When a flare is not a flare...

[newbie]

I'm on 10 MG prednisone and 1500 cellcept and have been experiencing minor crusting and moderate to severe eye/sinus/facial/joint/head pain lately so I thought I might be having my first flare since Rituxan treatment in February.

Tests results show Sed rate elevated, PR3 elevated but ANCA is negative.
From what I have learned from reading posts, negative ANCA doesn't necessarily mean it's not a flare.

Being relatively new to all this, I'm curious to hear what the Dr has to say about the results. I'm guessing he's going to tell me to stay the course, which should be alright as long as motrin continues to knock down the pain to manageable, right?

Also hoping he gives me iron infusion. Hemoglobin is down to 8, again, and I feel that is contributing to my feeling so rotten.
Feeling miserable and frustrated and just needed to vent. I'm still upright and kicking and making the most of each day! Thank you!

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[Pete]

Hi Newbie,

Welcome to the "club". Hope you and your doc get this figured out. Treating our dumb disease means looking at all the clues and symptoms. Chances are that if you don't feel right, something isn't right. Could be a flare. Could be something else. Give your doc the whole story...

[Dirty Don]

Hi Newbie, first I agree with Pete, run it ALL by your doc. Your pred dose is fairly low, so I'd consider that also...it masks many of those ailments until the big drugs get their job done. Best to you.

[drz]

Is the HgB up or down since last lab work? It is hard to feel good when HGB is that low but does it mean you are bleeding somewhere which would indicate active Wegs activity. More pred should help you feel better quicker but higher dosages do come with some undesirable side effects.

Also if Cellcept isn't doing the trick for you there are several other drugs that are usually more effective in knocking down Wegs and generally the first choices to try. RTX, CTX, AZA, and MTX. I used the first three and AZA is my maintenance drug for past several years.

[newbie]

I laid it all out at my appointment, he said to wait and see what the blood work says. My lungs still sound clear and I'm not coughing at all, thank goodness!
The Hemoglobin is way down since last labs (March ) but I am a woman soooooo.....that's what they blame the anemia on. I try iron supplements but they just make me ill. They gave me iron infusion in February when I had my first Rituxan and I couldn't believe how much better I felt despite the other ongoing symptoms so I hope he doesn't make me wait too long again.

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[MikeG-2012]

I'm on 10 MG prednisone and 1500 cellcept and have been experiencing minor crusting and moderate to severe eye/sinus/facial/joint/head pain lately so I thought I might be having my first flare since Rituxan treatment in February.

Tests results show Sed rate elevated, PR3 elevated but ANCA is negative.
From what I have learned from reading posts, negative ANCA doesn't necessarily mean it's not a flare.

Being relatively new to all this, I'm curious to hear what the Dr has to say about the results. I'm guessing he's going to tell me to stay the course, which should be alright as long as motrin continues to knock down the pain to manageable, right?

Also hoping he gives me iron infusion. Hemoglobin is down to 8, again, and I feel that is contributing to my feeling so rotten.
Feeling miserable and frustrated and just needed to vent. I'm still upright and kicking and making the most of each day! Thank you!

For me, sinus issues are the first indicator of a flare. Had my Rheumy took my word the first time I complained, I would probably not had my second flare up and lung damage. So sinus crusting, headaches, bloody crusts, are all signs of smouldering wegs in the sinuses, which I can tell you first hand, is wegs activity--even with negative ANCA.

[newbie]

For me, sinus issues are the first indicator of a flare. Had my Rheumy took my word the first time I complained, I would probably not had my second flare up and lung damage. So sinus crusting, headaches, bloody crusts, are all signs of smouldering wegs in the sinuses, which I can tell you first hand, is wegs activity--even with negative ANCA.

He seems to think it is just allergies causing the inflammation.
Antihistamines don't help though, only motrin.

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[Pete]

Hey Newbie,

You may not be getting enough iron in your diet. Here's a link to some info about dietary sources of iron: Top Iron-Rich Foods List

[newbie]

Hey Newbie,

You may not be getting enough iron in your diet. Here's a link to some info about dietary sources of iron: Top Iron-Rich Foods List

Thanks, Pete! I already eat a very iron rich diet. I am thallassemic and have battled anemia my entire life but only needed to turn to supplements on occasion (like pregnancy ). It's just been these last few years that I can no longer tolerate the supplements and no matter how much iron, vit C and D I put into my diet, my body doesnt seem to absorb minerals they way it should. Even the infusion they gave me should have lasted longer than this!
Not sure what's going on or if this has autoimmune roots too.


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[MikeG-2012]

He seems to think it is just allergies causing the inflammation.
Antihistamines don't help though, only motrin.

If it keeps getting worse, and you keep getting push back from your doctor, please private message me and I'll give you the phone number of my ENT who can explain to your doc what is really going on when the sinuses flare up.