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Diagnosed with MCD and started on Tacrolimus

Kidney Conditions | Last Active: Jun 28 11:19am | Replies (10)

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Profile picture for brennb1577 @brennb1577

Hi Lori! Thank you for replying as I am trying to navigate through this situation. I am taking 2mg every 12 hours in the form of 2x1mg pills. I am also taking 20mg Lipitor and 12.5mg Losartan, none which I had taken before my diagnosis. I've been on a low sodium diet since my diagnosis but now I read that Tacro affects potassium levels so can't eat high potassium foods or drinks.

I called my nephrologist nurse after reading your message and informed her of my concerns. She called back and said the doctor reviewed the labs from my time in the ER after the seizure and didn't find Tacro to be at toxic levels, it was normal. She doesn't think the seizure was caused by it, ER doc also said the same. I was referred to a neurologist because I do have blurred vision at and dizziness at times, it comes and goes. I also feel fatigued most of the time. I must mention that I also felt like this before I started taking Tacro but it's more frequent now.
This is all so nerve wrecking, it gives me anxiety not knowing what is happening to me.

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Replies to "Hi Lori! Thank you for replying as I am trying to navigate through this situation. I..."

Hi @brennb1577 I’m so sorry you’re going through such a frustrating and stressful time with your health right now because know how disrupting it is to feel like your body is letting you down. It sounds like you do have so good doctors working with you so this may take time to sleuth out…

It’s good that your tacro level was considered a normal level. However it is a medication that can still impact your health and some people need to minimize dosages because of side effects. It can take some tweaking to find a sweet spot. Tacro is traditionally used in higher dosages as an anti-rejection med for a solid organ transplants or bone marrow transplants, both which demand a higher, but consistent, trough level. Finding the proper level for an MCD patient might be finding the lowest acceptable dosage to accomplish the mission.

I ran your meds through a drug interaction checker and
(Lipitor) Atorvastatin is listed as “will increase the level or effect of Tacrolimus and affects how the drug is eliminated from the body.” Again, I’m not a doctor and I’m definitely not trying to cast aspersions at all. But having been on Tacro I know how awful it feels if the level in the body is too high. You might ask your doctor if it’s possible to lower your tacro dosage to see if it makes a difference in your symptoms but still accomplishes reducing the MCD symptoms.

Since you mentioned being on a low potassium diet, is your level checked routinely with your other blood work?
Low potassium can cause symptoms such as muscle weakness or cramps, fatigue, heart palpitations, nausea or vomiting and constipation. It can affect nerves with tingling or numbness and seizures may occur when potassium levels drop significantly.

Are there signs that the tacro has been helping with your MCD?