Osteoporosis treatment???

I live with platelets in the 30,000 without treatment for now. Just found out I have Osteoporosis. Does anyone know of treatment that would be safe to use without having to go back on predisone? My doctor tells me to take calcium and vitamin D but I don't think that is enough. Don't want any fractures so appreciate some feedback here. Thanks

Charlotte:

There are quite a few meds used to treat osteoporosis. Why do you think you'd need to go back on Prednisone to use them?

I actually like your doctor's idea of calcium and Vitamin D. Most of the treatments for osteo have side effects. My Mom (and others I know) have had a heck of a time dealing with those side effects. My Mom used those meds the past few years and broke a hip any way.

Here is a list:

www.webmd.com/drugs/condition-2896-Osteoporosis.aspx?diseaseid=2896&diseasename=Osteoporosis

I look at osteoporosis from a different angle - a dear person had it and it was horrible the pain he was in, how he shrunk in height, how he had to shuffle along instead of walking normally and how his rib cage ended up resting on his hip bones causing bone on bone pain. Know someone else with osteoporosis, probably from prednisone, and she's in lots of pain and she takes something for it and for the pain. I get that diagnosis, I'm not going to mess around with it - I already take calcium and D and have been for years.

Now did the test come back osteoporosis or osteopenia [lower than normal bone mineral density but not low enough to be osteoporosis]? That could make the difference.

I get that, Melinda, I'm having problems too, but the side effects I'm talking about were horrible. One woman required surgery on her jaw, and my Mom was barely able to function with the side effects then broke her hip anyway. She went through four different meds trying to find one she could tolerate. Another woman I spoke to insists the osteo med killed her mom.

Just like ITP, the treatments can be worse than the illness itself. If anyone here takes any of those meds successfully, I hope they chime in. I'd like to hear some good stories about them.

I've been thinking about this since this morning. I need to add some things. I didn't tell the whole story.

The woman I know who had the jaw problem didn't have necrosis, which is one of the known side effects. She had excess bone growth which was in the form of a very large, painful lump. It had to be removed. She had been using the osteo meds for about three years at that point. It's three years later and she is still taking them. She recently broke her leg and more recently, a rib. She's only in her early 60's.

Two and a half years ago, I researched all of these drugs to try to find one for my Mom that had few side effects. I didn't like the side effects of any of them. She decided on Prolia at the urging of her doctor and was nearly two years into the injections when she broke her hip. Two weeks after she did, I got a message from her GP that she was due to schedule her Prolia shot. I just chuckled because she had a few more months of rehab to go before she could get to their office. While in rehab, it was discovered that her Vitamin D was low. Now tell me how that happens when an elderly woman is being treated for osteoporosis? Then they found that her calcium level was too high. That can be indicative of some cancers, so she went to her oncologist (past cancer patient). He told her to stop using Prolia because he thinks it was causing the low Vitamin D and high calcium. We're waiting now to see if that was the cause, but as far as I know, no one has done a thing about the low D.

I've been having problems with low D for years now. I've been on high dose scripts so many times I've lost count. It keeps dropping when I stop the script, then I get another one. For many years, I figured my D level was fine because I took an OTC D supplement every day. Well, it wasn't and those don't do squat for me. Because of many years of Prednisone and a family history of osteo, I know I'll have it sooner or later, so I am trying to be proactive now. I don't have much faith in those bone building drugs at this point.

So much research has been done about bone health and the articles that I've read lately say something different than what we've been taught. Old school - take Vitamin D and Calcium. I've been reading that you need to take Vitamin D and Magnesium. I've read to even skip the Calcium....if your Calcium level is good, you don't need it, but you do need Vitamin D and Magnesium. Apparently, Magnesium levels cannot be tested properly with a blood test. You can be low and not even know it. Magnesium helps the body to absorb the Vitamin D. There is so much more to it but the key is prevention. It's too late for many of us, but it's not too late for the younger crowd. I keep trying to pound this into my daughters head. She has Graves like Melinda and those meds can be hard on the bones too. She doesn't want to listen though and has her hands full with other health issues. I get that, but she'll be sorry later.

This is a very good article that explains it all.

www.huffingtonpost.com/carolyn-dean-md-nd/bone-health_b_1540931.html

Here are a few more:

www.ncbi.nlm.nih.gov/pubmed/21505219

www.naturalnews.com/042007_magnesium_bone_health_Dr_Carolyn_Dean.html#

www.osteoporosistreatment.co.uk/magnesium/

www.progressivehealth.com/magnesium-deficiency-linked-to-osteoporosis.htm

Sandi yes there are side effects and as you say there are side effects to anything one takes. I don't see posts as above to anyone who asks about the ITP treatments, except for splenectomy, and heaven knows there are many many bad side effects to the treatments! You are being selective [sorry my friend, that is just my opinion] as you are when you talk about flu shots.

The good and the bad need to be weighed. And if one causes side effects you try another - if all cause side effects then you don't take.

How did your mother break her hip?

I don't have osteoporosis and I take calcium and D [magnesium when I think of it] and drink milk and eat yogurt and yet I recently broke my foot. Things happen.

Do you know anyone who has lived with the "side effects" of osteoporosis? Nasty, it is nasty. But I'll tell you, you do not want your rib cage resting on & grinding on your hip bones!!

My stepmother has it and she takes one of the meds and she has had no problems with it.

People need research for themselves, weigh the pros & cons, and in the case of ITPers talk with their hematologist too or have their PCP & Hematologist get together. A diagnosis of Osteoporosis is not something to sneeze at!

Charlotte, are you asking whether a prescription osteo treatment (such as Fosamax or other bisphosphonate) will lower your platelet count and thus, cause you to need prednisone again?
Since almost anything has potential to cause an ITP platelet drop, I don't think the answer is foreseeable.

However, I have osteopenia and have been taking prednisone for 16 months. My hematologist sent me for a bone density scan last summer to see if the pred was harming my bones. The result was actually improved over what it was before I started taking the pred, but Dr. Hema told me I need to be on an osteo med anyway. I declined and always will.

My point is that my hema apparently sees no conflict between ITP and an osteo Rx product or else he wouldn't have recommended it. Other MDs might disagree, but I'd bet the farm there is no medical consensus about it.

Melinda - you are right. Everyone has to weigh the pros and cons for themselves. As I said, I'd love to hear some good stories about the osteo meds. Maybe it would change my mind. I only know what I've learned from the people I know and the things I've read. I wish I felt more positive and confident about them; that would make things a lot easier for me when it comes up. And it will. My grandmother used to snap ribs just from sneezing.

My Mom can't quite figure out how she broke her hip. She was at work and just came in from outside. She turned around to close the office door and just suddenly fell. She doesn't remember slipping or tripping. One of the nurses at Rehab said that many times, people often fall after the hip breaks, meaning that it just snaps on its own thereby causing the fall. It's a good a theory as any since we have no answers. The bones in my feet keep doing the same thing. They just break with no good reason. I stopped going for x-rays....no point. I know that I have to keep my foot straight for 6 to 8 weeks so I just do that. They are just stress fractures though, I wouldn't do that if the bone were cracked in half. How is your foot, by the way?

Ha, my problem with meds includes most meds on the market. As time goes on, I have more and more damage to my body that has been caused by medications. I sometimes wish I'd never jumped on the medication bandwagon in the first place. I would be better off right now. I don't have a normal life, or one that is even close to it. It was all caused by years and years of medications. My doctors are still trying to pile them on. As far as ITP meds, I am constantly talking about overkill with treatments and saying less is better. I am constantly saying that counts above 30k are safe, letting people know that you do not have to have normal counts to survive. I am so thankful that watch and wait is becoming popular with children because they are too young for this Merry Go Round. I realize that drugs save lives but sometimes I wonder if all of these newly developed meds aren't worse than some of the illnesses they treat. Many doctors get paid to push certain meds and I know that my mom's GP was pushing Prolia for that reason.

I wish I had someone years ago that would have made me question the use of the medications I've taken. I sure question them now. I was so eager to fix the problem that I didn't stop and wonder if the problem needed fixed, or if it could be fixed. I used to think a medication side effect was suffering through diarrhea for a few days. I was naive.

This is a good discussion and we need people on both sides of the issue. The pros and cons are what make people think and investigate for themselves. And just for the record, just because I say something, that doesn't make me right. I'm glad that you disagree and make that known. Your thoughts and beliefs are just as important as mine.

Relly enjoyed reading everyone comments here. Has now given me reason to stay with the Vit D and calcium and not stress over it as much. My dr says I am at hip fracture level and all osteo meds have thrombocytopenia side effects so she was afraid to put me on one. Then I would have to be on another dose of prednisone which has side effects of causing osteoporosis. Thanks for your replies.

I took Fosamax for 1 year and then switched to boniva so have been on these meds for 3 years now. I take a liquid supplement that has calcium, magnesium, and Vit D. I have been off and on prednisone for 15 years. My bone scans have shown slight improvement since my original diagnosis of osteopenia 4 years ago. I dont have any noticable side effects from the meds. There hasnt been any effect on my platelets.

It is hard to know what to do, I hate taking medicine. But I watched my mother go through horrible pain from spinal stress fractures so I think that if there is any chance to prevent that I will take the risk.

Thank you for your story, Dru! I'm glad to hear Boniva is working for you. Spinal stress fractures scare me as well, I've known of others with that problem.

Glad to hear you've added magnesium to the mix.

And the spinal stress fractures lead to worse things if ignored.

Dru I'm happy for you that the medication is working and you are having no problems with the meds. Good for you!

I think you do understand what I was saying above about the rib cage resting/grinding on the hip bones - this person was male so the doctors never thought about osteoporosis and it took forever for a diagnosis, maybe had one been made soon he would not have had to go through such hell. I am with you on "if there is any chance to prevent that I will take the risk".

Have heard that too Sandi - in older folks sometimes it isn't a fall that causes a break but a break that causes the fall.

My foot is doing better, thanks for asking - still swollen, still stabs of pain where the break was.

There is recent new information coming out about the importance of vitamin K2. K2 is not the vitamin K responsible for blood clotting. K2 "ushers" calcium to the bone tissue where it belongs instead of letting it pool in the blood to do harm to the arteries and kidneys.

You may have noticed in the news recent cardiologists' warnings regarding the role of calcium in cardio-vascular disease. They say calcium should come from diet and that supplements should be avoided. It seemed such drastic and simplistic advice, I delved deeper. That led me to the connection between K2 deficiency and calcium malabsorption.

That's the problem with 'specialists'. Cardios say, "Don't take calcium, it's bad for hearts." Osteo specialists say, "Supplement with calcium, it's necessary for bones."
Medicine is so compartmentalized, no one ever looks at the whole picture.
It leaves women with weak bones stranded in the middle of the road with traffic speeding at them in both directions. No wonder so many are driven to Big Pharma out of confusion and sheer desperation.

Janet:

I've been reading the same thing about K2 and avoiding calcium. It seems convincing and the explanation is reasonable. It does confuse people and they don't know which way to turn. It's hard to change old beliefs but I always think, "what if they are right"?

Okay, here is--so far--a good story about Fosamax. I've been on a half-dose (40 mg/week) of Fosamax (Alendronate) for most of the 14-1/2 years that I've been treated for ITP. My ITP has been controlled pretty well by fairly low doses of prednisone (usually between 3 and 10 mg/day). I am at high risk for osteoporosis because, besides taking prednisone for so long, I am thin, have never had children, and have a family history of osteoporosis. I recently turned 74.

So far, I have osteopoenia, but not osteoporosis.

I'm part of the Kaiser medical system, so my doctors know each other. My hematologist advises me on ITP. My endocrinologist (who also ran Kaiser's jaw-breaking-Alendronate studies, which I participated in--and passed) advises me on bone health. She orders a bone density test every two years. Every once in a while, when my platelets are high enough to require almost no prednisone, she suggests a break from the Alendronate. I've had a few breaks--one lasting about half a year.

My bone density isn't great, but it is considered normal for a woman of my years. I consider myself very fortunate in that the prednisone hasn't caused any apparent damage (yet). I do credit the Alendronate, at least in part, for my good fortune.

Because of osteoarthritis, my main form of exercise is water--swimming and exercising in the water with weights. I do quite a bit of walking and stair climbing. I've been advised to supplement my diet (which usually includes a pint of nonfat milk/day) with 300 mg of calcium citrate and 2000 units of Vitamin D.

My endocrinologist and I have considered Forteo instead of Alendronate, but Forteo has a shorter track record, so I'm sticking with Alendronate for now.

Karen

Thanks for the story, Karen! It sounds like you are doing pretty well. Exercise can play a big part in that and I'm glad you are able to keep doing it.

Two points:

First, As stated by others, MAGNESIUM! And even more important, BALANCE!
It is important to maintain a healthy balance between minerals. Magnesium is necessary for proper absorption of calcium. Magnesium is also difficult to get in a regular diet of foods grown on fertilizer-depleted soil, whereas calcium is usually plentiful if one eats and drinks dairy. CalMag or Cal/Mag/Zinc preparations are usually in good proportions.

Second, not mentioned, AVOID excessive consumption of COLAS and some other soft drinks that contain PHOSPHORIC ACID which depletes calcium. Switch to citrus and other clear soft drinks that usually contain citric acid instead of phosphoric acid. Read the ingredients label to be sure.

Thanks for the Magnesium reminder. I need to take it today. :woohoo:

And....avoid caffeine! It also destroys bones.

That's two bad things about colas: caffeine and phosphoric acid.

Ellen and I are both cutting way back. Have a SodaStream and love that sparkling water, but "The Real Thing" tastes awfully good once in a while!

I guess I'm a believer that unless told need to take more I'm not going to. Zinc - not sure about that one, know I wouldn't take extra if not shown I need it.

Orthopedic surgeon who saw me because of broken foot wanted to make sure I was taking a calcium supplement. That I do.

I guess I am just skeptical because all vitamin supplements I look at have so dang much of everything in it I'm afraid to take it. My new hematologist told me to take a multi-vitamin - she said get one with a low E in it - well all I saw yesterday was bottles that had 125%, 100%, 200% E in them. What has made us a society that feels we need to have such high doses??

Why would a normal Joe Blow or Susie Homemaker need to have 1,250% normal daily requirement of a vitamin - that's what I saw on one multi-vitamin bottle I checked but can't recall which vitamin it was.

Came home with no multi-vitamin - they all scared me because of the high amounts of everything in them!

If needed yes - but I want to know I need super-dooper-extreme amounts of something before I take it.

I am a week-and-a-half late with this, but finally got into the research on Vitamin K2. The research looks pretty solid and show a wide number of benefits, as Janet stated.

Of special importance to ITP patients, the Wikipedia article on Vitamin K cited four scholarly articles that each found Vitamin K2 (in the form of MK-4, menatetrenone) protected against bone loss in patients, including children, being treated with steroids.

Vitamin K2 comes in several forms, depending on the chain length. All four of the studies mentioned used MK-4, while other studies have used MK-7. There is controversy as to whether one or the other or both are equally effective.

I used to stay away from multi-vitamins because they had such a low content of vitamins that I didn't think they even did much. I haven't looked at them in years. I still stay away from multi's because of the added fillers and such. I now take high dose individual vitamins, but mostly only the ones with which I have a track record of being deficient. They have no fillers. Each bottle is expensive and it's a pain in the butt taking all of those pills, but it's the way to go for me. I still usually have low-normal levels of some vitamins. I have so many things that have fallen through the cracks over the years that I won't wait for a doctor to tell me to do something. I work on prevention on my own. So far, it's caused no harm.

As for the calcium debate, everyone should do what they are comfortable with. You have more trust in doctors than I do, Melinda. I think about all of the things that have changed though over the years which no one pays much attention to. Such as: the reference range for the TSH. How many doctors and labs still go by the old ranges and refuse to change? It's been years. I don't know if the labs finally changed it or not, I haven't seen one in a while. I bet some doctors still do not use the new numbers. Information changes but doctors don't like that because it goes against what they were taught and what they've been telling patients. It's a matter of refusing to believe that something you've always known may be false. Maybe the younger generations of doctors will be the ones to finally change old school ways of thinking....until new things pop up again.

I have come across enough strong, credible research to convince me that Calcium alone doesn't protect bones. It also takes Magnesium, Vitamin D and K2. Apparently, Rob and Janet have read it also. Anyone who is truly worried about bone health and takes Calcium religiously, what's the harm in adding the other three as a safe guard? What if that information turns out to be right? The only reason it's being debunked is because it goes against hundreds of years of beliefs. As medical knowledge advances, why couldn't we believe in the possibility that they have been wrong all these years?

GNC sells Calcium that also includes Magnesium and D3. None of their Calcium bottles have just Calcium alone.

In her book "Lets Eat Right to Keep Fit", Adelle Davis wrote: *The correct proportion appears to be approximately twice as much calcium as magnesium. Whenever a calcium supplement is used, magnesium likewise must be increased.
Copyright 1954 Hey! That's the year I was born! Over 60 years ago! I have known this information since 1971. It has taken this long for the medical profession to get this straight???

Adelle Davis was also a big proponent of Vitamin D, although I don't recall that she connected it to bone health.

No, I do not trust the medical profession... and don't get me started on that ridiculous Framingham Heart Study that vilified dietary cholesterol!

You have more trust in doctors than I do

Sandi I have trust in some of my doctors - not all of them, and you know I've fired a few. You know I question, and you know I read up on anything I'm offered.

Blood work results - those a doctor can't change.

I did find a couple multi-vitamins without many fillers but I don't want to take a multi-vitamin that has over 100% of anything in it unless I need it - like I said that one had something that was 1,250% of the RDA, no that is ridiculous!

Melinda, have you considered Gummies? Seriously! 2 Gummies give you 50% or less of most vitamins. Doesn't have most minerals though, and does have sugar.
www.puritan.com/multivitamins-067/childrens-multivitamins-minerals-gummies-015112

Melinda wrote: Sandi I have trust in some of my doctors - not all of them, and you know I've fired a few. You know I question, and you know I read up on anything I'm offered.

I know, Melinda.

I was so saddened to read what Rob16 said! I have to decided in this case to not only ignore what he said but will also not follow his advice!

STOP picking on COLAS .... Before they end up taking my Addiction off the market! COKE COKE COKE GOT TO HAVE COKE! lol How am I supposed to continue to work full time nights if I can't drink my Coke Cola??



Not sure who mentioned it earlier about their bone density going up on prednisone. Just throwing this out there could you have another auto-immune issue attacking your bones?

I hear you Julia. And I am in Atlanta, home of Coca Cola so what I am saying is pure blasphemy.
But Mountain Dew has 61% more caffeine than Coke, without the phosphoric acid.

Julia the thing is if you just wait a while the powers that be will do a complete turnaround and tell you that drinking colas is the best thing you can do for your body and if you don't drink coke or mountain dew or any of the others like that your body will never absorb any type of vitamins or minerals and you will get this disease or that disease and your heart will enlarge your blood veins will dry up and and and ...........

I just can't believe this stuff any more - it is like the boy crying wolf, they say things so often and then they contradict themselves.

Rob - I'll check gummies, thanks.