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Thread: Your personal experiences in treatment?

  1. #11
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    Default Re: Your personal experiences in treatment?

    Prior to diagnosis, I was unable to work. Luckily, I was qualified for Medicare and Social Security. I was going in and out of the hospital every other week as the Physicians treated symptoms but not the disease. I was convinced that I would not survive long and re-wrote my will, arranged for my wife to get a new, safer car and made a deal for my business to be taken over by a phenomenal employee.
    Once I had a confirmed diagnosis, I responded quickly to Rituxin treatment. It's taken two years of treatments to get me feeling well enough to help out part time at my old company.

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  3. #12
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    Default Re: Your personal experiences in treatment?

    Ah. I just feel a bit in denial about my diagnosis - I am only 23 and surely "I can't be sick like that" ya know. I feel like I've stuff to do, vital time to try and break into industry and get my grunt work done now and all that. I just am finding it really hard to accept things might have to be different?

    Quote Originally Posted by gilders View Post
    Therefore your recovery will depend on MANY things - your age/health before Wegener's became active, how long it took for diagnosis and the amount of damage already caused, which organs are effected, a certain amount of luck (have you managed to avoid severe infections whilst being immuno-suppressed?), how physical (or stressful) is your job, etc.

    I have a lot of sympathy for you. I had missed out on some good careers due to my health (we often have to fill in health questionnaires in the UK when getting to the final stages of job interviews).

    There is also benefits for people who can't work (my current situation), but during the period where you are trying your hardest to work, but can only manage a few hours, there's no help. The system encourages people to give up work and exaggerate their illness as they can't afford to only work part-time and benefit money often pays more than part-time work. I was 17 at the time so although money was tight whilst working part-time, I still lived with my parents, so could still survive.
    I am UK based, and been getting to first and second stage interviews and not gotten to filling out a health form yet. Did not realise that might screw me over.

    I currently get PIP for connective tissue disease but am looking to work in design (within publishing ideally).


    Quote Originally Posted by John S View Post
    Prior to diagnosis, I was unable to work. Luckily, I was qualified for Medicare and Social Security. I was going in and out of the hospital every other week as the Physicians treated symptoms but not the disease. I was convinced that I would not survive long and re-wrote my will, arranged for my wife to get a new, safer car and made a deal for my business to be taken over by a phenomenal employee.
    Once I had a confirmed diagnosis, I responded quickly to Rituxin treatment. It's taken two years of treatments to get me feeling well enough to help out part time at my old company.
    I am really glad the Rituxin worked so quickly and effectively, from will writing to slowly back into normal life again x

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  5. #13
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    Default Re: Your personal experiences in treatment?

    i had symptoms of GPA (Wegs) for two or three years before I finally got a diagnosis and appropriate treatment. By then my health was so poor I felt unable to work so chose full retirement. Shortly after becoming retired, the Wegs hit me hard so I spent most the year in hospitals and nursing home working on recovery and learning to live with the serious damages caused by Wegs. From date of diagnosis to a drug-induced remission from active Wegs was over a year but it took longer to regain enough energy and health to resume a limited level of independent function in a light assisted living facility. If I was not retired I would be be considered disabled for regular work.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Your personal experiences in treatment?

    One thing to be aware during early treatment of GPA is the effect high dosages of Prednisone can have on your feelings. I often referred to these periods of feeling a lot of energy which gave rise to delusions of adequacy. It is easy to forget your limited energy when high on Pred. Then I would try over do things and usually crash and burn feeling totally exhausted and wore out from doing too much. Learning to husband your energy is crucial part of learning to manage GPA. The "spoon theory" is a great analogy to help you understand this if you are not familiar with it. I think a search for it on here would bring it up.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Your personal experiences in treatment?

    Quote Originally Posted by drz View Post
    One thing to be aware during early treatment of GPA is the effect high dosages of Prednisone can have on your feelings. I often referred to these periods of feeling a lot of energy which gave rise to delusions of adequacy. It is easy to forget your limited energy when high on Pred. Then I would try over do things and usually crash and burn feeling totally exhausted and wore out from doing too much. Learning to husband your energy is crucial part of learning to manage GPA. The "spoon theory" is a great analogy to help you understand this if you are not familiar with it. I think a search for it on here would bring it up.
    I recently got severe depression from birth control, cerazette, and I am worried I might be prone to the mood effects of drugs - such as what I have heard from Prednisone.
    So a bit concerned on that front but I will tell my friends to keep an eye out for things like that in me as they can see it better.

    I have chronic illness anyway, and am quite familiar with dreaded spoon depletion ha. I am bad for over working myself as well, as it is right now - and I think I need to change my approach to things.

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    Default Re: Your personal experiences in treatment?

    Cytoxan, Rituxan, Rituxan and the usual prednisone thing. Never missed a day of work. I was nearly deaf before being dignosed. I communicated with pen and paper. Straight from infusion lab to work across the hall. Three sick days in thirty years with the same company. I've been a bike rider all my adult life. That has made all the difference. I bike through the winters in Florida these days. I am convinced serious exercise has saved my life. My two cents worth.
    Last edited by ballma02; 05-11-2019 at 05:53 AM.
    . . . we proceed on - Lewis and Clark journals

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    Default Re: Your personal experiences in treatment?

    Hi,
    I am new and recently joined to learn as much as possible since my 15 year old daughter was diagnosed on March 6, 2019. Quite frankly it seems as if I need the help to support her as we go through this long journey.
    Emma started with "sinus infections" , frequent bloody noses and now bilateral pulmonary nodules which went on for 2-3 months until her diagnosis. She Is on MTX weekly, prednisone taper and she received 2 Rituximab infusions. She seems to be doing OK but unsure of a few things and wanted some clarity if possible.
    The steroid taper, I notice after the decrease she experiences a couple nose bleeds, headache and fatigue joint discomfort which starts 4-5 days after prednisone is decreased and typically lasts 2-3 days. These were part of her presenting symptoms. Is this normal? Also, this weekend it seems like she has a head cold-sore throat and cough. I will keep watching her if it worsens but am nervous. How does one tell if it's a flare or steroid taper? Thank you for any insight, Eileen

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    Default Re: Your personal experiences in treatment?

    @Eileen ann

    Sorry to learn your daughter is afflicted with this disease. A couple questions: What was her original dose of prednisone? How much is she taking now? How much MTX is she taking?

    Some thoughts: The prednisone taper may be too rapid. I had roaming joint pains when I first tried to taper off. If her rituximab infusions were toward the end of March, the drug may not be fully effective yet. Sometimes it takes several weeks to a couple months to get going.

    How much experience treating GPA/Wegener's does the doctor treating your daughter have? My rule of thumb is that if s/he is only treating a few patients, a more experienced doc is needed. You can go to the Vasculitis Foundation's website to find a vasculitis specialist that is (hopefully) reasonably close to you. I live near Columbus, Ohio, but travel to Cleveland Clinic to see my vasculitis doc. That's a 2:30 drive one-way for me.

    The Vasculitis Foundation also has additional resources that you may find useful that more fully describe symptoms, treatments, and side effects. Also, there are many people on this forum who are more than willing to share their knowledge and experiences. Feel free to ask.

    Last note for now: Good news: Your daughter, with proper care, can return to a fairly normal lifestyle. I'm 72 and have been dealing with GPA since early 2011. It was pretty rough going for the first 2-3 months after disease onset and then again when I had my first major flare about a year later. I tapered off prednisone last June. I get an annual dose of 1 gram of rituximab, and I take bactrim 3X weekly. I lead a lifestyle that's very similar to what I had before GPA/Wegener's set in.
    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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  16. #19
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    Default Re: Your personal experiences in treatment?

    Slower tapers down on Pred have less return of residual GPA symptoms. I went down by 1/4 mg every week or two and had minimal difficulty with return of GPA symptoms and they usually went away in a week or two so then I waited a few days before doing next reduction. Many people can do it faster and choose to toughen out the GPA symptoms til they go away. These symptoms from a taper down should get better in a few days. If not, then one might have reached the lowest level of pred one needs to keep GPA under control. Some times one has to try the taper down more than once to be successful. Some people can get off pred altogether. Other people might need 5 or 10 mg maintenance to control the GPA. Being med free is very nice but it does increase the risk of serious flare so many people stay on a maintenance dosage for a long time. The choice of side effects from maintenance drugs versus risk of serious flare is very individual choice and varies greatly just like the symptoms of GPA.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Your personal experiences in treatment?

    Hi Pete,
    You give me hope....Thank you!
    Emma's initial dose of Prednisone started on March 6th was 20 mg twice a day and she is now on 22.5 mg daily.
    She takes 25 mg of MTX weekly.
    Her Rituxin infusions were March 19th and April 3, 2019.
    I think you are right about the steroid taper, it was too fast. We have slowed down and decrease by 2.5 mg every 2 weeks and she seems to tolerate this.
    The physician she sees is in NYC but we are considering switching to someone off the Vasculitis website. We live in CT.
    I have read about the bactrim and that some take it. Is that used to decrease the potential of flares or decrease risk of PCP?
    Can anyone tell me what labs are necessary and how frequently they should be drawn?
    Thank you,
    Eileen

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