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Thread: Flare up?

  1. #1
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    Default Flare up?

    Hello,
    I'm wondering if I'm truly in remission or not (or having a flare up)....
    I introduced myself last week. I completed rituxan IV (2 doses in August; 3-4 months of cytoxin didn't work prior to this) and came off prednisone tapered down to nothing from 75mg initially, started in May 2019, newly diagnosed. I'm waiting for rituxan approval from my insurance for over a month now, rather than to take the Imuran daily, so currently on nothing. Once prednisone was less than 7.5 or 5 mg, joint pain recurred. (My diagnosis symptoms were disabling pain of most joints including spine, swollen rt hand/wrist, infected sinuses/rhinitis, skin sores and kidney damage). Right now, my joint pain is especially in my knees, ankles, sore feet, little tenderness of wrists. At night I get little smarts of pain in toes, fingers, like pin pricks, but not the burning heels like before. I continued to have the nose troubles after tx but barely any bleeding, with minor crusting now. I have rare tingling of hands. I have an appointment with my doctor on Tuesday next week. She is near retiring, & I'm her first case. I see a rheumatologist end of Jan, had seen him every 2 months.

    I'm wondering if its accurate for me to say to my doctor that others with this disease are pain free when in remission (albeit, others are on a maintenance dose of prednisone, and probably I need to be too). They watch my bloodwork, however, my inflammatory markers-- sed rate, and C Reaction Protein (CRP) were normal before when I suffered with symptoms until suddenly they went up with kidney damage at time of diagnosis.That's why my doctor wouldn't refer me to a rheumatologist until I had the evident vasculitis skin sores. Even after she saw these, it was me that called an ambulance (because I could barely mobolize) to be admitted and get diagnosed. I just want to prevent from a sudden acuity with kidneys being damaged again, as they already leak blood and protein from damage.

    I didn't have any pain such as arthritis prior to the months leading up to my diagnosis.

    Are others pain and symptom free when in remission????

    Thanks so much!!!

    Donna

    Sent from my SM-G970W using Tapatalk

  2. #2
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    Default Re: Flare up?

    Donna,

    It sounds like a flare to me. While we'd all like to be pred free, sometimes it takes a long time to get there. If you can't get rituximab soon, you may need to go on methotrexate and prednisone to get things back under control. Letting the disease get more pronounced only makes it harder to calm down into remission.

    I've been in a rituximab-ind'uced remission since 2014. I've been off pred since June 2018. I'm pretty much pain and symptom free.

    Hope you get the care you need to get into a solid remission soon.
    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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  4. #3
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    Default Re: Flare up?

    Thanks so much Pete! I'll be seeing my doctor on Tuesday so I'll ask her then if I shouldn't be on some prednisone, and see if she can check on things as far as me taking an immunosuppressant. The specialist suggested Imuran but said it can bother joints so I asked about the rituxan. If it can be managed so that I don't have joint pain, I'll take that route. It's just that when I told my doctor about the pain last time, she asked if I'd wear orthotics, which I now have. I will stand my ground then that my joint pain needs to be addressed and recognized as the disease still being active.
    Again, thank you for your response!
    Donna

    Sent from my SM-G970W using Tapatalk

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