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Thread: Ocean Air - Sinus and Lung Effects

  1. #11
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    Hi Tom, I see under your post that your treatment plan doesn't include meds at all. Can I ask why? Also, what is "raising your anabolism"?
    Newbie still learning.
    Thanks,
    Gab

  2. #12
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    Quote Originally Posted by Titus3:2 View Post
    I live in GAINESVILLE FLORIDA,5 days,and then Ormond Beach nine days on a rotating basis.My avatar is the view from our condo in Ormond.The ocean air cleared up a lung infection that nothing else would.I walk on the beach a lot,and when it is windy,it hurts my nose ,and throat.So,I take the good with the not so good.Very grateful to live like this.
    Hey Titus,since I am wanting to move....why don't I stay at your Gainesville place for 9 days then go to Ormond for 5 !!!?????
    But seriously Tom, I always feel better when I go to the ocean but you really should not wait getting treatment,this isn't going away and it will only get worse..Take care,glad you had a nice vacation !
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #13
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    Thanks Everyone! Lets just pretend that "no chemo" statement was a test! Can't abandon science with this crew! Ha! Yes! Proud of my weggies!

    Pred is holding for now, despite CNS, lung, eye, sns flaring. In June I got methotrexate poisoning and was prescribed some sort of antidote. Took a long time to heal. Ulcerations from mouth to intestines. It was a bad scene. Dont get it!

    Will see specialist tomorrow and decide on meds. After 17 years I find that when I can help control the disease organically, through lifestyle, then I must try. But remember my disease didnt respond to Cytoxan or Rituxan. They just made me worse.

    I measure quality of life against meds. MTX stopped some excruciating neuritis pain that kept me up. It cleared some lung stuff too. But makes me very, very sick. Couldn't have had time w my kids on mtx. No travel.

    1/4 of way home from Delray Beach I had to stop. I laid on a concrete table unable to go on. Even took more pred (allergic- Adverse Glucocorticoid Reaction). The kids paced nervously? But my neurologist gave me some provigil, so I took that and was able to finish the drive! Shocked.

    Raise Anabolism means to increase the rate at which cells repair. Tapered exercise with light weights and cardio will do it if done regularly with nutrition. It's helpful to the HPA Axis functioning, which is the area reponsible for telling our immune system not to attack "self cells". That misdirected attack, occurring in a small portion of our cells is Wegeners. Most of our cells work fine.

    NIH will have more accurate info. Sorry, I haven't studied that in a while. I just know it helps but doesn’t replace meds.

    Gotta get more ocean soon! Definitely helped!
    Tom

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    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

  4. #14
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    Tom, you can still try Imuran or cellcept or leflunomide. Pred is not enough. Sorry. Good luck at the meeting with the expert. Please update us.
    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.

  5. #15
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    Quote Originally Posted by Alysia View Post
    Tom, you can still try Imuran or cellcept or leflunomide. Pred is not enough. Sorry. Good luck at the meeting with the expert. Please update us.
    Thanks Alysia - I'll ask about Leflunomide - Arava today. I have liver damage so that may why they don't suggest that one. Cellcept was ruled out and Imuran made me worse. When the wegs was in the brain it was very iffy if I'd make it so they gave me a pulse therapy of Solu Medrol 1 gram per day for 3 days. Saved me. But made me incredibly sensitive to meds and psychotic. 2 years of strong chemo was all my body could take. Restoration is needed. Trial and error or medications has been excruciating. The docs look baffled and feel awful when it backfires. They were once liberal with med changes now they get a look of panic when I suggest something different!

    t
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

  6. #16
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    Ask also about Orencia. It is a new biological chemo for RA and my wg dr. Said that it can be good for WG as well.
    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.

  7. #17
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    Tom,I am sorry GPA,and the drugs used to treat it have put you through the mill.It sounds like you have some pretty good docs.Doing the best they can.I am glad you enjoyed your trip to Delray Beach,and got home safely.Let us know how you are doing.Debbie C.maybe you can get me an appointment with your Kickass WG doc,and put me up at your place.Good luck everyone.

  8. #18
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    Hey Titus,that sounds like a scary road trip home...glad you made it back safely. I also can not handle meds well, I also just take 5 mg of pred...so far so good. I go to Cleveland Clinic, all you have to do is make a call. Hope they find something you can take that doesn't make you worse.
    Life isn't about how you survive the storm, but how to dance in the rain !

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