Spine -3.1 Femur -1.8 (I think they said total femur -1.6)
After being told by a GP last week that I was borderline, "my" GP told me today that he thinks I should start alendronic acid immediately for 3 years. (I am 55). It is scaring the hell out of me if I am honest. His reasoning was that, if I can't do anything about in the next 3 years alone, we have lost that time. His knowledge sounded pretty good as he was telling me about studies and trials in the US. We are in UK.
Hi, The score in the spine is quite low for your age and does warrant treatment to reduce your risk of more fractures.It does sound like you have a good GP who is showing an interest and is up on things.
I have to agree with his advice, don't wait for things to get any worse do something about it now while you still can.
I would not reccomended going down the natural route with a score like that,on its own it would not be enough.
Having said that though it is very important to take all the supplements and maintain a good diet. Be very careful with the excersise and as you were saying in your previous post it may be a good idea to think hard about your employment.
All the best with your treatment, it is daunting but you have time on your side to do as mch as you can to increase your bone density.
I'm really interested to see what everyone else's scores are....so I have something to compare it to
Hi, I have looked at the records of my scans .
At your age my T score was -3.5 which puts you lower than I was.
My last scan was taken 16 months ago and was -4.7 .
It is very diffcult to compare with others because of factors like body size and bone strength ( bone density is only a rough indicater of bone strength)
I am expecting me next scan not to be good as I have now been off treatment for almost 2 years .and had 3 more fractures. This is because treatment was held off owing to other health issues and then covid.
This is a terrible disease, put your faith in your doctor it sounds like you have a really good one. For a doctor to spend time with a patient like yours has, is very rare these days.
One last thing I would like to say is I am now disabled and a wheelchair user, I have lost my independance and much more to osteoporosis, and live each day in pain.
This is not feeling meant to scare you or feel sorry for myself, it is my way of trying to raise others awarness not to end up like I am at 66 years of age.
Take good care and stay safe
3.5 is a more serious reading than 3.1, just to clarify your statement above.
Thank you HeronNS,My choice of words made my reply confusing to members who are not familiar with the scoring.
Yes the greater the number the lower the bone density.
Thank you for pointing it out.
One thing I forgot to mention is after I had a 2 year course of forseteo I felt so poorly I did not want to follow on with another treatment.
I asked for a complete drug holiday as I wanted a break from all other treatments.
I was advised not to, but did not take the advice given to me.
As a result my bone density plummeted and I never recovered the bone I lost.
This shows how important it is to once starting treatment to continue with it.
Thank you, most helpful info 😄
The two drugs which are comonly prescribed which have rebound effects after discontinuing are teriparatide (forteo or forsteo) and denosumab (prolia). The former promotes bone growth and is only licensed to be used for two years, the latter damps down the removal of old bone. Discontinuing bisphosphonates on the other hand doesn't lead to rebound osteoporosis as the substance remains in the bones, as far as we know indefinitely.
I was diagnosed at age 58 with t-scores of -3.2 spine and -2. 3 hip. 3 1/2 years later a further DEXA scan gave scores of -3.6 spine and -2.5 hip. However, I then learnt that a large difference between hip and spine scores may indicate an error in one or both measurement. I subsequently had a REMS (ultrasound) bone scan, which is more reliable than DEXA because it isn't open to operator and other errors. That gave both my scores as -2.6, scarcely into the osteoporosis range 5 years after initial diagnosis. In view of the discrepancy between your scores, if you're able to afford a REMS scan and there's a clinic you can access, I'd really recommend it. Here's a link to one of the companies that does them: osteoscanuk.com/. If you click on the Clinics link, you can see where else they run clinics. There's another company based in Bedford. This shouldn't be confused with ultrasound heel scans, which aren't an accurate way of assessing bone density.
I agree with sunseaandsand. I was taking Alendronic Acid along with Adcal chews for quite a few years as I had a few fractures in my toes, foot, ankle etc. I was taken off AA in 2017, now I have Denomusab injections twice a year since fracturing my spine after coughing. My opinion is your GP is taking an interest in your wellbeing. ☺️
Best wishes to you.
That is what I initially thought, however, he told me I could take AA anytime of the day, with or without food! The GP I spoke to yesterday, told me I could take AA for 10 straight years!! Question everything
I was diagnosed with osteoporosis 6 months ago and after a scan (spine 3.6 and hip/leg 2.5) was advised to take alendronic acid and high dose calcium with vit D. I feel absolutely well on the treatment with no issues. I would say it’s worth trying alendronic acid. I take it in tablet form once a week, as soon as I get up then head for the shower. You are supposed to stand up/sit bolt upright for half an hour after taking the tablet but you don’t have to stand on the spot, you can walk around, shower, dress, dry your hair - get ready for work......
I presume those scores have a - in front of them? How much water do you drink with it?
Hi, I feel for you - I’ve just been diagnosed with severe osteoporosis with a T score of -4.6 at the spine. I’m 49, postmenopausal and a coeliac. I’m gutted; I started AA today after been petrified about taking the medication. So far, so good, fingers crossed. My GP has talked about me needing a yearly IV infusion and I’ve been referred to my local metabolic bone clinic.
I wish you the best, it’s very scary isn’t it.
Hi, I'm really sorry to jump in your thread stockport, but I'd like to ask Madmax how long ago were you diagnosed Coeliac if you don't mind. I am newly diagnosed with this, although like many, I suspect that I've had it for years. I fit the criteria for osteoporosis and asked my GP and have been referred for a dexa scan.
Hi
I’ve not officially been diagnosed as I refused an endoscopy but a blood test confirmed it pretty much last year but I was ill for about 2-3 years before that, it was very gradual though.
I really hope your dexa scan is ok. I was gutted when I got the results of mine! I’ve been through an early menopause as well plus I’m really slim, all risk factors
Thank you for responding - I really appreciate it, and I'm so sorry that you are having to go through this. My history is very similar to yours - menopause at 45-6yrs. I didn't query HRT with the GP until I was diagnosed Hypothyroid at 48, by which time the GP told me it was a bit late. My BMI is probably a bit better than yours - I'm slap bang in the middle, and I'm older than you at 61.
Like you, I think I've been coeliac for at least a few years - probably longer. My bloods ie Serum Alkaline Phosphate @ 90% through range & Serum Gamma GT @ 30% through range indicate a bone problem. GP has referred me for a Dexa Scan - it will be a long wait. In the mean-time I'd like to 'follow you' if you don't mind.
Awful isn’t it ☹️ I know there’s worse things but I felt quite depressed when I got the diagnosis. I’ve had no reaction to the AA thankfully so that’s something.
I’ve been referred to the bone clinic but goodness knows when the appointment will be. Someone I know has throat cancer and her chemo has been stopped as covid takes priority! So I’m not expecting anything soon but I am thankful it’s ‘only’ osteoporosis in that sense.
I hope you get your scan soon, and by all means follow me. I’ll be more positive from now on!
My spine was -3.7 when diagnosed. I followed the natural route and 2 years later had improved to -3.Took no meds.
Of course, we are all different, and make our own choices.
All medics said I couldn’t do it..... but I did.
Best wishes with your decision.
Wow that is amazing - I’d love to follow the natural route but I’m not sure how to go about it and with such a severe T score I’m anxious not to take meds. Please let me know how you did it!
HiMy full regimen is on a previous post, headed ‘Amazing results....’ which can be accessed on my profile. I completely understand how you feel. I was also petrified. I was only a short while finished with cancer treatment......chemo, steroids etc. So, I took a chance, as I’d had enough drugs!
But, we have to make our own choices......and live with the consequences. Very difficult.
Best wishes.
Forgive my ignorance but what do you mean by"the natural route"?
No drugs.I used exercise, diet and supplements....
I have just had a very informative conversation with the ROS nurse. There are options available, if you are in the UK and are worried, I would recommend calling them
My situation was different to yours, which is why I’ve hesitated sending you a reply on this forum.
My femur reading was -3.5, spine -2.7 and hip -2.5 This was in 2010 after breaking both wrists in the same fall. I wanted treatment because both my Mam and Nan had OP and had broken a hip / femur between them.
I was given Alendronic acid by my GP, even though my previous medical history of a bleeding gut ulcer, indicated that it shouldn’t have been prescribed.
I had requested strontium but AA was the first line of OP treatment in the U.K.. I stopped taking it after 10 weeks because of reoccurring ulcer symptoms.
I started buying strontium supplements from the internet. Approximately 6 months later, I saw an NHS consultant who confirmed that I shouldn’t have been given AA because of my medical history.
She agreed that I could have Strontium Ranelate on prescription, because she was doubly worried, about me taking an unregulated strontium supplement, especially from the internet, because like most supplements that you cannot test for with a blood test, there was no guarantee that it even contained what the label stated.
I’m 71 now and still taking it now without side effects. The only disadvantage is that I’m not allowed a repeat DEXA because strontium causes inaccurate, therefore misleading scan results.
If it hadn’t been for my previous medical history, I would have probably continued taking AA, for the 2 or 3 years until I was due a repeat scan. Several of my friends have been on AA for years without problems!
Your GP is certainly more knowledgeable than my doctor was, so I would have more faith in the advice you have been given.
The advantage of taking AA in tablet form, is that you can stop taking it at any time if it doesn’t agree with you!
Did you get a Vit D test done?
My GP won’t request them, so I have to arrange my twice yearly test myself, using a postal, blood spot collection kit, which I return to an NHS hospital Lab at Birmingham. Last time I think I paid £29.
It’s worth pestering your GP first, if I hasn’t already been done.
Good luck
I did ask for a vitamin D test & he said "we don't do those"🙄 At the time I thought he was knowledgeable but I'm not sure now. He told me to take the pill when I liked, with or without food 😯😯
Oh no. That statement borders on negligence! Also I note he was quoting US research. I'm not going to knock research. But we must remember that the US medical system is very much in thrall to the pharmaceutical industry. Plus it's well worth having at least one Vitamin D test run privately if your doctor won't order it. If your level is satisfactory, all to the good, but what if it isn't? It could just as easily be too high (mine was) as too low (very common in our Northern countries).
It looks as though our NHS is so overstretched with covid, that nothing else matters. The contact details for the service I use are as follows
vitamindtest.org.uk. Website for all information
Vitd@cityassays.org.uk. Email
I usually phone to order and pay for a collection kit. On 0121 507 4278
You can order on line but they use PayPal which I refuse to use, so I use a card payment.
In the past the kits arrived within a couple of days via Royal Mail.
I do the small blood spots on the card as required, then send it back to them in the provided prepaid envelope.
The results have usually been returned within a week to me via email.
I sent my last test off the first week in January and it was 2 weeks before I got the results. Combination of the lab being very busy and Royal Mail delays.
The the Lab state greater than 50 is adequate Over 220 is high.
My result was 127 nmol/L which is fine. I try to keep it between 120 and 170nmol/L this range is considered optimal by many folk.
Best wishes
Are your scores that bad? In October 2018 my DEXA scores were Spine -2.0 / Femoral Neck -3.3 / Total Hip -2.6. I tried AA, but after lots of issues stopped after 3 months. The Rheumatologist wanted me on Zolendronic Acid, which I declined. It comes from the same stable as AA and I feared similar side effects. Because of the discrepancy in the readings I went to see Nick Birch at Osteoscan for a REMS scan. This was in January 2020. REMS scores Spine -2.5 / Femoral Neck -2.5 / Total Hip -2.0. I had been taking Vit D3, Vit K2(4) & (7), Magnesium and Boron since DEXA scan. I always taken a MultiVitamin (used to work shifts). I consider myself at 67 to be reasonably fit, walking 2 dogs, gardening, using a rebounder, Tai Chi & Pilates. I’ve always considered that I had a healthy diet, lots of green veg, fruit, etc., but had suffered from digestive issues for a few years. I started an anti-inflammatory diet about 18 months ago. Big no,no’s sugar, gluten and the one I didn’t want to lose dairy. Because of no dairy, I now supplement with Calcium. The digestive issues are much improved. I’m still tweaking my diet as I’d like to get all the way back to normal. Less inflammation in the body has got to be good for the bones. I’ll have another REMS scan next January and we’ll see where we are then. My main objective being my scores don’t get any worse. I’ve had no fragility fractures, even after a bad fall a couple of years ago.
PS I lost faith in my GP when he tried to give me Omeprazole to remove the digestive issues caused by AA!
It is your choice whether or not to take medication. However there are people who have achieved good results from using so-called natural means and I would always advise anyone, whether or not they also take medication, to also follow a protocol proven to improve bone density because that will lead to over all better health anyway. Another thing which must be done before starting medication is to make sure all the relevant tests for "secondary causes of osteoporosis" have been run and that one's calcium level is healthy. From the outside looking in, if meds are deemed truly necessary the older bisphosphonates, with all their problems, are generally speaking safer than the newer types of medication. There is one approved in the US (Evenity) although I don't know if the UK or EU have ever approved it which comes with a black box warning - it can cause death! It comes from the same firm as Prolia. Some reading for you:
Hi, I was diagnosed wit osteoporosis last March after breaking my hip previous January.
I decided, after a lot of deliberation, not to take the Alendronic Acid, I wonder every day if this is the right decision
I try to do all the right things , usual supplements , already mentioned , plus I also take silca which is believed to be good for bones, I juice every morning , smoothy for breakfast and in general a really good diet, also thyme and horsetail tea 🤷🏻♀️I’ll try anything ! and only time will tell if it’s enough
I’m due a dexa scan in 3 years time but I don’t think I can wait this long and I will probably pay privately next January
That will be 2 years of doing ‘my very best’ and if my scores haven’t improved I’ll probably resort to the dreaded drugs !
Don't you have to have it done on the same machine?
I think you’re supposed to , I’ll cross that bridge when I come to it, I’m hoping my go might agree to send me. What did you decide about the Alendronic Acid ?
Severe Osteoporosis - Understanding the scan report and treatment
Osteoporosis - My Experience.
Any advice would be greatly appreciated!!
K2 supplement
my dilemma Denomosab
