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Thread: shankxonline - My path to identify GPA and overcome it

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by sshiveley View Post
    I take 1 step forward 2 steps back. When I had written that I was down to 7.5 mg of Prednisone, yet another flare up, I was weaning slower this time. Rt eye is beginning to protrude again, Double vision peripherally isn't going to get any better. Rheum bumped me up to 20 mg Prednisone and possibly getting Retuximab sooner. Sherry
    my eyes have been fine since I went on retuxin

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    Default Re: shankxonline - My path to identify GPA and overcome it

    11/6 - Starting with Methotrexate (12.5/week) along with Prednisone currently at 40mg. Rheu is optimistic that I will be able to taper the Prednisone dosage. Anyone else on similar dosage? How was your Methotrexate introduction experience? What should I watch out for?

    Eye symptoms remain (redness, pressure) - but other reports look normal (touch-wood!)

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    Default Re: shankxonline - My path to identify GPA and overcome it

    I'm on the same dose of MTX as you are. I was started on 10mg/wk about 7 years ago but that is a really low dose, and I flared, so it was raised to 15mg, which is pretty common, though some use more, possibly depending on body weight. I was probably on around 20-30mg prednisone and am now down to 5mg. This is a level that many stay at, due to the difficulty of tapering further, when we have been on pred for several years. It seems these days many docs are getting people off of it before that happens. At first, with MTX, I felt slightly nauseated and just kind of yucky, but I got used to it and now feel pretty much nothing. It helps to split the dose between morning and evening. Some will have worse side effects than others, and I hope you aren't one of them. Good luck!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 01-09-2020 at 01:17 PM.
    Anne, dx'ed April 2011

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    Default Re: shankxonline - My path to identify GPA and overcome it

    I don't post a lot on here, as I too am new to this ugly disease, there are so many that have so much more knowledge about this than I do, so I will continue to read their thoughts and advice. There are days that I have been ready to walk into my boss's office and say that I can not do this anymore, (I work in a level 3 trauma ER) I am constantly exposed to every germ you could and could not imagine, but I have to pay the bills, funny thing, they just keep coming every month haahaa. Some days I feel good, others not so much, decreasing my prednisone takes its toll, I can tell every time I am decreasing that I know I will have to start at a higher dose and then wean again, only to go to a higher dose again, the cycle keeps repeating, spilling blood in my urine, constant runny nose, cough. Seems all I do is complain, but being a part of this forum, I know you all understand how it is. I strive for a positive attitude for attitude is everything. Best of luck to you Shankonline and all of the others struggling.

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by sshiveley View Post
    I strive for a positive attitude for attitude is everything. Best of luck to you Shankonline and all of the others struggling.
    Indeed - positive attitude is everything, sshiveley! Seems like the only thing we can have control over!
    Good luck on your journey as well! Keep sharing!

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Update 12/20/19: Follow ups on blood tests were OK. Reports are getting back to normalcy - ESR and CPR numbers included. Still on Prednisone (30mg) and Methotrexate (20mg/week). Most symptoms are normal but my right eye pain and pressure is pretty high. Opthalmologists have suggested onset of scleritis and treating with local eye drops which are not helping much frankly. Right eye is RED most times, gets worst in night and have started getting some headache and sinus like symptoms on the right side. All in all - the day starts feeling not very fresh and not wanting to wake up at all. But then have to keep positive and fight it!

    Any one with scleritis from GPA diagnosis here? Would love to connect.

    @all - Happy holidays to everyone in this family! ..

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by shankxonline View Post
    Update 12/20/19: Follow ups on blood tests were OK. Reports are getting back to normalcy - ESR and CPR numbers included. Still on Prednisone (30mg) and Methotrexate (20mg/week). Most symptoms are normal but my right eye pain and pressure is pretty high. Opthalmologists have suggested onset of scleritis and treating with local eye drops which are not helping much frankly. Right eye is RED most times, gets worst in night and have started getting some headache and sinus like symptoms on the right side. All in all - the day starts feeling not very fresh and not wanting to wake up at all. But then have to keep positive and fight it!

    Any one with scleritis from GPA diagnosis here? Would love to connect.

    @all - Happy holidays to everyone in this family! ..
    what is your sed rate?

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by John S View Post
    what is your sed rate?
    Its at 20 right now. Was 100+ on first diagnosis.

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by shankxonline View Post
    Update 12/20/19: Follow ups on blood tests were OK. Reports are getting back to normalcy - ESR and CPR numbers included. Still on Prednisone (30mg) and Methotrexate (20mg/week). Most symptoms are normal but my right eye pain and pressure is pretty high. Opthalmologists have suggested onset of scleritis and treating with local eye drops which are not helping much frankly. Right eye is RED most times, gets worst in night and have started getting some headache and sinus like symptoms on the right side. All in all - the day starts feeling not very fresh and not wanting to wake up at all. But then have to keep positive and fight it!

    Any one with scleritis from GPA diagnosis here? Would love to connect.

    @all - Happy holidays to everyone in this family! ..
    Hi,
    On 2015 I had a wg flare in my eyes. I caught it "on time" so it was only episcleritis. (Lighter then scleritis).
    Sounds like your wg is active and that you need a stronger med. Mtx is not strong enough to treat a flare. It is only for maintenance. Also in my case mtx didn't work, only rtx.
    Please talk with your wg dr. And ask for a more serious treatment asap. Sending you prayers.
    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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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by Alysia View Post
    Hi,
    On 2015 I had a wg flare in my eyes. I caught it "on time" so it was only episcleritis. (Lighter then scleritis).
    Sounds like your wg is active and that you need a stronger med. Mtx is not strong enough to treat a flare. It is only for maintenance. Also in my case mtx didn't work, only rtx.
    Please talk with your wg dr. And ask for a more serious treatment asap. Sending you prayers.
    Thank you. @Alysia. Yes, I have reached out to my Rheu and will have to switch up the treatment to Rituxan. Prednisone dosage increase helps - but I am not happy with the amount of Prednisone I am taking for such a long time. Hoping things calm down once I move to Rtx. Weird that its only the right eye which seemed to be attacked - but then Wegs is weird I have realized.

    I am also having follow ups with Opthal and so far the eye pain and inflammation seems to be on the frontal side of the eye. Hoping to keep it restricted there and not cause more trouble. Fingers crossed.

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