What would you do? Medication.

Posted by babs10 @babs10, Feb 12 7:18pm

Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.

I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.

My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”

Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?

I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.

I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.

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

mayblin | @mayblin | Feb 19 9:55pm

In reply to @babs10 "Do you know what the difference is between the scoring systems?" + (show)

I'm afraid I don't. At one point I used a third system (don't remember the name) which asked me to put in my tbs score if I have it, the result was similar to the other two. So in my case, there aren't major discrepancies. I wonder what would cause the big differences in @normahorn case.

njhornung | @normahorn | Feb 20 7:37am

In reply to @mayblin "That's intersting. Check what frax method your dexa report states. I used a different system, university..." + (show)

Mystery solved. When asked about previous fractures, I mentioned that I had broken a bone in my finger playing touch football in my 20's and had broken an ankle when I slipped on ice and fell. (That produced a clean break.) That was maybe 30 years ago. Changing "No" to "Yes" produced the results in the DEXA report.

debsinwa | @debsinwa | Feb 20 8:37am

I am 63 with T-score of -3.3 in lumbar spine. I was active and lifted weights. I too had a bad fall and did not fracture but then severe coughing caused 3 compression fractures (T11, F1 & F2 ) over a 3 year period. It was that forward curving of the spine with the pressure from coughing that did it. Twisting is also bad. I too read about all of the side effects of the drugs and was scared but after the 3rd painful fracture I finally "gave in" and began Forteo in October. I have tolerated it pretty well. It is a very hard decision and it helps to hear others experiences but ultimately it is your journey. I hope that you can find a doctor that is willing to listen to you and address your concerns. I recently found this site and the ladies here have been full of help and support.

Michael Lavacot | @michaellavacot | Feb 20 11:39am

In reply to @colleenyoung "Hi @michaellavacot, posting personal contact information on the public forum is not advised. While you, @babs10..." + (show)

Hi Colleen, Thanks for the note and the link to the guidelines, which I just read through. Makes a lot of sense. I'm still learning here. Mike

Sue Ellen Murrey | @semurrey | Feb 20 12:09pm

In reply to @debsinwa "I am 63 with T-score of -3.3 in lumbar spine. I was active and lifted weights...." + (show)

Good luck with Forteo! I'm 58 and only one year into Letrozole (will be on for 10yrs) was pushed into osteoporosis and doc is recommending Fosamax or Reclast infusion. I'm petrified of side effects and already have jaw pain due to a dislocated TMJ disc. I may need root canal/crown due to old fillings. Just wondering how long I can hold off. How are you feeling on Forteo and may I ask why you started with Forteo? Thanks..xo

sallyj2 | @sallyj2 | Feb 20 12:52pm

In reply to @yogagirl57 "One would think!" + (show)

Yes, just a software add on to DEXA.

babs10 | @babs10 | Feb 20 1:47pm

In reply to @sallyj2 "Yes, just a software add on to DEXA." + (show)

Are you referring to the TBS score when you say it's a software add on?

I wonder why not every DXA place offers it. Anyone know?

sallyj2 | @sallyj2 | Feb 20 3:34pm

In reply to @babs10 "Are you referring to the TBS score when you say it's a software add on? I..." + (show)

Yes, that's what I was referring to. One of my my doctors, the endo, said it's only slightly helpful. If someone has a normal DEXA, but fractures, it doesn't matter, they still have a problem. He said if someone had a marginal DEXA, that the TBS might show that their problem was actually worse and give them the opportunity to start meds earlier. That's a big deal to me. But, he tries to treat early anyway. Also, I would like a baseline, especially for hips and wrists before starting bone meds which are frequently more beneficial to spine.

mayblin | @mayblin | Feb 20 7:50pm

In reply to @normahorn "Mystery solved. When asked about previous fractures, I mentioned that I had broken a bone in..." + (show)

That's good to hear! No wonder, I was puzzled by the huge discrepancy.

mayblin | @mayblin | Feb 20 8:10pm

In reply to @debsinwa "I am 63 with T-score of -3.3 in lumbar spine. I was active and lifted weights...." + (show)

@debsinwa I'm sorry to hear what happened to you. It is good that you are on forteo now, it's a great med. My L spine t score is close to yours and I'm on forteo now also.

The consequences of cough remind me to share my current situation with everyone. When I was diagnosed almost 2 years ago, I was very surprised hear cough could cause compression fracture until reality hits me now. I'm having one cold after another lately, since Xmas. The most current one makes lots of phlegm and makes me cough constantly for several days now. I realize how powerful the cough can be if I need to clear phlegm deep in the airway. With osteoporosis in mind, whenever cough starts, I made sure I have a straight back even bend backwards and lift head/chin up then cough. There might be a few times when there isn't enough time to ensure right posture. So finger crossed...