Was diagnosed with osteoporosis 2 years ago

I did it Anhaga! More to do of course but the Specialist at the Bone Clinic has agreed to another Dexa Scan in 2 years and I Will carry on as before but upping the ante a bit, now that I know that it works! I still have the big smile on my face! I need these so called experts to offer their patients an alternative to Alendronic Acid! X

And our numbers grow!  Of course it's a lifelong commitment, but, hey, so is nearly everything we do!  When my inspirational friend got in touch with me, and told me about such things as Vitamin K2, and the various kinds of exercise, etc, another friend told me that she, too, had managed to improve her scores, but she then slacked off, and very quickly went back into osteoporosis territory.  It was her choice, of course, and she seems unperturbed, but if I were her I'd have picked up the pace again!

There needs to be some tracking of people managing to reverse osteoporosis to give encouragement to others.

There is a "zero pred" thread on the PMR forum, maybe the moderator would agree to our starting a successful non-medicated reversal of bone thinning one?  Or words to that effect.  

See this - at the bottom:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

We'd need to make sure it wasn't advocating anything the powers that be might consider questionable and vulnerable to moderation, but just being able to see that within the past year, say, half a dozen people have received acceptable proof that their bone thinning has reverse would be a great resource to point to for the skeptical or nervous!

I don't find it any hardship, so hopefully I will continue this lifestyle forever!

id like to thank you for your enthusiasm and encouragement these last few months. Onwards and upwards!

I made a new post a few minutes ago.  If it's successful we can ask to have it pinned, I think.

Gosh Anhaga. I never thought of this forum as a them or us situation. Whereas you are very anti meds for osteoperosis I am not anti natural and if I had been in your situation, I would have done exactly as you have done. I have had very good results in the 2 years I have been taking the meds and although I have been advised to stay on them for 5 years, if I have improved sufficently in another year, I will stop taking them and continue to do everything I am doing now. I suffered 2 fractured vertebrae before I was diagnosed and I was also well into the osteoperosis bracket in both hips and spine. My hips are now low bone mass and although my spine is now -2.9 I am working just as hard as you to reverse my score. I also have a brain tumour on my balance nerve and I have worked really hard at improving my balance although my fractures did not result due to me falling. So everyone, lets all pull together, respect each others decisions and encourage us oldies and new members to see light at the end of the tunnel, whichever route they decide to take.

It is a great idea to do this. I for one will certainly be following it

Not at all, I didn't perceive it that way, either.  I do think that we have to keep putting forward the notion that natural treatment is a viable possibility especially for people whose situation is not dire simply because it's not an option that very many doctors seem to be clued into.  I was going to be prescribed bisphosphonates without a DXA scan, and I know a lot of others are, because I had to take steroids.  Because of my personality (always asking why) and training (librarian) I was able to ask the right questions and get good answers.  Not everyone can, or know they should, or maybe even know there are questions to be asked.  That's all.  Sorry if I sometimes seem to come across as dogmatic.  I certainly would never criticize anyone for taking the drugs.  But I might feel very concerned for tham if they hadn't really needed them, and if they hadn't been given other guidance on how to get better.  

I agree totally. It was very wrong for you to be offered prescribed drugs when you do not have osteoperosis and I personally would always recommend to stick to a natural alternative where ever possible. However, sometimes, some people do need more help and medical intervention and some comments made on this forum can often upset people who really do not want to go down the medical route but feel they have no choice. We all must support and encourage each other, learn from each other and keep an open mind, whatever our friends decide. I was a nurse, so like you, I also ask a lot of questions and I am working with my local hospital to set up a support group for newly diagnosed members.

Anhaga,  has there actually been NO  research anywhere in the world comparing 2 groups of women,( with similiar  age, T-scores, other co-existing illnesses etc.) where one group took medication, eg. AA, and the other group engaged in an intensive exercise programme, and specific diet and vitamin supplementation -  where both groups were then followed up with DXA scans and compared??

 Surely there are well- known world class institutes eg. the Mayo Clinic who have considered this? Maybe we don't have to reinvent  the wheel after all?  

J

 

. . " natural treatment is a viable possibility esp. for those whose situation is not dire"

Anhaga this is the most important point of all as anyone with significant OP,  or who has already had a fracture regardless of their T-score, may be considered to be putting themselves at risk for further fractures with just an alternative approach and no meds.

Aslo would it be possible for you at some stage to tell those reading this who may be considering the 'alternative' approch exactly what it involved 

day-to-day for you - what you ate, what supplements you took, and what exercise you engaged in?  I know that's a 'hard ask' but there may be some people who feel it may be enough to pop a few vitamins and eat more vegetables.

J

 

Alison, my GP told me recently that it is now not recommended to take Alendronic Acid for longer than 2 years because it has reached its maximum efficacy in that time. It was 3 years and before that 5 years. I was thinking that this should maybe prevent some of the more nasty side effects. I don't know how this would apply to your circumstances, still having very low bone density in your hips and still a wee bit more to go with your spine. 

Although, I was hoping I would be able to continue with natural methods, I fully expected my scores to have deteriorated so that AA  would be my only option. I should point out that I am not so much hung up on natural methods as afraid of the possible side effects of AA. So I don't see this as a them and us situation, more an annoyance that the majority of the medical profession doesn't explain that there could be an alternative to Alendronic Acid and then support us whichever decision we make. 

 

If anyone is interested enough to know exactly what I've done they are free to ask me to private message them.

I'd be really happy ifyou found something.  It never crossed my mind to look for this research as I was really only thinking about my own situation, and then all excited about sharing what I discovered with others.

google combination of micronutrients osteoporosis to find an article describing research on how nutrition is effective.

I've never looked Anhaga.  But with OP being such a pervasive disease in Western countries for decades now there must be research articles in scholarly journals etc. that have investigated this.  . .  Surely?

Well, I'm not a medical researcher, and to tell you the truth I am feeling very discouraged right now and think it might be a good idea for me to take a temporary leave of this forum.  I appear to have upset some people because I expressed my own terror of the OP meds.  For which I am really sorry but there's nothing I can do to undo their hurt.

You make very valid points and to go the natural route should be the first port of call where possible, especially if your scores dictate low bone mass. I am not on AA but something similar and my hips are now showing low bone mass and the spine still osteoperosis, but both, much improved. I was advised 5 years, but if I continue the way I have, I will have a scan done privately after 3 and if everything in better than -2.5 I will stop the meds. I have had no side effects and feel very well.Of course I understand your fears but I feared more fractured vertebrae, more than I feared the side effects of the meds. I have to say I eat well and exercise and take the supplements, but I have always eaten well and exercised so I really couldn't make great changes naturally.

I don't mean to be intrusive Anhaga but I had a reason for asking this -   When I worked in Cardiology there was a lot of publicity around 2006 when there was a publication of an extensive independent study done by a research cardiologist in San Francisco (can't think of his name) which showed it was indeed possible to REVERSE atherosclerosis (ie. narrowing of the coronary arteries). This doctor got one group of patients to adhere to the usual advice given to patients after a heart attack re. exercise, diet etc.  The other group had to attend the unit daily for regimented exercise, eat a really strict diet with almost no aanimal fats and no meats, practice daily stress reduction techniques and meditation. Both groups continued their regimes for a full year, I think, and then were given a 2nd. angiogram - a test which looks at the build up of plaque on the wall of the arteries. (the first was done before the study began) and, guess what?    The atherosclerosis had completely reversed in the 2nd. group.

HOWEVER, as far as I remember, the doctor concluded that this would not be a tolerable alternative for most people as it was only barely tolerable for the patients concerned as they needed constant motivation, calls and encouragement.. . . As a psychologist, I would wonder if trying to adhere to such a rigorous rregime may not in itself be really stressful - if not for the individual, perhaps for their family.

So that's why I asked what exactly your regime was. It's obviously fine for you but maybe others, if they knew what it was, may find it unacceptable for any number of reasons. 

J

Well you certainly haven't upset me. I really appreciate  'full and frank' exchange of views about any issue and those who read them can be quite stimulated -  and then make up their own minds as to how it applies to themselves.  And your views and fears about OP meds. are as valid as anyone else's views.  You've put a lot of work into your own approach and, why would you be upset if people feel differently?

Kind regards, J

I started typing my reply but suddenly must have hit the wrong thing and it all vanished. Can't face typing it all again just now, but I have a vague memory of having posted an early version of my prepared essay on this forum.  I'll see if I can find the link.

Apparently not.  I'll try again, shorter than my prepared essay. 

Background "noise" pre bone diagnosis:

Osteoarthritis: taking complete vit B, h*** oil, glucosamine.  Also had started Calcium and D when hit menopause lo these many years ago.

Polymyalgia: prednisone, more vitamin D, more calcium, liquid iron as ferritin very low.  Started wallking 10,000 steps a day because I was afraid of prednisone effects.                    

Osteoporosis (my doctor said, though she was wrong): Better calcium and Vitamin D supplements, cod liver oil (more for the retinol than additional D), Vitamin K2, magnesium

Later I discovered my D level was too high so spent the winter without taking extra and it is now low normal.  Will be tested at end of summer to make sure it's okay now.  The high level is a result of my having previously non-symptomatic sarcoidosis, diagnosed in my mid-thirties but I think I had first signs in late teens.

Continuing with osteoporosis response - I carried on with the 10,000 steps I'd started at beginning of PMR/pred journey, got a weighted walking vest, took up tai chi and Nordic walking, and continued longstanding yoga and physio exercises.

I started eating more leafy greens, especially kale, broccoli.  I also now eat more fermented foods, beyond yoghurt.  I had given up most refined grains at beginning of pred journey, and really still don't eat many.  I have very little liquid milk but eat yoghurt, cheese and kefir.

I do not worry about micronutrients as I feel I get them from my good intake of fruits and vegetables (I'm vegetarian).  I do like prunes so I eat them nearly every day but I don't believe the hype that they are particularly good for osteoporosis.  They do contain boron, but so do a lot of other foods I also eat, like avocados and nuts.

I don't think that sounds very onerous, but then, I didn't have to change much.  Hardest thing was more pred-related than OP - giving up breakfast cereal and sandwiches and easy meals made with pasta.  

 

Well, after all that, I found the link.  It wasn't an actual post but a reply part way down the first page of this post (not too far down, easy to spot for its length, some things a bit out of date now): 

https://patient.info/forums/discuss/strong-bones-support-group-511551

My GP is very supportive of me. She has said half her patients have resisted taking AA. She wants to know about my research as I have already given her a valuable piece. 

It may be a choice to take the drugs but my sister found out the hard way. She took AA then prolia but both harmed her. Maybe it is not a bad thing to try the natural route first.  Neither of us has had any broken bones.

We just need a PhD student to pick up this ball because when you do a PhD you must come up with something new. 

I suspect it would need to be someone with a scientific background as certain basic knowledge would need to be possessed by the researcher.

I would prefer two separate studies, however. One should look at the role of diet, exercise and supplements in the treatment of osteoporosis.

The second one I would like to see happen would be examining the so called  rare side effectsof the drugs and how people fare on the drugs.

Big Pharma would not welcome either so it would need to be a university with PhD students undertaking these for their theses.

The first one would work because the proposition would be that natural means can cure osteoporosis which is something new.

The second one would need to include new information and challenge the notion that side effects are real.

Thank you for all that effort Anhaga.  Your regimen sounds very rigorous and perhaps time-consuming - but healthy. 

There is a caution though for others who have fractures using a weighted vest while exercising without checking first with with a PT.

Kind thoughts,. . . . J

 

It is only natural that your sisters experience would contribute greatly to your ideas about the meds for OP, as my fathers experience with diabeties type 2, did for me. What happen to her when she took the drugs and how long did she take them for? Is she ok now?

Actually nothing to do with it. I never went by her choices. She was not even owning up to how bad she was doing on AA. Then she told me after she was half way into the six months on prolia that she was never lining up for that again.

She has a serious problem with her oesophageas so should never have been on AA.

After I had looked into taking prolia and said to her never to take that she would have been reluctant to tell me. Not because I would scold her but because she would want to be right.

I consoled her when she had to suffer through three months of prolia.

No correlation between osteoporosis and diabetes. It is like comparing Crohns and a toothache. 

There is a correlation between siblings though and her experiences further support my choice not to take AA and avoid prolia as well. She took a long time to own her choices but I was steadfast in mine.

 

Have you seen the research done a few years ago on the role of micronutrients in treating osteoporosis?  Google combination of micronutrients osteoporosis.  This study found that micronutrients had a beneficial effect.  I don't think one would have to follow the study protocol exactly, obviously they had to standardize things in order for the study to be valid, but the results were very encouraging and should be adaptable to one's diet and lifestyle.

The weighted vest I use is brilliant - you can start with as little as two ounces, and increase the weight by a similar amount.  I have no spine fractures, and started with five pounds because I was already lugging that amount around in a backpack.  Weighted vest much more comfortable.  I can carry close to eight pounds now.  Trying to achieve the equivalent of what I had lost in body weight over the past few years, but may not get up that high!  And of course, like anything else I hope people have the common sense not to do anything which might harm them.  It is recommended in the literature about weighted vest that one check with one's doctor before using.

You have misunderstood what I said. Your last paragraph sums it up though. Often our decisions are made from our experiences

Hi Kathleen,  I don't know a lot about experimental design, but why not?

Good to see you're keeping well.

J

Thanks for that Anhaga.  I attend a Pilates class for people with OP which is run by a Physio  so I'll run it past her when we resume after the summer. . . 

J

That's brilliant.  I haven't done Pilates myself but I've heard that there is a form specially designed for OP. 

Yes there is and it is hugely reassuring to know it is completely safe for OP patients. Traditional Pilates has a many exercises that could be really damaging ie. actually cause fractures.

J

A book I read really early on in my "journey" promoted this form of pilates - to the exclusion of almost all other forms of exercise which disturbed me, but the rest of the book was very helpful.  I bought the ebook, must read it again soon....

I had no experience with the drugs. My gut told me NO and I researched....

when I was refusing the drugs my sister was saying they were dandy lol! 

It took a long time for her to admit they were causing her issues.

 

We are all different. My gut reaction was, try them and see and I have been fine. I have " chosen " to stay on Riseodronate for another year as my spine has improved from - 3.5 to -2.9 and I would like that to be into the lbm category. My hips which were the same as my back are now at -2.4 and I am delighted. If my spine is -2.5 or lower, a year from now, I will stop taking them 

but continue with everything else I do. I am certain, going natural is beneficial to us all, whether we are on the prescribed meds or not. Like you, over the last few years I have suffered many medical issues and had to endure pain and horrendous treatments. But also like you, I have a supportive husband and we both feel I am making great progress. Surely this is what we want, however we choose to do it.