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Thread: Methotrexate without Prednisone

  1. #11
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    Default Re: Methotrexate without Prednisone

    Thank you sooo much for everyone's advice. Having different perspectives from people who live with this disease is helpful in ways I don't have the words to express. You are a good group of people and I am hoping my daughter will give the forum a try. Right now she is just trying to wrap her head around it all. Thanks again!

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  3. #12
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    Default Re: Methotrexate without Prednisone

    I am with Ed on this. I cannot say it better than he has. It is hard for me to imagine a Wegeners specialist would not start her with prednisone. I donít like the drug, BUT it has been a necessary evil for me.
    Masha

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  5. #13
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    Default Re: Methotrexate without Prednisone

    Welcome and sorry to hear about your daughter. This disease is tricky and there are no absolutes. It is important to have a doctor that you trust. There is, however, nothing wrong with asking questions. It does seem somewhat unusual to do the mtx without the preds, and especially, by leaving it "up to her." Keep us posted with what your doctor responds and God bless.

    A

    Sent from my moto z4 using Tapatalk

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    Default Re: Methotrexate without Prednisone

    I would think the dosage would be most important. Many people take small dosages of 10 or less for ever because of other chronic conditions and have few problems with such a small dosage. For me it messes with my blood glucose levels even at small dosage of 5-10 mg since i have type one diabetes but I need it as part of my maintenance to help control the GPA residual symptoms and keep them at a minimum. I would love to be off it but I feel better and do better using it. Any thing under 10 mg seems very minimal to me cause when initially diagnosed in 2010 I got 1000 units of Solumedrol just to keep me alive. That would equal 1650units of pred and that did give me me some serious side effects but it also kept me from dying. It took a year to get back down single digits and I have been that way for years like many other people who can't safely get off it.
    Knowledge is power! Wisdom is using it to make good decisions!

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  9. #15
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    Default Re: Methotrexate without Prednisone

    I won't bore you with all the reasons I hate pred and why I'm strongly against taking it for myself, But I will take it when necessary. If my vasculitis is flaring/relapsing (or my kidney transplant is showing signs of rejection) then it is the fastest acting drug and I will take it.
    If there is signs of activity then I would suggest pred. As soon as I achieve remission I always try to come off pred as quickly as possible (but still safely).
    Pred really makes my face bloat and I hate it. But I know this will reverse easily and naturally once pred is reduced. Not taking pred may lead to problems that won't easily and naturally return to normal.
    Diagnosed April 1995

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  11. #16
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    Default Re: Methotrexate without Prednisone

    Welcome to the forum, Chris! When I was dxed back in 2011 I had about the same symptoms as your daughter. A perforated septum had quickly developed into a saddle nose, I had heavy involvement in ears, nose, and sinus, and rapidly escalating lung involvement. No kidney involvement. Some joint pains but not a lot. I might have been a bit worse off than your daughter, as I had a pretty delayed dx and had been living with symptoms for 2.5 years. My treating doc at the time was barely experienced in WG but knew, or could look up, the typical treatments. I was started on 60mg prednisone and 100mg cyclophosphamide (CTX), a very effective combination of meds. RTX (rituximab) was just becoming approved for WG, and my doc knew about it, and so did I, but I had bad insurance and it didn't seem like an easy or necessary option at the time. I'm OK with the treatment I got, because CTX acts faster than RTX, and I couldn't imagine doing without prednisone, which is fastest acting of all, in terms of symptom relief. I'd had short tapers of it before, when it was thought by my ENT that I was having continuous sinus and ear infections. It always relieved my symptoms quickly, and now, being sicker, I knew that it would again, and it didn't disappoint. As I got better, the pred was tapered over time to much smaller amounts, and I was switched from CTX to methotrexate (MTX), along with it. I had a couple flares in the first few years that were quelled with med adjustments, the earliest with a larger and better dose of MTX, and later with a temporary increase in pred. For a long time I've been at 15mg pred or less, and recently have tapered myself from 7.5mg to 5mg, with no problem, where I had trouble the last time I tried. It may seem strange, and it did to me, that it's actually harder to taper at the lower doses, when you have been on it for months or years. That's because the adrenal glands, which produce cortisol, have become inactive, because prednisone has been doing their job and more, and it is hard to get them to come back on board, and slowing or stopping pred may present withdrawal symptoms, usually the same as your usual WG symptoms. It can even be dangerous. Some people don't ever get below 5mg and it remains to be seen whether I will.

    With all that in mind, I wanted to say that I've noticed a trend, when reading about new cases, to not let the use of pred drag out for months, if possible, so as to avoid the complete shutting down of the adrenals. That could be what your daughter's doc has in mind in avoiding pred altogether. But another opinion on that might be a good idea. Though it might not be possible for everyone, I think a lot of us might have liked to get off pred sooner so as to avoid this syndrome and also to have a shorter duration of weight gain, puffy face, bone loss and other pred annoyances. And while it may seem like they both do the same thing, the immunosuppressant, like methotrexate in your daughter's case, suppresses the action of the immune system against the tissues and organs in the body, and prednisone is a very strong anti-inflammatory, used to fight against swelling, allergic reactions, or the inflammation caused by infections or a malfunctioning immune system. Sometimes I still get confused about the differences, and that might be a question for your daughter's doctor.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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