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Thread: Methotrexate without Prednisone

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    Default Methotrexate without Prednisone

    Hi everyone. My 21 year old daughter was just diagnosed with Wegeners.
    She has a perforated septum which is what started the trips to the doctor. She has constant joint pain and fatigue plus nose bleeds that come and go. Also they found some small nodules in her lungs (very small per the doc). All her blood work & urine tests came back within normal range so they didn't do any imaging of her kidneys. The Rheumy said she would consider her disease mild and wants to start her on methotrexate. She said she could also add prednisone but said is not doing that right away. Has anyone ever heard of using methotrexate without prednisone? All my reading says that it is the standard go to regimen for non life threatening situations. I trust the doc. She is a vasculitis specialist at Northwestern in Chicago. It took us (9) months just to get an appt. and she was very thorough and seems very knowledgeable. Would love to hear some input on others experience. I am so scared for her and am trying to remain positive. So many people have some scary stories and I know that she is lucky that is seems to be caught early. Just want to make sure we make the best choices for treatment. Thanks all.

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    Default Re: Methotrexate without Prednisone

    Hi and welcome!
    It's certainly not the typical regimen but not outside the bounds of possibilites. The doc may be trying to minimise the impact of side effects if she doesn't see an immediate need for the Pred. What's the CRP reading on your daughter's blood test? If it's not stupidly high it may explain the decision. I've been on Methotrexate without Pred but that was some way down the road after initial diagnosis.

    We'll see if anyone else can chime in and offer more.

    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: Methotrexate without Prednisone

    I'm on Mtx and Prednisone.
    My Mtx slows things down so that a little Prednisone can bring the auto-immune attack to a complete halt (remission). I frankly don't think either drug can do the job by itself, and certainly NOT while remission is not achieved.

    How much experience does her doctor have treating Weg patients?
    This monster of a disease is very hard to tame and you need it to be under control.
    You don't want a doctor who is learning how to treat this on your daughter's health.

    I'd recommend getting a second opinion from a specialized Weg doctor or switching to one who is.

    Ed.
    Last edited by seied; 09-15-2019 at 01:06 AM.

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    Default Re: Methotrexate without Prednisone

    Thanks for the info. I don't have an exact number but her C reactive protein is less than 0.5mg/dL. All her bloodwork is perfectly normal. Her doctor says that she would consider her disease mild. She is a vasculitis specialist so she has experience with Wegeners. She told Dana that she could do prednisone also but kind of left it up to her. I thought that was unusual but maybe that is because she has normal bloodwork and her tests don't show any serious organ damage? This is all very new to us and confusing. I just want to make sure that my daughter gets the right regimen.

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    Default Re: Methotrexate without Prednisone

    Perf septum is not mild Weg. Constant joint pain and nosebleeds, not mild.
    These are symptoms of active auto-immune. Remission is urgently needed.
    Doctor "kind of left it up to her." Did doctor explain the pro's and con's?

    Ed.

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    Default Re: Methotrexate without Prednisone

    Hi Ed
    She did explain the possible side effects but not really pro's and con's. She said that Prednisone would bring down the inflammation quicker until the methotrexate took full effect (guess it takes longer to work) But she said that it came with additional side effects such as bone loss, weight gain, slow healing and others. Just got the diagnosis two days ago. After doing some research we called back with some additional questions and are waiting for a call back. It is the weekend so I don't expect to hear until Monday. I am going to talk to my daughter about doing both meds.

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    Default Re: Methotrexate without Prednisone

    Me again. Would sure like to hear some additional thoughts and opinions. Her doc seemed knowledgable but now i am having some second thoughts. Has anyone heard of taking a methotrexate only approach when first diagnosed? Thanks again Ed for your info. It was real helpful. Hopefully my daughter will be open to taking both meds. Sounds like that would be a good idea despite the added risks.

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    Default Re: Methotrexate without Prednisone

    I started with pred and MTX, cut out pred after a while. Was on MTX only for about 4 years and achieved remission for nearly 8 yrs. Have relapsed in past year, taking RTX now, have had 3 infusions and am feeling better bit by bit. If you have a good doc, and you seem to, please follow given regimens...they will work, just takes time and patience. Best to you and your daughter.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Default Re: Methotrexate without Prednisone

    Welcome
    I don't know the answer but I do know it is most common to start with prednisone. I think the question might be finding a balance of risk. Is it more dangerous to use the prednisone or risk sustaining more damage from GPA by not using it? Stopping the damage until the methotrexate takes effect is something to think about. Most of the problems from prednisone are from long term use. Like from months and years. Prednisone is given for a wide range of ailments on a short term basis. I myself have been on higher and lower doses of prednisone continually for 20 years now. For much of the time I have been on 9mg daily and as high as 60mg.
    Perhaps you could ask your doc by email to explain what her/his thinking is on this issue.

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    Default Re: Methotrexate without Prednisone

    I know weggies who are on immune suppresed meds without pred, and to be honest, I am jealous at them.

    I am on the pred since 2008 and will never be able to quit it. Started on 60mg because of life risking inflamation in the lungs. Today I take 5mg daily and can't take less. When wg is more active I take between 5-30mg.

    It is very hard to be on the pred and to reduce it so if the dr. Thinks that your daughter can make it without the pred, I would give it a try.

    On the other hand, please consider that mtx might not be powerful enough to stop the wg activity and in this case she might need rtx.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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