Struggling with making an osteoporosis treatment decision

thinwhitewoman. I immediately got the joke because this is what my first internist told me. She sent me to a rheumatalogist for for a second opinion and he said the same thing!

Sounds like your internist is willing to work with you. May I ask who that is? Long story short, my two prior internists have left the practice (both great and willing to work with me). Hence, I have a new internist (PCP) whose not willing to work with me. In fact, he's moving on mid-summer and he's already fired me with a reference to an endocrinologist.

Also sounds like Dr Bergwitz was used as a second opinion and you use your internist to administer Tymlos? Did Dr Bergwitz offer you Forteo, Evenity or Prolia as options?

2 years ago, I pushed for testing to see why I was leaching calcium. I discovered that one of my parathyroid glands was enlarged. It was removed and I had improvement in my first dexa scan. I am having my second dexa scan this week. Because I lost enough bone to cause osteoporosis, I started Fosomax, but hope to be finished soon. Sometimes, the parathyroid gland is the cause of the calcium loss.

I went once a week for 2 months and used their high intensity machinery (takes a minute each), and red light therapy for my painful frozen shoulder and some other gadget they put on shoulder for 20 mins. No more pain and much better movement in my arm. I’m super surprised it worked in a short tine but I am glad to no longer pay the high fee but recommend highly. They also have you balance on one foot at beginning of session.

Thank your your post and insightful information. Yes, I did see an endocrinologist. She wants to know if I had hyperthyroidism. Just saw my latest blood exam. No hyperthyroidism is present from blood levels of thyroid. YEA!
My blood test taken by my transplant doctors have never mention that I had this condition. I will be seeing a dr from Columbia Prsbyterian NYC who treats kidney transplant patients who have Osteo. How. many patients he treated is the sixty four thousand question and what were their results and experiences I hope to find out.
I understand everyones outcome with medication is different. Anti rejection medication affects bones and makes them weaker and anyone of these medication has to be very very careful when combing medication to treat other conditions.

As an additional consideration, I just need to know what the Columbia doctor patients' experiences have been after being treated with certain meds. I have a phobia with shots from childhood. Passed out and gashed my face and had concussion as a child with an injection. It's embarrassing to freak out with shots as an adult.
I believe I have to take a leap of faith with the new to doctor..
I maintain my vertebrate pain with CBD balm (pea size amount). I apply a very low dose and this works to relieve pain. My transplant docs approved my particular use CBD balm as it does not enter into bloodstream affecting any medication being taken. CBD and a Tylenol get me through my day in order to function. I also use weights on ankles, hips and wrist for at least a hour in morn and hour is afternoon or evening. Can't wait till it turns warm to walk outside.
Additionally I am considering having an infusion of my own stems cells administered to me. Adipose Mesenchymal / Stem Stems cells are increasingly being used for many purposes, problem is that it is a very expensive treatment. This is part of research study. My own stem cells have been cyro stored by a company out of Houston, Texas who has submitted their findings to FDA for approval this year primarily used for Rheumatoid arthritis, and other conditions. There are many companies all over the country. People have to be very careful when choosing these treatments.
THE use of stems are very promising. IN my own opinion only I believe stem cells will be the medicine for this century. FDA regulation is vital. Several notable hospitals in US and aboard are doing research in this area. Check Mayo Clinic, George Washington University, and I believe a hospital in Cal. FDA takes a very long time to approve any medication. Presently stems cell used in research not approved as an actual medication for many medical conditions. Other countries quite different on use of stems cells. Hope there is an answer somewhere. Sorry I get carried away. Any suggestion would be appreciated Thank

Anyone have experience with Forteo? Just started a few days ago...feel wiped out...wondering if this is just my body adapting to meds....

I could not handle Forteo. I am doing Tymlos instead because the dose is adjustable. I started low and moved up. Fatigue is a side effect of these drugs, which work in a similar fashion, but it does get better.

Thank you windyshores! Fractured my humerus last summer...dont want to go thru something like that again...the doc said it was a fragility fracture even though I slammed hard on the concrete--tripped on buckled sidewalk. Osteoporosis showed in spine--dexa was -2.7 ...thankfully the others are osteopenia! Insurance did not approve Evenity...but did approve Forteo...was told about Eli-lily co-pay assistance card...amazing!!! My copay with insurance was going to be $2200 a month (yeah right)..with the copay assistance card...$4!!!! Such a blessing!!! How long did you try the Forteo?

How long have you been on Tymlos? How are you doing? My doctor has just prescribed Tymlos and I am trying to get feedback on it from actual patients.

@goodbones I guess you will never know if that was a fragility fracture. The score of -2.7 isn't too bad but people do fracture more easily. I also had a fall with a T12 fracture in 2006 that was ambiguous in terms of bone health. My later fractures, unfortunately, were clearly osteoporotic! I tried Forteo once in the MD office and once at home (low dose) and seemed to have some sort of immediate sensitivity that I don't think others would have. I went to an immunologist to try to get on it with no luck. You will probably be fine.

@mmodestti I am almost done my 18 months on Tymlos and am much stronger. I have a DEXA next month. I could not tolerate a full or even half dose when I started. I stopped, talked to a bunch of doctors, and restarted with two out of 8 clicks and moved up. I now tolerate 7 clicks really well and am doing 8 for the last months with fatigue as the main side effect. Lower than that and I was fine, after awhile.

Hello- I was just dx with primary hyperthyroidism and will be meeting with a surgeon in a few weeks. Last Oct had my first DEXA that showed I have osteoporosis. Started fosomax in Jan. Will this surgery “cure” osteoporosis? I recently turned 60 and in otherwise decent health.