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Thread: My mom's diagnosed with Wegener's Granulomatosis

  1. #1
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    Question My mom's diagnosed with Wegener's Granulomatosis

    Hi everyone, hope all of you are doing fine!.

    First at all, I want to thank you for any help you can give me. My mom was diagnosed with Wegener's Granulomatis (WG) 2 months ago, we are located in Costa Rica.

    I am not very familiar with drugs she was prescribed, but I would like to know the best she can use, you know, I am interested for drugs with minor side effects on her body. She is 58 years old.

    In addition, I would ask to you about an aching she was in her legs. She suffers a lot with that pain every day and the doctors only recommend acetaminophen but she takes 3 of them without success. She cannot be seated or stand-up for a long time.

    Have you know someone with WG and this kind of pain on legs? What is the best medication she can take.

    I am really new on this kind of ailment, I know my question is an un-detailed question, [without details of what drug she is taking or specific diagnostics of her sickness] please let me know whether you need additional info to help me.

    Thanks a lot for your help
    Jason S.

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    Welcome to you and your mom Jason...WG is a difficult but doable disease. WG is a vascular disease in which the Auto Immune system no longer directs it's help at needed areas as it has been fooled by the WG attacking the vascular system, in many different areas, thus the AI thinks it is attacking a bacteria...it's not as the WG is on the outside of the blood system, so things like organs and the vascular system take the hit from the AI...not a good thing! As for your mom's aching, if she is not on the proper drugs and doses, she will be achy as that is a fairly common symptom of WG: roaming pains. Your docs need to know how to use drugs like prednisone (helps cut down flaring symptoms and inflammations), methotrexate (kind of the beginner's drug for WG, low damage from WG), there are others available and others on here will chime in with their names I'm sure. Rituxin (Rituximab) is the heavy duty drug, but is the most effective. Side effects seem to range the spectrum for most WG patients...all the drugs do something other than what we'd like! Prednisone is famous for the moonface, humped back, and eating waaaay too much chocolate! The drugs given to control the AI have their own sets of side effects but none, for most WG patients, are extremely dangerous if used on a given protocol. Keep asking questions, both of us and your mom's docs...they need to know there are specific ways and drugs to treat this disease...no guessing nor reading out of books...your mom needs specific help. Best to you both.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome, Jason! It would help to know what meds your mom is on and what doses, also whether her docs have experience with WG or are able to consult with some who do. The Vasculitis Foundation is a place to start: VF Medical Consultants

    There aren't many choices in the drugs we take and they all have harmful effects, but are better than letting Wegener's take its course untreated, which would be disastrous for you and your mom. In spite of taking these meds, most of us have been able to get through their negative effects and come out in a lot better shape than before. Some have reached a medicated remission, where they still have to use at least small amounts of meds to maintain that. A few lucky ones have reached a non-medicated remission and no longer have to use the meds, although there is always a chance of a relapse, or "flare".

    Almost everyone uses the anti-inflammatory, prednisone, along with a standard immunosuppressant that has been found to be effective in treating the disease. Some of these are chemotherapy drugs given in much smaller doses than cancer patients get. The most common immunosuppressants are methotrexate (MTX) for the milder cases, as Don says, cyclophosphamide (CTX) for more severe cases, and rituximab (RTX), also for more severe cases. Others will give their points of view on these and why some may be preferable over others. Many of us also take Bactrim three times a week for prevention of a type of pneumonia that immunosuppressed people are more susceptible to. There are other meds, too, but those are the most common and the most tried-and-true.
    Anne, dx'ed April 2011

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    Hi Jason and welcome.

    Thankyou for coming on here for your mum. I hope she starts to feel well enough soon and she can also come and join us.

    The guys above have said all. Please remember that you are not along and we are all here to help you, any time of the day, with any questions that you have.

    Remember that no question is too silly or to long or short. Your question may just be the one thing that someone else was wondering as well, but was too afraid to ask........so ask away
    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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    Hi Jason, cant say much more than what has been said up above, read all the threads here, the more you know, the easy it will be to understand what your mother is going through, and you will be able to help her a lot more, and just remember that no one person here has exactly the same symptoms as someone else, so ask you doctor lots of questions, write them down before you go.

    All the best
    Regards Woz....

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    Hi Jason,
    Welcome to "the family"! I, too, was recently diagnosed and the people here have helped me immensely. Just ask, ask, ask. If we don't know the answers we'll help you find them out.
    Deb H

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    Serious Wegs means Cytoxan or Rituxan, Milder cases or for maintenance means Azathioprine, Methotrexate, or Cellcept. Prednisone or some steroid is almost also given in various dosages depending upon severity and body's response to treatment with preceding drugs.

    All have potential side effects and risks but are far safer than trying to get along with no drugs or using the drugs at too low of dosage to be effective. Once in a drug induced remission many people try taper off some or all of the drugs and about one in five can do so successfully and remain in remission for more than three years without any drugs.

    Most people will have a flare or return of symptoms within two years of stopping their maintenance meds and have to go back on some treatment meds again. The goal is to generally find the lowest dosage of meds that allow a person to get by with minimal residual symptoms.
    Last edited by drz; 04-05-2014 at 03:37 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    just to echo all of the above, and to welcome you Jason please invite your mom to read and write 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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    Welcome to you and your mom Jason. I echo all that has already been said, but wanted to say hi. Dig into the archives as they are a valuable source of information. Everyone has a different story, but you will see some common threads in many of them. Good luck to you both and feel free to ask any questions you need too.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Jason, what Cindy says is so true, Wegs is a complicated disease that shows itself in many ways, and no two cases are alike. If you read about a lot of different people's cases, you will no doubt find some that are similar to your mom's. You will also find encouragement that your mom can get better and back to a fairly normal life. And yes on the questions, keep asking them.
    Anne, dx'ed April 2011

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