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What would you do? Medication.
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.
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The thing is, the side effects for Forteo and Tymlos are short-lived (a couple of hours for me) and if not tolerable you can stop. Other meds last a lot longer (Evenity lasts more than a month).
Not all adverse reactions are short-lived. Please listen to your body and not try to power though any alarming reaction. I don't know how long Naomi continued taking Forteo after her adverse reactions started. When she posted, she had diarrhea every day until early afternoon, lost appetite and was losing weight. I doubt if she could afford that as she has IBD. Then she was unable to take her nitro due to her BP having dropped. To top it off, her migraines were worse.
There are tolerable side effects and there are intolerable adverse reactions.
https://connect.mayoclinic.org/discussion/i-started-forteo-3-mths-ago-and-have-bad-side-affects/
That's probably what compels most of us to dip into medication with the primary dread being the side effects. I don't want to do it for a number of reasons, but fracturing would be worse. This would be easier for me if there were symptoms.
I dont know your history, but if you are not progesterone positive, look at Dr. John Lees book.p on menopause. Ive mentioned it before.
He found, in his practice that Natural progesterone cream can reverse OP.
He is deceased. But his books are a worthy read.
Heres a link to start you on your way.
https://www.johnleemd.com/
Blessings to you.
Unfortunately, I'm beyond the recommended age for hormone treatment. Thanks for mentioning it though - others will be interested and able to use it.
Got it. I dont consider it hormone therapy. Its reversed many womens op. I dont recall Dr Lee excluding any age for this treatment. But I will have to recheck because its been years.
well, and I'm assuming. Perhaps I'm painting with too broad a brush. I'll see if I can find it too. Thanks.
I took 5 years of Reclast without any issues, 2 years of Prolia without side effects. However, I had 2 spontaneous fractures while on Prolia so technically I failed it. Started Tymlos in June with minimal side effects now that my body is used to it. The big question for me is what medication do I transition to after Tymlos? Seeing a new endocrinologist today who, hopefully, will manage my op.
Is anyone here doing telehealth with an op specialist at Mayo Clinic? If so, how is it working out? Was it challenging to obtain an appointment?
There are a lot of us in this form that have been on both osteoporosis meds . We have had side effects but nothing devastating. My T score is -4.6 in my spine and my endocrinologist put me on Evenity .
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1 Reaction"what medication do I transition to..." is the million dollar question. I heard an endocrinologist from Harvard talk about this very thing and he said we need to have a life plan that could last us 30 years. I don't think many doctors have a 5 year plan, much less beyond. That's the scariest part for me about starting medication (a tie with side effects). What journey am I launching myself into? I don't think anyone knows - it's a bit of a crap shoot into the dark.
I didn't know the Mayo Clinic offered telehealth appointments. I hope someone here has tried that and weighs in. Thank you for mentioning.
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