 Posted 09/07/2010 03:21:51
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Hi, I am a new member. I have osteoporosis and am 50 years old. I discovered that I had osteopenia a couple of years ago and tried adding extra calcium to my diet and more weight-training exercise. Unfortunately my yearly DEXA scans continued to get a lot worse so this year with a diagnosis of osteoporosis and a high fracture risk of the spine reluctantly had to make a decision to take drugs. I researched as much as I could - I didn't want to take HRT as both my mother and sister have had breast cancer. After reading about Boniva I was unhappy about all the side-effects. I have started taking Strontium Ranelate and so far have taken it for a month, even though it is difficult to take in the evening before bed with the two hour break of calcium-containing food drink etc. I try and have a cut-off time every evening and finish eating by 8:30 pm and then take it at 11 pm. Social eating out makes it more difficult to comply when dinner doesn't finish until 10 pm or later but managing so far. Have heard that some people swop Protos 2g to mornings but understand that this can't absorb as well as I take calcium and Vit D3 supplements during the day. I am interested to hear how other people are getting on with Protos, what side-effects they have experienced and what happens after they have taken it for five years as I can't find much information on how long it is safe to take long-term.
Edited: 09/07/2010 04:15:32 by Mariannehk
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Posted 09/07/2010 08:02:37
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Hi,
Welcome to the forum !
I take Strontium Ranelate (Protelos), I've been on it now for nearly three and a half years. No side effects ever. I cannot take it in the evening because I am diabetic and need to eat just before I go to bed so I take it in the middle of the night. This is no problem for me as I always wake up during the night several times. I have the Protelos ready so I can just pour it in the glass and add water without me even turning on the light. I've never missed a dose - I suppose that says something about my sleep 
There's a Strontium Ranelate Patient Support Programme that you can join www.protelos.co.uk/Patients You can talk to a nurse about Strontium Ranelate, any problems you have with it, and any concerns about osteoporosis. You also get a magazine with articles about osteoporosis....I've been sent two since I joined just over a month ago. You can register by calling a freephone number: 0800 678 5608
I once asked how long the patients in their research have been on Strontium Ranelate and it is currently eight years ! And they are having no adverse affects from eight years on it so I find that reassuring because, like you, I wonder how long we can stay on this medication.
In addition to taking Strontium Ranelate I have a calcium rich diet - I react badly to calcium supplements so cannot take them - am also intolerant to dairy so I get all my calcium from other sources (sardines, leafy green veggies, nuts et). I also try to have an alkline forming diet so calcium isn't leached from the bones. I take a high dose vitamin D3 supplement (2,000IU per day). I also do lots of weight bearing exercise, weight lifting at a gym twice a week, walking every day and exercise on a vibration platform twice a week.
My bone density has increased 
Annabel Lee
Diagnosed with osteoporosis on Strontium Ranelate, vitamin D, also diabetes on Repaglinide. Diet and exercise for both conditions too.
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Posted 09/07/2010 15:15:31
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| Hi Mariannnehk, I just wanted to point out that the number above is supplied by the pharmaceutical company that produce Protelos and designed solely for those taking the drug. For impartial advice on the range of treatments available for osteoporosis, the National Osteoporosis Society helpline nurses are on hand to answer your questions from Monday to Friday 9am-5pm. You can call them on 0845 450 0230. Thanks Rob Senior Communications Officer for the National Osteoporosis Society
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Posted 12/07/2010 04:25:34
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| Hi Annabel, Thank you for your reply, it is nice to meet someone on the same medication. At present I am living in Hong Kong (am English)and I don't have contact with anyone here who has osteoporosis. Here it is something that I have to cope with by myself - not being a Cantonese-speaker, and getting my medication through my GP, rather than going to a Government Chinese clinic. I actually have my DEXA scans in Thailand, so I read on the Strontium Ranelate sites that I will have to tell the X-Ray department to make some adjustments to the bone density calculations as this is a heavier element than calcium and can lead to an inaccurate report on how much bone gain I will get through the drug. I suppose asking the technicians to do this is not a problem in England? A pharmacist here told me that quite a few people are swopping to Protos - as it is called here - as they react badly to the biphosphonates which appear to cause bone pain. Getting Vitamin D3 through sunshine is a problem here at this time of year as sitting in the sun rather than the shade - the temperature is at least 35 degrees - so ten minutes is a boiling hot experience. I am interested to see when I have my Vit D3 levels taken in August whether there has been any improvement.
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Posted 12/07/2010 04:32:14
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| Hi Rob, Thank you for your post. I guess that living in Hong Kong at present that I will not be allowed to make use of the help-lines, but I will see if I am able to access the website you recommmend as it will have updated information on strontium ranelate that will be interesting.
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Posted 12/07/2010 09:10:11
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Hi Marianne - our Helpline is open to anyone, we often get international calls. I'm not sure about any other helplines.
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James Hobbs
Electronic Communications Officer
National Osteoporosis Society
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Posted 12/07/2010 21:03:19
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Mariannehk (12/07/2010)
I read on the Strontium Ranelate sites that I willhave to tell the X-Ray department to make some adjustments to the bone density calculations as this is a heavier element than calcium and can lead toan inaccurate report on how much bone gain I will get through the drug. I suppose asking the technicians to do this is not a problem in England?
Hi Mariannnehk, you would think not. Think again ! Before I had my follow up DEXA scan I was assured by the NOS helpline nurse that all radiologists know that adjustments need to be made on DEXA scans when a person is on strontium. When I went to an NOS conference (which was great btw ) a nurse there assured me too that radiologists know the adjustment needed. So when I went for an 18 month follow up scan I wrote down on the paperwork that I was taking Strontium Ranelate. I also wrote a covering letter in which I stated that I was on strontium which I gave to the technician and which she attached to the scan results. Imagine my complete dismay when I read a copy of the DEXA report - the radiologist had not made any adjustments at all ! I immediately telephoned the x-ray department and eventually got through to the radiologist and explained as diplomatically as I could that she should have made an adjustment - honestly I really didn't feel very comfortable telling a consultant doctor what they should do ! She then contacted the pharmaceutical company that make Strontium Ranelate and a couple of weeks later she wrote a new report. In her new report she acknowledged that strontium has an artifactual effect on bone but that she could not give an accurate score but that after three years Servier said that roughly 50% of change is real and 50% artifactual. I was none too happy that a consultant radiologist in a London hospital couldn't interpret the DEXA scan properly.
But at least I knew that my bone density had increased even if I didn't know by how much. I suppose that with future DEXA scans - if the radiologist isn't prepared to give an accurate assessment - that I mainly need to know that my bone density is increasing relative to any previous DEXAs and that the change in density is approximately 50% real and 50% apparent relative to the very first DEXA. And that I haven't fractured of course - that is the ultimate test !
I get my level of vitamin D tested in two weeks time. My current level of 25OH)D is in the optimum range but even on 2000IU D3 per day, with additional sunshine and D rich foods such as oily fish, my levels of 25(OH)D can fall or rise a very large amount in just a couple of months so I am retested several times a year.
Annabel Lee
Diagnosed with osteoporosis on Strontium Ranelate, vitamin D, also diabetes on Repaglinide. Diet and exercise for both conditions too.
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Posted 13/07/2010 03:25:55
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| Hi Annabel, Thank you for your informative post. I can download and save on the computer from Servier an information sheet for technicians on how to adjust a DEXA scan for someone taking strontium... it all looks rather technical! I personally would like to have an accurate report after all the hard work of taking the strontium, pulling weights in the gym and increasing calcium and Vit D consumption. I feel in a way I am conducting my own clinical trial and want to see the results of all my efforts. Meanwhile it is interesting that Strontium is not licensed in America yet some people would like to try it and are reduced to buying natural strontium supplements from healthfood stores. Do you know why it is not used there?
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Posted 13/07/2010 10:36:13
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Hi Mariannehk, I'd love a link to that download for DEXA adjustments if you can post it or tell me where I can find it please.
The reason that the FDA haven't approved Strontium Ranelate for Americans ? If you do searches about it, it would appear to be that the other pharmaceutical companies in the US do not want the competition. Here is a discussion from a US site: Strontium Ranelate in the US Scroll down the page.
There is now an American pharmaceutical company, Osteologix, developing a medication called Strontium Malonate which is like Strontium Ranelate but with Malonate as the salt. Since it's an American pharmaceutical company it could be that because Servier, who make Strontoum Ranelate, is French, that there have been problems with approval since there have been trade problems between the US and France.
Annabel Lee
Diagnosed with osteoporosis on Strontium Ranelate, vitamin D, also diabetes on Repaglinide. Diet and exercise for both conditions too.
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Posted 14/07/2010 05:51:39
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| Hi Annabel, I have bookmarked your American forum site for future reference. These are the sites that I have so far bookmarked regarding DEXA Scan measurements when taking Strontium Ranelate. Any more I will let you know. 1. This one is useful: http://www.osteopenia3.com/Strontium-dexa-scan.html 2. http://www.rah.sa.gov.au/nucmed/BMD/bmd_docguide.html If only the homepage turns up scroll down to Information for Patients, select Health/Clinical and select the choice Bone densitometry. When that comes up - under bone densitometry select Doctors Guide. Sorry not an easy page to find but it does mention Strontium Ranelate! I have also downloaded Exercise and Fracture Prevention A Guide for Consumers through Osteoporosis Australia www.osteoporosis.org.au They have a lot of useful downloads .
Edited: 14/07/2010 06:12:37 by Mariannehk
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