I'm so dumb

[lag713]

I'm so dumb. I felt like my rheumatologist wasn't hearing me when I asked about trying to go off medication to see if I was in remission. I made my own decision to go off methotrexate. I made a series of really bad decisions by letting follow up appointments go by the wayside. I was busy with work and school but I was also wanting to evaluate my blood work off medications because there were some disagreements about my diagnosis (GPA, MPA, or RA). I thought that having a clean slate would help answer questions about whether or not I was in remission and clarify my diagnosis.

After 4-5 months without meds or oversight, I made an appointment so I could re-evaluate and get back on methotrexate if necessary. My symptoms were always mild which led to questions about the diagnosis. I had very occasional joint pain or swelling over the months without medication at about the same level as on the medication. I saw my doctor's physician assistant today and mentioned a likely cold, allergies, or sinusitis issue I've been dealing with the last 3 days. She mentioned that they might be signs of a flare.

I'm getting a pretty full blood panel done to assess my status and will return to the clinic in 3 weeks when they have results. I know there is no use in panicking because it doesn't help anything but should I be worried? I assume that the PA was being cautious by ordering the blood work and asking me to come back soon. Something about her suggestion that what I feel is a typical allergy or cold may be a Wegener's flare is really nagging at me.

I'm hoping that you'll say not to worry but we all know that this disease is sneaky and can come out of nowhere when you're not expecting it. It's like I let a false sense of comfort take over my senses and forgot how dangerous this thing can be. I took my health status for granted and didn't make it a priority.

[me2]

I don't think you are dumb at all. I could write a large book about all the decisions I made that I wish I had done differently. At some point you just have to start again right where you are and it won't help
to beat yourself up about how you might have done things differently. Hey, in this alternate choice universe you may also have done well and had no problems.

The reality is you are learning more about what you need to do to take care of yourself. It sounds to me like you are actually on the ball. I hope you are not having a flare. I know I have thought I was having a flare many times when it turned out to be something else. It's great that you are getting seen for you symptoms and will get this figured out.

I now try and assume it is not a flare but am diligent to pay attention to symptoms until something changes.

Take good care of yourself

[lag713]

Thank you for this perspective! It's a lesson learned no matter the outcome. Wishing you health and wellness!

[annekat]

Even if it is a flare, it doesn't seem to be a bad one, yet, and has only been going on for a few days. If it suddenly gets worse and is accompanied by night sweats and fever, more severe joint pain, and such classic flare symptoms as those, or you start getting a lot of blood in mucus or coughing it up, then I'd be worried. Then I'd urge you to start taking the meds again, if you still have them, and see someone in the interim while waiting for your blood test results. And there is always the chance that it isn't a flare at all, but some sort of cold or allergy thing going on. I agree with Kirk that you are not dumb and shouldn't beat yourself up over this. Whichever way it goes, it sounds like a manageable situation.

[Birdie]

It's like I let a false sense of comfort take over my senses and forgot how dangerous this thing can be. I took my health status for granted and didn't make it a priority.

From what you wrote, you obviously know what's going on. I would not wait weeks for the test results, if it suggests a problem then I'd want faster attention than that.

[lag713]

I was called in early for an urgent appointment because my blood work looked like I was having a flare. I met with my rheumatologist's physician assistant and was very relieved to discuss the results. I was sick for about a week but felt better without any lingering symptoms (sinus pain/pressure, cough, hoarse, runny/stuffy nose, etc.) then my husband got sick. I can't give him a flare!!! My ESR and CRP results showed inflammation but that could've been from being sick rather than a flare. As before, my Pr3 result was positive but just barely detectable at 1.1 (anything greater than or equal to 1 is positive) but not really elevated. We decided that I would go back on methotrexate to be safe and follow up with another round of blood work in 2-3 weeks to see if the inflammation has gone down. I'll check back in 5 weeks.

So, (1) I didn't get any more conclusive evidence as to having Wegener's or something else, (2) I am probably not having a flare but I am starting methotrexate again to be safe and redoing blood work to check, (3) I *think* I have a slightly better idea of what to look out for in a flare but still have some questions to ask my rheumatologist next visit. Pretty good news all in all!

Thank you all again for your advice and support!!!!