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Methotrexate or Imuran for Lupus

I was recently prescribed Methotrexate to bring my Lupus and Arthritis under control. Really not liking the choice of taking a chemo drug. Does it really work and does it work long term? Really would like to hear from people who are taking it.

  1. The doctor is the one who prescribed them but I learned not to take meds being shoved at me without researching them first. I had two bad experiences with doctors treating symptoms and not looking for better solutions, less dangerous

    1. , Its so important to keep yourself informed. I'm so glad you continue to be your own best advocate and not take anything for granted. The tricky thing about lupus is that since it manifests itself differently in different people, no two treatment journies look exactly the same either. One of our patient leaders has been taking immunosuppressants for years and has found them really helpful: https://lupus.net/living/immunosuppressants. While others in the community have reported nasty side effects from methotrexate: https://lupus.net/forums/methotrexate-injections. Some treatments take time for you body to initially adjust. Some treatments that work for others may not work for you and visa versa. Lupus is complex and the treatment is just as complicated. It doesn't help when doctors have let you down in the past, we hear you! I hope you are able to find a treatment plan that works for you soon!
      Gabby (team member)

  2. thank you for the insight. My situation has been brewing for 35 years but the serum tests were never conclusive enough to be medicated. If the double stranded dna had been done years ago, I believe I wouldn't be struggling to keep walking now.

    1. I hear your frustrations. Many people living with lupus struggle with a delay in diagnosis, and have often expressed feeling like their doctor did not do everything in their power to discover the realities of their condition. Fingers crossed that with the treatment options you have available to you now, that you might be able to regain some of your ability to walk in the future.

      Appreciate you sharing and taking the time to post. - Cody (Team Member)

  3. Your in the 🙏 Feel better soon For me: I go to a PCP specialize Geriatric I'm 20 years away from that but he's great in being on the same page and getting me to properly other specialist I started by bringing him 2 page notes of Actual Diagnosis Test&Results followed by why that was done it was years multiple doctors and lord knows every test out there I don't think he'll ever understand Lupus like those of us who live it everyday how we change our diet bc oh it's Tuesday I can't do that but I will try and do this and I know I can do that Please don't give up FAILURE IS NOT AN OPTION (nasa) well this MD won't run labs for Lupus nor will he for sclerodema simple blood draw I know where I stand and through changing my diet can totally change my life but it is so ridiculous when one has to go to 5 other doctors if only he could do 2 test ill handle that on my own especially after 40 years but insist I need 3 other doctors I say for what I understand what I have and what can help me to bring it to a point of being livable
    Long short I was at office yesterday ALL cholesterol levels are way ways out of nor along with tagliserides (bad spelling) oh yeah potassium was slightly off by .01 his concentration I must start potassium right away we'll nothing said about the 4 other results and I've been there dun that with him b4 so being my own advocate I learned what/why the cholesterol would be then found a possible cause and changed my diet/life style again...Please don't give up failure is not an option since I now have 8 organs involved the week is short a day it's OK I won't give up anyway 😉

    1. , I am so sorry that you are having to fight so hard to get the care you deserve! So often you have to act as your own best advocate and keep fighting until you find the right doctor and right treatment plan. Don't be afraid to keep seeking opinions until you are feeling listened to and supported by your healthcare team!
      Gabby (team member)

  4. Hi, from my point of view, it's important to refrain from inquiring about the efficacy of medications from others, such as asking, "Does it work?" It's crucial to recognize that each individual is unique, even if they share the same illness. While some doctors may not readily seek your input on whether to prescribe a particular medication, the best course of action is to conduct thorough research on the medication and understand the underlying concerns that make you hesitant to take it. I say this because, in my sincere opinion, if someone tells you, "No, it doesn't work; it's terrible, etc.," and you decide against taking that medication, you might miss out on a treatment that could have been highly beneficial for you. It would be unfortunate to forgo the opportunity to be on a medication that could have been effective.

    Additionally, it's important to acknowledge that side effects are often an inherent aspect of medications, although not necessarily indicative of their overall suitability, unless they involve severe issues like blood clots, cardiac problems, or anaphylactic shock.

    On a personal note, I have been living with Lupus for over 18 years, and after trying numerous medications, I have found that the combination of Saphnelo and methotrexate has been the most effective treatment for me.

    1. , Thank you so much for your insightful words. You are absolutely right, everyone's body is different, so the treatment plan for one person, might not work for the next person and visa-versa. Side effects can be nasty, but the symptoms the medications are aiming to treat can be even more devastating. It's all about working with your doctor to find the combo that works best for your unique needs. I'm so glad you have found a treatment plan that is working for you!
      Gabby (team member)

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