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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@akerslauren in my opinion, you need to be on prednisone.
I think you need the medication to calm all the issues that you are dealing with.
Then, perhaps you and your doctors can better understand what is going on with you.
Has anyone considered Lupus, or Lyme disease?

Hopefully, that awful pain doesn’t return, if it does, my recommendation would be to go to the ER. They may have some answers.

You obviously have done lots of research on your own. Generally, health care providers are not happy about patients getting their information online.
Just go to the appointment, state your symptoms, and let the doctors decide what is going on.

Please keep us updated. Blessings

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Replies to "@akerslauren in my opinion, you need to be on prednisone. I think you need the medication..."

@SusanEllen66 I asked my rheumatologist on Thursday about trialing a short taper course of prednisone, but she said they don’t like to do that until a diagnosis is clear. My labs just came back, but nothing super helpful in pinning down what this is. My ANA somehow went DOWN to 1:80 homogenous. I’m sooooo annoyed because I already know she’s going to tell me that it isn’t clinically significant if they don’t view my previous 1:160 as meaningful. RNP ab are still positive, but now rheumatoid factor is also a little elevated (10 with a reference range of 6). ANCA totally negative though. I’ve literally never felt worse in my life, and that’s including post childbirth. I’m used to feeling crappy at this point, but it’s on another level. That’s the only reason I’ve researched anything, really. I’m just desperate for an end to all of this. It’s like as soon as I get adjusted to living with one group of symptoms, another group pops up in addition to or in place of. I’ve been to so many appointments lately and really hope it doesn’t come down to the ER!

Thanks for your time and insight < 3