Hello..I am a Weggie too.

[Al]

Kim--Lupus and Wegener's--wow! You've been dealt a bad hand. SLE (Lupus) involves different classes of antibodies, but both reflect an immune system gone haywire, quite possibly (but not certainly) because of of a triggering infection. The lava lamp image is excellent, and has the ring of truth, if also a touch of gallows humor! Thanks for making me chortle, both of you.

Drugs and kidney function: If the kidneys are stressed, I'd stay away from methotrexate, which is not kidney-friendly. True, all other meds have potential problems too, but MTX is a known unfriendly, so far as renal function is concerned.

Al

[KimH]

Hi Al, Glad to have made you chuckle and ditto to you and your writings! Lupus is not me..it is my daughter. She was dx'd when she was 13 and is now 29. She had/has an aggressive case. Long long story. She now has a kidney, it is working great. Lupus is and has been in remission. Her struggle now is making the leap from being a very sick 13yr old to and independent" healthy" 29 yr old. It is a huge hurdle for all of us. Didn't you have 2 sons marry right after each other? Me too. Lets say my winter/spring 2011 was action packed and all the "excitement" of the time could have brought a flare. Who knows!

So you are in WA.. Love it. I used to be a west coaster after i was an east coaster and the moved back home! Sorta...from home in LI to NW CT woods!

I am looking forward to chatting! thanks K

[KimH]

Al, I think that is trudy who has Lupus and wegeners. I read your post before I read hers. But she also has a daughter with Lupus. Trudy..we should talk! I am glad ur daughter is getting a job. Did she have kidney involvement? In addition to the kidney involvement for my daugther she had dialysis access issues and and she has that anti body thing ( my mind is blank now..not enough coffee) that makes her blood coagulate. So my daughter was at her last access spot when she finally got a kidney.

[Al]

Al, I think that is trudy who has Lupus and wegeners.

Sorry--I didn't make it clear that I was responding to both of you in one message! Back to multiple-message responses: It was a sone and a daughter that were married back-to-back. And, yes, I think the stress level of that whole business contributed mightily to the relapse.

When these things happen to someone of your daughter's age, my heart caves in even more. The daughter of a good friend was diagnosed with MS at age 20, which was wrenching. But four years later, she got married and is doing amazingly well. So there is something to be said for youthful resiliency!

Al

[KimH]

Hi elephant, I have been thinking about your advice..daily! I asked my Rhuemy why my Cellcept was such a baby dose and he said my B cells are way too low already and he is concerned about worsening of anemia. My symtpoms are lessening and feeling much much better in every way. My doc also has other weggie patients that he consults the big weg docs with so after my blood work is done he will do what he needs to do to discuss my case. I have no health ins; my rhuemy has known me for a long time and will do what ever has to be done to help me in every way. I am to start to go down on my pred on Monday after being on the cellcept for one month. From what my doc says and others have posted it takes about one month to do it's thing. I am quite the worrier and have sleepless nights thinking about the big "what ifs". Will I wake up with a new symptom, etc.. I know that is bad thinking that way! Thanks again for your input. Be well! Kim

[Chris G]

Hi Kim. Welcome.

I don't know if this will be helpful to you, or just make you worry more...... but my case of wg seems similar to yours, and I wanted to address your question about it being more difficult to stamp out sinus related wg. My wg has been called "limited" or "head and neck" wg - some may call it "mild". Yes, mild for sure, compared to the incredible suffering of many of the people here - but it sucks none the less (especially the fatigue). My wg has affected my eyes, nose, sinuses, ears, trachea, and head (the daily headaches that sadly, just become the norm). I've also had some unexplainable joint pain from it as well. No lung or kidney involvement.

I started off on pred and methotrexate, and was told that the mtx should put me into remission, and then I would likely stay on mtx for a couple of years. Long story short.......the mtx helped for a little while, and then failed. We tried Imuran, but I lack the necessary enzyme to take it. So yes, at that point, I was told that sometimes "head & neck" wg is more resistent to the less aggressive drugs, and can be more difficult to stamp out. I've since had one round of rituxan (May, 2011), and will have another round this November. I'm off mtx, and my pred dose is as low as it's ever been, at 10mg. I'm to taper it by 1mg per month. I still have a few very minor lingering symptoms, so I know my wg is still lurking about. I'm SO looking forward to the second round of rtx , as it was like a miracle for me - I'd have it tomorrow if they'd let me.

Anyhow, for now, I'm glad to hear that Cellcept seems to be working for you. I've never taken it, but it seems like your dose is low, compared to those here who take it. I wouldn't necessarily abandon it for something more aggressive, without trying an increased dose.

Good luck, and keep us posted!

[KimH]

Yes, I have been wondering about the low dose of Cellcept but the dr was worried about anemia and my B cells. Wanted further testing. He did tell me about rtx, 1000 mg for 3-4 treatments, Imuran and Cellcept at the higher doses. I am glad my next round of blood work will be discussed with a weggie doc and I will feel better about the treatment plan. Honestly I do not know how I would pay for the rtx other than mortaging my house. The hospital I go to does cut the bill in half and they provided me with the info get get help from the drug . I have seen price from 64K for 2 treatments to several thousand. My rhuemy does the drug company lecture circuit so maybe he has a connection. Or he is a professor at Yale and maybe I can get signed up for a study or something there. Grasping at straws but who knows...

My wegs in all "in my head". Just sinuses. So far, no headaches, no stuffy nose, no runny nose, no fatigue, the coughing is almost gone and so is the post nasal drip.. just a few of the nasty crusties inside and tinnitis. I know the wegs dog is still barking..perhaps wimpering but for my SANITY I cling onto each improvement! Now I wait for tests and weg dr input.

[elephant]

My Weggie dog has one eye that is half way open and once in a while it closes. It is my sinuses, my left nostril runs on and off. I can live with it.