Concerned

[Smilerv]

is there nothing positive about this osteoporosis? I read this site to gain knowledge and come away depressed. I’m so afraid that whatever I do to help it won’t help.

[Screwed]

well I wish I had found this site before I started Prolia injections. I’m sure some people have positive input but I’m finding the majority here have side effects and issues as a result of medication.

I’m glad there’s a space to voice our frustrations. I think mostly people are upset about the way I fit is sheltered from us at the doctor’s office. We believe our providers but find they don’t know how to deal with side effects we report. So frustrating.

[Fruitandnutcase in reply to Screwed]

It is frustrating. I feel very sad that I was treated for various conditions which can all lead to osteoporosis and yet it was never mentioned - I had Graves’ disease in 2012, inflammatory arthritis in 2014/15, was given steroids - not good for bones, in the past and also comparatively recently I’ve been given PPIs - again not good for bones. I have a family history of osteoporosis and yet neither the endocrinologist or the rheumatologist who treated me ever mentioned osteoporosis bothered to ask me about my family history. I feel very sad to think that had I known the full picture I could have done a lot more to help my bones before I reached the stage I’m at - but hey, ho, it’s too late now.

One thing I have learned is that I have wizened up and I make my own decisions and think very carefully about any medicines that I’m offered and I also read a lot and research everything and I’m not prepared to do as I’m told if I have my doubts.

[fraid]

Was trying to reply, cocked it all up but... nowt good about OP but how you deal with it helps if you're positive. Laughter is still my best medicine, hence the pic which I also cocked up but you get the drift.... 🤗

[fraid in reply to fraid]

Won't let me put pic up, sorry

[Piglet44]

Was diagnosed 2016. I am also 67 have no pain lead a normal active life , walk daily, take no drugs. Why are you depressed?

[dcdream in reply to Piglet44]

I was diagnosed with osteoporosis at 59 and am 70. No meds, no pain, considered in the severe category according to T scores, never broke, fractured a bone, etc. I live an active life, eat well, take a few bone healthy vitamins, walk daily, pilates, yoga twice per week, weights 2 times per week. I look at my Z scores and do not bother to compare my bone health to a 35 year old (which is your T score).

[Smilerv in reply to dcdream]

Thank you!

[Screwed in reply to Piglet44]

Trying to get off of Prolia and those additional scary rebound fractures makes me depressed .I was healthy before I took Prolia. Now I’m not. Sure what it will be like when I stop.

You take a medication to improve and then have deal with those consequences. I wish I had never started and I wish rheumatologist didn’t start out with Prolia,

[Fruitandnutcase in reply to Screwed]

I feel for you, at least I could stop the weekly bisohosphonate which was why I refused the offers of infusions especially as one rheumy said she couldn’t guarantee I wouldn’t feel as awful with the infusions.

From what I’ve read you mustn’t just stop your Prolia - or even be late in getting your scheduled dose - you have to take a relay drug to help you off it.

[Smilerv in reply to Piglet44]

I’m afraid of how fast this will progress regardless what I do about it.

[josephinius1 in reply to Smilerv]

Legit worry...based on what I've seen. (My father-in-law.)

[t1gernidster]

it is a depressing thought to have OP but there is much you can learn from this site to keep yourself mobile and to stop deterioration as much as possible. What to take and probably more important what not to take. Don’t be fobbed off by GPs and consultants, read all you can and make up your mind what’s best for you. Good luck.

[Siamang]

I have a lot of friends diagnosed, most of whom take prolia without any side effects and they go about their daily life, attend gym and lead active lives.

Whereas I took prolia and after loosing a handful of hair and other symptoms stopped after 1 injection. I’ve improved my status by exercise including weights program, calcium, vit D and K2. Have had no fractures.

My friends happy with medication don’t follow or post on these sites - they are more accepting than me!

[Screwed in reply to Siamang]

I too have lost lots of hair. It started with first injection and continues to fall out

[Siamang in reply to Screwed]

Hair does grow back when medication ceases like with chemo.

[MWZ3 in reply to Siamang]

I have a friend on Prolia who just says she trusts her GP. Funny thing is said GP hasn’t even bothered to check my friend gets sufficient calcium which she certainly does not.

[Siamang in reply to MWZ3]

It should be best practice for GP’s to provide patients with a list of calcium rich foods. I got told to calculate what I was consuming from diet as step 1 and had vit D checked

[Fruitandnutcase]

No, I don’t think there is anything positive to say about having osteoporosis but that doesn’t mean you need to depressed about it. You are still the same person you were before you discovered you had osteoporosis.

You can fight back by eating well - no junk food or sodas, finding out about bone friendly minerals and vitamins, getting the right sort of weight building exercise, making sure your home and garden are trip proof, don’t do silly things like standing on stools etc.

I took bisphosphonates for four months and felt awful, decided that wasn’t how I wanted to live and stopped them. You’ve got lots of good advice here - as t1gernidster says, do your research and don’t be fobbed off or bullied into doing anything you are not totally happy about. How bad were your DEXA results? Have you had any fractures?

Have a look at this chart nice.org.uk/guidance/ta464/...

As you will see you can take OP meds and still fracture and some people who don’t take meds don’t fracture. Bone density and bone strength are not the same thing.

People who are happy with what they are taking or who don’t want to know about anything else tend not to come to sites like this.

Just be aware that there can be problems if you want to stop taking Prolia after your first injection - you must take a relay drug which is usually a bisphosphonate to prevent relay fractures.

[Screwed in reply to Fruitandnutcase]

Right. I eat healthy take all the vitamins d3 km7 boron 75mg. At the gym 6 days a week . I have had a broken patella 3 years ago when my boot heel caught a sharp rock.

I get it .

[Smilerv in reply to Fruitandnutcase]

Thank you for your reply.

I haven’t had any fractures. Don’t have my results in front of me but I remember it said that I was 13% more likely to fracture.

I pretty much stopped doing yoga because of how some of the poses might not be good for me. I’ve noticed a loss of all the benefits yoga gives because of it. I miss how good it makes me feel. So hard to figure out what’s okay to do.

[Fruitandnutcase in reply to Smilerv]

Have a look at Margaret Martin’s website melioguide.com she is a Canadian physical therapist. I really like her, she seems to me to be very sensible and sympathetic person.

She has a few good books out, and several videos, one is about exercising for osteoporosis and another yoga for osteoporosis and she shows you a lot of movements that are or are not suitable for people with osteoporosis.

You could always look for someone local to you who understands the needs of osteoporotic patients. I think I probably said earlier that I kept up with my Pilates, it is an exercise I love and have done for over 25 years. I would have hated it if I had had to give it up. It was one of the things that made me *me*. Fortunately my Pilates teacher is a physical therapist who has a special interest in osteoporosis and older patients and who is wonderful with us.

We are in a small group - 6, so we get watched over very carefully and as you find with your yoga we come away feeling really good. So, you really do need to find out what positions will be safe for you to do.

The one thing to remember and which our teacher starts every single session with is ‘Don’t do anything that hurts- even if it is something you have done dozens of times before and even if it is something I have told you to do. Just don’t do it is it hurts you.

Once you work out what you can safely do you will be more than half way to feeling human again.

[Malaicofta in reply to Fruitandnutcase]

Dear, what withdrawal symptoms did you have after stopping the biosphosonates?

[Fruitandnutcase in reply to Malaicofta]

Absolutely none! After a week or so the awful side effects I had been having disappeared and I felt my old normal self again.

The pharmacy assistant was all a flutter when I told her to take the alendronic out of my bag of pills and called across to the pharmacist to say ‘Can this lady just stop her alendronic acid?’ I just said it didn’t matter because I was doing it. She told me to contact my GP but I just wrote the GP a letter telling her I had stopped taking it and asking her to remove it from my repeat prescription which she did.

[Malaicofta in reply to Fruitandnutcase]

Thank you very much for your reply.

[Met00]

I like to see life from the perspective of "glass half full" rather than "glass half empty", so view osteoporosis as just one of those things, that isn't going to impact my life any more than I can help! One of the positives I gained from diagnosis was that it was the incentive I needed to start exercising regularly and eat more healthily, both of which are important for overall health, not just osteoporosis. As a result, I believe I'm fitter and healthier now than I would have been without the osteoporosis diagnosis. I've also met some lovely people as a result, both online but also, and far more importantly, in real life through my local ROS support group. I do hope you can find some positives too.

[Smilerv in reply to Met00]

Thank you Met00

[wellness1 in reply to Met00]

There's a US physical therapist, Margie Bissinger, who speaks of an osteoporosis diagnosis as an opportunity. It sounds like you're doing a lovely job embracing that idea.

[buddy99]

You have to be very careful about what doctors want you to do. There is so much more RELIABLE information out there than most docs can give you. I, for example, was to go on Prolia and looked into it. I then called the company which makes the stuff, talked to a medical advisor there, gave them my data and had a 20/30 minute conversation. Their answer was that they did NOT recommend Prolia in my case. That was a revelation about taking doctors' advice without question. If the company, which makes the medication and has an invested interest in selling it, recommends against taking it, you know that your doc was dead wrong. I'm telling you that, because I think there is a lot of fear mongering around osteoporosis. I'm by no means saying that osteoporosis diagnosis are trivial, but it depends on a lot of factors. From what I understand, osteoporosis, in itself, is not the problem, unless it is super severe (as in, cough and break your ribs or shake hands and all the bones in your hand crumple to dust). Falls are the most common cause for fractures by far. So no matter how bad your osteoporosis (with the above exception, of course), the primary goal is to prevent falls. And this is the good news, because YOU can do a lot to do that. So, yes, it is not great to have osteoporosis, but there are things that the individual can do. And THAT, I think, is very positive.

Back to your question. What I found positive about osteoporosis is that I learned that patient advocacy and autonomy are very important. I can find my own information, I can make my own decisions based on that information. It gives me a sense of strength, even as my bones are losing theirs.

[Screwed in reply to buddy99]

Agreed it’s not the diagnosis that bothers me it’s the Prolia. I do have an endocrinologist appointment in March for a second opinion. See the rheumatologist in April. By then I should be able to decide course of action to stop Prolia.

[buddy99 in reply to Screwed]

There was very recent research published about increased mortality risk in case of kidney issues concerning Prolia. If I find it again, I could give you the link. There also have been law suits against AmGen (the company that makes Prolia) about increased incidents of spinal fractures. They probably have settled, because those can not be found anymore online. And there is the risk of atypical fractures (for example , standing waiting for the bus and next thing you know the femur breaks in half). I can private message you a link to a lecture about osteoporosis if you like and you can make up your own mind. Again, double check everything! Never take my word for anything. Go with Marcus Aurelius who said, "Everything you hear is an opinion and everything you see is a perception." I hope I quoted that right.

[Screwed in reply to buddy99]

Yes please friend me. I don’t know how to do that

[Smilerv in reply to buddy99]

Thank you for the post. It’s just what I needed to read. 😀

[emersee in reply to buddy99]

Hello buddy99.

There is a lot of negative comments about our doctors on this site. May I ask, are you, or anyone who wishes to answer, still attending your GP or specialist despite the mistrust? if still attending, why?

[buddy99 in reply to emersee]

Those are very interesting questions. What prompted you to ask them? What would be your definition of mistrust? I can definitely not speak to "a lot of negative comments about our doctors on this site", because I don't know how many of those there actually are, perceived or real. I assume that, because you addressed me specifically in your "salutation", you have detected both negative comment and mistrust in my commentary. Correct me if I got that wrong. Before I can further elaborate, I need to understand where you're coming from first. I do not want to make any assumption that will lead into possible misunderstandings. Maybe there is a way to be more specific. That would be great.

[Smilerv]

Thanks all for the input. Just what I needed since there is no one to talk to around me that can relate.

[Southerngirl2787]

No matter your age....ask for a review of a possible parathyroid tumor. I had one for a long time, it destroyed my bones, nerves, 10 spinal fractures, 8 rupturing discs, 4 spinal fusions. My doctors looked at my age, 50 at the time I was feeling poorly, and working long hours in healthcare, and said, "you are stressed, learn to relax." I am 62 now, and improving, slowly, I have never taken a fall, the damage a parathyroid tumor causes makes any movement likely to fracture you! I'm done 15 surgeries since 2014, but at least I'm still exercising smartly, walking, and with some rough pain days, but life goes on. Many folks have these parathyroid tumors, but they are missed...getting a diagnosis is difficult. But they can cause heart attacks, strokes, and folks die without even knowing what killed them.

[thyr01d]

Yes, Smilerv, positive is that research has shown that Yoga definitely improves bones. You would need a teacher who understands and I don't know how you would find one but I have created a programme especially for people with the risk of osteoporosis - before finding out I was one! It's a really good programme (I'm qualified from India, USA and UK to teach other Yoga teachers how to teach advanced yoga). If you were to gather together a few interested people I could teach online but not for at least a couple of weeks as I am between houses at the moment.

[josephinius1]

Some of this is going to sound bizarre, and in fairness, I've also been very depressed, so don't hear me saying "it's just all about attitude" because--for me at least--physical pain has been the most difficult thing I've had to deal with in my 60-ish years, and I don't take the easy road--lots of bumps in my life. But one thing I've noticed with osteoporosis, which for me has come with pain, sometimes acute, probably most chronically due to the physiological changes that come with three inches of lost height, is that little things, like my husband lazily rubbing my back on top of the pain feels almost ecstatically good. Which kind of makes sense, right? The sun shining through dark clouds onto the dark trees seems SO much brighter than the sun shining on those sane trees on a cloudless day.

Or, I guess you could say, it has really enhanced my appreciation of the little things.

It has also pushed me in a way nothing else ever has to be diligent with my overall health. I'm likely to end up physically stronger than I've been in, maybe, ever, and having had no idea I had absorption issues, among other things, I'm going to be getting more out of the nutrients I take in. If it weren't for pain, I might have been able to say I felt better (I also have Hashimotos, have been dealing with chronic fatigue, PVCs, slow heart rate--stuff that makes you feel like crap,) in years.

I hage struggled with my weight all my life, and I know we don't necessarily want to lose weight with OP, but eating better has resulted in my eating more calories and weighing ten pounds less, even though I can't run any more (which was my calorie burning activity of choice.)

So...I mean...there ARE some positives, I think. 😀

[strongmouse]

I think it helps to understand a bit about any disease we have and to find out what others have found helpful or not. We might not - actually definitely do not - want osteoporosis, but being as well informed as possible helps us manage it as well as we can. My mother lived well with quite severe osteoporosis, She would go out for a daily walk even after she became partially blind, and lived independently and well for many, many years.

It is hard when we are first diagnosed, but diet and exercise will help stop its progression. Some people take medication others choose not to. Some people will have strong feelings one way or the other, but it isn't the whole picture and you need to choose your path. I take zolendronic infusions but try to do limited exerise (I have other health conditions) and take supplements. I have found learning to strenthen the muscles to help with my balance is good as it will hopefully stop falls. It isn't all gloom!

[buddy99]

Did I understand you right, that you quit yoga and really miss it? Here are two links that might get you back into the swing of things:

health.harvard.edu/womens-h...

blog.algaecal.com/yoga-for-...

The Melioguide mentioned above is also really good. She has a number of yoga videos on youtube.

[lgd333]

Life is what you make of it. I've had osteoporosis since 2018 and been on risedronate sodium since. I have no complaints. Had another dexa scan recently and results aren't much better. Been referred to an Osteoporosis clinic for more treatment but not complaining.

[Smilerv in reply to lgd333]

That is so true Igd33. Life is what you make it and I have so much more to be thankful for.

[lgd333 in reply to Smilerv]

Keep strong, stay positive and take one day at a time. I've had epilepsy for 50 years and that's how I've got through.