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Thread: Diagnosed yesterday

  1. #11
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    Default Re: Diagnosed yesterday

    Hi @Masha, it sure is a strange disease! So many different ways it can show up. I'm sorry you had tooth loss. My gum swelling made some of my teeth feel a little loose and they have moved a little but are now secure in there. The prednisone/methotrexate has completely cleared up my gums now.

    I think I'm tolerating the methotrexate and folic acid okay. The prednisone, not so much. I'm looking forward to tapering off prednisone (I'm on 60 mg a day now), but I have to wait a few weeks before I can start the taper (assuming my blood work is good). It's a love/hate relationship with prednisone I guess. My symptoms have much improved (including the breathing - breathing perfectly fine now), but the side effects are not so fun. Very excited about Avacopan, thank you for sharing!

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  3. #12
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    Default Re: Diagnosed yesterday

    There's a few of us in the PNW, Jen. I'm in the very far southeast corner of WA. I'm sorry to hear you are joining our club.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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  5. #13
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    Default Re: Diagnosed yesterday

    Hi, Jen, sorry for the delay. I've been having re-registration problems and can only use tapatalk, on my phone, which is becoming difficult due to it's old age. Time for a replacement.
    FYI, the Olympia Farmers Market has been closed to sales by artists and crafters due to Covid-19. But we will be back a few per day starting in June. I have asked for Sundays but don't know yet. If you come up, let me know, and I can tell you if I will be there. It won't be very festive because of the social distancing. We should be back to normal by July or August, I hope!
    As for the saddle nose, it's disappointing, but I've learned to live with it. My glasses hide the worst view of it pretty well. Yes, surgery can be done, but one needs to be pretty well in remission. Which I think I am. But I can't see trying to pay for it. If I couldn't breathe through it, Medicare might cover most of it. I've also heard of a substance called Restylane (sp?) which is chemically very similar to the collagen our body makes, which can be injected into the collapsed area to restore the shape, and lasts for some time before needing to be applied again. A forum member told me about it. Something to think about. In my case, saddle nose hasn't been painful, though for some it has. Mine seemed to appear overnight with no warning.
    I'm glad it sounds like you are getting used to methotrexate. And prednisone can be pretty problematical especially at the higher doses. 60 MG is a pretty high dose to be on for that long, but your doc must have a strategy. I, too have had a love hate relationship with it in the past. Especially knowing it was eroding my bones. As you taper to lower doses, it may not bother you much. The sooner you can get off it, the better, as it will be more difficult the longer you are on it. Though many stick with a small dose indefinitely to help maintain remission.
    Well the phone is acting up; I'd better go.
    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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