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To go on Methotrexate or not: young and need advice

Discussion in 'Medications' started by youngchowder, Sep 13, 2016.

  1. youngchowder

    youngchowder New Member

    I was diagnosed with lupus 2 years ago. I am 23 and have been on Plaquenil ever since. The only symptom I ever really had was sporadic mild itchy rashes and joint pain. With plaquenil I feel pretty great; my joint pain is completely gone. However, occasionally (every 4ish months- I think its mostly when I eat poorly) I get skin rashes and mouth sores.

    In regards to tests, currently my ESR is normal and C3/4 are normal on Plaquenil but my other tests seem to be wonky.
    - Protein in Urinalysis = 30 (+1)
    - high creatinine (440) in urinalysis (but normal creatinine in another test taken at the same time)
    -low neutrophils
    - low WBCs, HGB, MCV, MCH
    - High RDW, blood

    I don't even know what all that really means.

    Question 1) My doctor wants to start me on methotrexate but I am scared about the serious side effects of the medication. Any advice? Additionally, I want to be able to have a child within the next 4 years and I don't know how methotrexate fits into that. I know that I can't take it while pregnant so how would going off of it affect when trying to conceive affect my lupus?

    Question 2) Does the fact that certain parts of my blood tests are wonky mean that my lupus is not being treated appropriately and is still active? I'm just so confused about what I can expect the medication to do, should all my blood tests be back to normal on medication or should i just expect relief of high inflammation and symptoms?
  2. debatat

    debatat Moderator

    It seems as though your doctor wants to get your lupus more fully under control and so is suggesting methotrexate. The goal is least amount of meds with the maximum amount of quality of life. It does sound scary with its side effects however your doctor would not be suggesting it if your symptoms did not warrant it. You can't take it while pregnant or trying to get pregnant and it takes 6 months I think to leave to your system. However you need to be in maximum health to consider a pregnancy. There are other meds such as Aziathiaprione which can be taken during this time.

    You should your second question more fully with your doctor. It does seem as though it will need more meds to get it more fully under control. Usually symptoms such as rashes and mouth sores for example disappear once the disease is under control. Stronger meds help with this.
  3. youngchowder

    youngchowder New Member

    Thank you for your help. It worries me that in order to get pregnant I should have my Lupus under control considering that I don't know that that will ever happen. :/

    I am just curious, is there another alternative than going from plaquenil to methotrexate? It seems like a big jump for me. I wonder what other milder medicines I could try first.
  4. omen

    omen FKA Clare.T

    Well, I hope your doctor can fully explain his reasoning to you, as he should be doing. Why methotrexate rather than Azathioprine (Brand Imuran) is an excellent question. You could get pregnant while still on that although of course it is advisable to be on as little medication as possible it is also advisable to be as stable as possible. There's no way of telling if pregnancy won't cause some flaring during or after.
    One option might be to add Mepacrine to the Plaquenil for maximum disease control, but pregnancy isn't recommended while on Mepacrine.
    Your doctor should also be jelpoing you understand the test results and how he interprest them, and willing to address any concerns you might have about out of range results.
    Any abnormal results need checking to make sure it wasn't some freak.
  5. youngchowder

    youngchowder New Member


    I really appreciate all the advice. I'll definitely ask my doctor about the other meds. A more milder drug seems like the best option considering that rashes and oral lesions are the only symptoms that are not under control for me while on Plaquenil. I don't plan on trying for pregnancy for at least a couple of years so mepacrine might be a good option for me.

    In general, my doctor isn't the best at explaining things. I can tell she cares but I always feel like I have to ask 1,000 questions to fill the gaps in my understanding. For example: she never addressed the fact that I had high levels of Protein in my urine or creatinine. I had to reach out and ask a couple of times at which point she let me know that she doesn't "look at that" instead she looks at the creatinine albumin ratio.

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