Anyone been on a clinical trial for osteoporosis?

Posted by billie3 @billie3, Apr 20, 2020

Has anyone been on a clinical trial for osteoporosis? If so, where did you find out about the clinical trial & what's your experience so far?

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

Hello @billie3. Great question about Osteoporosis and clinical trials. I would like to bring in few others, @contentandwell @rwinney @jmanj @artscaping @predictable, that have been active in discussions related to Osteoporosis in hopes they can give us some ideas.

I did find this information on the National Osteoporosis Foundation: https://www.nof.org/patients/clinical-trials/about-clinical-trials/

It looks like there are many reasons to be a part of a clinical trial for Osteoporosis (innovative treatments, medicine, etc.). If you are willing to share, is there a specific reason you are interested in clinical trials?

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@kellyhahn1

Hello @billie3. Great question about Osteoporosis and clinical trials. I would like to bring in few others, @contentandwell @rwinney @jmanj @artscaping @predictable, that have been active in discussions related to Osteoporosis in hopes they can give us some ideas.

I did find this information on the National Osteoporosis Foundation: https://www.nof.org/patients/clinical-trials/about-clinical-trials/

It looks like there are many reasons to be a part of a clinical trial for Osteoporosis (innovative treatments, medicine, etc.). If you are willing to share, is there a specific reason you are interested in clinical trials?

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@kellyhahn1 @billie3 My osteoporosis crept up on me because my PCP had neglected to order DEXA scans for over 5 years despite my having osteopenia in the last one, in January 2014, and also being on prednisone which is known to affect bones. When I had a minor hip fracture in July, I asked my PCP about having a DEXA and he prescribed one. I discovered I had somewhat advanced osteoporosis.
Having osteoporosis to that degree would cause me to not risk being on a clinical trial. Although I have not begun treatment due to other medical conditions, I do not want to delay treatment known to help. I have taken part in a couple of other clinical trials but they were basically diagnostic ones so did not delay necessary treatment.
It's definitely a very tough decision since the clinical trial could be for a great new treatment, but the opposite is true also. I think a big part of the decision would be how advanced your osteoporosis is.
JK

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Hello @billie3,

What a great question to bring up. So many of us have this problem and would be interested in a clinical trial. If you don't mind sharing a little about yourself, could you tell of your history with osteoporosis? For example, how long ago it was diagnosed, what symptoms do you have (bone pain, etc.), have you had any broken bones, etc.?

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@kellyhahn1

Hello @billie3. Great question about Osteoporosis and clinical trials. I would like to bring in few others, @contentandwell @rwinney @jmanj @artscaping @predictable, that have been active in discussions related to Osteoporosis in hopes they can give us some ideas.

I did find this information on the National Osteoporosis Foundation: https://www.nof.org/patients/clinical-trials/about-clinical-trials/

It looks like there are many reasons to be a part of a clinical trial for Osteoporosis (innovative treatments, medicine, etc.). If you are willing to share, is there a specific reason you are interested in clinical trials?

Jump to this post

My most recent Bone Density DEXA was last Nov (Nov '19) which revealed osteoporosis in my lumbar spine (T-score -2.6). I have pain if I lift something over 10# or exert myself with different exercise ex. biking up a long hill. My primary care doc has "pushed" Prolia. I've resisted to accept this recommendation. I have 2 older sisters who were on Prolia for a number of yrs and now no longer get those injections due to their newly diagnosis of kidney disease.
I've done some research on TCM (traditional Chinese medicine) and osteoporosis and the use of Qiang GuYin'. I'm trying to find out if there's a clinical trial for patients willing to try TCM or other alternative medicine/innovative treatments. I can look at the link you sent from the Nat'l Osteo Foundation. Thx, Kelly

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@hopeful33250

Hello @billie3,

What a great question to bring up. So many of us have this problem and would be interested in a clinical trial. If you don't mind sharing a little about yourself, could you tell of your history with osteoporosis? For example, how long ago it was diagnosed, what symptoms do you have (bone pain, etc.), have you had any broken bones, etc.?

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Hi Teresa! Could you take a look at my reply to Kelly Hahn? Thx, billie3

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@billie3

My most recent Bone Density DEXA was last Nov (Nov '19) which revealed osteoporosis in my lumbar spine (T-score -2.6). I have pain if I lift something over 10# or exert myself with different exercise ex. biking up a long hill. My primary care doc has "pushed" Prolia. I've resisted to accept this recommendation. I have 2 older sisters who were on Prolia for a number of yrs and now no longer get those injections due to their newly diagnosis of kidney disease.
I've done some research on TCM (traditional Chinese medicine) and osteoporosis and the use of Qiang GuYin'. I'm trying to find out if there's a clinical trial for patients willing to try TCM or other alternative medicine/innovative treatments. I can look at the link you sent from the Nat'l Osteo Foundation. Thx, Kelly

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Hello. I will respond to the part of your story that I can relate to. My primary doc also pushed prolia . I went to Mayo Clinic for a second opinion. I now take once yearly infusion of Reclast. I’m taking the final of the three infusions in May and I hope that will be my last one for many years. I have no side effects from the infusion. I hope this helps.

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@mpeters, @billie3, Good afternoon. I have been following this broad category of aging bones. Thank you again to all who have posted their journeys, outlined their choices, and welcomed whys and wherefores from other members.

One of the reasons we don't have enough great medicine choices, (meaning that it does what it is supposed to do without tormenting us with side effects) is because of the state of our bones when we begin treatment, our age and our bones relative age. You know that line: "may be only 55 and yet you have the bones of a 75 year old.

Would you, @mpeters share with us the reasoning behind the second opinion recommendation of Reclast. That would be helpful for many. Knowledge is power and we can empower others on Connect to improve their quality of life and their control over it.

This topic is directed at clinical trials so may I share my concern. At age 78, entry into a double-blind clinical trial may leave you without medication……as in the placebo group and for quite some time (years?). I need to make sure I do everything now to avoid fall injuries.

What else are you doing to protect yourself? Do you know about the Tymlos and Forteo options? The purpose and process of those two are quite different than all of the others. How often do you get a Dexascan? What area are you most concerned about? Spine, peripheral bones?

Do take care of them and rest with comfort and ease.
Chris

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I'm 85 years old and in a very happy marriage. About 20 years ago I was diagnosed with osteo, but after 2-3 years, it seemed to have faded. On December 12, 2019, I took the kind of fall that lifted me up and slammed me down on my left side. I was already receiving PT for patella femoral syndrome since some time in October. It is now April 24, and I have what seems to be plantar fasciitis in my left heel, a bakers cyst behind my left knee and still have the patella femoral syndrome. My left thumb keeps going out of joint. Had to quit PT because of the shut down, so I'm using lots of ice and a heating pad, along with knee and thumb braces. I also am on Tramadol, 2 a day. I can only call it chronic pain syndrome. When I can, I'm going to see a highly recommended chiropractor. I'm concerned about my lack of exercise, but I've been told to ice, heat, and rest. Thank you for any suggestions?

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@cldmeyers

I'm 85 years old and in a very happy marriage. About 20 years ago I was diagnosed with osteo, but after 2-3 years, it seemed to have faded. On December 12, 2019, I took the kind of fall that lifted me up and slammed me down on my left side. I was already receiving PT for patella femoral syndrome since some time in October. It is now April 24, and I have what seems to be plantar fasciitis in my left heel, a bakers cyst behind my left knee and still have the patella femoral syndrome. My left thumb keeps going out of joint. Had to quit PT because of the shut down, so I'm using lots of ice and a heating pad, along with knee and thumb braces. I also am on Tramadol, 2 a day. I can only call it chronic pain syndrome. When I can, I'm going to see a highly recommended chiropractor. I'm concerned about my lack of exercise, but I've been told to ice, heat, and rest. Thank you for any suggestions?

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Hello @cldmeyers

What a lovely picture!

I am sorry to hear of all of your problems with pain. I can certainly appreciate your wanting to find exercises that will help during this time when PT facilities are closed. I found a Mayo website that explains this problem and provides treatment options. I hope as you read it you will get some good information that will be useful during this time, https://www.mayoclinic.org/diseases-conditions/patellofemoral-pain-syndrome/symptoms-causes/syc-20350792

Do you know what caused the patella femoral syndrome?

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@cldmeyers

I'm 85 years old and in a very happy marriage. About 20 years ago I was diagnosed with osteo, but after 2-3 years, it seemed to have faded. On December 12, 2019, I took the kind of fall that lifted me up and slammed me down on my left side. I was already receiving PT for patella femoral syndrome since some time in October. It is now April 24, and I have what seems to be plantar fasciitis in my left heel, a bakers cyst behind my left knee and still have the patella femoral syndrome. My left thumb keeps going out of joint. Had to quit PT because of the shut down, so I'm using lots of ice and a heating pad, along with knee and thumb braces. I also am on Tramadol, 2 a day. I can only call it chronic pain syndrome. When I can, I'm going to see a highly recommended chiropractor. I'm concerned about my lack of exercise, but I've been told to ice, heat, and rest. Thank you for any suggestions?

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@cldmeyers, please upload that lovely photo to your profile!
– How to Update your Profile: https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

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