When a flare is not a flare...

[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

[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!


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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.