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Where do you go in NY City when you have osteoporosis?

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GloriaD
Regular Member
Joined : Jun 2020
Posts : 72
Posted 9/21/2022 6:33 PM (GMT -8)
Which center would you recommend?
Toni Stabile Osteoporosis Center at Columbia, Mount Sinai, nyulangone?
Can anybody recommend a doctor?
Somebody recommended Toni Stabile Osteoporosis Center at Columbia as his wife and daughter go there but didn’t give me a name. Does it matter who to see?
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ks1905
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Joined : Sep 2005
Posts : 6331
Posted 9/21/2022 7:36 PM (GMT -8)
The Hospital for Special Surgery is the best orthopedic hospital in NYC and one of the best in the country. It’s an impressive hospital, I went there for my hip replacement.

Most of the professional sport’s athletes in NY go there.
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straydog
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Posted 9/21/2022 7:52 PM (GMT -8)
Gloria, I have no idea who to see. Why not go online & check these facilities out through Healthgrades & RateMD's. I am assuming you are looking for an endocrinologist?

I think ks got his drs mixed up, you are talking about a different type of a dr.
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GloriaD
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Posts : 72
Posted 9/21/2022 8:21 PM (GMT -8)
Yes, endocrinologist. Online search is not always helpful as people prefer to post only negative stuff. I got good recommendations for GI on this forum. Thought would ask about endocrinologist recommendation also.
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ks1905
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Posted 9/21/2022 9:00 PM (GMT -8)
I’d probably look here first before I went to another place in NYC https://www.hss.edu/osteoporosis-metabolic-bone-health-center.asp

I’d assume that my GI would send me here, even though he’s not part of their hospital system. He sent me to HSS when I needed my hip replaced and I could have had it done in his hospital’s network.
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Old Hat
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Posted 9/21/2022 10:08 PM (GMT -8)
Look up Weill Cornell Medicine-- then Endocrinology Dept. They treat patients referred from their own IBD Center, so would definitely have experience treating osteoporosis. Their online physician clinical profiles in the dept. will show which ones accept new patients and treat osteoporosis. Seems that Dr. Naina Sinha Gregory subspecializes in osteoporosis & got MD at Columbia Med School. Dr. So-Young Kim treats it; has MD from NY Medical College. Phone no. there is (646) 962-8690 to inquire about availability. Also, WCM is affiliated with Columbia Med Center/ NY Presbyterian and they share many faculty doctors. Good luck with your search; in my experience it helps to find out where they attended med school if you don't have another patient's recommendation, also Health Grades online reports trend positive rather than just complaints about NYC area doctors. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Post Edited (Old Hat) : 9/22/2022 4:30:37 AM (GMT-7)

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Andreita
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Posted 9/22/2022 5:25 PM (GMT -8)
I have only experience with NYU langone and they were awesome. I had my 2nd 3 step jpouch surgery/redo there and they were fantastic. No clue about osteoporosis though
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GloriaD
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Joined : Jun 2020
Posts : 72
Posted 9/23/2022 2:43 AM (GMT -8)
Called different places. A lot of doctors don't take new patients. The ones that do take the wait is over 6 months.
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ks1905
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Posted 9/23/2022 7:12 AM (GMT -8)
Ask your GI if he or she has any recommendations, maybe they can get you an appointment sooner.
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poopydoop
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Posts : 1756
Posted 9/23/2022 6:15 PM (GMT -8)
My gastroenterologist organised my osteoporosis treatment (I'm on prolia). He consulted with a bone metabolism expert from geriatrics first, but I think he's had so many IBD patients with osteoporosis that he more or less knows the options. I'm in Europe so it probably works differently than in the US.
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Old Hat
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Posted 9/23/2022 7:48 PM (GMT -8)
A 6 months wait for new appointment (office visit) with the most qualified Manhattan NY doctors is very common now. It was a bad situation pre-pandemic, then COVID-19 made things even worse. I have a 76 yr-old friend who needed to get a pacemaker three years ago; that still doesn't speed new appointments up for him-- very annoying! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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GloriaD
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Joined : Jun 2020
Posts : 72
Posted 9/24/2022 9:51 PM (GMT -8)
I have a friend who had a thyroid cancer and had to wait months for an appointment.
I made an appointment for April in the City.
poopydoop, GI in US can not prescribe the treatment. I called the place where I get my Entyvio infusion and they said only endocrinologist or gynecologist or pcp can provide a script.
I am trying to figure out how I can start the treatment, if any of my local doctors (other than endocrinologist) will agree. I can not wait till April as it progresses kind of quick.
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Old Hat
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Posted 9/24/2022 10:24 PM (GMT -8)
Gloria, I wish you good luck getting help from 1 of your local doctors. But if your April appointment in NYC will be with a highly-rated endocrinologist, keep it on your calendar anyway-- especially if that doctor accepts your insurance. The who-can-prescribe-what is extremely frustrating, and I do think that insurance issues in U.S. contribute to making us chase around for specific meds or procedures. (During the 1st pandemic year 2020, my gyn was able to refer me for anti-pneumonia vaccine injection, but the following year she could only refer pregnant women for it and non-pregnant had to ask PCP or internist for that referral!) In the meantime, be sure you get the recommended calcium + vitamin D3 to help your bones as much as possible. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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straydog
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Posts : 19266
Posted 9/25/2022 10:34 AM (GMT -8)
Gloria, your pcp can make a referral for you to get the Reclast provided your insurance will approve the drug. My pcp ordered the Forteo for me, this was many years ago. There is no reason to wait 6 months for something like this when your pcp can take care of it.

Who was the dr that ordered your scan?
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GloriaD
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Joined : Jun 2020
Posts : 72
Posted 9/25/2022 1:52 PM (GMT -8)
Old Hat / straydog, my 1st scan was done 2 years ago per my request when I had my yearly checkup with gynecologist. At that time the numbers were not great (osteoporosis in the spine -2.9, osteopenia in the hips) but the doctor said since we didn't know my baseline (I am thin) it might be ok for me as long as they don't change and we can repeat the scan in 2 years. But I still saw local endocrinologist for who I also had to wait months. She said the same .... I can start the treatment or wait until my next scan and provided recommendations on what to do. So I declined the medication and per her recommendation I took vit D and Calcium, I hiked, walked and exercised. I had the 2nd scan as part of my checkup with gynecologist this year and my numbers are significantly worse. The spine is at -3.2 The local endocrinologist retired.
All this decline probably happened due to all PPI medication I was constantly on for the past 2 years and constant absorption issues I am experiencing. Two GIs can not figure out my absorption issue.
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straydog
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Posted 9/25/2022 3:47 PM (GMT -8)
What did your gyn offer after getting results of the recent scan?
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GloriaD
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Joined : Jun 2020
Posts : 72
Posted 9/25/2022 4:55 PM (GMT -8)
Gyn sent a message via portal to consult the endocrinologist, I guess she is unaware that endocrinologist retired. I have app w gyn this week.
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poopydoop
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Posted 9/25/2022 5:42 PM (GMT -8)
Gloria my T and Z numbers were -4.7 and -4.6 respectively in my lumbar spine at diagnosis - in my 30s. After 4 years of treatment they are -4.2 and -4.0 which was a little disappointing but at least it improved. I take prolia and have no side effects but the problem is it's not clear if or how you can or should stop taking it.
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GloriaD
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Joined : Jun 2020
Posts : 72
Posted 9/25/2022 6:32 PM (GMT -8)
How much calcium do you all take? In the beginning I was making egg shell powder to avoid taking pills. Then I switched to citrical slow release 1200 +D3. When I take a lot of tums I avoid taking the calcium pill. I am concern to get calcification. I already have it on my lung. Somebody told me that she got one on her heart ( not sure which part). Also too much calcium might lead to kidney stones. For the last 2 years I ate a lot of spinach and other greens.
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Sara14
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Joined : Mar 2007
Posts : 7543
Posted 9/26/2022 10:41 AM (GMT -8)
My GI prescribed me osteoporosis medication. Does yours want you to see a specialist? There is no reason your GI could not prescribe you a medication while you wait to see a specialist. I'm sure your PCP could prescribe something as well. That's a really long wait--sorry.

I aim for about 1,000-1,2000 mg calcium-combined food and supplements. Yes, you are right--you don't want too much! I'm vegan so I need more through supplements. Can you add exercise too (if it's safe for you)?

Your numbers don't look too terrible.

poopydoop: That's really disappointing it didnt' improve more.
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Sara14
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Joined : Mar 2007
Posts : 7543
Posted 9/26/2022 10:43 AM (GMT -8)

GloriaD said...

poopydoop, GI in US can not prescribe the treatment. I called the place where I get my Entyvio infusion and they said only endocrinologist or gynecologist or pcp can provide a script.

This isn't accurate. My GI prescribed osteoporosis medication (out of University of Chicago IBD Center). I also had a sports medicine doctor prescribe it to me. Fosamax both times.
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Michelejc
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Joined : Jan 2011
Posts : 2836
Posted 9/26/2022 10:55 AM (GMT -8)
I think all doctors are different. Some will prescribe and others won't
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Old Hat
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Joined : Feb 2007
Posts : 5815
Posted 9/26/2022 10:15 PM (GMT -8)
Some of the treatments come with side effects that make doctors hesitate now. When Boniva & Fosamax 1st came to market they were viewed practically like Heaven-sent. Gloria, hopefully your gyn can help sort out the issues when you go to office visit this week. I know it's stressful pursuing the best available advice, but try to stay calm and positive. Sometimes test results can cause us too much anxiety! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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Michelejc
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Joined : Jan 2011
Posts : 2836
Posted 9/27/2022 6:21 AM (GMT -8)
Old Hat: I started out with Boniva. It worked for a few years but then it stopped working. That's when I went with Prolia. So far, the Prolia is working great for me. I had no side effects from either.
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Old Hat
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Joined : Feb 2007
Posts : 5815
Posted 9/27/2022 3:54 PM (GMT -8)
That's good news, Michelejc, that you and Poopydoop both tolerate Prolia well. It seems from what Straydog posted above that 1 of Gloria's doctors recommended Reclast ... maybe it was her past endocrinologist who has apparently retired since then. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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