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Thread: I'm having a little flare.

  1. #21
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    For me they use the same ones listed above plus the ANCA PR3 scores. My WBC goes up usually with an infection and so do the inflammation markers like sed (ESR) and CRP rate. When I am in a drug remission all of these for me can be be in the normal range. The last one is usually the ESR or sed rate since that is slower to change and is often above the normal limit. I also have diabetes which increases the ESR reading too. The CRP seems the most sensitive and first to change for me and the WBC if I have an infection. For me flares and infections generally seem to occur together. Then during a flare there is the increase in symptoms of fatigue, nasal bleeding, and joint pain and sometimes something else Wegs related. Infections can and do occur with increased inflammation readings without flares but that is not typical for me so far.

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    Having just experienced (still...) my first flare, I am wishing you a quick return to normal!

  3. #23
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    Quote Originally Posted by annekat View Post
    Thanks, Michelle. Yep, I don't really get to start the new dose until next week because I just took the old dose and am out of pills and won't get new ones in time to add to the old dose. All this dosage stuff and working with the pharmacy on it can be a PITA. But yes, I will definitely enjoy the extra sleep in the meantime!

    As an aside, since you remember Al well, I have made friends with a good friend and professional associate of his and she is taking me out to breakfast on Sunday morning. If I can get up in time to drag my butt into town! She talked to Al a lot about his WG and is very interested in all aspects of the subject. We have other things to talk about, too, I'm sure, and I'm looking forward to it.

    I like your new quote from Will Rogers about the family parrot. I think Sangye will like that one, too, as she has a talking pet cockatiel who is a little character.
    My MTX went from 10 to 15 and then to 20 which I have been at for about a year and a half.
    Just remember that when you have to cut your 10mg tablet in half to get a 5, that you have to handle the tablet.
    As this is a chemo tablet, you need to wash your hands before touching any other part of your body.....especially your eyes.

    How lovely to be able to meet up with someone who knew Al and what he went through.

    Yes, this quote was on my desk calendar the other day, and it made me laugh so loud that everyone was looking at me at work
    Last edited by mishb; 02-03-2013 at 11:01 AM.
    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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    Thanks, Michelle, and ArlaMo. Good to know that about the MTX pills.... actually, my pills are 2.5mg, tiny little things, so that means I can create almost any dose without having to split them. So I am going from 4 pills a week to 6 pills a week. It's still important to remember about washing one's hands, so thanks for the reminder.

    I'd like to get a second opinion about my MTX dosage, since my doc is pretty inexperienced with WG, and I feel like a guinea pig! Who knows, maybe I wouldn't be having the flare if I was on the right dose to begin with. I have an idea of where to get this second opinion, but it won't be easy, and if I start feeling significantly better and get over the flare, well, we'll see if I follow through. But then he will probably want me to lower the dose again.....more guinea pig feelings!.... he is all about me being on "as little drugs as possible," probably to a fault. WG is not something to mess around with or experiment on.
    Anne, dx'ed April 2011

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    I was advised that increases in the ESR and CRP indicated inflammatory but can also mean you have an infection. WBC usually alters 10 -14 days after chemo and they have to monitor this. I have to have bloods and urine sample, 12 days after the chemo so they can monitor everything. I've come to the conclusion that remission in any form is a miracle with this illness. Wishing you all little miracles and the big one.
    Cheers Col23

  6. #26
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    Quote Originally Posted by annekat View Post
    Hmm. Sounds like you know more than I about these markers. But I do know that my levels have been consistently within acceptable ranges for months until just recently, when they have spiked, along with an increase in typical WG flare symptoms. How high the spike was, I do not know, but after reading the results, my doc ended up raising my MTX more than he thought he was going to. I don't know what all was tested and only talked briefly to the nurse on the phone. It's up to me to make the effort to learn more.

    It does seem odd that the CTX is not improving things in your lungs, though they aren't getting worse, and the markers going up on top of that would be alarming. I hope the docs can figure it out and explain it to you adequately.....and most of all, I hope some improvement occurs soon, the markers go down, and/or they figure out another way to treat you that works better. I guess I've heard that CTX doesn't work for everyone.
    Hi Anne -- are you a candidate for Rituxan??

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

  7. #27
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    Well, you get more advice than I ever do, but I'm sure my doc realizes that an infection would also cause a spike in these numbers. I think given the way I feel, recognizing the increase in WG symptoms, I am in a flare and I'm glad that my doc is willing to go along with and acknowledge that, this time.
    Anne, dx'ed April 2011

  8. #28
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    Quote Originally Posted by KathyB View Post
    Hi Anne -- are you a candidate for Rituxan??

    KB
    I don't know. That's something I may try to find out if things get worse in the future. Paying my share of it would be impossible, so I'd have to get some special arrangements. Right now, I'm not bad off, just suffering while waiting to be able to take my new dose of MTX, which I can't get or take for a few days since I just finished one up, am out of pills, and the drug plan is weird about those things, plus there may be shortage, as there was last time and I had to find a different pharmacy that had it.
    Anne, dx'ed April 2011

  9. #29
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    Quote Originally Posted by Debra C View Post
    Sorry to hear the news Anne,but at least you caught it before it got worse. I went to see my gastrologist today and he said I have the start of Barretts esphogittis and I have to have a hatia hernia removed.My esphosgus and stomach are getting torn up from all the prednisone.I see my kidey dr. on Wed., my bloodwork wasn't to bad but my cholestrol is way high. And here I am trying to eat healthy and do all the right things. I think I'm going back to Fl. for awhile after my surgery and take a break from these drs..I seem to do better without them.
    Sounds like a great idea for some R & R ... Florida! Where do you visit? My family is on the Gulf Coast. Mom & sis in Venice, brother in Englewood, son in Tampa, son in Orlando! I hope to get down there by the end of February or beginning of March! Enjoy!!!!

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

  10. #30
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    Hi Anne
    Hate to hear that your suffering and the health system just makes it worse. Wish I could help, my thoughts are with you and a big hug.
    cheers Col 23

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