Life feels pretty good

[Il_Randyb]

Hey all, I was diagnosed in 2012 with Wegs and essentially quickly (in a month or less) lost 85% of my kidney function. It was worse for a while but has slightly improved in the last year. Lots and lots of other issues popped up and I don't even want to remember them at this point. Lets just say it has been a tough couple years. Fast forward to now however, I feel the best I have felt in a long long time. Issues I had related to wegs have disappeared, kidneys are doing well enough I can skip my nightly dialysis treatments and travel if I want to. I also have not had to take an epogen shot in several months now which indicates my kidneys are supplying the natural hormone to stimulate red blood cell production. The other good news is that I went on the kidney transplant list six months ago but was not active due to needing to complete antibiotics for Latent TB, however that all was completed in Sept and I am now ACTIVE!!!!! I must say I believe that TB antibiotic INH really was hard on my body, I had very weak muscles and chills while I was taking it and now that stuff is all flushed out my strength has returned and the chills are gone!

Dec of 2013 my Wegs was declared in remission, and I went off everything then, even prednisone. Took me six months to start looking normal again, that stuff really changes you physically. Recently in my six month blood work for Wegs c-ANCA was once again positive, my Dr was not overly concerned saying it happens and that since I don't appear to show any new symptoms that we should just watch it for now. He also reasoned that if I get a transplant I will be on immune suppressant drugs anyway so that should handle Wegs as well. Not sure about this and so I decided to get a second opinion. I am already engaged with Barnes Jewish Hospital in St Louis for my kidney transplant so I asked them for a referral to a wegs specialist. I see the Dr Vijayan early December. I am really curious what this Dr will say after seeing my labs and talking with me.

I know presence of c-ANCA antibody alone is not enough to declare Wegs but I was wondering if anybody else appears fine but has a positive c-ANCA?

Thanks

Randy

[gilders]

I know presence of c-ANCA antibody alone is not enough to declare Wegs but I was wondering if anybody else appears fine but has a positive c-ANCA?
Randy

I'm not c-ANCA positive at the moment, but people certainly can be positive but still not have active Wegs.

Your Dr was correct in that you would be immunosuppressed after transplant and being immunosuppressed is the maintenance way of keeping wegs in remission. But, unfortunately, that doesn't mean your Wegs would definitely not flare.

Are you off dialysis completely or is it just the odd night or two that you can now miss?
If you're off it completely I'm surprised they let you on the transplant list.

[Mas78]

I was c-anca positive for a number of years after I was in remission, I was off Cytoxan and prednisone at that time. and my kidney function continued to improve.
My rhumy and kidney doctors were more concerned about how all my labs combined looked and how I overall "felt".

now about 3 months ago I got the news my c-anca came back positive again. my old Rheumatologist called for a few tests and scheduled more or less a follow up appointment. I guess in about 3 weeks i'll know more after I have my appointment, but in the past a positive anca wasn't enough for me to get medication.

I hope your kidneys can continue to improve and you wont need the transplant list at all.

[Il_Randyb]

My Rheumatologist basically said the same thing, that since I don't appear to have any symptoms that he was not worried.

My Kidneys were down to something like 10/11 percent, now up to perhaps 15% but I don't think there is any chance they will ever get above 20% and 20% is the cutoff for a transplant.

Thanks for the replies

[im so blessed]

Hey all, I was diagnosed in 2012 with Wegs and essentially quickly (in a month or less) lost 85% of my kidney function. It was worse for a while but has slightly improved in the last year. Lots and lots of other issues popped up and I don't even want to remember them at this point. Lets just say it has been a tough couple years. Fast forward to now however, I feel the best I have felt in a long long time. Issues I had related to wegs have disappeared, kidneys are doing well enough I can skip my nightly dialysis treatments and travel if I want to. I also have not had to take an epogen shot in several months now which indicates my kidneys are supplying the natural hormone to stimulate red blood cell production. The other good news is that I went on the kidney transplant list six months ago but was not active due to needing to complete antibiotics for Latent TB, however that all was completed in Sept and I am now ACTIVE!!!!! I must say I believe that TB antibiotic INH really was hard on my body, I had very weak muscles and chills while I was taking it and now that stuff is all flushed out my strength has returned and the chills are gone!

Dec of 2013 my Wegs was declared in remission, and I went off everything then, even prednisone. Took me six months to start looking normal again, that stuff really changes you physically. Recently in my six month blood work for Wegs c-ANCA was once again positive, my Dr was not overly concerned saying it happens and that since I don't appear to show any new symptoms that we should just watch it for now. He also reasoned that if I get a transplant I will be on immune suppressant drugs anyway so that should handle Wegs as well. Not sure about this and so I decided to get a second opinion. I am already engaged with Barnes Jewish Hospital in St Louis for my kidney transplant so I asked them for a referral to a wegs specialist. I see the Dr Vijayan early December. I am really curious what this Dr will say after seeing my labs and talking with me.

I know presence of c-ANCA antibody alone is not enough to declare Wegs but I was wondering if anybody else appears fine but has a positive c-ANCA?

Thanks

Randy

Hi! Ive been a wegeners pt for 13 years now. My c-anca always runs between5-15. Ive had flares but also been stable. My dr always goes by how i feel first. I dont like to see a positive c-anca either but i have felt fine and had it too. best of wishes!!

[Il_Randyb]

Hello all,

I had a visit to Barnes Jewish Hospital yesterday to get a 2nd opinion on my care for Wegs. What I heard is that it sounds like I am getting the right care. As a reminder I went off all meds except vitamins and blood pressure meds a year ago. My last blood test revealed the presences of C-ANCA this last time but both my local and the Barnes Drs said they were not concerned as my esr rate was low and I have no other symptoms.

Related to this I have been feeling better and better since the end of summer 2014. The Barnes Dr (nephrology) suggested that my labs seem to support that my kidneys have recovered enough that I might be able to now get off dialysis. I need to hold off dialysis for a week and then test to get confirmation. So more than a year and a half later my kidneys seem to be recovering - go figure.

[Pete]

Great news, Randy!!

Hope you keep continuing to improve.

[Il_Randyb]

Thanks Pete, I have learned as I bet everyone on here has, to take such news cautiously and not get to excited. Easy to get carried away by what appears to be good or bad news.

[MikeG-2012]

Hello all,

I had a visit to Barnes Jewish Hospital yesterday to get a 2nd opinion on my care for Wegs. What I heard is that it sounds like I am getting the right care. As a reminder I went off all meds except vitamins and blood pressure meds a year ago. My last blood test revealed the presences of C-ANCA this last time but both my local and the Barnes Drs said they were not concerned as my esr rate was low and I have no other symptoms.

Related to this I have been feeling better and better since the end of summer 2014. The Barnes Dr (nephrology) suggested that my labs seem to support that my kidneys have recovered enough that I might be able to now get off dialysis. I need to hold off dialysis for a week and then test to get confirmation. So more than a year and a half later my kidneys seem to be recovering - go figure.

Day by day, and little by little. Glad you are doing better Randy! Hope things continue to improve. I'm one of the weggies that has lung involvement, but not kidney, so I cannot imagine what you've been through, but I am glad that the prospects seem better than what you thought!

[gilders]

I really hope the renal function copes without dialysis. Let us know how you get on.
Perhaps if you don't achieve coming off dialysis fully, maybe you can cut the amount of sessions down so you get more time to do fun things?