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  1. #1
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    Default last mtx

    Thursday, 4 days from now, will be my last mtx pill. I"ve been tapering for about 6 weeks. I started at 8 pills and immediately dropped to 6, then 5, 4, 3, 2, 1. Of course, the folic acid has been dropped, too. Also, I'm off pred. We'll see what happens.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    I would guess that you're close to a good place...
    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 would guess that you're close to a good place...
    From a wegs point of view, probably... From a general health point of view, not so much. Things are still very difficult. Mayo said fibromyalgia, but I have serious doubts about that. I think fibromyalgia is the "goto" disease when they absolutely have no clue.

    I was given some ropinirole for restless leg syndrome a couple days ago. Great stuff! I haven't been able to sleep that well in months.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Vdub, glad you are getting at least some relief from some of your symptoms, but it sounds like you still have a lot of discomfort and unresolved problems. I personally think you are correct re fibromyalgia; I think it is certainly a "real" thing, but on the other hand it also sort of a default diagnosis that wraps in a lot of unexplained symptoms. I will be interested to hear how you react to being off of pred and MTX.

    Best wishes...

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    Vdub,
    I'm wishing you all the best for feeling a lot better and get more sleep. I do think that is the by default, diagnosis they give when they can't figure one out. I have been told that most of my crap now, is from the treatments. Keep us informed on how you are doing. Please take care of yourself.
    Last edited by Jaha; 05-09-2017 at 10:49 AM.
    Jana


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    It does not matter how slowly you go, as long as you do not stop!


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    Quote Originally Posted by vdub View Post
    Thursday, 4 days from now, will be my last mtx pill. I"ve been tapering for about 6 weeks. I started at 8 pills and immediately dropped to 6, then 5, 4, 3, 2, 1. Of course, the folic acid has been dropped, too. Also, I'm off pred. We'll see what happens.
    Wooohoooooo!!!!!
    May it last like this for decades to come.

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    Quote Originally Posted by vdub View Post
    Thursday, 4 days from now, will be my last mtx pill. I"ve been tapering for about 6 weeks. I started at 8 pills and immediately dropped to 6, then 5, 4, 3, 2, 1. Of course, the folic acid has been dropped, too. Also, I'm off pred. We'll see what happens.
    That's great, vdub. I had been wondering if MTX needed to be tapered, or if you could just stop, from something I'd read on here to that effect. But my new rheumy says yes, we taper. I haven't started yet. It sounds much less difficult than tapering pred, which I'm currently doing on my own below 10mg., and it's going OK so far. Sorry about your other issues, but congrats on being in remission from Wegs!

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

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    Good Luck Mate, I know things have been less than perfect for some time now but you always impress me with your attitude and spirit.

    I trust that this current situation signals an upturn in your status and perhaps we will become "neighbours" in the not too distant future!!

    P.S Visited Earls Colne airfield in Essex on Monday where they used to fly Flying Fortress bombers in WW2.

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    I stopped MTX for 3 weeks when I had my sinus surgery. No taper and I felt great.

    I hope you are feeling a little better now that you are off the stuff vdub. Hopefully it hasn't started something new, and you are now flying around in the MG and having a ball
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    And, yet another new (old) development. My local docs have poo-pooed the mayo finding and believe they simply didn't have enough of the complex 7-yr details. So the majority opinion is that, yes, I do have wegs, but it is in remission. My PCP said regardless of not having a positive ANCA, the other evidence simply can't be ignored. So, hooray for remission and double-hooray for no more mtx. My last single, insignificant mtx pill was taken this morning. It's been 7 years of mtx almost to the day -- I started the regimen in Apr2010.

    As for the fibromyalgia.... doc says "bunk". I have to agree with that. I had been trained on how to lessen the pain from fibromyalgia and I've done none of that stuff, yet, the pain is generally subsiding. My only remaining pain is in my legs which is being chaulked up to restless leg syndrome. The symptoms and the way it responds to the proper drugs are spot on.

    Everyone, my docs and me, agree that my paralyzed diaphragm was simply the luck of the draw and nothing to do with any other ailment I might have. It just happened. Really a bummer, too! You'd be surprised how nice it is to have to lungs when you want to do some heavy lifting or hard work, especially when the heavy lifting is at 4,700' like my cabin is.

    I believe a big part of my problem was simply being over-medicated over the course of 7 years. I'm now cutting the drugs (especially pain drugs) back by about a third. My current count is 15 different drugs/day, which is down from a high of 21.

    I believe I am getting things in well enough order such that we will be able to go RV'ing this fall. The goal, of course, is to be able to live life the way we want regardless of this crazy disease that afflicts each of us. And, yes Geoff, that includes coming back to England for a long stay.
    Last edited by vdub; 05-13-2017 at 02:09 AM.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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