Hello "hello1234", good questions about osteoporosis and transplant. You'll notice that I moved your post to this existing discussion called "Bone Health After Transplant" where you can see the conversation @jolinda, @cmael @rwalkie and @tjgisewhite are having. I also think @contentandwell @maryflorida and @athenalee might be interested in adding their thoughts and experiences.

I think @cmael has experience with Fosamax.

I have a very high level of osteoporosis in my back and moderate pretty much everywhere else due to liver disease and Tacrolimus. The meds for osteoporosis are all hard on ones body, but my endocrinologist convinced me that the risk of having a broken back was a likely scenario if I didn’t take meds. She wanted to do an infusion of Reclast, but that interacts with Tacrolimus. So, I went on Alendronate in April.

I take it at 6 am every Tuesday, with at least 8 oz. of water and then do my morning walk and drink another glass of water. Then, my morning 1/2 cup coffee. I take my transplant meds at 8:15. Works for me so far.

I’m assuming you’re working with an endocrinologist. You should definitely speak with your transplant team as well about the meds. I also spoke with my pharmacist, and we determined my timing was good. You’re supposed to drink a full glass of water with it and don’t lie down, take any other meds, food, or drink other than water for at least 30 minutes. And, you always take it first thing in the morning.

You’ve probably done the 24 urine tests…I had not. There are certainly worse tests, but urinating into a hat for 24 hours when you drink 60 or more ounces of water everyday was not a picnic either!

Hi @hello1234 I am a liver transplant recipient and now have osteoporosis. My immunosuppressant is sirolimus. I had been on tacrolimus but it was causing my creatinine to be higher than my transplant department was comfortable with so they switched me. I was also on prednisone until recently. Prednisone is a steroid and apparently all steroids can cause bone thinning. My endocrinologist feels that prednisone was responsible for my osteoporosis but prior to all of this I did have osteopenia so perhaps not.

My osteoporosis was diagnosed in September 2019 after I had a minor hip fracture. Reclast was suggested but I hesitated to take a drug that stays in your system for a year so I tried the natural route. My bones got worse during that time. I finally had to do something so I chose to go on Tymlos. It's not a bisphosphonate and it does actually build bone. For most people the side effects are not bad, the biggest side effect seems to be fluid retention, primarily in the belly area but can also be in your feet and ankles. Some people do have other side effects but I believe the percentage of people who do is quite small.

The biggest negative is the cost if you are on Medicare. The copay is about $560 a month initially but with that high a copay you do get into the "donut hole" rather quickly at which point the cost is greatly reduced. I think it's now about $120 a month. If you are on private insurance there are other options and some people pay nothing. The only way you can get assistance if you are on Medicare is if your annual income is less than $60,000.

I will be on Tymlos for a maximum of two years at which point I will need to go on a bisphosphonate to maintain my gains. I haven't decided yet which one I will go on, I am only on month five of Tymlos.
JK