re health care providers

RE the topic of finding a health care provider for osteoporosis - I was first diagnosed by chance. My internist decided to order several tests when I turned 40 including a DEXA. We were both shocked when the results came back. He is a nice guy but I didn't feel he was very well educated about the disease.

So I became my own advocate (which I highly recommend anyone with osteoporosis do!) and sought out highly thought of rheumatologists in DC. I went to two of them (yes its not cheap and insurance doesn't cover much but its my life). One was this highly respected physician with fancy credentials from Johns Hopkins. I was disappointed. I didn't do a thorough examination and I left feeling like he should have done and offered much more. This was confirmed when I went to another highly regarded rheumatologist who ran a battery of tests and did a much more through exam. She made recommendations of medications I should be on etc. She was also upfront. I told her I'm interested in Forteo because I'm young and my scores are so bad. She said she puts her patients who are over 75 on Forteo but she is not comfortable (the drug hasn't been out long enough) to put younger patients on it. She said she was sure I could find other physicians in the community however who would put me on Forteo. I just felt like she gave me a thorough examination and I know she specializes in osteoporosis.

I agree with others who say you should definitely take in a checklist of things to talk with your physician about. As we all know they seem to have little time to spend with patients so a checklist helps speed things up and makes sure I don't forget to ask anything. I bring one copy in for the physician and one for myself. But on the other hand if a physician doesn't seem to really want to listen or take your concerns seriously, I say find someone else. You really have to be a bit pushy and your own advocate. You can't be intimated by the physicians. If anyone needs a recommendations for physicians in the Washington DC area I'd be happy to help. \

Thanks. Hope everyone has a good weekend.
B
Washington DC

By Gloucester
Posted October 25, 2008 at 2:07 am
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Cald:

Thanks to you I did check the woman to woman (or is it women to women) website and I was astonished at how good it was. You are right they see patients from all over the country and do have phone consultations. An interesting point about the practice is that none of them are doctors; rather they are nurse practitioners or something like that. There is no doctor they even consult with. Apparently in Maine you do not have to be a doctor to practice medicine. I had no idea the AMA would ever allow that. I confess there was a pregnant pause when they told me that; I was having a hard time digesting it. You might ask why given my own frustrating experience with my doctor at UCLA. I guess I am still programmed but I think I can get de-programmed pretty fast. The key is do they see and have they treated a large number of people with osteo.
Gloucester

By KathyS
Posted October 24, 2008 at 6:00 pm
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I am wondering about the follow up drugs also after Forteo... I know they will have to put me on some type of maintenance med or yes you lose the stride you make with Forteo... There are several family of drugs and yes, I'm hoping that they will be coming out with something new in a year or so... but it seems the whole Osteo struggle hasn't been taken seriously until recently ( last ten years ) we are test subjects in my opinion,..

By Cald
Posted October 24, 2008 at 5:49 pm
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Yes, Dr. Northrup was one of the founding Drs. I haven't checked out their reliability, however, I'm passionate about health and wellness and do a lot of reading on such - even before being diagnosed w/osteo. Some of the resources I frequently check are: Mayo Clinic, Harvard Journal Review, John Hopkins, CDC, Nat'l Inst. of Med, Dr. Z, E-fitness... Based on this, I feel I'm a bit discerning and their info is scientifically based, clear, understandable and I like the background aspect they give of each condition. Have you heard anything about this group that I should know?

By BikingBarbara
Posted October 24, 2008 at 4:37 pm
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Hi, Yes I agree osteoporosis is a complex disease. Dr. Lane at the Hospital for Special Surgery/NYC, supposedly a top specialist in Osteoporosis, said I should try Forteo next since Fosamax and Boniva didn't help. I asked him what I do after I'm done taking the Forteo. He said (don't laugh;-) that new drugs are coming out all the time and not to worry about it. I want to believe him but . . .
Another thing. I may need to have a knee transplant surgery (OATS) done up in NYC at the Hosp for Special Surgery sometime this winter. I was racing my bike and fell off onto my knee damaging the articular cartlidge. Dr. Lane said I should wait to start the Forteo untli after I am recovered from the surgery. It can take up to a year I hear. He said something about not knowing how my bones will do.
Just wondering if anyone else has been told to stop the meds during ortho surgery etc. Thanks. Looks like a rainy Saturday in DC.
Hope everyone has a good weekend.
Barbara

By Gloucester
Posted October 24, 2008 at 3:57 pm
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My doctor and I did not discuss Forteo very long but the point you make is excellent. Forteo is only as good as the drug after it. What's the point of taking a dangerous and expensive drug if you are just going to lose the mass in a few years following treatment??
I don't have an answer except I thinking HRT.
Gloucester

By Cald
Posted October 13, 2008 at 10:17 am
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For those of you needing to find a doctor knowledgeable of osteoporosis, I've found an encouraging resource with Women to Women (located in Maine - I think). I've gotten all of my info from their website at www.womentowomen.com. They combine alternative and traditional medicine and give a very thorough background on osteoporosis, medications and other related issues. They accept patients from around the country and offer phone consultation as well. I do plan to schedule an appointment with them soon.

By tina178
Posted October 13, 2008 at 9:53 am
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I found out I have Osteopena (severe) in May and I am still looking for a doctor to work with. I ahave in the past months read a couple of good books, joined here, and did a 360degree turn around on foods that are not good for Osteo...number one very LITTLE caffine no more than 300 mgs per day as compared to 920 or more oer day. Low salt in take no more than 2000mgs per day, cut back on sugar, switched from white bread to only whole wheat (even my baker makes me whole wheat dinner rolls). These foods are said to pull clacium from the bones for diegestion...so I am still searching for a Dr. to do my blood work and keep me updated on new developments.

Christine

By Gloucester
Posted October 12, 2008 at 4:23 pm
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Nobonesaboutit:

You raise a great point. If you take Forteo a risky drug, how to you keep those bone mass gains. My doctor and I have not talked about any of this yet. I am assuming that she will suggest Forteo bec I was a nonresponder to Fossamax. Of course I will ask her what happens after two years? I am slowly realizing that all of these doctors are shooting in the dark and that osteo is an exceedingly complex disease which on one really understands.
Gloucester

By nobonesaboutit
Posted October 12, 2008 at 3:48 pm
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Afew of you above state you didn't respond to Fosamax and I wonder have any of you been told by your Dr that after getting Forteo, for some reason Fosamax and those related meds will then work? My Dr told me that because I had tried fosamax and all I got was esophageal erosions so now after having had Forteo, he wants me to do the Reclast. Also, if Fosamax didn't work, why would they think Reclast will since it's the same class of drug? Just wondering -I thought my Dr was full of bologna when he told me that little tidbit. I just truly would like to know if others have been told this or actually had the experience?

By BikingBarbara
Posted October 12, 2008 at 3:38 pm
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Hi,

I've seen several osteoporosis specialists including Deborah Littman, Wisconsin Avenue, and David Borenstein on K Street downtown. I have mixed feelings re all of them. I've also seen someone in NYC. I get frustrated as each has told me something different. If you want more info I'll be happy to share off the board. Thanks.

By Bonehealth
Posted October 12, 2008 at 10:09 am
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I am new to the community and still feeling it out. I will be sharing more in the near future. what I need right now is a referral for a physician who specializes in treating patients owith osteoporosis. Please let us know about this physician in the DC area. I need to see one ASAP before following my current physician's recommendation to begin treatment with Reclast on Oct. 30th, since Fosamax since to have failed. I appreciate your help

By Gloucester
Posted October 11, 2008 at 11:11 pm
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I need to find a good doctor in Los Angeles or surrounding area. I was a nonresponder to Fossamax for 10 years and my current doctor did nothing. I am on a holiday from Fossamax (I don't know why this isn't a permanent vacation), but I would like to take something for a few years and I am wondering whether it should be HRT or Forteo? I am 60 and so maybe I am not a candidate. HRT scares me because of the breast cancer tie in but I don't want to take Prempro (the drug that failed in the Women's Health Initiative Study) but maybe a bioidentical estrogen.
But bottom line I need a good doctor.
Thanks Gloucester.

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