Diagnosed with MCD and started on Tacrolimus

Welcome to Connect, @brennb1577 Just for clarity, I’m not a MCD patient, but I have personal experience with tacrolimus. The level of this medication needs to be monitored in the blood very closely so that toxic levels don’t accumulate. Traditionally, your doctor would be monitoring your tacrolimus trough levels weekly so that you are at a specific level.

I’m hesitant to share my story for fear of scaring you. My situation was completely different as my levels were much, much higher than your 2mg weekly. I had recently gone through a bone marrow transplant. My kidneys were already touchy. But I had experience with how awful Tacro can make you feel if it’s accumulating too much in your system.
So I’m wondering if what you’re experiencing isn’t so much the withdrawal from steroids as an overload of tacrolimus. Too high of a level can impair blood flow through the kidneys leaving you feeling pretty loagy.

Tacro levels, if too high in the blood can cause nausea, fatigue, jitters and have you feeling super gross. And a trough too high may cause seizures. When I was on tacro, a change in another medication caused my normally well balanced level of tacro to go out of whack, holding too much in my system. I was ill for a couple of days and I went into complete kidney failure. The trough revealed my normal level of 7.2 in the blood now soared up into the mid 20s. It reversed quickly after my level of tacro was dropped to reflect the changes with the new medication. But in the meantime, I felt worse than when I was on chemo.

Foods and supplements on my list to avoid were:
Grapefruit/grapefruit juice. Pomegranate juice, Cuties (Seville oranges), Alcohol, highly fatty foods, too much caffeine, high salt or salt substitutes, and herbal supplements like turmeric, ginger, St John’s wort, etc. all can potentially interfere with absorbency and metabolization of the tacrolimus.

So I’m wondering what your targeted tacrolimus trough level is and if you’re exceeding it? You mentioned taking 2mg weekly. Is this at one time? Or in tiny increments daily? Are you taking other meds?

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.

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?

@brennb1577 welcome to Mayo Clinic Connect. I barely know what MCD is. It took a lot of digging around to find it: Minimal Change Disease. I ran across it awhile back, I think in another similar discussion in this same Kidney & Bladder group. The poster had been prescribed Cellcept for it (aka Mycophenolate).

Tacrolimus in your discussion title caught my attention. Both Tacrolimus and Mycophenolate are commonly used as anti rejection or immune suppression meds for transplant (as Lori said). I had a pancreas transplant 20 years ago. I have been on both Tacrolimus and Mycophenolate (and some others) since the transplant. I am now only taking Tacrolimus. I have always used .5 mg capsules (the smallest strength) because I had so many dose changes at first it was easier to do by adding or subtracting capsules for the dose and didn’t waste larger stronger pills, tablets or capsules. I also believe strongly in starting a medication with what is known in the business as the “minimal effective dose”. This means it is better to start small and gradually increase the dose to get the desired outcome than the other way around. It also can help to prevent side effects. At present I am taking 1 mg (two .5 mg capsules) in the morning and 1.5 mg (three .5 mg capsules) in the evening. I have been for a very long time.
I have been on Tacrolimus for so long that it is hard to remember the side effects. I remember having a slight tremor in my hands, some thinning of my hair and some increases in blood sugar. I am diabetic and had blood sugar issues anyways before the transplant. I’ve always had thin hair. It just got worse with the Tacrolimus. Now that I’m older it is still worse. One thing that does bother me is that Tacrolimus is hard on kidneys. I have diabetes related chronic kidney disease (CKD) and now I have damage to my kidneys due to Tacrolimus verified by biopsy. I found that out when I was evaluated for kidney transplant.

Lori mentioned the trough level. This is the amount of drug left in your system when you have not taken the med for about 12 hours. It helps your doctor know how to adjust your dose. You will eventually be told what your desired level should be. At first (20 years ago) I had to have this test every day. Then 3x per week, then weekly, then every other week, then monthly… now it is done about every 6 months. As Lori said it can take a lot of tweaking or fine tuning. I’m not sure how things are determined for MCD. I only know transplant.

All meds have side effects so it is always good to be aware of potential problems before starting something new. Another good principle is to be aware of possible interactions that may occur with other medications. Thank you Lori for doing that drug interaction checker. I used to take Lipitor and had an issue with potassium. I think it was hyperkalemia (high potassium). High potassium is hard on kidneys. High or low potassium is not good. It needs to be “just right” (think Goldilocks). It was 20 years ago so I might be remembering this incorrectly. At any rate the Lipitor was changed by my doctor to Rosuvastatin.

Do please keep us posted on how the MCD is responding to the Tacrolimus.

Thank you all for your responses. According to the labs from my trip to the ER, electrolytes and potassium levels were within normal range. I'm supposed to follow up with a neurologist but all the ones we have contacted, that are in-network, are booked until September.
How do you all deal with this on daily basis? I suffered from anxiety prior to my diagnosis and now I feel like it's elevated and maybe that contributed to my seizure. I feel so tired all the time, just want to be lying down, constant nausea, feel cold then hot, body aches. I don't have any appetite, barely eat.
The dietician won't see us until mid-July, we'll just have to go by what information we find online on foods that are safe to eat. I feel so bad for my son, he wants to go to play with his friends, but I worry he may catch something and give it to me. This has been hard on all my family especially my husband, he has to cook, clean, look after my son, me and work. We have no family in the area to help out. I really admire you for living so many years with such conditions. I've always had health issues since childhood but never one that made me feel so awful and lasted as long as MCD. I wonder if Tacrolimus will even work, I am seeing very foamy urine daily, so it seems to not be working so far but it's only been a week. I'm dreading having the other options my nephrologist mentioned, they have more adverse side effects. I do hope Tacrolimus can control it and my body can adjust to the side effects.

Please post what you experience with the kidney medications/

I am experiencing very bad nausea, diarrhea, chills to the point of shivering, muscle aches and confusion. I just can't handle it, I've never felt like this before. I've decided to stop taking the medication and talk to my doctor about it. All of the sudden things don't look good.

My husband did some research, and seizures are listed as a side effect of Tacrolimus even at normal levels in the blood. They are not as common as the other side effects but do happen especially with people with underlying neurological conditions. I really don't want to have another seizure so looks like Tacrolimus is not for me. I still feel confusion, it's a weird sensation, like I'm living in a dream or nightmare.

Hi @brennb1577 I just wanted to check in with you today to see how you’re doing. You were feeling pretty awful last week so I hope you’re doing better now.
Did you stop taking the tacro? Any improvement with the symptoms you were experiencing?
What did your doctor suggest?

Hi @loribmt Yes, I stopped taking tacro as my nephrologist didn't want to continue with it until I'm cleared by a neurologist because of the seizure. My appointment is until September so a long wait. My husband is trying to find an appointment quicker but it's difficult. In the meantime, doctor said to take losartan, atorvastatin and spironolactone to manage the nephrotic syndrome.

I am slowly starting to feel better, but mornings are the most difficult, dizziness and nausea. I wake up with my hands a bit swollen and the swelling on my legs isn't completely gone. I'm struggled with depression before, and this is making more difficult. Sometimes I do feel hopeful and there are moments when I don't think about my condition. Praying I get better soon and for the many others who are also battling a disease or illness. Thank you for checking in with me.