Flares and other things

[carriej22]

Hi Folks,

Haven't been around much lately - I am weaning off pred and am now down to 20mg and I can finally sleep. I have been sleeping like it OWES ME MONEY.. LOL.. Like honestly, 15+ hours a day.. It can't be good, but I think I'm hauling out of the fog now. I think I was just so tired and restless for not sleeping for so long, I just zonked out. Plus I am working a few days a week again and trying to get out of the house and do things... Christmas is coming, and with me getting RTX in December I want to be prepared incase I don't feel like doing much around then.

So here are my questions/concerns/what-have-you...

Sinuses. Mine never cleared up. They are better in the sense that I can breathe, but there is still crusting and blood and those alien-slug-snot-monsters that live up there. I do sinus rinse atleast 2x per day.. Sometimes more if it's driving me batty. Will this ever clear up? Can I be considered in remission with this annoying sinus issue?

Flares... What am I looking for? Last time my first symptom (other than sinus/ear crap.. and my ear is still crappy too) was spots. Started with 3 small spots on my foot and then over the course of a few days BLEW UP and then I had them from my toes to my bellybutton. So can I assume it will start with spots again or no?... Actually I don't remember if the spots or the joint pain came first. I think I had one leg bothering me for awhile, but the spots came.. Then joint pain. Yes.. Thats right.

OR.. will they catch it with labs? I go once a month now (YAY! so much better than once a week!) and I go for blood and urine. My numbers were climbing last time, but not very much.. But they've been climbing each time. I think they were at 13, and then last time they were 16... He told me what it was, but I forget :( ... I need to listen to his mumbo jumbo.

[drz]

My thoughts on your questions: Residual sinus symptoms are believed to be the toughest ones to get rid of and often persist even when people are considered in drug induced remission. Big blood clots are more likely to indicate Wegs is still active to some extent. Flares often follow the same pattern as your first pattern that lead to diagnosis but not necessarily as they can take a new form. The most common symptoms are the ones often mentioned and any return or new appearance of them should be suspicious enough to warrant a medical consultation and update evaluation. Labs vary in usefulness.
For me they are very closely correlated with my symptoms, but for some other people not so much, and sometimes they are not much use in determining if you are having a flare. Flare symptoms are generally considered most reliable indicator of need for additional treatment. it is useful to track you labs and symptoms to try learn what your patterns for Wegs activity tend to be as this can help you monitor your treatment needs. As you know Wegs or now GPA can vary a great deal from person to person so learning your own Wegs patterns can be very helpful. Good luck.

[Lightwarrior]

My thoughts on your questions: Residual sinus symptoms are believed to be the toughest ones to get rid of and often persist even when people are considered in drug induced remission. Big blood clots are more likely to indicate Wegs is still active to some extent. Flares often follow the same pattern as your first pattern that lead to diagnosis but not necessarily as they can take a new form. The most common symptoms are the ones often mentioned and any return or new appearance of them should be suspicious enough to warrant a medical consultation and update evaluation. Labs vary in usefulness.
For me they are very closely correlated with my symptoms, but for some other people not so much, and sometimes they are not much use in determining if you are having a flare. Flare symptoms are generally considered most reliable indicator of need for additional treatment. it is useful to track you labs and symptoms to try learn what your patterns for Wegs activity tend to be as this can help you monitor your treatment needs. As you know Wegs or now GPA can vary a great deal from person to person so learning your own Wegs patterns can be very helpful. Good luck.

I don't know what I could possibly add to this excellent advice.

[HopeinTN]

I second that! Nice!

[carriej22]

Thanks guys!

I'm feeling so much better. Still a long way from where I was before wegs, but today I was chasing the dogs up the stairs and while I definitely noticed the exertion - I could do it. In August I wasn't able to climb the stairs without gasping.

Now... To get this weight off! Egg whites and raw veggies... Lol