Tacrolimus for lupus nephritis Class V? Cellcept isnt working.

[NewEngland3]

Hello,

Does anyone have experience with adding Tacrolimus for nephritis? Quick summary-At 22 dg with lupus, was on plaquenil, then age 44 ie this year out of the blue dg with lupus nephritis-biopsy showed Class 5-membranous nephropathy. May 19 put on cellcept and enalapril. Protein/creatinine ratio started in Feb 2019 at around 2-3 and now after 5 months of being on cellcept no improvement-actually may be tending higher-so 2.5-6. Cellcept hasnt helped my other symptoms either very much-still joint swelling, extreme light sensitivity and so on.

Rheum and nephro may be addint tacrolimus? Anyone BTDT? I am getting quite demoralized.....changed diet to vegan, added omega 3s...not sure what else I can do? I have 3 kids under 11 so even though I know I should rest it has been hard.

[Jmiller623]

Hi NewEngland!!! Stupid question here but did they pulse you with steroids and start taper with the CellCelpt or just place you on CellCept alone?

Tacrolimus is just another immunosuppressant with its own problems and side effects mainly GI and low blood counts. They will also follow your levels to make sure you’re in a therapeutic range. Usually cyclophosphamide is used for induction but is falling out of favor as tacrolimus has been shown to be just efficacious along with CellCept.

sciencedirect.com/science/a...

I feel for you. I can only imagine how hard it is to keep up with 3 little ones and still stand at the end of the day. I’d be dead.

[NewEngland3 in reply to Jmiller623]

They just started cellcept 1gram BID and then increased to my current dose of 1.5grams BID. My rheum is very against steroids-she believes they do more harm than good. She is a top lupus doc in the sense of articles published but obviously has her own dogma against steroids.

Thank you for the article-will research it. How are you doing? I read your story---typical hypocrisy of the medical establishment...it just is horrible it had to play out on you.

[Jmiller623 in reply to NewEngland3]

Steroids are definitely hard to stop once you start but they definitely helped lower my problem antibodies in no time. It was hard but I was able to get off of them after 5 months. I always thought steroids were reserved for exact situations like yours when you want to save the kidneys and in other autoimmune conditions - the lungs, heart, etc. I guess with slower progression, you have time.

Yeah. Life really dealt me a crappy hand. I’m doing okay. Getting bored without a job. Started dabbling in local lupus charity work. Plaquenil is working. I’m at about 70%. My husband and I will likely move after he finds a job elsewhere. He gets to choose where we go next since I brought him to our current place of residence. Hopefully go back to Baltimore/DC/NoVA area.

[KatieRL]

I’m an SLE patient and was given Tacrolimus following my kidney tx. It disagreed with me and I was changed to Sirrolimus. Most tx patients take tacro with no problems but my SLE has made me very sensitive to so many drugs.

[NewEngland3 in reply to KatieRL]

Thanks Katie-what kind of side effects did you have?

I just googled sirolimus and it is experimentally used in nephritis as well.