Hello everyone

[Osteorennie]

Just wanted to say Hi and introduce myself. I was diagnosed with osteoporosis in my spine and osteopenia in my hips 8 years ago following a skiing accident in which I broke both ankles. For the last eight years I have been taking a weekly Risedronate 35mg tablet and a daily vit D supplement. Have had three Dexa scans since diagnosis and although no improvement, there has been no further deterioration and (fingers crossed) no broken bones! I have experienced no problems taking the medication and am fortunate to feel very well in all other aspects. However, I am concerned at the length of time I have been taking Risedronate as was originally told I would be on it for a maximum of 5 years! Have spoken to both my GP and healthcare worker and have been told that I am better to continue taking the medication and that there is disagreement within the medical profession as to the pros and cons of stopping or continuing. I was left feeling it was up to me what I should do. I have recently undergone dental treatment and was told by my dentist that if the tooth had needed to be extracted, there was no way this could be undertaken without coming off the drug and having monitored blood tests and maybe even going into hospital for the extraction. This has now sent alarm bells ringing as my dentist was alarmed at how long I had been taking the drug. Sorry for the long winded post and would welcome any advice. Many thanks, Susan

[Met00]

Hello Osteorennie. It's worth reading other posts on this Forum as there are definitely mixed views about the value or otherwise of bisphosphonates, although there is evidence that in the short-term they can reduce the risk of fracture. I've found these NICE guidelines, which you might find helpful, particularly as it says to take risedronate for UP TO 7 years! cks.nice.org.uk/osteoporosi... :

(For all except those taking oral steroids), review the need for continuing treatment with bisphosphonates after 3-5 years.

There are lots of posts on the forum too about alternative approaches to treating osteoporosis (apart from medication) - weight bearing exercise, diet and supplements - which some (but not all) have found to increase their t-scores.

It's got to be your decision, but I'd personally seriously consider having a break from bisphophonates, especially as there is some evidence that they continue to work in the bones for some years after treatment stops.

Best wishes

[Osteorennie in reply to Met00]

Thank you Met00. Really good advise and I will research other posts on this forum. I am not very tech savvy but have already started to work my way around this site. Yesterday, I was alarmed that my photo came up so large on my post, tried to find a delete button but couldn't, really wished I'd chosen a cute puppy picture! Sure I'll get the hang of it in time. Will take a look at the nice-org site also. Will then make an appointment to chat with doctor armed with some knowledgeable information. Kind regards, Susan

[Kaarina]

Hi Osteorennie,

In my opinion, you are right to be questioning whether you should be having a "drug holiday" or not after being on risedronate/another bisphophonate, for eight years. I believe it is now thought that 3 - 5 years maximum to be on these drugs and then a break, to be discussed with a medic. You only mention taking Vitamin D so I presume you obtain the daily calcium requirement through your diet, like I do. Do you do weight bearing exercises on a fairly regular basis?

I have heard of other dentists saying exactly the same as your dentist. I have a feeling they have an added interest and concern being as they need to be careful when working on people's teeth depending on the type of treatment required, when patients are taking osteoporosis drugs.

You could give the NOS helplines a call and speak with a nurse. Tel: [phone]

[Osteorennie in reply to Kaarina]

Thank you Kaarina. I am not taking any calcium supplement and not sure why, as it has never been mentioned by my doctor. I do try to get lots in my diet but not sure what the recommended dosage is. Glad to say, that coming on this site has been a wake up call for me. It is now time I took control of my own fact finding and this is an excellent forum for me to research. Thank you also for the contact number. Will give them a call as I am very concerned end about the advise given by my dentist.

[Met00]

You're also entitled to having your calcium and vit D levels checked, so it might be worth asking about this. Although the NHS recommendation is that vit D levels should be over 50nmol/l, many experts recommend at least 75nmol/l and some say over 100nmol/l. There's growing support for a level between 75 and 100, with some expressing concern if it goes much over 100 - depends who you believe! I only take a small calcium supplement as I get most through my diet and am trying to increase my dietary intake so I don't need to supplement at all. Make sure you're given the adjusted (serum) calcium level if you do get it tested as that's the one that counts. It should be between 2.25 and 2.65. I get mine checked 3 times a year, although my GP was a little reluctant to allow that! I take a vit D supplement all year round, but on the advice of a private orthopaedic consultant I take 3 times as much in the winter months to keep my levels up (800iu mid-April - mid-Sept, 2400iu the rest of the year). I might be able to reduce the supplement slightly eventually as my readings are rising, but it's taken me 3 years to get my level from 47 to upper 70s (I'm aiming for nearer 100 if possible)!

[Kaarina in reply to Met00]

Hi Met, my vitamin D level is good, over 100 but I do eat a lot of sardines. The doctor is happily surprised at my Vitamin D level. My GP prescribes Vit D capsules for me. I hope I get the adjusted (serum) calcium level when tested. I have two results on the last report given to me, Calcium (2.34) and Corrected Calcium (2.36) results.

[Met00 in reply to Kaarina]

Hello Kaarina. Sorry, the above comment was intended for Osteorennie - probably my mistake! But I was interested to hear how high your Vit D level is - how much Vit D supplement do you take?

[Kaarina in reply to Met00]

Hi Met, I knew that your reply was not intended for me but it interested me. I just hope that I too get the correct calcium test done along with all the other tests including the Vitamin D test. My GP prescribes Vitamin D3 800u caps for me. My Vitamin D level when last tested in October 2017 was 123.2. It was a similar result when tested in April 2017 too.

[Met00]

Hello Osteorennie. I seem to have replied above to Kaarina instead of you, so I wonder if you saw my comment about getting your Vit D and calcium levels tested?

[Osteorennie in reply to Met00]

I did see your post Met00 and think 🤔 I did post my reply to you. Still finding my way around this site so apologies in advance if I haven’t ☹️

[Met00]

Yes, you did reply Osteorennie, but I posted again to you and wasn't sure if you'd seen that one. Do you know what your calcium and vit D levels are? I hope you find the NOS helpline nurses helpful. It's also possible to email them, which I've done on a couple of occasions and found very useful. I think they got back to me very quickly.

[Osteorennie in reply to Met00]

Hi again Met. I have never been told by the medical profession what my vit D and calcium levels are. The only thing I was told by my GP, is that my body does not absorb Vit D, hence why she prescribed a vit D daily capsule. I am presently in Portugal where I spend a lot of time ( another reason the Doctor couldn’t understand my deficiency) as get lots of sunshine. I am going to e-mail the NOS helpline, as you suggest, to address my concerns. I am also going to make an appointment with the surgery to get my Calcium and D levels checked later this month. Thank you so much for all the sound advice. Will let you know how I get on going forward.

[Met00]

Hello Osteorennie. That must be so frustrating to get all that sunshine and not absorb Vitamin D! But it may be that the sun isn't high enough in the sky from late November to mid-February - see for example vitdco.com/pages/sunsense (read the last paragraph of the first section then scroll down to the section on Southern Europe). The surgery should have your Vit D levels on record from when you had it tested before starting on a supplement, so you might find it helpful to ask for that reading so you can see what difference the supplement has made. Good levels of Vit D are necessary for bone health, especially for absorbing the calcium our bones need. Most people can get enough calcium through diet, so again it's helpful to check calcium levels - make sure they give you the serum adjusted reading (basic calcium reading adjusted for amount of protein in the blood).

Enjoy the rest of your stay in Portugal!

[Osteorennie in reply to Met00]

Thank you Met. As you say, although sunny here in Portugal, rays are not as powerful as during the summer months, although I am planning on spending more time here during the summer. Will be interesting to see what my vit D level is. Will check out the article on sunsense. The two Scans I had (7 and 3 years ago) were taken on different machines as we had moved from the north to the south of England. Going to ask the Doctor for another and hopefully will be on same machine as my last one. Feeling much more empowered with all the information and advice I have received. Many thanks once again.