Transplant anti-rejection medications. What's your advice?

Hi, I came into this discussion a little late. Hopefully by now you’ve gotten some relief from the bone and joint pain...and some sleep! While I I didn’t have a liver transplant, I did receive a bone marrow transplant. We share many of the same anti rejection meds. Tacrolimus being one of them. That medication, along with a few others, are known to deplete our bodies of magnesium fairly quickly. I have to take supplements daily to maintain a normal level. A low level can produce similar symptoms along with myriad other issues. Do you have routine blood draws frequently? If so, maybe mention to your physician to add a mag level to your next labs. The level should be 1.7 or higher. Best of luck to you! Lori

@gphetteplace Hi I do get a sharp pain once in a while in my lower calfs, if I stand on it it goes away in just a few seconds. Very strange but it works.
Blessings
Dana

Thank you for starting this discussion! Has anyone had severe bone and joint pain from the Tacrolimus? If so, did it go away on its own or did you get treatment? I’m pretty sleep deprived from waking up with throbbing legs and feet.

Thanks. What is the name of the medication it was prescribed to you for purpura?

Thanks @rosemary

Hi, mmr1984. I am sorry to hear that you are experiencing stomach cramps with your cellcept. Cellcept is an antirejection medication tht many of us transplant recipients are prescribed. It is a powerful drug and a necessary drug for us. I want to share an article that does discuss side effects, as well as the importance of following a medication schedule, and foods to avoid that might interact with medications. - Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects
What has your doctor said about the cramps? Has there been any change in your medications? Have the stomach cramps started recently?

How did you deal with cellcept stomach cramp?

You know, I hadn’t thought of that......I just might have to resort to that option. We will see next week when I pay a real visit to my endocrinologist. I am working on my list of questions and concerns. Thanks to all of the great contributions on the subject of osteoporosis from members....I have had my bells rung.

Thank you.
Chris

@artscaping I too hate adding any medications, even those to aid in the digestion of lactose so I generally avoid it. I have discovered that I can now have Greek yogurt though.

I have a friend who has a severe problem even with a trace of lactose, and now she has developed gluten intolerance too. I’ve found that it is not unusual to have one follow the other. I still use non-dairy creamer and lactose-free milk. I’ve discovered Fairlife milk which has no lactose, plus it has extra calcium and protein! I prefer to make my oatmeal with unsweetened almond-coconut milk, but I’ve switched for the extra protein. I have read that extra protein is important if you have osteoporosis but I’m seeing two endocrinologists in the next couple of weeks so I plan to run that by them.

I’m off on a tangent here, but my PCP thought it wise to get two opinions since osteoporosis is such a serious issue with often problematic medications. Since my osteoporosis was caused by my immunosuppressants and my lactose intolerance was triggered by them, I guess it’s not such a big stretch!
Jane

@contentandwell, I appreciate this post. I also am lactose intolerant. As my endocrinologist told me......you don’t have to quit lactose totally....just be wise about it. Choose one......cream in your coffee or an afternoon yoghurt......but not both. She was right. The unrelenting diarrhea as you called it became a part of history for me. I am not a fan of adding another chemical medication to my growing list of pill bottles. Sometimes I think we need to do our own research. I have become a tracker........chasing everything these days. Happy Thanksgiving.....thanks for letting me pop into this discussion. I am glad I landed here.
Chris