Lightheadedness and Knee heaviness/dull pain after kidney transplant

[Jeeeemv]

Hi everyone, My client developed lightheadedness after kidney transplant, he's 3 months post transplant now. Actually, he had dizziness and imbalance pre-transplant and it worsen after the transplant. Moreover, he complains of knee heaviness, sometimes with dull pain. His BP is quite stable, not taking antihypertensive medicines. He's taking Prograf and Myfortic. Does anyone have the same problem? What did you do to address those problems? Would highly appreciate your advise. Thank you!

[shash8363]

Hi,

I had light headedness after my transplant. I never lost balance but did feel a little dizzy and had to sit down. I thought this was due to the medication side effects. My transplant team did not think it was the medication. I went to my primary care doc and did all blood work again to see if something else was going on. My doc also suggested checking thyroid levels and turned out I had hypothyroid - which can cause lightheadedness. With medication for hypothyroidism, the lightheadedness incidents have reduced significantly.

There are many factors that can cause your client dizziness. Best to talk to doctors and ask for a full blood work.

Good luck!

[Jeeeemv in reply to shash8363]

His thyroid levels were all normal. Now, we will look into any neurological problem that can attribute to lightheadedness.

Since he has glaucoma also, we recently had optha consult and his vision was stable and Optha doesn't think vision problem is causing the lightheadedness.

[LavenderRabbit]

Just curious, what do you mean by “client”?

[Darlenia]

Agree with Shash8363. There are so many things that can cause dizziness and balance issues - thyroid matters, inner ear and visual disturbances, electrolyte issues (although this one probably was ruled out by the transplant team), and more. Knee issue could be explained by arthritis, which in some instances can affect young people, or perhaps overuse and so on. It might be a good idea for your client to see his/her primary doctor for a good check-up and possible referral to others. Make sure your client knows to coordinate those visits with his transplant center, particularly any medications that might be recommended.

[Jeeeemv in reply to Darlenia]

Thank you for this! Now, we will rule out any ear problem or neurological problem aggravating the lightheadedness.

[WYOAnne NKF Ambassador]

It takes your body at least six months and longer to adjust to your immunosuppressant meds. They are probably the culprit for the lightheadedness. However, always check with your transplant team. It could be a simple lowering the dose of meds, or something else.

[Jeeeemv in reply to WYOAnne]

thank you for sharing!

[Jayhawker]

I do some exercises PTs have given me. That has helped a lot with knee and hip pain I’ve been experiencing on my side. But these issues aren’t related to the kidney transplant or rejection meds. Instead, I have injured my left knee in the past. As I’ve aged that injury has taken a tole on my hip. Fortunately the exercises and stretches the PTs have given me have helped this quite a lot.

Of course, I talked with the transplant team about this pain to be sure it wasn’t related to meds, surgical complications or an issue with the kidney. They were sure it was unrelated. It just underscores that not everything we experience is transplant related. But we should always check with the transplant team first.

Jayhawker

[Jayhawker in reply to Jayhawker]

I’m 10 days into the stretching and strength building exercises the PTs gave me. I’m experiencing a good improvement on my hip and knee pain already! I do these exercises first thing in the morning and in the evening before going to bed. They take about 15-20 minutes both times.

Jayhawker

[Jeeeemv in reply to Jayhawker]

Thank you very much for sharing this Jayhawker

[ShyeLoverDoctor]

I had to absolutely stop the prograf and switch to cyclosporin. I got really toxic on it, made me dizzy, mentally confused, kept asking the same questions, memory issues. Don’t let anyone tell you that prograf does not cause dizzy ness. It does. Mine went away about 4 days after I stopped taking it. According to research and talking to doctors, it is the very most effective transplant drug, but it isn’t for everyone. Cyclosporin is next best, but I am starting to experience cognitive effects from it. I had no issues before these drugs. I can’t have belatacept because I’ve never had Epstein Barr. I can’t start the other drug, sirolimus, because right now I’m in the hospital for a medical emergency. My white count is extremely low - should about 4.5 to 10. Mine is 1.06. That’s very very dangerous. When you doctor calls you the same day you did a blood test, you know it’s serious. He sent me to the ER for an urgent evaluation. We tested for sepsis, etc, but I knew what it was - and I was RIGHT. They switched me from Celcept to Myfortic saying they’re the same drug, microphenelate, only with slightly different formulations. Guess what. For me, my body, Myfortic works a lot are to suppress my white count. After having many many blood tests for viruses, fungus etc , my theory was correct. Nothing is wrong with me. It’s all one doctor’s decision to swtich my drug that’s landed me in the hospital for 5 days. She thought it would help with my nausea. Nope. There’s another form of tacrolimus called envarsus that is more time released to minimize side effects, but my insurance refused to cover it and it was $ 1,700 a month. I bought two weeks worth and tried it, but, nope, still dizzy and confused. I told them I need to drive or I will feel disabled, i can’t when I’m this dizzy and don’t feel safe at home alone. The social worker’s suggestion was to use a walker and give up driving. Really!. Your client needs to seriously consider switching medications with his doctor. Let the doctor tell you the pros and cons. Get a second opinion if you can.