Hi Everyone, I am new here and haven't been dx with Wegener's yet

[carrottop50]

I just need to chat and see what some of you think.... As I am reading around this site I am finding that I am not alone here... I have been sick for years now and the doctors don't seem to have a clue. I have a rheumatologist, a PCP and kidney specialist. I just seen my kidney specialist only once and go back to him on this Wednesday. He is testing me for Wegener's. So I haven't heard yet. I have the blood work results but I don't know what they mean. I have Rheumatoid Arthritis, sjogrens, diabetes and some other things going on... I was put on Methotrexate, plaquenil, folic acid. Then when that seem to fail they added Humira. The kidney specialist stated that the humira I was just starting would help the wegener's if that is what I have. Well the strangest thing happened....after my 2nd shot I started to feel so much better. I have felt so bad for so long I didn't know any life but this one... but the humira kicked in for 5 days 5 wonderful days.... oh I felt so good... I could breath -throat felt normal for the first time in years - no swelling... sinus took in lots of air too... it felt so strange. Even my lungs felt like they could expand more than they have for sometime. The very best thing was I didn't have to take insulin for those 5 days... I have been on insulin for 10 years at 50 units a day. My blood sugars were lower then my hubby's (not diabetic) for those 5 days... The fullness (feels like water) in my ears went away. The inflammation and pain went down to 1/2 of what I was use to. The rash on my arms seem to do better too. I am losing my hair big time. My kidneys are now working as well as they should. The sore inside my nose is still there but it has been there for a long time so that might take a while to heal. The inside of my mouth didn't seem as touchy no sores, The fatigue left my body. I really felt like a new person. Well then by Thursday I was right back to my old sick self. I went to my PCP today and he doesn't have a clue of what is going on ...just that I am complicated. I was in the hospital about 10 years ago with all this stuff and I am afraid I am heading that direction again... I about lost my life that time. My blood sugars were in the 500 and 600's and I couldn't breath... I was spitting up blood. They told me that they didn't have a clue what was wrong but that I was really sick. They dx'ed me with pneumonia and staph infection. I came home on oxygen for about 3 or 4 months then I started to feel better but have never felt well. I guess I don't know how to get the doctors to take me serious and not tell me it is all in my head. I am so very sick of being sick... it is terrible to want the docs to dx me with this disease but I am thinking if they would dx with it... I could get to feel better because they would put me on the right meds. Thanks for reading... I can use any help you can give...
Carrottop

[Dirty Don]

Welcome carrottop, glad you found us. You have been and still are on quite a ride. Tough lady! As far as dxing WG, the most sure resolution is thru a biopsy, usually nasal or lung. The blood tests will give the docs a strong hint, but many docs won't go to WG until there's a definitive dx from a biopsy. The drugs are toxic, and many feel it is best not to administer until there is a definite dx. Many on here don't agree with that as the sooner the correct drug protocols start, the better one will feel sooner usually. I noticed no mention of prednisone. Pred can/will reduce many of the symptoms you're presenting. It's not a drug one wants, but, as you well know now, you need to get stable first. This seems to have been going on too long...hope you have good experts at this Auto Immune stuff. Best to you.

[carrottop50]

yes on prednisone.... was on 10 mg now down to 5mg... Can't take higher dose nor for long time.... Prednisone gives me glaucoma. So it is one thing or another it seems sometimes.

[drz]

yes on prednisone.... was on 10 mg now down to 5mg... Can't take higher dose nor for long time.... Prednisone gives me glaucoma. So it is one thing or another it seems sometimes.

That is why we end up on more meds to treat the side effects of other meds. Are you taking drops for glaucoma?

[carrottop50]

A few years back I was on 10mg for about a year or so and had to use 2 different drops daily. So now I don't stay on prednisone more then 2 months at a time and use lower dose.

[drz]

A few years back I was on 10mg for about a year or so and had to use 2 different drops daily. So now I don't stay on prednisone more then 2 months at a time and use lower dose.

I have been on pred and latanopost eye drops for past four years and my glaucoma eye pressure stays in acceptable limits. I just had to double the dosage after i started the pred meds.

[Jaha]

Welcome to the forum I hope you get some answers very soon.