When a flare is not a flare...

[newbie]

Thank you! We've only been working together for a year (he dx me last Sept) so I am giving him the benefit of the doubt for now. We are getting to know each other and that is helping with communication.

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[MikeG-2012]

Thank you! We've only been working together for a year (he dx me last Sept) so I am giving him the benefit of the doubt for now. We are getting to know each other and that is helping with communication.

Please don't let this go too long. I have lung damage because I game my rheumy the benefit of the doubt!

My ENT was adamant that there had to be active disease because of the damage to my nasal tissue, and he was right!

Maybe an ENT visit is in order to have them take a look?

[newbie]

Please don't let this go too long. I have lung damage because I game my rheumy the benefit of the doubt!

My ENT was adamant that there had to be active disease because of the damage to my nasal tissue, and he was right!

Maybe an ENT visit is in order to have them take a look?

I finally got in to see the ENT my insurance approved in July (referred last October ) and I only made it to the resident, never got to see the dr because "if you have Wegener's, there's nothing we can do for you."
I'm working on approval to see another. Actually, I'm trying to get am appointment at the Cleveland Clinic! Insurance classified it as second opinion so it may be a while.

I promise to be vigilant, I have both a respiratory therapist and a well trained EMT in the family, they keep a close eye on me!

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[newbie]

Please don't let this go too long. I have lung damage because I game my rheumy the benefit of the doubt!

My ENT was adamant that there had to be active disease because of the damage to my nasal tissue, and he was right!

Maybe an ENT visit is in order to have them take a look?

Question for you, did you have a lot of drainage with flare or just inflammation? I have almost no drainage this time but my ears and sinuses are all swollen.

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[Pete]

I'm working on approval to see another. Actually, I'm trying to get am appointment at the Cleveland Clinic! Insurance classified it as second opinion so it may be a while.

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I hope your referral at Cleveland Clinic will be to a wegs specialist instead of an ENT. I see Dr Alexandra Villa Forte there. She's excellent. Some folks on here see Dr Carol Langford. They're among the best on the planet for Vasculitis care.

[whatthewhat]

Hey Newbie, I'm sort of cranky tonight, so take this all with a grain of salt, but... HGB of 8 would be very concerning to me. When our daughter is microscopically hemoraging in her lungs, her HGB drops but there is no coughing or wheezing or anything detectable like that, and nothing alarming on x-Ray or CT scan, or even with the teeny camera in her lungs. It is only under a microscope can they detect the bleed. Also, PR3 is a significant way to track. The blood test results you cite plus physical symptoms would have me beating down a doctor's door for my child.

[annekat]

Welcome, Newbie. Others have said the right stuff, so I mainly want to say I'm glad you found the forum. A lot of docs will naysay that your symptoms could be a Wegs flare. For some reason, they like to deny it, or some do, anyway. Until it's staring them in the face. An ENT should never say he can do nothing for you. Mine has done a lot to help me understand what is going on in there, even if he isn't the one actively treating me. Most of us need a team of doctors. Most people's main WG doc is a rheumatologist, but not all of them are competent to treat Wegs, either, and may even tell you you don't have it when you do! Flares are common and you can probably tell the difference between crusting and allergies. A raise in pred dose at this point, and perhaps trying a different immunosuppressant, could help you a lot. If you could get in to see one of the docs mentioned above at the CC, that would be excellent! Let us know what happens.

[Alysia]

Hi. I think you have enough evidence for wg activity: elevated sed rate, low hemoglobin is an indication !, PR3 is more accurate then C-anca, also ears and sinuses swollen. The earlier you treat it, its easier to beat it. I never trust any doc just like that. My beautiful Phil used to say that we need to be our own best docs. I think you need to insist on getting serious treatment asap.

[JeanMarie]

Hey Newbie, I'm sort of cranky tonight, so take this all with a grain of salt, but... HGB of 8 would be very concerning to me. When our daughter is microscopically hemoraging in her lungs, her HGB drops but there is no coughing or wheezing or anything detectable like that, and nothing alarming on x-Ray or CT scan, or even with the teeny camera in her lungs. It is only under a microscope can they detect the bleed. Also, PR3 is a significant way to track. The blood test results you cite plus physical symptoms would have me beating down a doctor's door for my child.

ME TOO. HGB of 8 would be scary to me. I don't know anything about thalassemia but do you have a hematologist? You really need to get help before things get worse. Good luck & I hope you get help!

[newbie]

I took your comments to heart and had to admit that I am not as persistent as I should be when it comes to my own health. I tend to think that as long as I am upright and kicking then I am fine. I am never that way when my husband or children are sick so I am trying to be better at taking care of myself.
I've called Dr twice with no call back yet. I also tried CC again and left another message. In the mean time I am monitoring my symptoms and eating to feed my body iron and vit b's.
Thank you all for your concern and advice!
I hope you are all hanging in there today!

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