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Type: Posts; User: John S

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  1. Re: new member with question regarding remission

    Atmy sickest, my SED rate was 107. In remission, it is consistently 8. Nasal crusts are rare. Headaches are sporadic but not as devastating. Rituxin baby!
  2. Re: new member with question regarding remission

    What was your SED rate before? Have the nasal crusts slowed down? Are the headaches and fatigue lessened?

    Many of my symptoms slowed significantly after a few treatments. It has taken me about two...
  3. Thread: Strict Dieting

    by John S
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    Re: Strict Dieting

    Nice guitar. National?
  4. Thread: Strict Dieting

    by John S
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    5,633

    Re: Strict Dieting

    Diet? What diet? Gimme that box of donuts dammit!

    After the holiday I need to get back to celery and water
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    Polymyalgia rheumatica

    My sister has been diagnosed as having Polymyalgia rheumatica. Her treatment is Prednisone. She told me that she had pretty much been chair bound for the last two years before she was diagnosed. ...
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    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...
  7. Thread: Strict Dieting

    by John S
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    50
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    5,633

    Re: Strict Dieting

    I've lost all sense of diet and need to re calibrate my tongue. In the meantime, I hopped on the bike and rode 6 1/2 miles today. I haven't gone that far in a couple of years. I'm using a heart rate...
  8. Thread: Strict Dieting

    by John S
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    Re: Strict Dieting

    March was not good to my diet plan and lifestyle. I'm up around 5 pounds right now. Last week I took the extended family to Disney World. We had one of those meal plans and I am not one to waste...
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    Re: Celebrate how far we have come!

    Last week, I went to Disney World. I rented a scooter for myself so that I could keep up with the family. I blew my diet. Now I'm tired but happy.
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    Re: Songs about Wegener's?

    Happy St. Patrick's Day


    I went to the Doctor with headaches bad
    They were the worst that I ever had
    They took me in and ran the tests
    Ultrasound, cat scan, blood and the rest

    They gave me...
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    Re: Songs about Wegener's?

    Whenever someone says "It's nice to see you" I answer "Better seen than viewed".
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    Songs about Wegener's?

    One of my hobbies is playing at folk music events like song circles. Sometimes we get bogged down in talking rather than playing music and singing songs. Rather that explain my disease and treatment,...
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    Re: Confirmed Diagnosis

    I just got back from Cleveland Clinic. Dr. Villa-Forte ordered one in fusion of 1000 units of Rituxin this time. Every previous time has been two treatments of 1000, two weeks apart. She told me that...
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    Re: Rituxan is my new friend

    I think the immediate improvements that you are feeling are actually the other medications they are giving you at the time of infusion. Rituxin takes about a couple of weeks to get to work in my...
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    Re: Rituxan is my new friend

    Welcome to the Rituxin fan club. I'm due for an infusion this coming Tuesday at Cleveland Clinic. Dr. VillaForte told me that I'll only need one infusion this round. Rituxin has turned my life...
  16. Thread: Need help

    by John S
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    Re: Need help

    Take care of yourself first. If someone doesn't deserve you, don't try to rely on them. If you need help, ask your friends rather than stay in a relationship in hopes that the other will be nice.
  17. Thread: Strict Dieting

    by John S
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    Re: Strict Dieting

    You'll be on the road to recovery soon. Getting off of Prednisone really helped kick start the weight loss.
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    Re: Cold, flu or flare

    She is the best! An angel! You will love her.

    I usually stay at the Intercontinental Suites. Be sure to ask for the Cleveland Clinic patient rate if you stay there. They have a shuttle bus that...
  19. Thread: Strict Dieting

    by John S
    Replies
    50
    Views
    5,633

    Re: Strict Dieting

    I had a flu, bronchitis thing this past week. Feeling much better now and hope to return to the gym today. While, ill, I lost my appetite, I am now down 50 pounds. It's a hell of a way to lose weight...
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    Re: Cold, flu or flare

    ‘Contact Dr. VillaForte at. The Cleveland Clinic
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    Re: Cold, flu or flare

    Update, no giant crust today. Feeling a bit more energy. The throat is not quite as sore. Think I'm coming out of it.
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    Re: Cold, flu or flare

    I appreciate your input. I saw the rheumatologist at Loyola in Chicago on the same day as my recent blood draw. I'll see my specialist in Cleveland Clinic in March. If my current symptoms continue,...
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    Re: Cold, flu or flare

    On Jan 23 I had a blood draw and my SED rate was 11. I really think that I am experiencing a flu rather than a flare. I do have some Prednisone handy so I took 5 mg this morning, despite that fact...
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    Re: Cold, flu or flare

    I went to an Urgent Care doctor this morning. He said that my lungs didn't sound like bronchitis, when he looked into my sinus he could see it was inflamed. He recommended Mucinex with Sudafed and...
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    Cold, flu or flare

    The last 3-4 days I have been feeling terrible. Sore throat, congested sinuses, run down, loss of appetite, For the last two days I've brought up those big old nasal crusts that remind me of...
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