Disappointing results!g

constance.de, I am "the other Allison" on this site. I've been researching the bisphosphonates for the last several years, as, like you, I was told by a doctor (several, in fact) that due to osteopenia that's now in the osteoporosis category for the spine I "should" have injections, in my case, of Reclast, as like you I'm not a candidate for bisphosphonate tablets due to GI issues. See if you can locate FlipDover's post "Prolia injections -- osteoporosis" on this website; she gives a succinct summary of the concerns attached to that drug. I've refused the osteoporosis drugs, as everything that I've read leads me to believe their risks outweigh their potential advantages, due mainly to the fact -- incontrovertible -- that all of these drugs remain in the body for up to ten years, meaning that any adverse effects may be irreversible. Furthermore, I do not believe the catastrophic side-effects are as "extremely rare" as the medical and pharmaceutical establishments claim; rather, the evidence of them continues to accumulate, to the point where FDA in the U.S. now recommends "drug holiday" after three years, as with longer use the risks rise. In addition, there are a number of class-action lawsuits pending in the U.S. against bisphosphonate drugs; this would seem to contradict an "extremely rare" occurrence of side-effects.

See also the nonprofit watchdog agency Public Citizen's newsletter of May 2015, "A Guide to Treatments for Osteoporosis," explaining why it considers both Prolia and Reclast not only unsafe but also with too low of a risk-benefit ratio to warrant use.

All that said, I am not suggesting that you either should or should not take an osteoporosis medication. I'm not a medical professional and therefore am not qualified to weigh your individual risk of fracture against possible medication benefits. I just hope you will do as much reading as possible before making a decision.

Best wishes,

Allison

THANK YOU, Allison.  There is a lot to consider in your post, I will/am gathering information wherever I can.

I already rattle with pills, so I don't really want to take anything else.  However, I'm a bit concerned as to know what will happen if I just ignore this problem.  I have never broken anything (up till now!), but at 76 and with PMR, Osteoarthritis and Gout I think I'm a bit at risk now.  Drat!  Still, I don't want to become paranoid and must weigh up my options.

Once again, many thanks.

Constance

Hi

When I discovered I had osteoporosis was 4 weeks post op  2nd hip replacement.

Doing an NHS exercise and a bone cracked, fractured and I'm now permanently on crutches. thats not the problem its the pain it cause....this was 2 years ago

On the upside I've had no more fractures

Take care

Love

Eileen

Do you know what is causing the pain Eileen? What cracked? Has it not healed or is it muscular? What are you doing for it now?

Hi Allison

I do know  lol   The fracture didnt justfracture like a normal one and knit together again.....it stretched so far that it will never knit again.

My GP has talked me into going onto a low dose of morphine 10mg x 2 a day which was the first thing that seemed to ease it. Then he started taking me off naproxen and I started getting very sore again. He's on holiday so cant talk to him at the moment but will do as soon as hegets back

Love

Eileen

I hope things get better for you. I also hope you are getting the correct advice on things that will not make it worse.

 

At least you are heading in the right direction Mary. I too would not consider taking any drugs in the osteopinia bracket. Infact, until my diagnosis, I could count on one hand how many times I have taken any prescribed drugs. But weighing up the extremely high risk of a third fracture or taking a chance on having very rare side effects from the prescribed drugs, I decided what I felt was best for me. I have never fallen, but have given up the bike, reluctantly. Still running and doing an exercise class every week as well as 3 gym sessions, I am certain I have made the right choice. Spinal fractures are pretty sore. I hope your score continue to improve.

Thank you, Mary.  

It's the "keep active" which bothers me most as the other illnesses listed all cause restrictions.  I eat a healthy diet and am not overweight.

I do try to keep positive, and my husband helps me a lot.

I was interested in reading that you have injections (most people seem to take tablets - but I just cannot take any more pills - I rattle already)!  Do you have any ill effects after the injection and when, and where, do they take place, and how long do they take to do?  Sorry about all the questions, but I am new to this, and a bit scared.  At 76 I'm a bit wobbly anyway.

Listen to your body Constance and if you don't feel active dont, but if you wake up one morning and feel active - go for it!!!!!!

 I'm only a few years behind you age wise,  but luckily osteoporosis is the only thing for which I take medication. My doctor knows how anti- drug taking  I am. However,  I decided with my back score being what it is I would give medication a try.

With increasing NHS monetary contraints it is to be expected that a doc will start a patient off on the least expensive drugs.  A.A. tablets didn't suit me, Strontium ranelate  worked well but I was taken off it by my doc and now my 6 monthly injection.of Prolia.(which is one of the most expensive drugs out there for osteoporosis)   I had my first injection at my local hospital,  and now at the surgery.  One can choose whether to have injection in tummy,  thigh or arm. I chose tummy -  It takes seconds and doesn't hurt - I just don't look!

I will be due my 6th injection this Spring and to date have had no side effects .I believe after this injection my doctor will arrange another bone density scan and then review my drugs but I WILL NOT go back onto AA tablets!!

Keep smiling!

It's great that you have found something that suits you. There would be no reason to return to other drugs if you only have 1 more injection before you are scanned again.  Let us know your how you get on. I have my fingers crossed you get a good result. Just out of curosity, do you know what your injections cost?

Hi Alison

I believe my Prolia injections cost in the region of £366 a year. 

Hi Mary Thanks for that info. I would prefer to have the injections purely for the convience. I travel a lot and it is not always easy to get drinking water with very low calcium content recommended to take the medication. You should not combine the meds with calcium. But drinking water is necessary to take the meds. I certainly could pay for the cost myself so I will find out independantly ( without cost implications)  what would be best for me. Thanks again.

Good luck Alison, I hope it works for you. There can be side effects but I am fortunate to receive very few. I say very few because after my last injection I did get some discomfort in my thigh - just a coincidence or not - I don't know! Told myself to stop imaging things and it went away! The power of the mind!!!

Yes Mary. Stay positive. 

"Still running" Alison?  Crikey. I can't remember if your T-scores are better or worse than mine (Spine - 4) but I wouldn't run now. About a year ago I attended a Physio. who was trained in Osteoporosis. She suggested that I "gently jog" which meant that I should briskly walk, then "softly" jog for a count of 20 seconds, walk again, jog again etc... . I started doing this, felt good, and 2 weeks later had an apt. with my specialist. I told her what I was doing and she said 'absolutely not', brisk walking only. I decided to take her advice and now, apart from walking, I climb stairs always, and took up dancing for a while - .but no running.  At least until my spine scores improve . . . I am now careful of doing floor exercises and would NOT go to a gym. I KNOW that jogging is greally good for bones but it seems it's  too risky for people with very low bone density. . .   Kind wishes,  J

Juno, Juno, Juno. What don't you like about the gym? A qualified trainer can tell you ways to improve your balance, help with strength and weight bearing exercises, watch that you use gym equipment correctly. As well as other pieces of equipment I use a treadmill - mostly brisk walking but if I feel like it, I will break into a gentle jog.

You can attend Pilates/yoga classes, zumba classes and so much more. My Nuffield gym has access to qualified nutritionalists

and physios. Give your local gym a try!!!

Hi. My t -score is -3.5 and running certainly did not prevent my condition? Went back too soon and I am certain it did me no favours. After I fractured L4 it was undiagnosed so started running again after 2weeks. Having been a nurse, I should have known better.

Mary, I just HATE gyms - all that effort and  grunting  and using equipment  that other people have sweated profusely on !!  Yuck and more Yuck!!  I love swimming - which ufortunately is no good for bones. I have PMR which can  make upper body exercises very sore.  . .  

Re. Pilates -  it is estimated that quite a percentage of the exercises here  are not good for people who have OP(twisting, bending etc.) and some of the Yoga positions too but less so.  

So I'm THINKING of Aqua Aerobics but it's pretty cold here at the minute (what a wuss?).  Kind thoughs, T

You're not the only one who may feel you should know better Alison.Life is like that.  My OP was mostly caused by a vegetarian diet which was woefully low in protein and then taking steroids for PMR for three months before getting a Dexa scan. My BMD must have been low and the most damage from steroids can be done in the first 3 months and my bone density then became really low - though I know some (lucky) people aren't affected at all.  . ..   T

I'm with you re all the grunting - but they're only little boys pretending to be big boys - treat them with the disdain they deserve😠. The equipment in my gym is cleaned at least every half an hour - often more than that - otherwise I wouldn't use it.

I'm sorry to hear you have PMR, do whatever you are most comfortable with - aqua aerobics is better than no exercise. Good luck!

When I referred to all  the pushing, grunting and sweating that goes on I should have added " and that's only the women"!!!!  Ha ha. . .

Seriously though, I've never liked gyms - there's something awfully aftificial about them. I'd much prefer to be outdoors and I so wish that swimming would be effective. . and I've lost some confidence in physiotherapists. . . 

(The PMR is doing well and I'm down to quite low-dose steroids now but it's a beast that you don't want to taunt.)  T

I am vegetarian and have been for almost 40 years. Dont think my diet is lacking in anything, but who knows. It was a big surprise to discover I should have been eating white " polystyrene" bread rather than granary or whole meal, the ones I like, but the white has calcium added apparently and the others have not. Build muscle really easily and my B12 levels have always been good, so no muscle problems which a bad veggie diet can cause. Get my calcium from all the greens and soya milk, yogurt and cheese. Protien from soya and quorn as well as the above. I dont like sweaty gyms either but I have had one in the house for the last 30 years. Certainly more hygenic. Any exercise, even in the pool will do you some good. The floor tiles from the changing rooms to the pool are hard to walk on and putting some impact through the bones. Ha ha.

That made me laugh - how wonderful it is to have a sense of humour.

I understand you preferring to be outside, my problem (?) is my blood pressure is all over the place from low to very low and when it is very low I have been known to pass out so I dare not go too far afield on my own - and in case you're wondering my medication is to sit down and wait for the moment to pass!!! Please keep us all smiling. .....

Hi Juno.  I did aqua training for 10 months for my PMR.  I had to then give it up because the course was over 45 mins a time and then I was so exhausted I couldn't move for the rest of the day.  Even the following day was 'difficult'.

I now also have OS but thought of going to the pool, putting ankle weights on and using dumbells at my own speed and level.  Why not try it?

I like the expression "polystyrene bread".😃  But, actually I really like the bread.  Toasties, sandwiches, beans/cheese/mushrooms, etc etc on toast. To continue - bread pudding, bread and butter pudding.  Lovely!

Constance you have listed all my favourite foods using white bread which I cant resist particulary bread and butter and just hot buttered toast. Though lately I have started to eat soya bread (still miss the white   though use restaurants as an excuse to eat it sometimes)

Thank you for that suggestion Constance. I'm on low dose steroids now for the PMR so exhaustion isn't too much of an issue (you can look forward to this also). My New Year resolution is to think up something enjoyable for exercise, I know it's a bit late in Jan. to be still THINKING but  . . . 

Good luck with your OP treatments. I'm using injectable Forteo at the minute which is to be followed by Actonel or Fosamax. However there are other meds. that do not have the stomach issues that AA does.  Take care.

J