risk, which you may find helpful: betterbones.com/bone-drugs/...

I don't think there's an osteoporosis department at our local hospital, but I have the option of asking for a referral to an orthopaedic consultant on the NHS.

It's quite a minefield, isn't it?! Let us know how you get on.

Timothy0172 profile image
Timothy0172 in reply to Met00

Dear Met00

You’ve given me so much more information and have helped paint a picture of what to do as have other responses.

Yesterday I contact my other consultant who said my readings aren’t good but it’s not his specialism of course. As my husband has private health care I am going to find out today if I am covered for visits to an osteoporosis specialist which I have found in London. His name is Anthony Hammond but I haven’t looked him up yet.

As I have so much other medicine I take it might be good to have a very accurate picture of what’s been happening and whether my medication has contributed in some way. For example, I have hypothyroidism which means I take levothyroxine and until recently took that drug that is unbelievably expensive, called liothyronine. It was in the news a few months ago. My current consultant suggests neither of these hormonal drugs may have contributed to the osteoporosis so a review of everything I take is probably now a good idea. Beyond my GP. She is very fixated on budget as I cost the surgery so much already.

I have had some terrible experiences with the medical profession, the worst being misdiagnosed by an ENT specialist who didn’t realise my symptoms were the result of massive inflammation in my body and badly affecting all my soft tissues. I told him I had these other symptoms (which was subsequently diagnosed as a type of lupus) but he decided he should do an investigation of my vocal cords (I was a professional singer) and when he did he afterwards told me he had done a bit of gardening. He completely ruined my voice. It’s a long story - I didn’t sing at all for 10 years and my career was ruined despite some return to performing but with many constraints on my range. So I am explaining I don’t trust the medical profession much! Ultimately we need the help so we just have to be very aware - I learnt the very hard way.

I’ve got an appointment on Wednesday and I’ll let you all know how I get on.

Everyone’s tips have been brilliant - so before I go on Wednesday I’m also going to ring the NAS helpline some of you mentioned. Their perspective can only add to all your wonderful replies.

Sorry I’ve gone on a bit about the other stuff - I’m still affected by the change it made to my life 20 years on!

Thank you all. Bella xx

Met00 profile image
Met00 in reply to Timothy0172

Hello Bella. That's a really good idea to review everything! It's worth asking for all your blood test results too (the actual readings, not just whether they're considered "normal" or not) so you can check whether there's anything else going on that may be affecting your bones. For example if your Calcium and/or Vit D3 levels are low, this may be contributing to poor bone density. The NHS say a Vit D3 level above 50nmol/l is OK, but many experts say it needs to be over 75nmol. I was told that a reading of 47nmol in the autumn was "borderline normal" (and therefore no Vit D supplement needed), yet it would have dropped during the following 4-5 months so was actually too low. If that had been happening every year (more than likely), no wonder my bones were thinning!

So sorry to hear of your previous terrible experience with the medical profession, which must have been devastating. I hope you manage to get some informed information and support from now on.

Hi Bella

My GP prescribed me Alendronic Acid and Ad Cal after I was diagnosed with osteoporosis following a hip fracture. I tried it for a few months but it gave me a painful skin rash on my face and my hands ached!. I then tried risedronate sodium. It was a bit better but I still had the same side effects. I have since had a prolia injection which so far (touch wood!) has been ok. Good luck with everything

You may also like...