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Thread: First Flare?

  1. #1
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    Default First Flare?

    So I was on a slow taper, finally down to 4mg prep and then I caught what appeared to be a little cold, nothing really at all.
    I woke up the next morning vomiting (alot) and a little dizzy (flashback to a year ago when something similar happened just prior to my WG diagnosis and I went deaf in my right ear)....so off to the ER I went as a precaution. My ESR levels went from 24 to 40 and they found a small amount of protein in my urine (that was a first). They said they they weren't sure if it was viral or if I was having a flare, so they upped me to 30mg Pred and scheduled me for another Rituxin infusion this coming Friday (last one was 6 months ago). (I almost had my face back too!!!) I've lost about half my hair, due to the steroids (I think). I saw someone else post about folic acid. Anyone experience hair loss with steroids and any suggestions on slowing it?
    I still have the cold and am wondering if my ESR levels increased just due to the cold or if indeed I am flaring....would hate to put more Rituxin in my body if I don't have to. I expect more test results (C-ANCA) back this Tuesday....we shall see.
    Any comments, thoughts, suggestions are always appreciated!!

    Thanks so much!

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    Default Re: First Flare?

    Hi RiverJoy

    Sorry about your (possible) flare.

    I went from 60mg of prednisone to now 3mg, and heading down to 0.

    I've been taking folic acid each day since the beginning (9/2017) and I'm glad I didn't lose any hair.
    I don't know if I'm taking this because Methotrexate or prednisone.

    If your course of treatment required that you take folic acid and they never prescribed it to you, you may want to evaluate your team of doctors and course of treatment.

    Best of luck.

    Ed.

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    Default Re: First Flare?

    Folic acid is usually prescribed or recommended while also taking methotrexate to minimize hair loss. I think you can buy it OTC. I was on it during the 2+ years I was on mtx. I didn’t lose hair, but it did become coarser.
    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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    Default Re: First Flare?

    Dont have tips on stopping hair loss but a good tip on how to look as if you have a fuller head of hair.

    In the shower. wet hair. Then apply lots of conditioner to hair. Not shampoo at this point, just conditioner. (My hair is chin length and I use about one heaped tablespoon)
    Massage into hair and leave for 3 to 5 min. ( You can do your main body wash during this time).
    Apply about 1 heaped tablespoon shampoo to hair (do not rinse conditioner off) Shampoo hair well and rinse.

    Works for me

    Rose

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    Default Re: First Flare?

    Hi Riverjoy,
    When I was on Methotrexate and folic acid I had terrible diarrhea. It left me lethargic too. Now on prednisone and Rituxan infusions. Have moon face and have lost hair. My solution for hair loss- nice wigs! Other loss has been teeth- nice implants! Moon face will resolve as steroids decrease.
    As far as C-ANCA, when I was feeling good C-ANCA came out as .8, when I thought I was having a flare, it came out normal. I remember reading on this site that you don’t immediately get a clear C-ANCA reading until a while after infusion.
    On the hair loss thing, my rheumatologist told me to stop coloring my hair, I did. Also, I would discontinue hair products other than shampoo and conditioner.
    So sorry you had this flare. You used good judgement to get right on it. I am beginning to think of this disease as R&R- Remission & Relapse!
    Keep your chin up.
    Masha

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    Default Re: First Flare?

    I lost half my hair and starting taking Biotin and it all started growing and is back to normal now..So I think it helped..but not sure

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    Default Re: First Flare?

    I so appreciate all the feedback everyone!
    Going to try the conditioner trick and biotin!
    Thanks again!

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    Default Re: First Flare?

    Don't be too reluctant to do Rituxan. Prednisone is worse for you than Rituxan. If Rituxan can get eventually get you off prednisone it is a good deal.

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    Default Re: First Flare?

    I need to get rtx every 6 months and I get it since 2013. No special issues. It is a wonderful med.
    I had hair loss because of bad nutrition (I also have colitis). I started to take multi vitamin called "roots" for hair. 2-3 months later my hair stopped falling. I keep on taking it. Also make sure you eat enough protein.
    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.

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    Default Re: First Flare?

    Just to add to my tip above .........After washing. I let my hair dry about 90% naturally and then dry using a hairdryer with a diffuser attached for the last 10%. Looks a bit wild after using the diffuser as I just run it over my head until my hair is completely dry. Then when I comb my hair through (my hair is all the same length) it just falls full, smooth and thick looking.

    Rose

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