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Thread: Starting treatment today and having a bit of anxiety about it

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    Default Starting treatment today and having a bit of anxiety about it

    Hello Everyone

    Hope everyone is doing well. I went for my second appointment yesterday with Rheumy. We went over final CT Scan and blood work results with another full exam. I am starting Methotrexate and folic acid today and continuing on with the Prednisone. Having anxiety about taking the medications (all new to me) what to expect (side effects) will I be OK alone etc. I am probably worrying too much but hoping this is all normal feeling what I am feeling. The unknown
    I received an email from the Vasculitis Foundation of Canada yesterday and they showed me the list of doctor's to see in Vancouver from their web site and I was shocked to see that my Rheumy is on the list. So, I believe I am in good hands with her treatment options.
    I got a standing order for monthly blood work, monthly doctor's appointment's all put in place to see her for the next 6 months etc.
    She said my nerves, ears, eyes, muscle weakness have been effected by GPA. So hoping the methotrexate will help soon and hoping not too many side effects.
    Still having a hard time believing I have this and just can't seem to wrap my head around it. One min it feels real then it doesn't. I guess it just takes time for it to feel real and be able to accept it and move forward. I am doing lot's of reading and learning as much as I can to stay strong and positive like all of you on the site.
    I am so inspired reading all the post on here which is giving me hope.

    Just wanted to say thank to everyone here for your all your support and feedback..so glad I found all of you! My new family

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    Hi Susan,

    Just take a deep breath and just breathe. It's gonna be ok. Most of us who have taken methotrexate have noted some fatigue for 24-48 hours after taking it. It helps to split the dose (half at breakfast and half at supper). The folic acid is to minimize the hair loss that methotrexate can cause.

    The labs and follow ups are pretty standard for new weggies. Just keep communicating if you have any odd symptoms and doing what your doc orders.

    I've been able to manage the disease pretty well by sticking to the affirmations in my signature. I'm sure you'll be fine in due time.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    I went through the same thing, all the unknowns can be so overwhelming. Hoping the medicine works soon. One day at a time. It's a tough disease but us weggies are tough��

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    I think what you are feeling is completely understandable and normal, and familiar to most everyone on this forum. Suddenly being diagnosed with a chronic illness is pretty mind-blowing for sure. Most people tolerate MTX pretty well. I think the idea is that now that the prednisone has tamped down the inflammation, the MTX can induce remission of the disease. Sounds like you are in good hands with someone who is following the standard protocol for treatment, and is monitoring you closely. In addition to minimizing hair thinning, I believe the folic acid is meant to offset toxic effects of the MTX. In my case, my liver enzymes reacted strongly enough that the doc switched me from folic acid to a drug called leucovorin to be taken in conjunction with MTX. Your labs will tell the story of how you are reacting and what adjustments might need to be made. Again, sounds like you are on a good track. Hang in there!

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    Dividing the dose of MTX was helpful to reduce fatigue - good advice

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    Susan, I'm glad you've found a good doctor and are in good hands. Accepting and coming to terms with your illness will take some time. It will be easier to accept when your symptoms are under control and you know the disease is no longer progressing or doing any potentially permanent damage. Take it one day at a time, be easy on yourself and focus on healing. Also, keep in mind that there are may other medication options. If MTX doesn't sit well with you, call your doc sooner and don't wait a month. Many people are fine on it. I couldn't take it because it made me too nauseous to function. I wa ssomewhat surprised your doc didn't start you right away on Rituximab to induce remission (did it come up at all?), but it may be that regardless of the disease affecting your eyes and ears you can only get RTX if the others don't work. Did your doc say how badly or to what extent they have been affected?

    It took me two years of asking and going back to the rheumy, and my nose and throat acting up and inflamed despite the other medication combinations. From everything I've read here and elsewhere, RTX has the most good outcomes with the fewest side effects, so you may want to mention it early on and ask for it if the MtX isn't perfect for you.

    I'm finally starting to get some energy and will get in touch about meeting for coffee soon. Take good care and it is totally normal to be in a bit of shock amd to grieve on and off. It will slowly sink in a little bit at a time. Hope you start feeling better asap!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Susan,
    I am wishing you all the best with your treatments. I'm glad that you are reading and learning all that you can about Wegs. It really helps to have the support of this wonderful group. Please keep us informed on what is going on with you.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Hi Sue,

    I am glad that you started your treatment and that you have a good wg dr. It takes few weeks for mtx to start working. I think that you shouldnt take the folic acid at the same times as the mtx (not sure, I was on it years ago, cant remember).

    It also takes time to adjust to the idea of being sick with WG. I have found this group only after few years of being a lonely weggie. It makes a huge difference to belong to our weggie family here, with friends who understand how I feel, who care and support. I could have never make it without my wg family here ❤❤❤
    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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    For me all the unknowns are the worst thing. I want answers (haven't been given much information yet) just what I am reading on here from the many post and learning so so much. AND just how positive all the weggies are..hugs to all of you!
    exactly one day at a time!

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    I mananged to calm my self down and breathe Thank you Pete

    Quote Originally Posted by Pete View Post
    Hi Susan,

    Just take a deep breath and just breathe. It's gonna be ok. Most of us who have taken methotrexate have noted some fatigue for 24-48 hours after taking it. It helps to split the dose (half at breakfast and half at supper). The folic acid is to minimize the hair loss that methotrexate can cause.

    The labs and follow ups are pretty standard for new weggies. Just keep communicating if you have any odd symptoms and doing what your doc orders.

    I've been able to manage the disease pretty well by sticking to the affirmations in my signature. I'm sure you'll be fine in due time.

  20. Likes Alysia liked this post
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