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Thread: Really scared

  1. #1
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    Default Really scared

    I have just recently diagnosed in April, with Wegner's (GPA). I was just released from the hospital yesterday second time. My disease, I have been told it different that it has attacked by lower legs with horrible ulcers and my sinus's. I have had two rounds of cellulitis. The doctors have started me on azathioprine and high dose prednisone for now. My legs are so painful most nights I sit in a recliner crying. I am just wondering if someone out there has had any experience with these leg ulcers and what to do. I need to work so I can't take and really don't want to take any pain medication. Not working is not an option. Any suggestions would be helpful. I want my life back.

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    Hi,
    I have not had leg ulcers. I have had many other things go wrong. The ulcers sound painful.

    Where are you receiving your treatment? Do you have a Rheumatologist treating you?

    I read up a little on the ulcers and my other question would be about your treatment. Azathiprine is not considered a first line drug for wegene'rs but is a maintenance drug after initial therapy with drugs like Cytoxan, or Rituxan. Since you were just diagnosed in April I'm assuming you have not used one of the big gun immunosuppresants?

    High dose prednisone should be a short term treatment and you should be on a primary therapy immediately. Prednisone does zero to induce remission which should be the goal of your therapy. It is important to get the disease under control as quickly as possible ,in part so you can reduce the prednisone quickly. Prolonged prednisone use has serious side effects too.
    Inadequate treatment will allow problems to persist and leave the door open to other new problems. I would be interested to hear more about what your plan for treatment is and who is in charge of it.

    This forum is a great place. Others will have ideas about your situation.

    It sounds to me like control of the Wegener's should resolve your leg ulcers. I had severe neurological problems for quite a while and the only course of treatment was to treat the wegener's and hope the neurology got better. It did.

    Wegener's granulomatosis presenting as pyoderma gangrenosum. - PubMed - NCBI

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    Hi Rosie's Mom,

    I agree with Dale. You need to be getting treatment from a Vasculitis specialist. You can find a list of them on the Vasculitis Foundation's website. If you don't live near one of them, your local doc can consult with one, generally at no charge to you.

    Azathioprine, as Dale mentioned, is generally a maintenance drug. Cyclophosphamide or rituximab are the primary meds used to induce remission. Prednisone is an anti-inflammatory that should help you feel better. You will probably be on high doses until you get into remission. Once there, you will probably taper off it -- very slowly so your adrenal glands can resume producing cortisol, the body's natural equivalent to prednisone.

    Good luck!! Keep us informed about your experiences.
    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 can't give you any WG advice...as I do not have the condition. I am wondering though about pain medications. Are you taking anything for the pain? Can you try taking something on the days you are not working to see what your reaction is. I have taken tylenol with codeine and another time I have taken hydrocodone. I reacted well to both of them. I was on the hydrocodone for a few weeks....once for gall bladder pain, and the other time for a compressed nerve in my neck. Both conditions were VERY painful, and the hydrocodone helped a lot. I never had any dependency issues with either drug. Also, I did not have any issues with being "out of it", so I was able to work. Have you asked your doctor about pain meds?

    Maybe there are some weggies out there who know if there are any negative indications for taking pain meds. Hope you feel better very soon.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    I agree with the treatment suggested in the link above. I think a dermatologist can give you a topical ointment or something that will help with pain a little while the the appropriate Weg treatment kicks in. It might take a while unfortunately. CTX generally works faster to gain control of Wegs and high dosage of steroids will help help the ulcers quickly. Good luck with treatment.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Hi and welcome to the forum. When I was 17 yo I got "strange disease, atypical arthritis" with ulcers on lower legs. I think it was wg undiagnosed then. Then I was in remmision for more then 20 years. The ulcers remained as scars/ spots which disapeared after I got rtx, about 2 years ago. I think, too, that you need to ask for it. Sending to you prayers. Hang in there. The beginning is the worse.
    And.... my beautiful Phil used to say that you need to have an expert wg doc. Its the key for getting into remision and keeping it.
    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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    Quote Originally Posted by rosies mom View Post
    I have just recently diagnosed in April, with Wegner's (GPA). I was just released from the hospital yesterday second time. My disease, I have been told it different that it has attacked by lower legs with horrible ulcers and my sinus's. I have had two rounds of cellulitis. The doctors have started me on azathioprine and high dose prednisone for now. My legs are so painful most nights I sit in a recliner crying. I am just wondering if someone out there has had any experience with these leg ulcers and what to do. I need to work so I can't take and really don't want to take any pain medication. Not working is not an option. Any suggestions would be helpful. I want my life back.

    just wondering how your treatment for pyoderma is going. I have been suffering with this for more than a year now. It is so painful. Seems to not heal
    lightning crashes
    leigh

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