Protelos - Strontium Ranelate for Osteoporosis

elnafinn

http://www.nos.org.uk/page.aspx?pid=325&article=cc60bbe8-0e49-4f3d-b918-840027820b9e

Bad new for anyone (me included) who are taking Protelos for OP.

Elna x

daffy2

And it's a disaster for the credibility and integrity of the scientific and medical community as far as I'm concerned.
For those not 'in the know', on the basis of trials showing a 1.6% increased risk of non-fatal cardio-vascular incidents in people already suffering such conditions this drug has been withdrawn to virtually all patients. The best bit is that there was a 1.3% increased risk in the placebo group apparently! Go figure as they say - I'm not aware that there has been a call to remove the placebo used in the trials...
The problem for patients like Elna is that it is not one of a group of drugs - it is the only one in its class. Alternative osteoporosis treatments are completely different chemicals and work(or not) in a different way and those on this now withdrawn (except for 2 very small groups)drug got there for the most part by not being able to take them.

elnafinn

Thank you Daffy. That is exactly right and you explained it perfectly. I have only been on it for a few months. I could not tolerate the bisphosphonates. I tried two of them. I am interested in the two small groups you say will be able to continue to obtain this drug. Who are they please?

Elna x

daffy2

It's in the nos news item but the groups are"severe OP in post-menopausal women at high risk of fracture" and "severe OP in men at increased risk of fracture".
Once again the gender divide appears - women have to be at high risk, men just at increased risk....

elnafinn

Thank you Daffy.

Elna x

barbara12

Elna thanks for the link...I am sorry you will no longer be able to take it..I remember well how the other one made you poorly....hopefully you can either carry on with it or come up with a new one...I do feel for you...PS I am due to get a scan for OP... :roll: xx

elnafinn

Dear Barbara

I hope you will not have to join the OP club. Do let me now the outcome. I am wondering why it has been suggested that you have a dexa scan?
On further thinking, is it because of your back problems? Have you lost any height?

Love
Elna x

dachshund

Thank you Elna and Daffy
I don't know what I can take as I have a problem with tablets unless I can cut them.
joan xx

elnafinn

Hi Joan

There are injections on offer but I am not at all keen on going down that route because if one has side effects from the injection there is nothing one can do about it.

Elna x

barbara12

elnafinn wrote:

Dear Barbara

I hope you will not have to join the OP club. Do let me now the outcome. I am wondering why it has been suggested that you have a dexa scan?
On further thinking, is it because of your back problems? Have you lost any height?

Love
Elna x

Not lost any height Elna ..well not that I know of..but my pain clinic lady ask me about my mum...now she lost height but was never checked for OP not sure if they did this in the 1980s..she died in 1982..and she had awful lower back pain...so she has asked my GP to sought out a scan and these anesthetic patches for my back..but the letter hasn't arrived yet... :roll: xx

elnafinn

Dear Barbara

It is good that you are being checked out for osteoporosis or osteopenia. Hopefully you are ok but if not best to know now so that you can have a plan of how you choose to play it. The American forum has been of great help to me. Obviously the meds are called by different names to us bt you can soon google to find out the UK equivalent when people discuss them.

This is the website if you are interested: http://www.inspire.com/groups/national-osteoporosis-foundation/discussions/

There is a UK forum too but very small compared to the American one, where many nationalities call in.

The link is:
http://www.nos.org.uk/forum/

Love
Elna x

barbara12

elnafinn wrote:

Dear Barbara

It is good that you are being checked out for osteoporosis or osteopenia. Hopefully you are ok but if not best to know now so that you can have a plan of how you choose to play it. The American forum has been of great help to me. Obviously the meds are called by different names to us bt you can soon google to find out the UK equivalent when people discuss them.

This is the website if you are interested: http://www.inspire.com/groups/national-osteoporosis-foundation/discussions/

There is a UK forum too but very small compared to the American one, where many nationalities call in.

The link is:
http://www.nos.org.uk/forum/

Love
Elna x

Thanks Elna you are such a love...I will go and look at the link...xx

daffy2

Barbara you will find it well worth your while reading up about OP(but please be careful what sites you use, as with other medical conditions there are those out to exploit by fear and false hope). It is a condition that, like OA, is supposed to be managed by GPs. Since they are 'general' practitioners it is not reasonable to expect them to know chapter and verse, but the level of misinformation patients seem to be getting is unreasonable, not least because it can lead to a worsening of the condition. The irony is that in many cases patients can help themselves and improve outcomes effectively given the correct information, at little or no cost to the NHS. Anything that can prevent or reduce the impact of fractures has got to be cost effective for the public coffers, but you wouldn't think so once you are in the OP universe!

stickywicket

Whenever osteoporosis is discussed on here reference is usually made to US sites as being better than ours. I've looked at the sites mentioned and, frankly, find the experience akin to being battered round the head with a medical dictionary. I don't speak medic and, even if I did, I'm somewhat ashamed to confess I'm not that interested despite having osteoporosis diagnosed some months ago.

It would be a bit odd if I didn't have it. I tick almost all the boxes - RA for over 50 years, several courses of steroids not to mention steroid jabs, a steroid asthma inhaler and a steroid nasal spray, an early menopause owing to the chemo for breast cancer plus a mother who had osteoporosis.

My doc suggested alendronic acid. I read the insert and decided not to bother. I have oesophageal problems enough without assistance from alendronic acid. One dash to re-sus was enough to convince me that risking any compromise to my throat was not an option.

I take my two Calceos daily, get as much exercise as I can and eat the right foods (I see that, according to the link given, I'm under-achieving on the alcohol front but possibly drinking too much tea Wow! I can figure out a remedy for that 8) )

daffy2 wrote:

the level of misinformation patients seem to be getting is unreasonable, not least because it can lead to a worsening of the condition. The irony is that in many cases patients can help themselves and improve outcomes effectively given the correct information, at little or no cost to the NHS.

Daffy, I have a great deal of respect for your knowledge and I'd love it if you, or Elna, or someone in the know would actually tell us what the misinformation is and how to improve the outcome.

Roadback

My view is at the web gives us a world wide view and US experience is going to be of real use to us all - their opinions on forums are as valid as ours and because there are more of them perhaps there is a combined greater wisdom? I would have also thought that because many US sufferers who do not have medical insurance have to pay for their own drugs - so they can sometimes explore avenues that are not taken by mainstream medicine

I read some stuff about Strontium Citrate earlier having less side effects than the Ranelate compound. Also read that the balance with other minerals is crucial as strontium competes for absorption with other minerals.

Does any one have the new quoted side effect risk for Strontium and is the risk any higher than other drugs that are prescribed?

dreamdaisy

This is not unusual is it? Everything we take comes with risks, some suffer side effects and some don't so I think that this is the situation: these are all relatively new drugs so there is not the long-term history of use by anyone for any accurate or infallible data to be generated (inasmuch as anything medical can be either accurate or infallible). There is one enormous variation with every drug and drugs trial - the metabolism of those who take the meds. It is very frustrating and I empathise, Elna. I remember when my autumn and winter de-sensitising injections were stopped because two people had died after having them. I had three relatively good years when on them then the one following was sheer hell. I nearly died because I hadn't had the injections. :roll: I knew then that life was a battle where I would forever be on the losing side. DD

stickywicket

To the best of my knowledge, we're all on the losing side with that one, DD

Yes, you're right. Osteoporosis is relatively new, as are the meds. The NOS was only started in 1986 and they themselves say few docs knew anything about it at the time. I guess it arises as we live longer, more sedentary lives. If I'd lived in my grandmother's time I'd never have got it. The breast cancer would have seen me off long before I developed it and possibly, as aspirin would have been all that was on offer for my RA, that would have done for me even sooner. Maybe, for me, living to get osteoporosis is quite an achievement

dachshund

Hello Elna Sticky
I saw my doctor today he said I can stay on it I haven't got heart problems. if I did get anything wrong I would be straight off it that was his words.
joan xx

elnafinn

I put in a repeat script for strontium earlier than normal fully expecting my GP to add a note on my script to go and see him to discuss. Nothing. I came home with two months supply this evening. I am wondering if my GP has not caught up with the strontium discussions as yet........

I await with interest what happens in a couple of months when I put in yet another strontium repeat script.

Whatever the risks with SR there is unfortunately no other OP drug that I am prepared to take.

Something very fishy appears to be going on with the withdrawal of this drug. I think perhaps the general public are not being told the half of it.

Not enough is known about any of these OP drugs yet. We are the guinea pigs unfortunately as was my mother as well.

Elna x

dreamdaisy

GPs are bombarded with information and updates on so many drugs, in an ideal world they would read everything and be completely informed but we all live in the real world . . . . . My repeat scripts are issued by the duty script doc of the day which has yet to be my GP. I reckon there is a fair amount of back-covering by the meds manufacturers thanks to the increasing compensation culture.

I think it's best to focus on the here-and-now, not the what-might-or-might-not-be at some point in the future. If you can tolerate it, and it's doing its thing, then keep taking it, Elna. The quality of life now is what counts - well, that's my reasoning behind all the junk I inject and swallow. DD

Roadback

Looks as though Strontium is being investigated for RA treatment as well - as a rival to expensive TNF drugs...

This is from a study summary from 2013!

Strontium Ranelate as a NF-kB antagonist: Utilization for Amelioration of Inflammatory Diseases

Institution: Emory University

Summary
Applications

Repurposed therapeutic for use in the treatment of a range of inflammatory diseases.

Highlights

Novel use for widely available repurposed therapeutic.
New anti-inflammatory effects of strontium ranelate discovered; drug acts by blocking TNFa induced NF-kB activation.
Advantageous over expensive injectable biologics as it is cheap, safe and can be orally administered.
Technical Summary

Strontium Ranelate (SrRa) is an extensively used pharmaceutical for osteoporosis which works by stimulating bone formation and inhibiting bone resorption, thus helping to reduce the relative risk of vertebral and hip fractures. Researchers at Emory have recently discovered a novel NF-kB mediated mechanism through which SrRa can exert anti-inflammatory mechanisms, thus making it suitable for use in several inflammatory diseases that may or may not result in bone loss.

Conducting experiments in two mouse cell lines, Drs. Weitzmann and Yamaguchi have demonstrated that SrRa can block TNFa induced NF-kB signal transduction, thereby promoting bone formation and suppressing bone resorption. These data support the development of SrRa as a novel therapeutic for the amelioration of inflammatory diseases, particularly those that involve bone loss such as rheumatoid arthritis

TNF Inhibitors are commonly used therapeutics for inflammatory and autoimmune diseases. These include monoclonal antibodies against TNF which are expensive, need to be injected and may present some serious side-effects. The use of SrRa as a novel TNF Inhibitor in is may be advantageous as it is cheap and can be delivered orally.

elnafinn

National Osteoporosis Society via FaceBook (two hours ago)

Update on safety review of Protelos / Osseor

The recommendation of the Pharmacovigilance Risk Assessment Committee (PRAC) that Protelos and Osseor should no longer be used to treat osteoporosis is still under consideration by the CHMP. At its January 2014 meeting the Committee requested additional information from the company to inform its scientific decision-making. A final opinion will be made by the CHMP at its meeting in February 2014.


Elna

dachshund

Hello Elna
I had a letter from my doctor yesterday he said European medicines agency published guidance suggesting that strontium should be removed from the market. in this light I have removed this medication from your repeat prescriptions list with immediate effect.
I have an ap to see him on Friday.
take care joan xx

elnafinn

Dear Joan

If my GP had informed me that he had withdrawn SR from my repeat prescription I would have copied the latest information on SR that I posted above and shown it to him.

In my opinion, GP's have NO right to stop issuing prescriptions for SR at this stage.

I shall be very interested to know how your appointment goes with your GP on Friday, Joan.

Love
Elna x