Questions and concerns about my future...

TiredBones
0 Recommendations

Hello~ I have concerns and questions about what’s next in my life. First my background: 50 year old (that’s my birthday picture - hang-gliding!!) - 5’7” 125lb female, athletic and active all my life. Menopause at 38 years. 8 years of failed HRT, I am now “on my own” for menopause. Haven’t had a period in almost 5 years. 4 years ago had a bone density (WHATS A DEXA??) which showed osteopenia in both hips and back, don’t remember numbers. Tried Boniva… after almost a year into it I had such severe BONE pain that I could not sleep, stand or even think straight. Took some convincing but both OB-GYN and my MD finally agreed that I should STOP the Boniva immediately… this was about a year and a half ago. I have tired to manage my bone density with working out 3x week, also using treadmill. Take 1500 - 1800 mgs of calcium. Took another bone density on Monday 10/27/08. Got “the call” 10/30/08 - I don’t remember the numbers as she rattled them off quickly - but I have ostepenia in my lower back, borderline osteporosis in my left hip and severe osteoporosis in my neck.

My questions:

1) Since I am very active and athletic - do I really have to worry about fractures at my current age?

2) Why are fractures so bad, is it because my bones will have trouble healing? Never (knock on wood) having had a fracture before I do not know why I am expected to be paranoid about them and why they can be considered “life threatening.”

3) Why are hip fractures some times fatal for women in their senior years?

4) If had severe pain with the Boniva - will I have the same type of side effects with RECLAST since it is also a Bisphosphonate?

5) What kind of doctor is best to prescribe and monitor my bone health?

6) Any other recommendations that meds?

Thanks for any input you can provide!!

17 replies

Gloucester

Tired Bones:
I am still shocked whenever I am told that HRT did not work, but I have read that it does not work in 15 to 20 % of the people. You need to do some serious reading. Get the following books: Reversing Osteopenia by Harris H. McIlwain; Better Bones Better Body Susan Brown, the Bone-up Book from the NOF and the Mayo Clinic Guide to Preventing and Treating Osteoporosis. It will answer all the questions you are asking and more you never thought to ask. Also I would add soy to your diet as much as you can tolerate; I say that because I am not in love with soy but I hold my nose and eat it. Soy milk, tofu, natto, miso soup etc. There is a book called the Okinawa Diet and recipes in there using soy products. Stay as calm as possible knowing that stress can be a bone thinner and that whether we love or hate them the drug industry is trying to cure this disease and they are working very hard at it. Gloucester.

brad328192

The NOF's book "Boning Up on Osteoporosis" that Gloucester mentioned may answer many of your questions.

Rheumatologists are the doctors that deal with osteo. They work with patients with rheumatoid arthritis, osteoarthritis, osteoporosis, etc.

DEXA or DXA a "dual-energy x-ray absorptiometry" or bone densitometry, which is used to get an assessment of bone mineral density (BMD). You can read more about it on the wiki page: http://en.wikipedia.org/wiki/Dual_energy_X-ray_absorptiometry

You first question about fractures is a good one. I'd like to know the answer to that. It depends on how severe your osteo is.

Fractures are bad because of the reduced mobility afterward. We need to be exercising to maintain bone density, and if you're laid up recovering, you're not doing weight-bearing, impact exercises.

You wrote that you are active and athletic and use a treadmill 3x/w. Fast walking is considered by the NOF to be useful. Are you doing weight-bearing, impact exercises most days of the week? What about resistance exercises like lifting weight, stretching bands, etc.? Swimming and biking don't count for bone density work.

When you are getting Ca, are you spacing it out during the day? Bodies can't absorb more than 500-600mg at a time, so don't take it all at once.

sdivas

Hello, I would suggest requesting a copy of your dexa report so you are more informed about your bone loss. I would suggest requesting a physical therapist referral to work on safe effective exercises for your osteoporosis. It is a good idea to question the PT as to how many osteoporosis patients the PT has worked with as all PT's do not have the ability to work with an osteoporosis patient. I would also ask the same question of any specialist's nurse before booking an appointment. Fractures are very painful. We need to do all that we can to avoid fracture; working on balance to avoid a fall. Also, I would suggest that you educate yourself and carefully consider before following any advice given on the community. Osteoporosis is a complicated disease; much more than most of us realize. Sandi

TiredBones

Thanks for all the support. I forgot to mention that I have an appointment with my OB-GYN on 11/13 for a follow-up and a discussion about what's next. I figured forewarned is forearmed so I am trying to gather all my facts BEFORE I go see him. He's a great doctor - yet his instant reaction is to throw meds at a problem, and I have a high sensitive to ANY meds - even painkillers, so I have to be careful what I take. He is willing to listen to my alternative suggestions for health maintenance however maybe this time around I have to go the more conventional route for my bone health.

My exercise regime is a PRECOR weight resistance training 3x a week, along with the treadmill for 30 minutes. I have been doing Yoga (on/off) for almost 25 years. Due to a family crises and loads of stress - I have not exercised for over three months. I now have to start slow and get myself back up to strength.

I have a great diet - my only weakness… chocolate. I make all my meals from scratch, hardly any manufactured foods. Lots of greens and fruits, nuts, cheese, proteins (red meat once a week if that) and fish. Allergic to milk but have yogurt with flax seed for breakfast, coffee 2 -3 x a week. I take my calcium at each meal.

What more can I possibly DO!?!?

Gloucester

TiredBones:

If you have been under stress, you need to take vits to support your adrenal grands. I think you need to consult with a nutritionist because store bought vits may not be the best and without expert advice you may not know what you need. Actually, it is disconcerting that osteo doctors never or rarely tell patients to see nutritionists. Another big problem with Western medicine and the indefatigable ego of most doctors. That's why keeping yourself informed is the only way you can protect yourself. As Sandi said, this is a very complex disease and Dr. Brown's book will explain that point in graphic detail. Gloucester

sdivas

TiredBones, you ask what more can you do? At the moment, you may be overwhelmed trying to gather all the information for your next doctor's appt. I've found there is usually something else I can do that make need a slight "tweak" here and there. I think the choice of hormone replacement is not an easy decision. You didn't mention whether you were offered bioidentical hormones. Also, before using any soy products, it may be helpful to have a complete thyroid panel; T-3, T-4, TSH and antibodies (blood test). I can relate to the stress situation, but use the Yoga corpse pose and focus on breathing. Bringing your stress level down could be your "tweak". Also, please consider avoiding any twisting or forward flexion poses. I would also suggest taking an osteoporosis information fast. Sometimes, the information and well meaning advice and opinions can become much too much. It doesn't hurt to step back to get some distance and gain some perspective. Sandi

Uma

Hi, please ask your doctor about taking 1500-1800 mg of calcium. This sounds high to me. You may not need that much if you are eating well.

And one can develop kidney stones if there is too much calcium. I was on 1400 mg, has small kidney stones show up on back X-rays, and after tests, my doctor cut my calcium way back.

FYI - I read on the internet that drinking water (and also warm water with lemon in it) is good to break down stones.

Good luck - just do what you can with all the new info and try not to feel rushed or panicked. Sometimes doctors can try to pressure a patient into taking medicine right away, and if you are not sure, it is OK to give yourself some time so you can make decisions you are comfortable with. This board is a great place to get feedback and support.

Uma

TiredBones

Hi all - I appreciate all the info I am getting. I know enough to filter everything I hear/read (docs included!) and take what works right for me.

Gloucester - I picked up the book Better Bones, Better Body -THANKS! It has already helped with LOTS of my questions.

sdivas - I have my thyroid checked every six months... so far my TSH's are fine. What does thyroid have to do with soy? I have extreme IBS (probably precipitated mostly by stress!) so I really monitor my diet. Soy products tend to give me major GAS!! Tofu...oof! And I drink rice milk instead. Your yoga suggestions about avoiding certain yoga positions... I am curious... why? I thought flexibility is key to muscle and by default correlating bone health. But I do love to tweak.. thanks!! : )

Uma - I forgot about kidney stones - I will certain ask that question at my upcoming appt. And yes I really try to take a deep (yoga!) breath before I panic or make a major decision!

Does anyone know if Lithium, Mucuna Pruriens and Xanax could have an effect on bone density? I have not heard from anyone of my docs about THAT possibility... and not read a thing anywhere.... yet. But as I mentioned I am trying to get all my questions raised and more ready for my upcoming appt.

heid

The latest report I read in the health column of our Sunday paper said that Soy does not help bone health. Sigh... My osteo doc is an edocrinologist. I do not believe that Lithium is bad for bones but anti-siezure meds are (and they are also used for bipolar disorder which runs rampant in my extended family). My doc said to stay away from Yoga as my Dexa scores are severe. I walk a lot, carrying weight some times. I was on Premarin for 18 years to prevent osteo and it obviously didn't work. To see if anyone is reporting the connection between a particular drug and bone loss, go to google and put in words like "lithium and bone loss" and see what kind of hits (if any) you get. Michele

heid

Yes, I have my dexa scores (somewhere here in the house!). They were all in the 'minus three' range; plus I've lost 2" in height. I am scheduled for another Dexa in January. The latest info from the medical field is that women who were on Actonel, Fosomax, etc. for long periods of time, may not show increases in bone mass right away when taking Fortoe. This has obviously been my case. I've been on Forteo for 13 months now. From this list, I now know that seeing a physical therapist knowledgeable about osteop. to learn about safe exercises is probably a smart idea. I've never taken Yoga but will call around and talk to the local physical therapists to see if I can find someone who understands the exercise needs of people like me. Michele

BoneLady

TiredBones, To assess your fracture risk, check out these two websites: http://www.shef.ac.uk/FRAX/

http://courses.washington.edu/bonephys/FxRiskCalculator.html

Sally48

Tired Bones
After reading your situation, the first thing I recommend from my own experience with osteo treatment is to get an Alcat test. You can read about this test by googling Alcat. It is a blood test to find allergies to 100 foods. I was just tested this summer and have found that celiac disease or gluten intolerance can cause osteoporosis. I also was IBS when eating certain foods,but couldn't tell exactly what sometimes. Your doctor can write you a prescription and any lab can draw and send the blood sample to Florida via Fed Ex on a Monday to Thursday so they will receive it before the weekend. I was on soy foods for 10 years. My Alcat test came back extremely allergic to soy and very allergic to wheat. You stay away from your most allergic foods as they cause the red blood cells to swell. Gluten intolerance actually causes internal upsets in the small intestine, so you are not you are not absorbing the nutrients from your foods properly. Since being on the Alcat program, I feel so much better and have lost 4 lbs mainly in the abdomen area. When I read your soy intolerance and you didn't respond to HRT, I feel it could be more the diet. You are very active, but please stay with low impact exercises, and try to get to 127lbs as you need that weight to build bone. Space science found that you need to be 127lbs to build bone, it's weight against gravity is the reason. I have been on HRT,Fosamax, and had problems after four years my scores were better, but had abnormal mammogram, dizziness and irregular heart beats. Went off HRT everything went away all symptons. Stayed on Fosamax ,but have been on it for 14 years and my NP said its time to get off of it, as long term effects are really not know. She said her mother just had all her teeth out because of Fosamax. I am taking a hormone specifically for osteo called Menostar, so far so good. It is a very low dosage .014mg per day by patch, changing once a week. I do hope you will find the right treatment for you, it is a slow process finding whats right be patient, building bone is a slow process. The company Amgen also has a promising new drug not a biphosphate, being tested right now. I think for you starting with diet first will rule out any nutrient absorption problems from your foods. Then go from there. Take care Sally48

TiredBones

Okay - so I went to my OB-GYN yesterday (Thurs 11/13) armed with lots of questions. (actually I forgot them so my daughter had to read them to me as I quickly rewrote them on a borrowed notepad.. sheesh!)
My numbers are: -2.5 neck -2.3 hip -1.5 spine. My "FRAX" (see under Google) 14% risk in 10 years, 2.5% in 15 - 20 years.
We discussed RECLAST - can't use because I have problems with bisphosphonates.
Discussed FORTEO - not necessary because my numbers aren't THAT bad.
Discussed FORITCAL - nasal spray - will get to that in a minute.
Discussed my calcium intake - 1200 - 1500 mg. He said kidney stones ARE NOT caused by that amount of consumption - that it might actually help PREVENT certain types because the stuff that stones are made of binds to the calcium that is passed from the body.
Discussed STRONTIUM - he said it is a “heavy metal” which not enough studies have been done on.
He encouraged me to continue with my YOGA and my work-outs - that my numbers have not changed since my last bone density test two years ago - so it is working to keep my bones strong.
BUT - he stated that I have reached the point in my life that I can not just maintain the bones (density) I have but need to give my body a chance to start rebuilding what is lost. Sooooo
EVISTA is what we settled on. The thought of a daily nasal spray bothered me too much (but may have to anyway?!?) so FORTICAL is my fall back option. EVISTA is an anti-estrogenic - which is supposed to “act” like estrogen and help build bones and prevent breast cancer (huh?). It is not HRT or birth control. The down side (there is always something!) is that I may experience HOT FLASHES and migraines! I started menopause at 38 yrs - I have had 12 years of hot flashes, why do I want more???? And I had to stop HRT because of migraines.
So I feel like a guinea pig - but believe this is my best option. I will continue my calcium intake, my exercise and yoga. I will be smart about my actives - skiing?? hang gliding?? And see where this next journey takes me…

nkerr

The nasal spray is nothing. I've been using it for almost 2 years with no problems. Used Actonel for a year first, but gave me such bad reflux I had to change. Can't do any of the ingested ones because of my reflux, so spray it is.
Take a deep breath and don't let yourself be over whelmed. That's how I felt right at first, but things do settle out and you winnow the wheat from the chaff for yourself. This forum has been quite positive for me.
Good luck.
Naomi

huessysignoret

Dear Tired Bones -- I'm very interested in being able to talk to you, especially about Boniva. I've asked you to be my friend, but am still awaiting a reply. Would you mind adding me to your f riends list? I'd really appreciate it. I think we have much to discuss. (And you don't sound tired at all.)

Thanks

Pam

TiredBones

To huessysignoret~ Help! I don't know how to add friends!?!? I don't go to this site often enough to figure out how, but will keep trying and let you know!

huessysignoret

Hi -- just click on my picture. It will take you to my home page. On the right, next to my picture, you'll see options: "Add as a friend," "Send me a Message," and, I think, to others. Click on "add friend," (and you can send a message with that friend request) and I'll get an e-mail saying you want to add me. I'll click on that, which will take me back to you, and I'll accept your invitation, and send a message, too.Then, you'll get an e-mail saying I've accepted, with a link to click on, which will take you back to me, etc., etc. I think that anytime you want to add a friend, you just click on their picture (or place where a picture would be). If you know the screen name but don't know how to get to that person's home page, put in the screen name as an Inspire search term, and that should take you to the person's home page. Hope that's clear -- I just stumbled into it myself. Good luck!

Pam

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