How do you ever choose which med?

Posted by rudysmom @rudysmom, May 3 6:04pm

I already have anxiety and trying to decided which med to choose is giving me even more anxiety. Ugh To summarize my previous posts I’m 61 and was diagnosed in February with OP. My spine is -2.7 and hips -2.0.

My Gyno diagnosed me and gave me the news over the phone while I was driving in my car. He gave me choice of Prolia or Evista. Gave me a very brief description and asked which one I wanted to do. I said I wanted to see an Endocrinologist.

Made appointments with 2 different Endo’s. First one suggested Reclast, Alendronate or Evista. I did tell him when I was diagnosed with Osteopenia I tried Fosomax. Had severe pain in lower back after a couple of pills. Told him I was told to stop meds and increase calcium. When he gave me choice of the 3 meds he also skated over the side effects told me to look them up on bone health website and choose. Had God complex so I moved on. Next Dr I really liked but she came at me with Evenity and I inquired about Evista. She said I could do that too. Ordered bloodwork and 24 hour urine test. Office called me after getting results and said she wanted to set up me up with Evenity shot. I started to panic. Mainly because after that is Reclast or Prolia. I asked if she ever prescribed HRT. They said no. I feel like starting out with Evenity is basically hard core. Like I said in 61, and after Evenity is then Prolia or Reclast, which I can’t handle biophosonates and I read that odds are I will have reaction to Reclast as well.

I know I have to do something I don’t want to fracture. Maybe Evenity would really increase my scores since I’m not that far over the line, but I keep hitting the wall with Prolia or Reclast. I’d like to try Evista first or HRT, but the whole blood clot thing with Evista worries me. I read that if you’re going to be sedentary for a long period of time for instance surgery or travel you should stop it at least 3 days in advance. She doesn’t prescribe HRT so I’m guessing I’d have to find another Endo who would prescribe it. Or if Endo doesn’t prescribe that what Dr does? PCP? Gynecologist?

I have a telehealth appointment tomorrow with the Dr about Evenity, to basically talk me off the ledge.

So how do you choose? I just feel like once I make the decision my life will never be the same. It just all seems like a roll of the dice.

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

gravity3 | @gravity3 | May 4 8:32am

In reply to @rudysmom "@gravity3 No I haven’t had any fractures. You’ve had good results?" + (show)

@rudysmom

My path is different. I had already had a number of bone medicines prior to starting bhrt at 77. My reasons for wanting to start bhrt had almost nothing to do with my osteoporosis. That said, I also knew that the hormones would have some positive effect on bone health. Since my path to stabilizing my osteoporosis was with medication I may never know to what extent the bhrt helped. The bhrt has been successful for the concerns I have.
Libido returned, no more urine incontinence, no more senile purpura, an enhanced sense of well being. Good luck to you in finding your own path. We are all so different.

wondering1 | @wondering1 | May 5 4:56am

@rudysmom Another route to doctors who are hospitable to bHRT is Midi (https://www.joinmidi.com/)

They are an online healthcare group covered by many insurance plans. I get my HRT through my PCP but have a friend whose doc was opposed. She uses Midi and is happy with it.

gravity3 | @gravity3 | May 5 5:31am

In reply to @wondering1 "@rudysmom Another route to doctors who are hospitable to bHRT is Midi (https://www.joinmidi.com/) They are an..." + (show)

jozer | @jozer | May 5 8:16am

A little rant...I am growing tired of the lack of information we are getting from our medical professionals. They tend to say "do this, and don't do this" without much explanation as to why. And testing and treatment is all over the board. For our doctors to actually say to "look it up on goggle" is really ridiculous; what are we paying for at our 15 minutes appointments? Here's how it should go (and sometimes does, but not in my experience!).

1. DEXA with TBS to identify bone health
2. Blood testing/urine test/nutrition tests/bone markers (CTX, P1NP, NTX etc.)
3. Appointment to discuss what to do if our DEXA/TBS shows osteoporosis, along with the blood work discussion.
4. Discussion about nutrition, bone building exercise, osteoporosis PT recommendations.
5. Discussion of all the various meds out there, how they work and which one would be recommended for me and why.
6. Monitoring every 3, or 6, or 12 months (I have read some docs to test more than once a year)
7. Yearly DEXA (the anxiety of wondering if meds work for 2 years is ridiculous; I do understand that the bone markers to indicate whether or not a drug is working but since DEXA is the "gold standard" I want one yearly. The anxiety of not knowing if a med is working is crazy.

hdeff | @hdeff | May 5 9:50am

I felt exactly the same way about the meds. The side effects are scary. You just have to remember that not everyone gets them. At 56 with a T score of -4.1 in my spine, and a spinal fracture, I opted for an anabolic (teriparatide) because I need to build bone fast. It's been almost two months and the side effects aren't as scary or bad as I thought they would be. I'm also on HRT that my regular doctor prescribed. Your scores aren't as bad as mine so maybe HRT, supplements, and weight training will be enough for you, just be cautious. I always worked out (jogging and weights) so I was very shocked to end up where I am now.

khowe2000 | @khowe2000 | May 5 10:46am

It does feel like a roll of the dice! And it really kind of is. I was diagnosed at 55, after having had 3 vertebral compression fractures, non-traumatic and undiagnosed, but very painful ofc. Endo suggested 2 options, I took about a year to do my own research because they give you nothing really, and finally gave in to Prolia because I was so tired of the repeated bouts of being incapacitated. Ultimately I'm thankful for my choice and the access to it, I've had 3 injections and I'm feeling far stronger and more stable than 1-2 years ago! I am gardening this year, taking it slow and carefully, and I know I could not have done this last year. I do weight bearing exercises and others as well, but I am very interested in the K2 thread and adding that to my regimen - I had asked my endo about this vitamin originally and he told me all I needed was calcium, in a normal amount. 🙁 I do not care for this Dr. (talks down to me) but they are such a specialized field and hard to change. Good luck!

gravity3 | @gravity3 | May 5 11:05am

In reply to @jozer "A little rant...I am growing tired of the lack of information we are getting from our..." + (show)

@jozer

I completely agree and I also know that our medical system is understaffed and in the state of constantly having to deal with insurers who act as if they are doctors.
For profit medical systems who claim they are "non profit entities".
The system itself is in real trouble and that is scary.
See: paientrevolution.com

daisy17 | @daisy17 | May 5 11:17am

In reply to @jozer "A little rant...I am growing tired of the lack of information we are getting from our..." + (show)

@jozer As far as yearly DEXA scans, I've read the reason that DEXA scans are only done every two years is because bone density changes are often so slow that they may be smaller than the measurement error of the scanners.

daylemaples | @daylemaples | May 6 10:47am

I am going to speak frankly here.
Prolia is NOT a first line plan in a 61 yo. Many experts now feel this is a drug to be reserved for the very old and frail population, and should be continued for life once started. There is no safety data available for use >10 years. I have been down the Prolia road and although there can be nice gains early, I am now faced with trying to exit the drug and experiencing the guaranteed major bone loss. One would not want to do this if it can be avoided. I am a "young 72", very fit and am now fully optimized with estrogen , progesterone and testosterone, exercise, supplements and diet. I am a physician. Be sure to get multiple opinions before you opt for Prolia.
Be aware that another "biologic," Evenity also causes rebound bone loss after the 12 month course. Do NOT STOP THESE DRUGS without a clear plan for follow-on treatment with powerful bisphosphonate (Reclast, for example) and a knowledgeable and accessible doctor. Good luck.
See TheOsteocollective,com for help. I have no disclosures to make.

sylviae00 | @sylviae00 | May 6 11:21am

Currently using JAMP cholestyramine 4 g. ..six month duration.
I did use prolia for four years. Lisinopril I tab. 10mg daily, prob 10 years
I am an active ninety year old. Use a treadmill, 30 mins, tai chi and stretch 30mins . Six days a week.
Have a good diet, reduced meat * had inherited a polyp for colon cancer which I have avoided due to removal of 25 ft of colon 3 years ago(particularly beef..though I love it). Eat fish twice a week, salmon and tilapia. Lots veg. Not salads. Interested in current bone reinforcement.
Lost my dear husband eight years ago (had Parkinson’s for 20 years..could it have been something else.