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  1. Thread: Foot pain (arch)

    by JanW
    Replies
    9
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    1,188

    I like others here had intense foot pain that...

    I like others here had intense foot pain that eventually lead to diagnosis. Once treated it completely went away, except that I am left with residual weakness in my left ankle due to a limp I...
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    Ah, I'll disagree with Gwen at bit here! I have...

    Ah, I'll disagree with Gwen at bit here! I have them every three months (now going to four) due to SS (subglottal stenosis -- it only reached the first two rings of my trachea). The last time was...
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    Happy birthday, sangye!!!!

    Happy birthday, sangye!!!!
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    Mama --I was at about 2 mm -- normal is around 9...

    Mama --I was at about 2 mm -- normal is around 9 mm -- when I was diagnosed. I had surgery and am now at a 6.5 mm. Problem with SS is that it doesn't get better, only worse, and it can get worse...
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    2,985

    I am sorry that you haven't been feeling well for...

    I am sorry that you haven't been feeling well for so long Honestly being remission after a year is not so unusual and I know that many here have achieved this. Most people will gain remission at...
  6. Replies
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    3,912

    I had my saddle nose surgery on February 1 and...

    I had my saddle nose surgery on February 1 and all went well. I was reducing mtx before that for about six months, and had probably been in medically induced remission for about a solid year. My...
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    I've been on mtx (no pred) since 3/10 and was in...

    I've been on mtx (no pred) since 3/10 and was in drug-induced remission since perhaps the end of that year. I am down to 5 mg and even my rheumy who I saw yesterday says that I'm at a "candy dish...
  8. Replies
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    2,985

    I only have experience with mtx which put me into...

    I only have experience with mtx which put me into remission within a year of diagnosis.

    I agree with the others that it sounds like active WG. I do not think that my rheumy ever uses Humira for...
  9. Replies
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    3,042

    I took it back when they thought I had asthma and...

    I took it back when they thought I had asthma and not WG. It was fine. Side effects wise it gave me osteoperosis, but considering that a lot of weggies are on/have been on pred, that's a risk you...
  10. So sorry to hear this news. My prayers are with...

    So sorry to hear this news. My prayers are with Al's wife and family.
  11. Replies
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    2,120

    Sangye, I'm sorry to hear your news. You have...

    Sangye, I'm sorry to hear your news. You have really had a rough ride of it. I know that saying to "hang in there" is just empty words, but really, just try to stay in the moment as I know you always...
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    1,793

    44 at diagnosis. Symptoms at least 18 months...

    44 at diagnosis. Symptoms at least 18 months before.
  13. Replies
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    1,504

    Same day or next day for me if I have a problem.

    Same day or next day for me if I have a problem.
  14. Thread: What is crusting?

    by JanW
    Replies
    51
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    15,886

    For me, crusting was the first thing that went...

    For me, crusting was the first thing that went away after successful treatment. Even before I entered a true remission (as in bloods looking good), my crusting completely cleared up (this was...
  15. Thread: What is crusting?

    by JanW
    Replies
    51
    Views
    15,886

    I had some crusting before diagnosis, none at all...

    I had some crusting before diagnosis, none at all after I was successfully treated, and I also had a saddle nose (now repaired). I don't think that the two were connected. The saddling is caused by...
  16. Thread: saddle nose

    by JanW
    Replies
    10
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    1,150

    Hmmm....I know you had some very serious damage...

    Hmmm....I know you had some very serious damage Mama, and you had your surgery right around the same time as I had mine. Hope all is okay.
  17. Replies
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    Never had watering eyes and been on mtx since...

    Never had watering eyes and been on mtx since March 2010. Current does 5 mg/weekly.
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    3,474

    I definitely had taste perversion -- things...

    I definitely had taste perversion -- things didn't taste the way they were supposed to -- which immediately cleared within maybe six weeks of being treated.
  19. I can answer the question about PR3 - below 20 is...

    I can answer the question about PR3 - below 20 is considered normal range at the lab I go to. I went from a high of close to 100 down to 38 now and am completely asymtomatic.
  20. Replies
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    Glad you're okay, Mama. Yep, the one at the...

    Glad you're okay, Mama.

    Yep, the one at the base of the nose hurts. Mine took that one out first. Glad the ones in my chest were dissolvable though (as were all the ones inside the nose). Would...
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    Yes, Spiera is at the Hospital for Special...

    Yes, Spiera is at the Hospital for Special Surgery and a close colleague of my doc there Arthur Yee. I have mainly windpipe and nose involvement - surgery corrected the saddle nose last month and...
  22. Replies
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    1,809

    I think docs are really getting away from the...

    I think docs are really getting away from the limited label because it doesn't relate quite to the severity of the diease -- it only means no kidney involvement YET. My wg is limited to my throat and...
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    1,269

    I would love if the question about life time...

    I would love if the question about life time maintenance drugs vs. attempts to go drug free were asked again. I think both Merkel and Seo agree on this one -- and I'm sure that the question will...
  24. Thread: Heel Pain

    by JanW
    Replies
    19
    Views
    1,906

    I also had WG affecting my feet ankles. My ankle...

    I also had WG affecting my feet ankles. My ankle never came back 100% but the pain disappeared as soon as I went into treatment at the right dosage of mtx.
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    My doc as well. We are going to give it a try...

    My doc as well. We are going to give it a try once I'm six months post nose surgery. I think docs who are knowledgeable are coming around to this way of thinking with patients that they believe...
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