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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question 💭
Houston, TX

Do any of you take methotrexate and if so does it make you less hungry? My appetite is super low 😩 like I don't want to eat anything all day... I also use benlysta autoinjector and it gave me a bruise this last weekend 🙅🏾‍♀️🤦🏾‍♀️

My body doesn't want these medications, but I also know the holistic lifestyle I have been living isn't enough!!

Also, with lupus nephritis class III and class V if my blood and urine is showing increase is it time to add cellcept?

So many questions y'all 🫂

August 19
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Answer Summary

Members rallied around questions about methotrexate, appetite loss, and whether to add CellCept for lupus nephritis, with many sharing that... Read more

Members rallied around questions about methotrexate, appetite loss, and whether to add CellCept for lupus nephritis, with many sharing that low appetite is a common and serious side effect of lupus medications. Several members strongly encouraged pursuing a nephrologist and an experienced rheumatologist, noting that CellCept and Benlysta are proven treatments for lupus nephritis while methotrexate is not. A recurring theme was the importance of self-advocacy, tracking lab trends, and building a knowledgeable care team that truly understands lupus.

A MyLupusTeam Member

It's also NOT right to delay treatment for lupus nephritis because the creatinine is still normal!!! Treatment should be started right away to prevent the creatinine from rising, indicating that kidney function is dropping.

August 21
A MyLupusTeam Member

@A MyLupusTeam Member…low appetite or no appetite at all (for me) means the onset of a flare-up…usually my kidney is on the verge of being attacked or already being affected. Usually, I would require a new prescription (alterations to my medication)…at present (much to my dismay) my doctor has me on 2 auto immune suppressants: cellcept 500mg (2x) and tacrolimus (3tabs) daily…I HATE MEDS!!!…but what is there…I tried alternative herbal medicine for years at various intervals in my life and I still get flares… having to return to the hospital for treatment and care 🙏🏽…the struggle is real but continue to persevere 🌺

August 22
A MyLupusTeam Member

Empress, please consider getting a new rheumatologist, and be sure to see a nephrologist, too. I hate to say this, but a rheumatologist with experience with lupus would know that MTX does NOT work for nephritis. The four drugs that work for LN are Cellcept, Benlysta, voclosporin, and obinituzumab (which was only recently approved). More than one may be necessary for some of us.

Your BP spike could be explained by lupus nephritis, which can cause elevated BP.

Good luck, and please keep us posted!💜

August 20
A MyLupusTeam Member

Kat, I also struggle to maintain a healthy weight. I have an appointment with my rheumatologist Monday and I am not even going to look at the scale. I know I am severely underweight. I sent a message to my rheumatologist to see if I could get on a low dose of prednisone because of flare-ups and to gain weight.

August 19
A MyLupusTeam Member

Empress, I would ask your doctors about Cellcept and whether it would make sense to switch to that from the MTX. Cellcept is proven to work well for nephritis, while MTX is NOT.

August 19

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