Visit with Osteoporosis Specialist

Gloria · Post by **Gloria** » Tue Mar 10, 2009 5:54 pm

I went to the doctor at the Illinois Bone and Joint Institute yesterday. He seemed to be a pretty typical MD.

He said that my steroid use surely had an affect on my osteoporosis. When I told him that 90% of Entocort stayed in the intestines, he brushed it off and said it doesn't matter.

He wants me to resume the Fosamax. He said that my risk of getting a fracture is greater by not taking it. He acknowledged the small risk of getting a femoral fracture, but said that risk is less than the chances of getting a hip or spinal fracture.

My bone density results weren't faxed as I had requested

, so while we waited for them to be faxed again, I told him the changes in my scores. He said that going from -2.6 to -2.8 in my T-score was probably due to my going off the Fosamax 8 months ago. When the fax arrived and he saw that I had a 2.6% decrease in density, he said that was statistically insignificant because it was less than a 3% difference. In other words, I may or may not have had a decrease, depending on how the test was done, how I laid on the table, etc. He said the percent decrease/increase was more important than the T-score.

I asked him about the effect of my autoimmune disease on my osteoporosis. He said there wasn't any relationship.

Everything I've read says there is a relationship.

The one thing he did say that was current is that I needed to be tested for my vitamin D level. He said that virtually everyone they test has too low of a level and they are testing everyone now. I had the test done yesterday and am awaiting the results. I told him that I take a supplement, but he said it was likely not enough. He gave me a prescription to fill in the event that my test results show that I'm deficient. The prescription is for A WEEKLY PILL OF 50,000 UNITS! I asked him if it's possible to get an overdose of vitamin D and he said no.

I asked him if he had any brochure with recommended exercises. He said walking is the best exercise. When I pressed him for other specific exercises, he told me doing CORE exercises would be beneficial for overall health. He said I could find them on the Internet! Thanks, doc.

So I'm back to the Fosamax dilemma. He thinks I should only take it for another 2-3 years. He said that I probably got the osteoporosis mainly due to menopause. I tend to agree with that because that's when I had my greatest percentage of bone loss.

Gloria

Pat · Post by **Pat** » Tue Mar 10, 2009 6:20 pm

Gloria,

My new doctor put me on 5000 units of D/day for my osteopenia. She also wants me to take Strontium, but I haven't taken it yet. I just don't know about that.

Sounds like you have been to a good bone doctor. Hope it all works.

Pat

Post by **tex** » Tue Mar 10, 2009 8:09 pm

Gloria,

I'm like you - I have mixed emotions about that appointment. Your remark:

Gloria wrote:He seemed to be a pretty typical MD.

sums up the situation quite eloquently, IMO.

As far as his remark about Entocort having the same effect on osteoporosis as prednisone, is concerned, he is partially correct:

CONCLUSIONS: Treatment with budesonide is associated with better preserved bone mass compared with prednisolone in only the corticosteroid-naive patients with active ileocecal Crohn's disease. In both the corticosteroid-free and corticosteroid-dependent groups, budesonide and prednisolone were equally effective for up to 2 years, but budesonide caused fewer corticosteroid side effects.

http://www.ncbi.nlm.nih.gov/pubmed/15704045

Corticosteroid-naive patients are patients who have never previously taken a corticosteroid. Therefore he is correct, when referring to patients who have been previously treated with a corticosteroid, but he is wrong about patients who have never been previously exposed to treatment with a corticosteroid, as far as bone density effects are concerned.

Regarding his remarks about the relationship between autoimmune diseases, (connected with gluten sensitivity), and osteoporosis: Clearly, his answer was based on his incorrect opinion that gluten sensitivity has nothing to do with MC. All one has to do is read any one of this long list of articles, to see that he is completely wrong:

http://www.celiac.com/categories/Celiac ... c-Disease/

From the Merck Manual:

Because synthesis of 1,25(OH)2D (the most active metabolite of vitamin D) is tightly regulated, vitamin D toxicity usually occurs only if excessive doses (prescription or megavitamin) are taken. Vitamin D 1000 μg (40,000 IU)/day produces toxicity within 1 to 4 mo in infants. In adults, taking 1250 μg (50,000 IU)/day for several months can produce toxicity.

http://www.merck.com/mmpe/sec01/ch004/ch004k.html

I'll grant you, 50,000 IU per day for several months is a pretty potent dose, (it's seven times what he prescribed), but there's a lot of difference between a potent dose, and "not possible to get an overdose". Shame on him.

You'll have to make your own decision about whether or not to take the Fosamax, of course, but IMO, when a doctor can only offer a drug that might leave you in much worse condition than when you started, that's not much of an offer. It forces you to play Russian Roulette with your health. Not many things scare me, but the bisphosphonates scare the devil out of me.

Tex

Dee · Post by **Dee** » Tue Mar 10, 2009 8:57 pm

Hi Gloria,
My PCP, who is a female, was talking to me at my last visit about Vitamin D and said she has a couple female patients that she has on the weekly pill of 50,000 IU's.
I have osteopenia so I'm going to continue with my Calcium & Vitamin D3 4-5,000 IU's.
My sister stopped her Fosamax after 5 years.

Dee~~~~

Polly · Post by **Polly** » Wed Mar 11, 2009 7:12 am

Gloria,

I'll be interested to see what your blood test shows. I hope he ordered the right test (the "25 hydroxy" and NOT the "1,25" test.) At least he seems to be on the cutting edge with regard to vitamin D, so I'll give him some credit.

I have a great little book of exercises for osteo: "Walk Tall, an Exercise Program for the Prevention and Treatment of Osteoporosis" by a physical therapist named Sara Meeks. I got my copy used at amazon.

I have osteopenia and have elected not to take Fosamax. One reason is that I'm always having lots of dental procedures, which increases the risk for jaw necrosis from those drugs.

Love,

Polly

Bifcus16 · Post by **Bifcus16** » Wed Mar 11, 2009 5:25 pm

Hi Gloria,

As part of deciding whether to stay with Fosamax, you might wish to do some research on curcumin and bone density. If you choose not to go with the doc's script, then substituting your own research may be a sensible alternative. Strontium is the other thing they talk about.

Exercise wise, I guess I should admit to being a retired massage therapist, so I actually have had decent training in this sort of area.

The objective is to 1) lay down bone, or at least limit loss; 2) avoid fractures.

1. Load bearing exercise.
2. Strength.
3. Flexibility.
4. Proprioception (balance).

1. Load Bearing exercise. This encourages the body to lay down new bone in the bones that support your weight, especially the lower body, or at least reduce loss in those areas. Weight bearing exercise is walking, running, tai chi, golf, tennis, skiing, most gym group classes etc. Anything where you are carrying your weight on your feet. Exercises that don't help are where your weight is supported by something else - eg, cycling, swimming, canoeing, rowing. Quantity wise the recommended bare minimum is 30 minutes a day, but ideally aim for an hour a day, most days. Doesn't need to be in one session.

2. Strength. If the muscles that surround your key bones are strong, you are less likely to have a fracture. You are also less likely to fall. Pilates exercises are brilliant for strengthening the core muscles that surround and support your spine and abdominal area. Get a DVD if you can't get to classes. Or just do crunches. A gym weight routine with squats and leg presses is great for lower body strength, if you do it.

The minimum must do exercise is chair squats: - Pretend you are going to sit down. Stand in front of a chair, legs slightly more than hip width apart and slowly lower your body as if to sit down. Just as your buttocks or trousers skim the seat, stop and slowly stand back up. Use your thigh muscles, don't hold the arms of the chair. Aim to do it without bending forward at the waist excessively. This provides a good basic functional squat. Aim to do 15, take a 1 minute break, then another 15. If this is difficult at first, aim for a smaller number such as 5 and gradually increase. If it is too easy, add weights. Do this every second day.

3. Flexibility. This prevents falls because if you stumble your body has a greater range of movement to work with. Do a basic routine that covers front of the thigh (quads), back of the thighs (hamstrings), side to side movement of the spine, forward and backward movements of the spine, and a spinal twist.
Do this at least three times a week, but ideally daily.

4. Proprioception. Many osteoporotic fractures are caused by falls. Avoid falls by having good balance. Proprioception is a fancy term for being able to sense that your balance is going, and recover it - hopefully without even realising it. Practice standing on one leg each day. To start with, just lift one foot and rest it on the other ankle, or on top of the other foot. Hold for a minute if you can. Repeat with other leg. As you progress, bring the foot further up the leg, until you can do the yoga "tree" pose. Try introducing movement - so bring the foot up, and swing it slowly behind you then in front. Try bending at the waist with one leg stuck out behind and arms wide- aeroplane pose. Explore and challenge what your body can do. Yoga DVD's that focus on balance are good for this, as is tai chi. Or just stand on one leg in the supermarket queue!! I stand in tree to mash the potatoes, and have been known to use aeroplane to empty the dishwasher

I used to do this with patients in the clinic, where we can work out what they are willing to do, and plan a routine to suit.

I know it sounds like a lot of work. But as always it's about priority. And doing something beats doing nothing, even if you can't do a full routine.

Let me know if you would like me to hunt down good stretches or expand on any other areas.

Cheers,
Lyn

Gloria · Post by **Gloria** » Wed Mar 11, 2009 6:35 pm

Polly,
Thank you for the book recommendation. I'll have to look for it. I expect to get the test results on Monday and will post them.

Lyn,
I appreciate the specific exercise recommendations. I'm going to print the recommendations and try to be faithful about doing them.

Gloria

JoAnn · Post by **JoAnn** » Wed Mar 11, 2009 6:56 pm

Hi Gloria, thanks for sharing all the information. I had a DEXA scan 2 years ago which showed osteopenia. My PCP put me on 5,000iuVitD last fall because I was so low. I'm still on that dose. I don't know when I'll be scanned again since I changed doctors, but I'm sure this will become an issue for me. I'll have to ask at my next visit. I feel like I'm in the "Humpty Dumpty" phase of life just trying to put everything back together! JoAnn

Post by **tex** » Wed Mar 11, 2009 8:17 pm

Gloria, Pat, and anyone else interested,

I got sidetracked, and forgot about the strontium that Pat mentioned - thanks, Lyn, for bringing it up again. In many parts of Europe, including the UK, strontium ranelate has been licensed for use to treat osteoporosis, and clinical trials have shown that it has a lot of promise:

http://www.drweil.com/drw/u/id/QAA360803

To show you what strontium can do for bone density, please read this article written by a user, at the link cited below. Notice the comparison of her dexascan history data, from 2006, (when she started using strontium), and 2008, (at the age of 76):

Left Hip: (2006) T-Score -1.2 -- (2008) -0.6

Lumbar: (2006) T-Score -1.4 -- (2008) +0.2

http://onlinejournal.com/artman/publish ... 3458.shtml

That's a pretty impressive response, especially at her age. I didn't realize that it was available in the U. S., but if Pat's doctor is recommending it, then there must be a way to obtain it.

Here's the 2004 article in the New England Journal Of Medicine that inspired all the recent interest. You can read the full text of the article by clicking on the link, below the abstract.

http://content.nejm.org/cgi/content/abstract/350/5/459

Tex

Gloria · Post by **Gloria** » Wed Mar 11, 2009 9:38 pm

Interesting articles, Tex.

My Dr. mentioned a couple of other drugs - one of them might have been strontium, but I don't remember because it wasn't familiar to me. He mentioned an IV drug, but said insurance companies were reluctant to pay for it (it's more expensive) unless it was shown that the patient reacted adversely to bisphosphonates. Since I haven't had any adverse reactions to Fosamax, my insurance probably wouldn't pay for it.

It seems that the problems with Fosamax occur after taking it more than 5 years and/or it seems to lose its effectiveness after that time, so the current recommendations are to stop using it after 5 years. The doctor said that Fosamax has been used longer than any of the other drugs and therefore has been studied more. Many of these new drugs seem promising, but since they are new, it's unknown what the long-term risks are.

Gloria

Post by **tex** » Wed Mar 11, 2009 11:17 pm

Gloria,

What bothers me the most about the bisphosphonates is the unnatural way that they interfere with the normal bone growth and resorption patterns. Really, if you look at the bottom line, about all that these drugs do, is to allow dead bone tissue to remain in place, long after it should have been reabsorbed by the body. Sure, this makes the bones appear to be denser, but that doesn't mean that they are any stronger. How could dead bone tissue add any significant strength to bones? Also, some women have problems in less than 5 years. Here's a pretty good description of how Fosamax works:

http://www.womentowomen.com/bonehealth/ ... erapy.aspx

Tex

starfire · Post by **starfire** » Thu Mar 12, 2009 7:59 am

That is exactly why I stopped taking Fosamax. I researched it and found a very good description of how it works and said........... Phooey on that!!! I thought there had to be a better way. Luckily added activity + calcium + Vit D did cause an improvement. I have only had one bone density since the original diagnosis of opteopenia. If the doctor "forgets" to have it done, I don't remind him/her.

Maybe I'm just sticking my head in the sand but it's my bones and I don't want them to be predominately dead. Dead bone is not resilient even if it does show up dense in an xray. Just my opinion. Everyone has to decide for themselves.

Love, Shirley

JLH · Post by **JLH** » Thu Mar 12, 2009 8:13 am

I found out the mega Vitamin D pill was in soy, so I couldn't take it.

Polly · Post by **Polly** » Thu Mar 12, 2009 8:24 am

Jan,

Great info! Thanks so much.

Love,

Polly

Pat · Post by **Pat** » Sat Mar 14, 2009 8:46 pm

The strontium that my doctor gave me is a supplement not a prescription. It is strontium carbonate 340 mg. The bottle says take one to two caps daily on an empty stomach and to not take at the same time as calcium. I haven't taken it yet. Just don't know enough about it. Thanks, Tex, for the info you found.

Joan,
The vit D I am taking is Vit D3 5000 IU in medium chain triglycerides (MCT oil). I got it from my new doctor.

Pat