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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 💭
Midlothian, VA

Recently I was prescribed Methotrexate to replace Hydroxychloroquine as my Lupus meds. i had to stop taking the Hydroxychloroquine due to Retinal Toxicity diagnosis. I am somewhat apprehensive starting this medication. The symptoms are very concerning. Has anyone had a good or bad experience taking Methotrexate. Feedback greatly appreciated.

June 12, 2022
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A MyLupusTeam Member

I am on my fifth week of methotrexate. My fatigue is worse and my stomach isn’t feeling that great but I am trying to stick with it. It is helping a little bit with the pain in my legs.

August 6, 2022
A MyLupusTeam Member

I took both of them together and noticed no changes and now I am on Imuran and the side effects for it is I could get Cancer but I have had great relief but is was used as a temporary medication until I could get Remicade and I got no relief from that and asked another Dr. to prescribe it. She did but wanted to make sure it was okay with my Oncologist and he approved of being put on it.
You’re talking they put 200-500 people on the medication but most people have side effects and some don’t. I weigh the odds before I take any medication but it’s only a possibility.
I was prescribed a medication for migraines and within a week my hair was half gone and it wasn’t listed as a side effect. I made an appointment with my Neurologist and he couldn’t find it as a side effect but he called the maker of the medication and they said one person in the study lost their hair so that answered my question and then he said I have another medication I can put you on and I said it’s only hair I will keep taking the medication because it was working.

January 2, 2023
A MyLupusTeam Member

Hello Akinsmom, thanks so much for the information on your experience. So sorry you had to endure all that. I hope things are better. I haven't had any issues thus far ( taking it for 9 months). Much love and prayers to you.❤️🙏

November 7, 2022
A MyLupusTeam Member

I had a terrible experience with methotrexate… I felt good for about 4 months I’d say then I started feeling like I couldn’t breath and would get up and be like hunch back and when I tried to talk I couldn’t talk it was like a grunt then little later I got sick and I was more short of breath and went to hospital and they found a nodule on my lower lobe and I had to wait two brutal weeks to be told it wasn’t cancer it was from the medication… there’s a lot of warning labels however my step dad took this same med thru iv for his lymphoma on his brain I don’t know how they correlate these for these two diagnosis… I don’t want to scare you just please be careful

October 26, 2022
A MyLupusTeam Member

I tried it for 3 months. Extreme fatigue! I was also in one of my longest flares at the time which it did not seem to be doing anything for. I hate Prednisone but it is what helps me.

June 20, 2022

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