ANCA AND GOODPASTURE VASCULITIS

[macarena1]

I got sick end of March 2017, 2 days after my first XOLAIR shot. Docs thought i had pneumonia for 4 months, 100% right lung-75% left lung, no hospital ir bloodwork, just meds and nebulizer. Another Doc finally did bloodwork, I ended up in ICU for 15 days: eGFR 10, Creatinine 4.75. Lungs and kidneys = 2 ULTRA RARE Vasculitis Diseases = ANCA & GOODPASTURES. (March 2016 started Synthroid for thyroid.) In hospital, Nephrologist & Pulmonologist started Very Aggressive treatment: massive doses of steroids, 14 days plasmapheresis, and CYTOXIN chemo. Miracles happen as my eGFR is close to 40. Goodpasture in remission but Anca is not. Started Anti-Rejection Chemo/CELLCEPT. Immune system is low, trying to stay healthy and gave had such hard time breathing for months. Stopped taking B12, Centrum Multivitamin and Caltrate before a recent heart stress test. I've been breathing better but not all better. One day at a time...

[cjrsquared]

I am sorry that you have been so unwell but pleased that you have some recovery. Your terminology, pulmonologist, leads me to conclude you aren’t in the uk. Do you have autoimmune hypothyroid, also called hashimoto’s disease? If you have one autoimmune condition you are more prone to others of which anca antibodies is one. I hope you respond well to treatment.

[macarena1 in reply to cjrsquared]

I'm in the USA. I didn't realize you were in the UK till after I tagged it. I do not have Hashimoto's, but with so much going on with my immune system, one wonders what may develop. About 11 years ago (2 years after my sister, brother-in-law and niece were killed in a car accident), after so much stress, I got sick with my first immune disease, Chronic Hives. Stress can make you sick. About 2 years back I found out that my Thyroid was low, so I'm on Levothyroxin for that. Backtracking through past bloodwork, I've found out that my Eosinophil Levels have been high, which I had no idea. I agree with you, once you have one immune disease, you are more susceptible to others. All most a year ago (2 DAYS after I had my very first XOLAIR SHOT, hmmmm, did this precipitate my 2 Vasculitis Deseases?) is when I came down with what doctors thought was pneumonia, and I battled it for 4 months! After ending up in the hospital, I was Stage 5 Kidney Failure with eGFR of 10. Of the many doctors I saw for my 15 day ICU stay, my Kidney Doctor was the best. He guessed correctly that I had both P-ANCA and Anti GBM (GOODPASTURES), and started very aggressive treatments to stop further damage of my kidneys and lungs, and hopefully to put them in remission (500mg Prednisone, Plasmapheresis for 14 days, and Cytoxan/Chemo). Because Dr. Visser was so quick on starting my aggressive treatments, and months of waiting to see what was left of my kidney function, I'm happy to say that my eGFR is all most 40, and it is a miracle to have that!!! Before Christmas I found out, through my weekly bloodwork, that GOODPASTURES was in remission, but the ANCA was not. And, that is why I am now on 2000mg per day of CellCept. I thank you for your concern, and yes, I am fighting to get healthy again. I've got some of the best doctors, and I do pray that I can get the ANCA under control. I don't want anymore damage to my lungs or kidneys. All the best to you!

[Shaza70]

Really hope ur health keeps improving.

My husband got ill after an injection for flu. We didn’t realize at the time. My uncle died of swine flu so we all needed shots as we’d been in contact with him.

Any how he started with headaches and swelling. Retaining water getting worse each week. After no less than 12 hospital and doctors visits and our final trip to a and e And his kidneys having blood and protein in them I contacted the kidney department. The apologized for not getting back to us. Got him in that afternoon and following a biopsy he was told he was in kidney failure. Steroids and cellcept like urself for a year. Following year because of treatment he had flu infections again and relapsed.

I hate hospitals and doctors. I feel they bury their mistakes.

But glad ur feeling some relief.

[macarena1 in reply to Shaza70]

I'm learning that some of these Specialist Doctors, like Pulmonology, Nephrology, Rheumatology, etc..... They can sometimes take quite a bit of time getting back to you.... Not that they do not care, but because they are so busy, and many are out of the office travelling to different hospitals and clinics. There are too few to go around. I went from 1000mg of CellCept for the first 8 days, to 2000mg per day now. Doc wanted to make sure that I tolerated it before upping the dosage. Because my Kidney Doctor correctly guessed my 2 Very Rare Vasculitis Immune Diseases (ANCA & GOODPASTURES), and started Very Aggressive Treatments, I can say that I went from Stage 5 Kidney Failure at 10eGFR, and somehow now, I'm between 30 and 40 eGFR. I'm fortunate to have this high of Kidney Function, and yes, it is a miracle. Your Kidneys to not rejuvenate like your liver can after damage, and it can take months after treatments to see what function is actually left. My Nephrologist says, it's like a Forest Fire.... When it's all done, are there just black stumps left, or are there some trees left to rebuild. I'm fortunate, I had some trees left in my Forest! Blessings and Prayers to you.