Tammy

[Tammy Turner]

Hello. My name is Tammy and my husband, David, has just been diagnosed with WG. We are trying to find out as much as we can about this disease, its progression, and treatment(s). This was a sudden onset with symptoms starting 9/23/08 when he was initially diagnosed with strep throat. Then bilateral pneumonia. Then dehydration. Then a kidney infection. Then RA. We have been through an entire gamet of diagnoses, but until he found a very good Rheumatologist in OKC, no one put all his symptoms together, and he has had literally every symptom there is, except his ANA came back negative. I have many questions and will ask as we go to various doctors, but I wanted to introduce myself and thank you for this site.

[andrew]

Hi Tammy! Welcome!

Feel free to ask anything you like. Please pass on my best to your husband. Is he in Hospital at the moment or at home? Glad you found a good Rheumy!

[Tammy Turner]

David is having a pulmonary function study done today, then on Monday we go for a whole body PET scan and a Nephrology appointment, and on Tuesday the Urologist. Besides the sinus, ear and eye problems, the RA, shortness of breath, fatigue and weakness, he also has a creatinine of 2.7, red blood cells in his urine, something in his lungs that appears fibrous, and a prostate covered in nodules that is enlarged. We are dealing with a lot right now, as I'm sure many of the members are. David's rheumatologist is 80%-90% certain this is WG, but feels we will likely need a biopsy to be sure. I have not read anything about WG and any effect on the prostate. Could this be a separate medical concern? Thanks!

[kk226]

Hi Tammy. I am so sorry to hear of your husband's diagnosis. My husband has been "officially" diagnosed since early October, with problems extending back to january of 2008. He actually just got out of a 21 day stint in the hospital this past Wednesday. It is a very scary disease and I encourage you to research as much as possible -- utilize such websites as the mayo clinic, the cleveland clinic and the vasculitis foundation. My husband's creatinine level had gotten up to the 9's and they had him on plasma exchange and dialysis, etc. it is now back down to the mid 5's so he was released. If I can help you with any questions please feel free to ask. I know first hand how scary this is, especially when it is your husband!

[andrew]

I have not read anything about WG and any effect on the prostate. Could this be a separate medical concern? Thanks!

Admitedly neither have I however, mine was enlarged prior to diagnosis as well and it's fine now.

What meds have they got David on? He seems to be going through the mill at the moment and I hope things calm down for him soon.

Also, typically a biopsy is used to make a final diagnosis of WG but in the mean time I'm sure he'd be on Prednisone??

He seems to have the right level of attention from the docs too which is a good thing.

[Tammy Turner]

They only have him on the Prednisone right now. His Rheumy said he didn't want to start him on anything else until we have a definitive diagnosis of WG. Last night, David woke up with a horrible pain on the entire left side of his face from his nose to his ear, from top to bottom. It lasted for about 2 hours, then let up. It's getting downright scary!! Glad to have all of you to talk to about it. Thanks!!

[andrew]

Good that he's on Pred Assuming an affirmative diagnosis is made for WG, they'll likely put him on Cyclophosphamide (Cytoxan) which is a chemotherapy drug. This should help keep his immune system in check and give him a break from the symptoms while things hopefully start healing.

[Natalie Makeef]

Hi Tammy

I was diagnosed in Nov 2006. I am in remission and taking Methotrexate I am off predisone now. WG is such a terrible disease. I have had to learn by experience things this disease brings. I am sorry to hear about your husband. Don't allow too much stress as this seems to make more symptoms come about and worst. So it doesn't pay to have a stressful job. I get really tired so I have to rest my body now and again. It could be sleeping or just lying still. Take things really easy. Try not to do so much in a day!!! I hope this helps take care Natalie

[[email protected]]

Tammy my heart goes out to you and your husband as well as all that have this terrible desease and their families.

My brother n law was recently diagnosed with it , hes a newly wed so his new Wife is really going thru alot too.

My best adivse to you is study up on it, KK gave you the name of some good online sites.

This form is great too.


gmom