Osteoporosis

I had a Dexa scan some 5 years ago and the result was a " bit going on in the left hip " nowhere else. I was told to see the GP re. medication, saw the GP and refused medication as when I asked to see the report it was nothing to get excited about.
I was always active in my job slim, ate well etc, but osteoporosis is literally wear and tear and unless it interferes with your life or you're in pain, forget about it. It makes no difference to your way of life.

jeanie99 I have osteopaena (pre osteoporosis) I was diagnosed 20 years ago. Took medication (alendronic acid) for 5 years, which caused stomach complications so I stopped with the agreement of my GP.

I added dairy (didn't eat drink dairy products) to my diet, upped the green leafy vegetables, tried to cut down on wine(unsuccessfully). I do exercise 3-4 times a week. Unfortunately I cannot take calcium/vit C tablets due to stomach problems.

Twisted my ankle this time last year, and it blooming well hurt, went to A & E next day and I had broken a bone in my foot and my ankle!!!! Hence I am extremely careful on walking anywhere, my fabulous high heels come out only "car-to-bar" and I am slowly adapting to "flats"(bright and blingey if possible).

Try not to worry, I think it is becoming more common as we all live longer!

I'm 63 and in a wheelchair because of it, mine was quite sudden onset caused by my auto immune condition. I'm unable to stand because my knees are shot and my right arm causes me so much pain and is pretty useless. The left is somewhat better. Both elbows shoulders and now wrists are affected.

Flexiblefriend sorry to hear the extent that you are affected by osteoporosis

I too was diagnosed with (borderline) osteoporosia this year after breaking my wrist in a fall, having been told I had osteopaenia after breaking the other wrist 15 years ago! now on alendronate oce a week (scare in week 2 with severe stomach pains but OK now) and very high-dose calcium/vitamin D supplements. Except for the annoyance with the requirements of the taking of alendronate, it's made no difference to me so hopefully you will be fine!

I have osteopenia have had for four years , started on bone tablets and calcium after having chemo and radium . cancer drugs make it worse . .Last Deka scan shows a slight deterioration ,I just have to keep taking all tablets and hope it does not become osteoporosis .

I don't take any meds for my osteoporosis as they all seem to be unsuitable for me due to stomach problems and other meds I have to take. It fortunately doesn't cause me too many problems, lower back and hip pain now and then, nothing I can't live with. I feel so sorry for those posters who are in constant pain, suffering from this disease.

Although I have quite bad arthritus, have always been convinced that it is not osteoporosis. The number of times I have fallen, often quite badly and not broken anything.
Then earlier this year I had a fall, and hurt my back badly. I assumed it was soft tissue injury and with the help of strong pain killers did not seek medical advice.
So, it was two months later, then being checked out for something totally different it was strongly suggested I had an MRI on my back, and this shown that I had actually had a wedge fracture in the spine.
So now the GP's is convinced I have osteoporosis and has double my Ad-Cal daily tabs and put me on alendronate once a week.
I have never had a bone scan, it is totally conjecture, but when I did complain about this to a orthopaedic consultant, I was told cannot do any harm taking that extra Vit C. But I am still concerned that it is a waste of resources.
My back is still pretty bad, cannot walk far or stand much, but the extreme pain of the earlier days is now over. I really was totally incapacitated for a good few days.

jeanie99 welcome to a not very exclusive club. Like you I couldn't believe the diagnosis but have been on Alendronic Acid and Calcium/Vit D for nearly 5 years and have seen improvements at Dexa scan 2 years ago. Just lately I have taken Risedronate which is coated and helps with any throat or tummy problems. There are also infusions so plenty of treatments to try. Like others I didn't want to take the medication but at some point worse problems will occur when the bones break by themselves. It can be hereditary.
Franbern you should have a DEXA scan and get a definite diagnosis. It is quite wrong and very costly that we are not all offered a one off DEXA scan at a certain age. Do look at The Royal Osteoporosis Society website.

I'm another in the not-very-exclusive-club. I was found to have osteopeania after a DEXA scan, following a double leg fracture.

I take risendronate & calcium/Vit D. Breaking my leg is not an experience I would care to repeat- it turned our lives upside down - so I am happy to take the medication in the hopes of avoiding any more fractures.

Hi everyone and thank you for your comments on how you're managing this dreadful disease.
I have been put on alendronic acid but after I had a spasm in my leg they have added calcium at 1200 mg a day and VitD.
I wanted a referral to a specialist hospital in Sheffield which is outside of our area as I have so many questions I need to ask. GP tells me it is managed within the surgery but they have provided me with little information.
I am awaiting their response to my request.
When I went to see the GP she was very nice but said she didn't have the time to talk to me about my concerns with the time restrictions for seeing patients.
I have checked out the Osteoporosis Society website and found lots of information and other sites for exercise for Osteoporosis which is something I need to do. This seems to be an important part of managing the disease.
I do feel somewhat more in control but when I found out I was in shock because of the life I have always lead and never thought it would happen to me.
Thanks again everyone

I have had it for years, and a long time ago was on strontium ranelate which was withdrawn and is now out of favour. Just took Ad-Cal (and still taking it) now; but seen consultant the other week and he is advising 6 monthly denosumab injection - gawd knows what this will/won't do for me.

I have a 20 year history of this. My mother had it (she lived to be 95) I asked for a scan because I know it is family linked. I was diagnosed with osteoporosis (at about 52) I've had treatment with Alendronate etc. Five years ago I was given a 'drug holiday" (there are side effects of being on the medication too long) because my scan showed I only now had oseopaenia. Last scan 2 years ago showed I was almost normal. I take a calcium Vit D supplementand and do Tai-chi. Please do just take your medication and continue to do some weight bearing exercise. It is treatable.

I know I mentioned this before on another osteoporosis thread, but it bears repeating since it still isn't routinely prescribed.

It is actually important for everyone ( and not just women) to take Vitamin K2. This is from the excellent book Vitamin K2 and the Calcium Paradox, by Kate Rhéaume-Bleue.

"Even if you rely only on food for your calcium intake, heart disease, caused by a deadly accumulation of calcium in the arteries, is the number one killer of both men and women in North America. Meanwhile, osteoporosis is a major cause of disability and death in the elderly of both sexes, and calcium and vitamin D supplementation haven't helped prevent it nearly as much as we'd like. This, in a nutshell, is the Calcium Paradox: a mysterious, concurrent calcium deficiency (in the skeleton) and calcium excess (in the arteries) that underlies two major health concerns of our time, osteoporosis and heart disease."

K2 helps put the calcium in the bones, where it belongs.

jeanie99, I'm sorry to hear about your diagnosis, it must have been a shock to you.
I have had it since my thirties, a combination of hereditary factors, long term steroid use and rheumatoid arthritis. I had the hip of a ninety year old woman in my thirties! I was initially in tears and pictured myself in a whheelchair for the rest of my life!!
The females in the maternal side of my family all suffer from it.

I fractured my spine in two places in my forties and walked about for six months, before it was diagnosed, despite my history. (I have a very high pain tolerance). Also I have had so many stress fractures in my foot, that the bones are crumbling away, which makes walking very painful.

I was so fortunate to a have an experimental vertoblasty procedure, where cement was injected into my spine to hold it together. It has lasted twenty years and allowed me to continue working, otherwise I would have been in a wheelchair.

I have yearly Dexa scan and now have an annual infusion, as I cannot tolerate alendronic acid pills any more. However, as I have literally no vitamin D, I also have to take huge doses of vitamin D prior to the infusion. This is despite a healthy diet and taking prescription strength Vitamin D.

However, recently I have had heart problems, which are being investigated and may be linked to excessive calcium in my arteries.
It does affect my life (and sleep) , walking is difficult, but I try not to let the condition rule it. Obviously there are days when I'm in considerable pain, so I make the best of the days when I'm not. I managed to work for thirty years after being diagnosed, despite numerous fractures and constant pain. I tried not to dwell on what the future might hold for me.
I'm so fortunate in the care I have received over the years but, understand others have not been so fortunate.

jeanie99, I think it's great that you have lived to 74, without any problems, so perhaps your healthy lifestyle has played a part in you being diagnosed late in life.

Try not to worry, treatments are improving all the time. When I first started taking Alendronic acid, I had to fast for twelve hours before taking it. Many a time I got up early on a Sunday morning, made a cuppa when I was half asleep and then remembered I should have been fasting!! It was a real bind remembering and it gave me terrible stomach problems.

I'm sure that now you have a diagnosis, the doctors will be doing everything to support you. I wish you well.

Happiyogi I do agree about the Vitamin K2 but do be aware it shouldn't be taken if you are on blood thinners, Warfarin etc.

Thanks, luluaugust. Yes, that is the received wisdom. However there is more to it, and it is addressed in the book:

"The race is on to find oral anticoagulants that work by a mechanism other than vitamin K inhibition, as there are so many challenges associated with this type of blood thinner. In the meantime, if you are on conventional blood thinners, consult your doctor before taking a K2 supplement, since taking more than 50 micrograms of K2 might interfere with your prescription. Make sure your doctor is up to date with the most current information about K vitamins before she balks at the idea of you taking vitamin K2."

Since I got osteoporosis years ago (I am now 87) I have become shorter by six inches. One has to think a LOT about what clothes suit you . You might need an entirely new wardrobe . Enjoy!

I was diagnosed with Osteoporosis about 3 years ago when the doctor noticed I d lost height I have had two annual infusions so far but noticed no difference what so ever should be having a new bone density test next year I have the annual infusions as I cannot take the acid orally ditzyme
I really don’t think about it or bother about it my lower back is normally in pain but you just forget it and get on with it
I have arthritis in some joins right hand both thumbs one foot etc etc but I still carry on as normal I m painting my hallway at the moment and I garden most days I walk and cycle so just forget I ve been diagnosed

Jennie you call it a dreadful disease I ve never thought of it as that, it’s just one of those things, surely a terrible disease would be cancer, this is definitely not the end of the world you just get on with it and try and forget it no good seeing it as a dreadful situation

Love your positive attitude Alexa

My mother SUFFERED from osteoporosis so when I had my ovaries removed at age 40 the probability of me suffering as she did was uppermost in my mind. Thankfully my surgeon started me on HRT. Just a small implant (about match head size) inserted under my skin twice a year means that I remain pre menopausal, and my bone density is excellent. I'm 70 now and will keep taking oestrogen for the rest of my life.
In time I am sure that HRT will be offered routinely as soon as a woman shows any menopausal symptoms as the benefits are overwhelming for the great majority of women.

I take Naproxen and Amitripatilyne for the pain. I have an electric shoulder blanket and an arthritis support pillow for the armchair and bed. I follow the physio exercises given to me when I was first diagnosed. I am 2 years in and it is a lot more bearable than before my diagnosis. I am fortunate in having the support of a great GP.

Thanks Happiyogi I just wish my GP would do more than hand out the pills. I buy my own Vitamin K. I would like my calcium level checked but was told this was not necessary. I just find it all rather haphazard and dependent on individual GPs.

No thanks Esspee I don't want to be offered HRT. I was quite happy to go through the menopause and I have no wish to be exposed to the risks and side effects of unnecesary medication. You may be happy with it I wouldn't be. My osteoporosis has been succesfully treated and I am now completely drug free.