kidneys

[keegan55]

Well I guess I will through it out there
I was diagnosed march 2014 which they said was limited to lungs. On mtx no pred due to diabetes. A few months later started having blood and mucous when blowing nose ENT ssys he sees nothing. Kidney function has never been great due to PA. Well now bun over 20 and creatine 1.5 so gfr around 36 or stage 3. My kidney Dr here sent me to UNC Durham NC. She was so good. She wants to do biopsy. I do not after the wedge biopsies in March and losing 1/2 right lower lobe and a piece of right middle lobe. This surgery was very hard on me. She feels that my kidneys are inflamed lots if cells in urine but no blood. It could be from the MTX Could also be GPA and I forgot what else
so her plan was to try Rituxin ????(spell) and see if The kidneys get better. However It mouse protein based and I had violent reaction to remicade. She says we can use solumedrol etc etc
I dont know about all of this.Its a 6 hour round trip to UNC I am beginning to think I need to just quit it all

[Dirty Don]

I am beginning to think I need to just quit it all

Don't even go there keegan...it's all a part of the cycle of the disease, a stage if you will. If you quit, the process gets ugly. I did it once, peeps and docs were all over my ass saying what I've just told you in not so nice terms...shoulda heard my daughter getting on me! LOL! Funny now cuz I didn't quit...best to you and hang tough.

[JeanMarie]

Keegan, a kidney biopsy is a piece of cake compared to open lung. My non-medical opinion-get the kidney biopsy, it will take away the guess work.

[Hannah]

I had a kidney biopsy earlier this year. It was scary before going in, but it's a fairly quick procedure. The recovery involved laying on my back for 8 hours and staying overnight for observation. It's not super fun, but it's not nearly as hard as the other stuff you've been through. It sounds like you've been through so much! You can do this. Let them take care of you.

[miracleshappen08]

I would go for the kidney biopsy. But I totally understand where you are coming from with lung surgery. Last November, I had a hole in my left lung the size of a tennis ball. My blood levels were way down and did not know why. Well my lungs were filling up with blood. So they to the surgery and took out my entire upper left lobe and 1/3 of the bottom. It was hard on me!!!! The chest tubes where SO BAD!! I had Ritixumab (Rituxin) after my surgery and I felt like a different person! I will be praying for you! You have been through a lot. I know!!


Miracles do happen!!

[Pete]

Even though I've not had either a kidney or lung biopsy, I agree with the others that you should have the kidney biopsy. Left alone, the disease will not go away.

Rituxin is a great drug. Properly administered, it should get you on the way to remission within a couple of months. The solumedrol and Benadryl that are given with it should keep any allergic reactions at bay. They also start the infusion itself at a very slow rate to check for allergic reactions. The only side effect I had was slight fatigue the day after.

Don't quit fighting this damned disease!!

[mishb]

I don't understand why you need a kidney biopsy.
If WG was confirmed via a lung biopsy, then you have WG. Can't they just treat you for WG in your kidneys without doing a biopsy.

I would get the Rituxin.

Giving up is not part of the plan Keegan - you can't even let this sucky disease win

[keegan55]

They said I had limited WG no kidney involvement.

[keegan55]

I was on Remicade mouse protein had a violent reaction Dr said no never again so I am afraid even with the anti allergic drugs