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Thread: How to know when you're having a flare

  1. #51
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    Its not the biopsy Im worried about Its more of what comes back . Im getting ahead of myself i will be fine got GP visit Monday and we are ringing my Specialist then To get him up to speed . oh happy mothers Day to all .

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    I'm glad you're on the road to getting answers!

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    Hi Natalie
    Hope everything went okay on Monday
    Col 23

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    hi everyone , back from hospital all we did was rule out a few things . had a 3 new specialist looks at me .
    had ultrasound that was all good
    plastics guy wants breast specialist to have a look and find whats the best course of action from here .
    my doc seen me and wants the breast specialist to take a look at me , and see if he can answer these three questions ..
    It it just an absess that wont heal because of the immunesupressents I have been on for so long, Its it cancer ,could it be part of her vasculitis. well he ruled out cancer and there is nothing surgical he can do so good . He belives that the dressings and antibiotics are the right way from here , dosent thing a biopsy would help , reason being .. there is no mass and would putting two hloes in it help you heal any better NO .
    I asked my doc about a biopsy . he has never heard of WG affecting the breast before . I told him I have heard of a case , .." that right " , "yes doc thats right ..'':P
    His thoughts on a biopsy are , because I have had infection there will be white cells around the blood vessels and thats what vasculitics looks like , and if it dose came back looking like Wg then we would put you on more immune supressent drugs and thats the wrong way we want to go from here . I understand that , Its very Tricky .
    so long story short we are sticking with the new dressings and antibiotics see how we go , might just need a bit more time to heal ,? I feel fine other wise .

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    Natalie, I forget if you're already on pred. What finally worked to heal the last of my skin ulcers was putting a bit of OTC cortisone on it. I wasn't on pred by that time, and it really made a difference. It healed incredibly slowly--literally 3 mm a month-- by the time it started healing. Each of two ulcers took about 9 months to heal. I used the pred at the tail end of it, though. I have no idea if it would've helped earlier on. The worst ulcer was the size and thickness of my palm.

  6. #56
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    Hey sangye , thats interesting to know . Yes im on pred not much though 5 mg daily , gee that must have been a night mare healing at that pace and for so long .it has been 66 days since they lanced it ; so im hoping it just needs a bit more time .. I see my specialist next week Wed 16th I will ask him about cort cream .. may just help finnish the healing process off . ty

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    It's a tough call because cortisone can worsen an infection, but it will help decrease the inflammation if it's a vasculitic lesion. My dermy had said not to use anything stronger than 1% hydrocortisone, and just a tiny bit. The same product in an ointment made it dramatically worse. The cream was fine. From a holistic perspective a vasculitic lesion is a sign of too much fire, and adding oil to a fire worsens it. The dermy's I saw thought that was a bunch of hooey. But if I used the ointment, the surrounding skin literally blistered in seconds. Like adding oil to fire....

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    Natalie, so glad you got this checked out. Glad you feeling good.

  9. #59
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    Thank you Ele

    SANGYE... I will take those points with me when i see doc next . The merry go round of doctors again hey , one says no other says yes one says maybe other hasnt the foggest no wonder WE as the paitent need to have a say in all of it , and this forum helps all of us , with past and future treatment .

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    I really went through the mill with the leg ulcers. All my docs were undecided and totally lost. They rarely see vasculitic ulcers and have little in the way of treatment options. They constantly want to do things that work for diabetic ulcers, which are a very different mechanism and not painful. I can't even describe the pain I was in. I was also allergic to anything sticky and had a hard time with wound dressings. The whole things was a huge nightmare.

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