Bone Health After Transplant

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

Hi all,
I am a one year post kidney transplant patient. My endocrinologist just recommended Forteo or Tymlos daily self-injections to build bone to treat my osteoporosis. Has anyone taken one of these daily injection drugs to treat osteoporosis? Have you taken Prolia instead? Please let us know your experience with these drugs. I need to decide which way to go.
Thanks everyone!!

@hello1234, I hope that you are enjoying a healthy and relaxing holiday season. I wish that I could add my input to your inquiry about the osteoporosis treatments that the endocrinologist has recommended, but I am currently in the osteopenia stage.

I am wondering if you have had the opportunity to check out the discussion that Colleen shared with you.
How soon do you need to make the decision?

Hi @rosemarya 😊 It's so great to hear from you!
Yes, I am enjoying a very safe, relaxing and quiet holiday in Florida.
Regarding my osteoporosis, I have put my decision "on hold" for now. I am eating more yogurt, drinking milk, taking Vitamin D, etc.
Each medication has significant potential side effects including stopping the medication after you start can be a problem.
I am leaning towards Prolia, but definitely not enthusiastically. My doctor mentioned Forteo self-injections but I would need to do a close monitoring of the PTH hormone level to make sure it doesn't become elevated because of my kidney transplant, Fosamax elevated my liver enzymes, etc. No great answers and a little scary, so I am delaying.
I hope all is going well for you and your family. Thank you so much for checking in with me! Your posts are always so caring and helpful. I really appreciate you!
Love ❤

Hey @hello1234, have you been talking to your endocrinologist? Since you’re bone depletion is as bad as mine and, as you know, Tac makes it worse, I’d be concerned about bone breakage. My endocrinologist said for me to take 1,200 mgs calcium, plus 1,000 units vitamin D, along with yogurt and fortified nondairy milk.

Drug interactions and protecting our new organ is so tricky. So, I’ve been in the process of at least switching a couple specialists to my transplant hospital. Do you go to Mayo for your transplant issues? Could you see an endocrinologist there for some care coordination?

When do you have your next labs?

Hi @athenalee 😊 So happy to hear from you!! I hope your holiday was a good one. Yes, I love your idea of seeing a Mayo endocrinologist to help coordinate my care in one place. However, it's not that easy to get an appointment without a referral and it's not easy to get a referral. What process does your transplant hospital use to get appointments with different specialties?

Hey there. Always good to chat with my Covid-times transplant recipient sister😷!

I asked my Lahey transplant nurse to make referrals to a rheumatologist and neuromuscular MD at Lahey. They were more than happy to do so. I had written a brief overview of my need for coordinated care as part of my neuropathy issue is believed to be impacted by Tac. Plus Sjogren’s, for whatever reason, manifested after my transplant. And, I’m concerned about the meds used to treat it as they are immunosuppressants, and may interfere with my current meds.

So, I think in your case you definitely have a similar circumstance. Our transplant teams have a lot invested in us. So, they know it’s important to assist us in being healthy.

Thank you so much @athenalee . Did you send your brief overview in a message portal to your nurse or how did you communicate your request?

Through the portal.

Good morning @athenalee 😊 I have excellent news to share! I took your advice and encouragement and spoke with my transplant nurse this morning. You were correct! She happily gave me a referral for an endocrinologist consult! I am so excited and thankful. Thank you, Thank you, Thank you "Transplant Sister!" for giving me that guidance. It will be very comforting to speak with an endocrinologist at Mayo regarding my osteoporosis treatment choices while being extra careful to protect my newly transplanted kidney!
Love ❤