Joint Pain after Organ Transplant

3 weeks after kidney transplant surgery severe joint pain. Wondering if it’s tacrolimus related.

Welcome, @lauradowning. I moved your question about severe joint pain after kidney transplant to this existing discussion:
- Joint Pain after Organ Transplant https://connect.mayoclinic.org/discussion/joint-pain-liver-transplant/

I did this so you can read previous posts and see you're not alone, and the helpful posts from other members like @grateful76 @muddlycrew @jovanna @mfilson @johnnybroom @juli175 @rosemarya @xplantguy1212 @gphetteplace @tylererinm @eggnog24 @beracha and more.

Laura, congratulations on the new kidney. Have you told your transplant team about the pain?

Hi, @lauradowning. Congratulations on your recent kidney transplant. I had my kidney transplant in 2009 along with my liver transplant. I do not remember feeling any severe joint pain as I was healing or recovering from my transplant surgery. I did however, feel really uncomfortable because of edema and extreme swelling in my legs before my transplant, and it did not go away immediately afterwards. I also needed physical therapy so I could regain muscle strength after being mobility limited for several months prior to transplant. Are you having physical therapy? Could you have overdone it? Are you attempting to regain your post transplant activity too soon and have you possibly injured yourself?

I personally would hesitate to blame a particular medicine for this because you are on many strong medications currently. These will be gradually reduced as your kidney responds as indicated by tests and frequent labs. Your team will likely be able to advise you about the cause of the pain as well as offer a way to manage it.

Laura, We are often hesitant to call our nurse coordinator, however, at only 3 weeks post transplant you should keep in close communication. Can you call her today? I look forward to hearing what you find out.

Pravistatin worked for me,

Thank u for your support.

I hope that many of you have experienced a relief from the joint pain that brought you to this discussion. I also hope that this new year is going well for you. I invite you to share your experiences and any questiins or updates:

@johnnybroom, Are you finding any relief from your pain and locking fingers? Do your doctors say if it is related to the transplant meds? Have the doctors suggested the a remedy?

@eggnog24, I decided to check in on you because I am wondering how you are getting along since you last posted here. I am long time off prednisone, but I do get stiff and feel some pains, so my PCP is quick to remind me that I'm not 50 anymore. He recommends stretching and it helps to ease any pain or stiffness thatI feel. Was stopping the prednisone the reason for the pain?

@footballmum, How are you doing? I see that you mentioned RA, so I am curious whether you have RA and if your transplant medications have had any effect on your treatment?

@gphetteplace, How is this new year treating you and your kidney? Are you having success with your dietary mindfulness and water intake? Do you have any tips to share as to how you monitor your water intake each day?

@beracha, Have you started taking a statin yet? Did your PCP go along with the choice of the transplant team?

@grateful76, Has your joint pain diminished, yet? How are you adjusting to living with your transplant? Have you had your annual evaluation yey?

@lauradowning, Has your severe joint pain eased since your Jan. 9 post? What have your transplant doctors had to say to you about whether it is related to Tacrolimus?

@jackcurry1, thanks for sharing here which med is working for you. Good news is always welcome! Will you tell us more about your transplant? Jack, What organ did you receive? When was your transplant?

Thank u for following up. I have not started statin. I am going to use lipitor . Most people use it? I have not started since I had 4 surgeries last yr and between general anesthesia and antibiotics all yr I wanted to let my body rest. Unfortunately now I am so nauseated I am working on keeping meds down. I have liver duplex. Coming up and scheduled for clinic in 3 weeks. I hope I can start statin then.

My spouse had a DLT 6 months ago. During one of his blood panels his uric acid levels were high. This isn't always ordered to monitor on every blood panel. Our team said if he develops any joint pain to contact them as it could he signs of gout. The mentioned pain usually starts in the foot. So far no joint pain, but we are monitoring it to see if another prescription will be needed and added to his regimen.

Good morning
I do not have RA. I've been to see a rheumatologist and had negative test results. My sister suffers from RA and the symptoms sound very familiar. My liver numbers took an extreme jump about 1 year post transplant and my team were eliminating causes rather than just jumping right in. I do experience some joint pain and was told it is a side effect of the TAC. I am on a low dose and things aren't too bad. Hopefully that made sense.💕

@beracha, I did not realize that your year has been so full of medical interventions. And now nausea is enough for one person to contend with. Is there anything that the doctors can prescribe to help those medicines stay down? I seem to remember taking something for that 15 years ago when I had nausea.
I imagine that you have a long list of questions for the doctors at the clinic in a few weeks. Beracha, I have no experience with ductopenia that you have been diagnosed with, but I did have my transplant for PSC (Primary Sclerosing Cholangitis), a disease which affects bile ducts. It is not fun, I'm here to listen anytime you need to talk.