Suspected Wegeners...please help

[godgirl]

I'm being treated with methotrexate, too. So I'm on 20mg methotrexate and 10mg predisone for the time being. And then taking 6 billion other pills for side effects.

99.1 isn't that high a fever, but watch it. And if your eyes feel funny, you'll want to see an opthamologist at some point. That was weird for me. I'd never seen one except to get an eye check for glasses. Now I can't stay away! Did the prednisone help your eyes? And is there any pain?

[Amanda888]

Aw, I missed the methotrexate. My eyes just feel a little feverish if that makes sense. It comes and goes really. I do feel a tightening or pressure on the sides of my head, my throat feels funny and I feel like I have the flu. Yay. Lol. The medrol did help all my symptoms while I was on it. I'm so worried about so many things right now. I will try to get to an eye doctor soon.

[annekat]

Yes, a fever, even not a high one, but higher than your normal, can be a sign of WG, as can any weird feelings in or around your eyes. I had both of those, and some pretty bad headaches right before dx. The docs didn't pay much attention to the headaches or the eye issues, as they were focusing on my lungs, which were starting to get in pretty bad shape, and my sinuses. The headaches and eye issues cleared right up with treatment, and turned out not to be anything serious. But every case is a little different, of course.

[mishb]

Hi Amanda and welcome.

Gosh I hope you don't have Wegener's, and we will help you in any way we can.

I am in a few different groups on facebook, due to my other conditions.
The groups I am in are for Wegeners, Lupus, Rheumatoid Arthritis, Microscopic Polyangiitis (I don't have this) and Mixed Connective Tissue Disease (Hey, when one Autoimmune disease just isn't enough )

The reason I am mentioning this is because when I see posts from newly diagnosed people, in these other groups, I could swear that they all have Wegeners.
So many symptoms are exactly the same as each of these other conditions and more. Sometimes I wonder how the doctors can manage to distinguish one from the other - however, we all know that it is from the blood test results and/or biopsies.
In the case of Wegener's the ANCA result is not a factor in the other conditions that I have mentioned above.

It really sucks that you have to pay for all of these tests, but ANCA is one that you really do need to have.

.........I will say again - I sure hope that you do not have Wegener's

[Amanda888]

Hey Michelle

I sure hope I don't have it either but I know something is just not right with me lately. If the symptoms are so similar I do wonder if I might have a different auto immune disease. I think the place Im going to start is with this lab: Lab Tests Offered | Discount Blood Tests at the Lowest Prices Online Then if the sed rate is wonky I will go ahead shell out $300 for the ANCA test next. I seem to have constant temple pain thats different than a headache. It kinda pulsates and is always really tender in that area. I wonder if its sinus or artery? Maybe I need a regular head CT as well as a sinus CT...

[annekat]

If you can afford that first test, I'd go ahead and do it for your own peace of mind. As for the ANCA, that is important, too, but keep in mind that a low or negative reading doesn't rule out WG. I had a very low reading and my doc, who didn't know much, tried to rule it out on that basis. Little did he know, while he was on vacation, I'd gone ahead and gotten a nasal biopsy from my ENT, which was positive for WG... plus I took off my glasses and showed him my new saddle nose. (Don't worry, many don't get these, especially if their sinus involvement is light or moderate and is caught fairly early.)

I would agree with what was said above, find out exactly when your insurance kicks in. Maybe you can save yourself some money if you can wait a week or two.

[Amanda888]

I seriously heart you guys so much! Thanks for being so awesome with all the helpful replies! Today is the first day since Friday I don't feel like I have the flu, no sinus pain still have mild temple tenderness/pain. My eyes look a little red but don't feel too bad. I swear this has been happening for 2 months now, fine for a week, sick for 5 days then fine for a bit, sick for a bit. Such a roller coaster. If the blood work comes back normal what would the next step be? I really don't think a nasal biopsy would show much. The "sinus infection" I had was only around for a month and a half and that was the first sinus infection Ive had since I can remember. It seems to be gone for now.

[annekat]

I seriously heart you guys so much! Thanks for being so awesome with all the helpful replies! Today is the first day since Friday I don't feel like I have the flu, no sinus pain still have mild temple tenderness/pain. My eyes look a little red but don't feel too bad. I swear this has been happening for 2 months now, fine for a week, sick for 5 days then fine for a bit, sick for a bit. Such a roller coaster. If the blood work comes back normal what would the next step be? I really don't think a nasal biopsy would show much. The "sinus infection" I had was only around for a month and a half and that was the first sinus infection Ive had since I can remember. It seems to be gone for now.

I agree a sinus biopsy might not show much but could be kept in mind in case things get bad in that area later. Maybe the ANCA. Or just see someone to discuss it, once your insurance kicks in, whether or not you are feeling sick again. The off again, on again feeling of illness is fairly typical of "smoldering" WG. Not sure what to say about the temples. There is a form of vasculitis called Temporal Arteritis or Giant Cell Arteritis, which affects the temporal artery and ocular nerve, I think, not sure, but I know someone with that who went blind in one eye.. If the eye and temple issues remain, I'd go to an eye doc, although I didn't at the time, and it turned out OK. Good luck with it all!

[lag713]

If I were you, I would schedule a visit with your doc for the date your insurance kicks in. Given the nonspecific symptoms, you could have anything. It's the old expression- If you hear hoof beats then you should think of a horse (common) not a zebra (rare). There are probably a great many things that could cause those symptoms. I would try to relax. Be open and honest with your doctor about your symptoms but you should let your self-diagnoses go. They went to medical school and have a certain level of expertise that we as patients will never have. We have an expertise in our own experience of the disease but that is not enough to help you diagnose yourself.

If it gives you comfort to get started with blood tests now so that you can bring those results to the doctor then by all means do so. I wish you all the best in finding what is wrong and getting well soon. I sincerely hope that you do not have Wegeners.

[MCC]

Hi, step away from the self diagnosis sites! It is only going to lead you to have massive anxiety about what's wrong with you, whilst conclusively giving you nothing.
Symptoms of Wegeners are similar to lots of other diseases...the doctors thought I had all manner of things before I was finally diagnosed. I don't feel it does you any good at all worrying yourself even sicker about what is wrong with you. Wegeners is uncommon, so probably it isn't that.

I would do as Iag73 suggests "If I were you, I would schedule a visit with your doc for the date your insurance kicks in." Good luck, and try not to worry.