Clinical trials for osteoporosis

Posted by billie3 @billie3, Apr 20 8:31pm

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?

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?

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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?

20190828_132033

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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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@hopeful33250

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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Hello, Teresa. I know it isn't repeated athletic moves. I'm suspecting that I'm spending too much time on the computer. At my age with everything in our building shut down, I'm getting no exercises except walking the halls or outside on a good day.

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@cldmeyers A very beautiful picture.
Wow! you have a lot of pain to deal with. I tripped and fell in Sept 2018 and landed on my left side out in our enclosed carport that has a cement floor. .. used for freezers, extra fridge and junk.. Most people put their hands out automatically. .. I guess to break the fall. I wrapped my right hand and arm as tightly as I could around my left ribs. I had open thoracic/abdominal surgery in May of 2015. They had to crack one rib and cut another to get to my lung to basically pull it off my ribs where my intestines had shoved it and collapsed my lung. I was used to guarding my ribs. My left hip took the worst of it, then my shoulder and knee,, and I think I broke my left little toe again. My 90 year old mom could not help me… her dog barked trying to get my husband's attention outside, but he could not hear over whatever tool he was using at the time. I managed to pull myself up with the help of a shower stool that was beside me. To my amazement I could walk. I walked around for a few minutes making sure everything was moving and showed my mom I was okay. My husband came in later and asked why I was limping. I did not think I needed the emergency room and made an appointment with my doctor for the next day and had my brother come stay with my mom. My doctor only ordered x-rays of my hip and back. No breakages and the hardware in my back was in place. It took a several months for the strained muscles and bruises to heal. I walked as I could. I did nothing any more strenuous than the laundry for a few weeks. .. had to have help with it sometimes. I have osteopenia and have had a back fracture before… from getting something from the back of the lower cabinet. So high risk for fracture.

Be patient with your healing. It may take some time. Try to walk when you can and maybe some stretching exercises. I have a kitchen window sill that is the right height for me to place my hands to balance and stretch my ham strings. When my shoulder is up to it I do a type of pushup there. You can use a kitchen counter too. . or a chair. Just something stable though. I have rolled a play-ball up and down the wall. Just because we are inside more doesn't me we cannot exercise. Just choose something that will mainly stretch your muscles and tendons right now. Cans are great weights. .. good for the arm muscles. If it hurts don't do it!! If it is just a sore feeling you are okay.

I had thumb surgery back in January on my right (dominate) thumb.. bone on bone arthritis at base of thumb. The surgeon removed the bone and did a tightrope procedure with it. I did not get to finish my physical therapy. I am doing exercises at home for it. .. just winging it.. if it hurts too much I stop. It sounds like you have trigger thumb. The thumb I just had surgery on is doing the triggering some. Mostly when the arthritis in the joint nearest the nail bed swells. I had one injection in it and it helped for about a month. I am holding off for now on another injection. I like to spread injections like that out further than drs do. They can do damage if you have a lot of them. She said she injects 3 times and if the triggering continues she recommends surgery. The surgery takes about 10 minutes and causes no extra pain. I've had it done on this same hand on my ring finger. The pain block numbed it for a several hours and I had no pain afterward. .. and I could use it.

One time I had a swelling behind my knee and dr said it was a baker's cyst. It went away. Another time hurting there and he had an ultra sound done to check for blood clot and all was fine. It could be a blockage that a more in depth ultra sound would show. Going to a specialist.. which the name escapes me now .. might help in figuring it out.

I had just finished physical therapy for my foot when I had the fall. I had neuroma surgery on my right foot in 2012. At the end of 2016 that foot started hurting again. The podiatrist I was using would put an injection in and say come back in so many weeks. Then another injection and he would say same thing except if not better I will order an MRI after the next time I decided to go to an orthopedist that specialized in feet. He did an awful injection and I decided I would just ask around and find a podiatrist in another town. I asked my friend who is a nurse. Nurses tend to have foot problems. She had seen the podiatrist and was pleased with him. I saw him and of course I got another injection that was of no help, but he went ahead and ordered a MRI and it showed a small neuroma. He recommended physical therapy. It took me several month of hobbling to get to this point. I went to where he referred me in my hometown. The lady I saw said she really did not know anything about foot physical therapy, but she knew who did. It happened to be a physical therapist that I used many times. An old friend. He used a few torture tools and the ultra sound. The most effective was the needles with a tens machine attached… electric dry needling. This site shows how it is done. It did not hurt me at all.
https://healingplantarfasciitis.com/dry-needling-for-plantar-fasciitis-electro-stimulation-explained/

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Wow! I certainly understand your life. I always thought I would use my hands, but nothing has ever happened so fast. I was up, then flat on my side. I've had a laminectomy also. Lots of injections, but won't do that again. Never helped for a long enough time. I had the surgery at the base of my left thumb, the one I'm wearing a brace on. I had been in pt since October for my patelofemoral syndrome, and the fall undid all that. I'm grateful that I didn't damage my right knee replacement. I just want to get the strength in my legs and knees back. We're living in a senior community, and are on shut down. I have a phone appointment with my general practitioner, and I'm going to discuss a pain management specialist and a chiropractor. Will be an interesting conversation. Thanks for sharing your story.

Fort Ben 17

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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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@billie3, @kellyhahn1, Good afternoon. I am very interested in the TCM. I also found a link to Qiang GuYin. Didn't quite know what I was reading and would like to know more. Please direct me. Thanks @billie3.
https://www.mdlinx.com/journal-summaries/postmenopausal-osteoporosis/2017/05/11/7143992/

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@mpeters

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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Hi! You mentioned that you went to Mayo for a 2nd opinion and now get a once yearly infusion of Reclast. But then you said that you will get the final of 3 infusions in May. Why 3 if you get just one a year? If you don't mind me asking, how long have you been on Reclast? My older sister was on Reclast for 3 yrs. I think it was 3 yrs. She then had a density test and was told how well her bone density improved. She went off of Reclast for 2 yrs. Had another density test & was then told the density of her bones were terrible- so porous. Bottom line, she's back to "square one". I wish there was a way that Reclast or any osteo med would do the job for us while taking them for 3 or 4 yrs and then our bone structure would stay strong and our bone remodeling would continue to be balanced and maintained while the meds are discontinued, but, unfortunately I don't think that's how it works. Also, it's my opinion that there are hidden or unreported side effects of ANY med.
Please reply when you can. Thank you so much.

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