New drug research

[corcho]

I was just surfing through some YouTube videos and stumbled across one about a new drug which is in the 'testing' stage. It'll probably take several years before it's deemed safe for use, but it sounds promising. flowbone.com Apparently it can be targeted towards specific bones, ie weaker bones. The injections are in gel form and stimulate new bone. Residue is absorbed without any after effects, therefore greatly reducing side effects. Fingers crossed that this is available sooner rather than later. 🤞

[Chocolate579]

I have read that melatonin could be good for osteoporosis - and it has far fewer side effects. I wonder if it could be a possible treatment one day?

DEXA scan tomorrow - have been worrying about it for days!

[corcho in reply to Chocolate579]

Is melatonin also used for insomnia? I wonder what the link is.Good luck with the Dexa and keep us posted.

[Graceissufficient in reply to corcho]

Melatonin helps you fall asleep, not mecessarily stay asleep, but it can be helpful. A natural hormone, it seems pretty safe, and there are studies saying it is directly involved in bone turnover.

Search Osteoporosis and melatonin mayoclinic for a discussion. Possible that it is contra indicated in autoimmune conditions or maybe just RA.

Only available in uk on prescription, but can be got over the counter in USA and some European countries.

Seems to me common sense that if we have sleep problems bones might be affected. Not expecting any big research to be funded on this non patented cheap substance though.

[Graceissufficient in reply to Graceissufficient]

Just read a bit more because I'd rather do that than wash up.

Dr on hypothyroid and melatonin saying take v low doses - not a treatment where more means better. Makes sense to me ... melatonin can seem really helpful in autism, then suddenly stop, perhaps that 's an overdose effect.

Tiny amounts then.

[CinnamonRose in reply to Chocolate579]

Don't be worried, you only have to lie in a bed, or is it the results you're worried about? Just don't wear anything with metal and you wont even have to get undressed, let us know how u get on xx

[CinnamonRose]

Sounds wonderful. I wonder if they want any guinea pigs, I'd be willing to try!! It's about time that the medical establishment sat up and spent more money on Osteoporosis cures, don't get me wrong, I've friends with cancer and it's a terrible disease but I often wonder if, because Osteoporosis doesn't kill you, they sideline it, yet in some ways it's every bit if not even more disabling and they honestly seems to be little they can do to help. Thanks for posting, it's nice to see that someone has found something that's positive xxx

[Fruitandnutcase in reply to CinnamonRose]

“I often wonder if, because Osteoporosis doesn't kill you, they sideline it, yet in some ways it's every bit if not even more disabling and they honestly seems to be little they can do to help”

I think it’s a neglected area because in the past it was something that mostly happened to elderly women and there wasn’t much to be gained financially for drug companies to come up with new treatments.

I think a lot more needs to be done to educate people from a much younger age about how to look eat well and exercise to look after their bones.

I think people (doctors included) need to be made aware of the effect that various commonly used drugs - steroids and PPIs to name but two and also medical conditions - overactive thyroid, RA, hyperparathyroidism can have on their bones at a point where they can act to help protect their bones.

Excuse the rant but I feel really strongly on this subject.

[Haz58 in reply to Fruitandnutcase]

Totally agree Fruit! I was put on omeprazole donkeys years ago for gastric reflux, 20mg a day then I was told 10 years ago by doc it was a high dose and I should try to lower it. I went onto 10mg no problem. Then if course RA kicked in and steroids and told to up to 20mg twice a day. After a year I got a mid back vertebrae compression fracture, no idea how I did it. Then I found out how bad omeprazole is for one density. Now I check every med I'm given and their side affects. RA meds are a must though so we just have to see how we react with each one given. Mostly not good in my case with side affects for the first 2 years.

[MaggieSylvie in reply to Haz58]

OMG, that stupid GP prescribed that for me and I was on it for years. I'm now on Lansoprazole but no idea why my new GP changed the prescription! Now, perhaps I know - 7 compression fractures later. I think the Denosumab injections are helping with bone-strength. I also take Colecalciferol.

[Haz58 in reply to MaggieSylvie]

Omg 7! They are soo painful! I feel for you! 1 was and still is bad enough. 😔

[MaggieSylvie in reply to Haz58]

They are incredibly painful but it's only the latest one (from Feb 24) that gives me problems, and even that is healing. Still, the first one, T4, happened after a fall due to slippery mud, and that GP never thought to send me for an x-ray. Then I got more, and that was when the first one was discovered. There's not much in the way of a cure for someone of my age.

[Haz58 in reply to MaggieSylvie]

It took me 3 weeks to get an x-ray I kept being told it was muscular. Even after an ambulance too me to A & E and the only way I could move was with gas and air. I ended up calling my Rheumatologist begging her to help me. She got me an x-ray immediately and I had a T9 compression fracture. I was just told to rest, sleep on my back and given morphine in various forms.

[MaggieSylvie in reply to Haz58]

I've never had a rheumatologist for my back! I've been to A & E at least twice, and the same "doctor" told me I had no new fractures. He then told me what I had, and I said "What? T12? I was never diagnosed with that! The same thing with the previous one - T11. Then the young girls who carried me on a stretcher, just let the back down without warning and then asked me what was the matter when I cried out! They had also earlier been judgemental when discussing me, thinking that I was maybe deaf.

[Haz58 in reply to MaggieSylvie]

That's dreadful. I have rheumatoid arthritis so she was my last hope. She was disgusted no one has sorted an x-ray for me and apologised profusely for her NHS colleagues.

[MaggieSylvie in reply to Haz58]

That isn't good. I have OA, but in my knees. I have no idea whether it is getting worse, as when I was in extreme pain, I was told it was mild OA. The doctor looked affronted when I yelled, "MILD??!!" I'm used to some pain now. It's nothing compared to the compression fractures, though I did have an episode with unbearable pain, when that GP yelled, "You're having a FLAIR!" I was unable to get out of the car to get a flu injection but nothing at all was done to help me. I asked for a wheelchair but was told they didn't have any.

[Neonleon in reply to Fruitandnutcase]

My Mother died from osteoporosis, bones were like cheese and one fracture too many.

[rockingseventies]

Yes, I saw the video about Flowbone too (Sarah Mapes on the Bone Builder system). It does sound promising. She's worth following for her help and her manner of presenting.

[corcho in reply to rockingseventies]

Yes, I like Sarah Mapes. Although she favours a natural approach through diet and exercise, she doesn't dismiss drug therapy so she has a good balance of information.

[dog45678]

It is bone strength that is important, not bone density. Please ask for your bone strength (fracture risk) and check the rules of Densitometry have been followed. Wishing your strong bones and pleasing results.

[gerrirose]

very interesting!

[dcdream]

Thanks for sharing. This has promise. Hopefully, it can be used as well without combining it with a regular osteoporosis med. Although from other research articles about it, they said perhaps it will lessen the amount of time one has to take their osteoporosis meds.

[G0riLLaJamb0]

Hi, there are so many relevant points raised in these replies to Chorco. I absolutely agree with Fruitandnut about educating people about bone health, especially from an early age. Our lives are sedentary in so many ways and when you learn that your muscle mass, collagen starts to decline in your mid 20’s, not to mention the drastic decline in hormones at the peri/menopause stage of life, then you wished you had been educated about this at a young age to make sure you were well prepared to help prevent the inevitable bone density/bone quality loss that so many of us experience later in life. Unfortunately, it is still not talked about enough.

I had my second REMS scan last Friday and if you are able to get a REMS scan, they are worth it. It’s a bonus that you can discuss the results when the scan has been done and the results have been calculated on the computer so quickly. I was happy to learn that my density is stable from last year’s scan and my bone strength is good, which is also a huge bonus with REMS, that it calculates your bone quality score (fragility score) as well as the bone density, and it’s the bone quality that is the most important. I think it’s important that there is an alternative means of scanning with REMS that is gradually getting a name for itself. DEXA has been around for decades now and as new technologies evolve with more up to date means of getting a wider picture of your bone health, that has to be a positive thing.

Here endeth my thoughts 🤗. Good luck everybody with your bone health journey. It is a much underrated condition and needs to be out there and talked about far more than it is. The ROS do a fantastic job in flying our flag though. xx

[corcho in reply to G0riLLaJamb0]

I agree that awareness of bone health needs to be raised from a young age. I have alot of interest in sports science and this has come such a long way in recent years. The importance of exercise to maintain muscle mass can't be stressed enough. Muscle also contains protein which helps immunity.When I went through the menopause there was that infamous cancer scare (based on a flawed study) so women were discouraged from taking it and doctors reacted with a knee jerk reaction. I wish I knew then what I know now but let's hope that medical science and knowledge continues so that future generations can benefit. Education and awareness rule! 💪

[G0riLLaJamb0]

I totally agree Corcho. The way that osteopenia/osteoporosis will get the publicity that it deserves is through investing in educating from a young age about bone health, about how complex it is, but what we can do to help prevent it. Exercise and diet are key. Like you, if I knew back then (in the 1970’s/80’s), what I know now, I would have invested much more time in exercise and having the knowledge about what benefits a good healthy diet can provide for the years ahead. But you think you are invincible in your teens and 20’s.😂 I know there are other factors at play that can cause low bone density, despite investing in a healthy lifestyle (needing to take certain medications for other conditions, to name but one), but if you can start as young as possible with a healthy lifestyle, then that could go a long way in preventing other conditions arising. I was diagnosed with osteoporosis nearly 9 years ago now, post menopause, and it has really changed my perspective on how I live my life and although I try not to worry about what the future may bring, I can’t help but wonder. That’s why new innovations and breakthroughs on how this condition is diagnosed, treated, and talked about are vital. Good luck with your research in sports science Corcho 👏. This is a good forum to ask and to talk things through.