Osteoporosis Treatment Availability

Posted by njhornung @normahorn, Jul 6, 2023

Sorry but I need to vent.
In our area there are two major health networks and one smaller one. The network I primarily use has merged all osteoporosis treatments into an osteoporosis clinic with four locations. The person at the location near me and I are mutually incompatible. The smaller network has closed their clinic. That leaves the rival major network that I am trying to get info on. I don't like having so few options. Think Monopoly and power trip. No flexibility in treatments, no listening to patient's concerns or being open about the program unless pushed to do so. Imagine not being able to get treatment from your endocrinologist or rheumatologist. The NP is in charge. Maybe not getting treatment will be my best option.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Can feel your pain because I have no options. One endocrinologist and rheumatologist within 100 miles of me.

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@cpd54

Can feel your pain because I have no options. One endocrinologist and rheumatologist within 100 miles of me.

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You might try major hospitals that have tele and video appointments. I had video appointments at Northwestern Medicine in Downtown Chicago. Mayo Clinic also has such appointments. They can partner with your local team. Best wishes for good health.

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@me49

You might try major hospitals that have tele and video appointments. I had video appointments at Northwestern Medicine in Downtown Chicago. Mayo Clinic also has such appointments. They can partner with your local team. Best wishes for good health.

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@me49 , I have been thinking of contacting Northwestern for a 2nd opinion, since I live in Chicago suburbs, and have a couple of questions. Was your initial visit in person? Did doctor request medical records? Did the doctor order any tests? Are you satisfied with the recommendations? Which doctor did you choose?

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@me49

You might try major hospitals that have tele and video appointments. I had video appointments at Northwestern Medicine in Downtown Chicago. Mayo Clinic also has such appointments. They can partner with your local team. Best wishes for good health.

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I just wanted to share with you I tried to have an appointment with the Mayo clinic in Jacksonville ( which is 6 hours away) and since they are not on my Insurance I would have to pay $5000 for the first visit. I was in shock really. In my area the soonest I can get an appointment with a decent specialist is 6 months from now. I am having some side effects from the Evenity I am taking and my Rheumatologist doesn't seem to care. I have only been going to him for 6 months and I need to get a second opinion on taking this medication.

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I called an endocrinology center asking if they do osteoporosis treatment. That should generate a simple yes/no response. Instead I was told that I would need a referral. If they don't even do it, why would I go to the effort to get a referral! The receptionist kept insisting a referral was needed but would not tell me if they treat osteoporosis.

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I called another endocrinology center and was told that they do osteoporosis treatment including Evenity. I have an appointment for Nov to pursue further. I am so thankful my insurance does not limit me to any one network.

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@pedsnurse61

I just wanted to share with you I tried to have an appointment with the Mayo clinic in Jacksonville ( which is 6 hours away) and since they are not on my Insurance I would have to pay $5000 for the first visit. I was in shock really. In my area the soonest I can get an appointment with a decent specialist is 6 months from now. I am having some side effects from the Evenity I am taking and my Rheumatologist doesn't seem to care. I have only been going to him for 6 months and I need to get a second opinion on taking this medication.

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Im sorry to hear that. I was on Evenity for 6 months and decided to stop because of side effects. I posted the side effects in earlier emails. I eventually conted Amgen to report the side effects to a nurse who handles such calls. Perhaps someone reading these posts have other recommendations. Best wishes.

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@me49

Im sorry to hear that. I was on Evenity for 6 months and decided to stop because of side effects. I posted the side effects in earlier emails. I eventually conted Amgen to report the side effects to a nurse who handles such calls. Perhaps someone reading these posts have other recommendations. Best wishes.

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Can I ask you what kind of side effects you had. I am probably going to stop my injections ( I have had 5). My side effects have been getting worse with each injection. Are you going to start a different medication? My options are limited since I have tried many of them with no improvement. Best wishes to you also.

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@ymv

@me49 , I have been thinking of contacting Northwestern for a 2nd opinion, since I live in Chicago suburbs, and have a couple of questions. Was your initial visit in person? Did doctor request medical records? Did the doctor order any tests? Are you satisfied with the recommendations? Which doctor did you choose?

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My first visit was a video call. Theyre very organized. I had to send paper records and cd disks, but now they can see records though their share anywhere app. You can check out doctors on their website and call their number. Staff is organized. You may want to see if the doctor also has an office in the suburbs. Some teach at the medical school and have an office closer to home. They can partner with your nearby medical staff as well. They ordered tests which I had done at an affiliated northwestern hospital. Second opinions are helpful when you're faced with these types of decisions. I felt they have access to current treatments and listen to concerns. Hope this helps.

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@pedsnurse61

Can I ask you what kind of side effects you had. I am probably going to stop my injections ( I have had 5). My side effects have been getting worse with each injection. Are you going to start a different medication? My options are limited since I have tried many of them with no improvement. Best wishes to you also.

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My side effects were: itching on arms, scalp and legs. Not due to rash, elevation in blood pressure. Baseline was around 122/78. After 3rd or 4th injection, it jumped to 151/101. I went to the ER. Basically, no heart problems. Some headaches fatigue and muscle spasms. Fatigue lasted about 2 weeks. I was starting to get pain in my fingertips. All these side effects diminished after stopping Evenity. I was switched to Alendronate. After the second weekly dose, I developed daily migraines. PCP sent me to a neurologist to see if I had a brain tumor. No tumor, plus NO headaches 2 weeks after stopping Alendronate . Right now ,I am not taking any prescription meds and have a follow up appt with the rheumatologist in the fall. I am taking OTC K2, Calcium, D3, and other minerals for bone health. I also decided to take strontium citrate at night, even though it skews the Dexa results. I just want to plug these holes. I have demonstrated sensitivity to medications, I guess I am just adding more to the list.

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