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! [emoji2] 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! [emoji2] 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. [emoji53]
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 (http://www.webmd.com/diet/iron-rich-foods)

[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 (http://www.webmd.com/diet/iron-rich-foods)
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. [emoji53]
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.

[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." [emoji15]
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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[annekat]

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.
That sounds like human nature to me. We are glad to give you a nudge, and it sounds like you are on the right track trying to get in to the CC. If it takes awhile to get an appt. there, don't let things get out of hand, and try to find a doc near you who will take your symptoms seriously. You may not have seen this site which lists docs that have been recommended by patients in specific areas:
http://www.vasculitispan.org/ . These may not all be the top notch specialists listed by the Vasculitis Foundation, but may be more suitable than the current docs who are dismissing you, and could be helpful in the time period between now and your appointment with the CC. Also, once you have an appt. you can call the CC regularly for cancellations, and maybe be seen earlier that way. Good luck!

[newbie]

Need to vent...Dr finally calls back and says everything looks ok. 😕
I ask about my h&h and he says "well, your at 8, I guess that's low. You felt better when you got iron last time, yes?" I said "yes." He asks if I think I want to do that again or wait....wait for what?? For my hgb count to get down to 6 and my ferritin to 3 again? Yes I want the iron! Oh, and what about my other symptoms, nose is bleeding more (still slight compared to others) and pain increasing....he responds that my ANCA is negative so that is probably just allergies. I ask about the PR3 being elevated but he brushed it aside.
*sigh* I need a new dr but I have to get pcm to help do that and that isn't working. Other problem is that this Dr is one of the most respected at our hospital. He came very highly recommended. Sounds like I'm going to have to start knocking on some doors.

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[Pete]

Your doc came highly recommended for what??!! I think you need to get to Cleveland Clinic and see someone who knows how to treat you.

[Alysia]

It makes me angry... I hate that combination of arrogant and ignorant at the same time docs...
Its a flare. You need treatment. Asap. You need a decent doc. We are behind you. I am sorry that you need to fight for that basic thing. But you have no choice. Sending prayers and fighting spirit....

[whatthewhat]

I like that Alysia sent you fighting spirit, because I think you need it. You deserve to have your health looked after. Symptoms + labs = active disease. And ANCA can be negative in certain people, but low red blood cells can indicate you have a hemorrhage somewhere (inflammation in the blood vessels can mean blood leaks out of them.) PR3 being elevated is another way of going at the ANCA issue - PR3 elevation is a better marker, actually, anyway, from what I understand. I am convinced your doctor knows nothing about WG and is not able to admit that and fight for you to get knowledge that assists in your treatment. As fast as this disease can move when it gets going, it's always better safe than sorry in diagnostics, and he doesn't seem to get that simple fact. I'm so sorry if I sound scolding - I just have a sense of urgency about this on your behalf. I know you know your doctor is acting the fool & you are trying to get better help… here's all of us cheering you on to keep advocating for yourself :hug3:

[drz]

I remember I felt very worn out and couldn't function mentally when my HgB was under 10. i got regular blood transfusions till it finally got over 10 and stayed there. I was also still bleeding in my lungs at the time to cause the anemia and the nurses could tell that when they checked my lungs. If your Wegs is active enough to be causing such problems you need some meds to knock it down IMHO. I got CTX and high dosage of pred back then and it took a few months to get it under control but things slowly got better. I understand it is hard to pursue the treatment you need when you feel so worn out but do you have any assertive, even aggressive, friends that can help you get the care you need.

[newbie]

Can't get him to agree it's a flare, but at least he agreed to send me to hematologist. Hemoglobin down to 7.6 and ferritin at 2.9...going tomorrow for iron infusion. Will ask them to check my lungs while there.
To the ladies...do any of you have heavy cycles...does it cause you to have severe anemia? My drs insist that my rbc and iron would be fine if I would just have a hysterectomy. My cycles are no heavier now than they have ever been and my anemia was always well controlled, so I don't understand why that could suddenly be the cause. However, if there's one thing I have learned, thanks to Wegener's, it's that anything is possible.
Hope ya'll are having a good day!


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[annekat]

Can't get him to agree it's a flare, but at least he agreed to send me to hematologist. Hemoglobin down to 7.6 and ferritin at 2.9...going tomorrow for iron infusion. Will ask them to check my lungs while there.
To the ladies...do any of you have heavy cycles...does it cause you to have severe anemia? My drs insist that my rbc and iron would be fine if I would just have a hysterectomy. My cycles are no heavier now than they have ever been and my anemia was always well controlled, so I don't understand why that could suddenly be the cause. However, if there's one thing I have learned, thanks to Wegener's, it's that anything is possible.
Hope ya'll are having a good day!


Sent from my SM-N900V using Tapatalk Well, they couldn't say that to a man, now could they? I don't like the insinuation, when you have Wegs, that your anemia or any other symptoms are probably caused by "female troubles" when that's never caused it for you before. Let me guess, are the doctors male? What a cop out. And suggesting that you have a hysterectomy, unless you have a really good reason to do so! Arrgh! Your doctors are sounding more and more out of touch, and I hope you can get an appt. with the CC very soon! Otherwise, if this turns into a crisis, you'll end up in the ER and admitted to the hospital, where maybe a more aware doc can help you in the meantime. If you could find one without the ER visit, it would be better. Try this link, http://www.vasculitispan.org/ , for local docs who can help people while waiting for specialist appointments, or may even be competent to treat you. Where are you located? Someone here might be able to help with that, too. But I'd still go with the CC, when you can get in, if it is a feasible trip for you.

[newbie]

I'm in central NY, so the list isn't much help locally.
The hemotologist I saw today wants to check for a slow bleed in my intestinal tract. I figured there would be obvious signs of something like that but he said not necessarily. At least he listened and believed me when I said my lady parts are in no worse shape now than they were 2 decades ago so, unless age is a factor, I couldn't see how that could be the whole picture. He agreed!
Now, if there's no other bleed, we'll be back to the hysterectomy argument. I told gp and rheumy that it's a hell of a lot easier to top up my oil than to take out the entire oil pan! I just don't see a reason to risk major surgery as a wegener's patient! I'll be hitting the change in 5 years or so anyway.

Staying vigilant and inspired by all of you! Not going down without a fight!
😠💪👊

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[Pete]

I'm in central NY, so the list isn't much help locally.


You might want to have your local doc consult with one of the specialists on the VF list.

A visit to Cleveland Clinic would probably require an overnight stay. There's a hotel on the Clinic's campus. You probably wouldn't need to go to the Clinic more than 3-4x per year. I'm down to every six months or so now, and it's a 2+ hour drive each way for me.

[annekat]

I don't know the geography of the eastern US that well, but in central NY, there could be some good docs and clinics closer than Cleveland. Pete is right about the Vasculitis Foundation list, and here it is: Vasculitis Foundation » VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . I posted the other one because I hadn't a clue where you are, but that one relies on input from patients who know about it, and probably neither list is complete in listing competent rheumies in various areas who can treat WG. I'm thinking NYC, Boston, and Philadelphia would be closer for you, and we have members on here who are happy with docs in those places who are on the VF list. Examples are Dr. Speira in NYC and Dr. Monach in Boston; see the list for more. But Cleveland has several good WG docs all in one place, and such a great reputation that if you can go that route, the overnight stay would likely be worth it and might even be fun.

You might also check the Weggie Map linked in blue at top of page to see if anyone in your area has "pinned" themselves on it; then you could PM them to ask for doctor advice. Or put out a request in the title of a new thread.