GPA with kidney involvement

[Shels]

Hello I live in the US and my dearest friend has just been diagnosed with GPA. She is 56 years old and has never been sick a day in her life. Last year she seemed to be getting colds that would last for a couple days then would go away. Nothing to alarming, however just in the past few months she developed a presistant dry cough and crushing fatigue along with painful joints. She just brushed it off as beeing over stressed and the symptoms would go away but came back more until she went in to a doctor who did every test under the sun. Then suddenly she became very sick and went to the emergency. They kept her for two weeks doing a CT scan and scaring the hell out of her with comments of inopperable lung cancer and saying she had Pnumonia witch she never had. Then the gave her a biopsy of the lung and sent her home with a bunch of antibiotics. The biopsy came back with no cancer and they said they were not able to figure out what was wrong. Mean while she lay there getting sicker and sicker not eating and wasting away for a week until her brother took her to a different hospital where the on call emergency doc looked at her and right away knew what it was. They got her in a room and checked her kidneys witch were at 4 percent she was almost dead. She had to have s blood transfusion and dyalisis. They did a kidney biopsy and blood tests and it came back positive for Wegengers GPA. Now she is on dyalisis three times a week as well as the treatment. My question is it possible to reverse the kidney damage with the drugs and be able to get of the machine or is it pretty much that for life or a transplants? I want so badly to give her some positive feed back thank you for any help or any story's you might have. Still very hopeful.

[Hidden]

I'm sorry about your friend. I was diagnosed a with MPA year ago. Like GPA, it's a form of vasculitis that affects the small blood vessels, and mine targeted my kidneys. When I was diagnosed, my kidneys were at 17% functioning (GFR). There was some damage, so they will never be back to normal, but after treatment, they are now functioning just over 50% and I'm lucky enough feel 100% healthy. I hope your friend fares as well.

I'm also in the US (Seattle) and have been very lucky to have a great medical team throughout. Feel free to message me if you want to talk more.

[Shels in reply to Hidden]

Oh thank you so much for you kind words a helpful reply. I am so sorry you are all going through this and wish I could wiggle my nose and make it all go away. But it sounds like you have an amazing out look in spite of all you endure and that helps so much to be able to be there for my friend. To know that others are getting better and living their lives we'll be a huge source of comfort. I can't thank you enough for sharing your story and wish you continued success on your path of healing.

[Dirock in reply to Shels]

Hi. My story very much mirrors that of your friend. I was 60 when I was diagnosed after the period of wasting away which you describe. I had a 2% kidney function and was days away from death. I was in hospital for a month on dialysis and plasma exchanges and started 6 months of chemotherapy. When I left hospital my kidney performance had risen to 9% and I did not need dialysis. That was 3 years ago and very gradually my kidneys have improved to their current 25%. I generally feel well despite the heavy cocktail of daily drugs. I try to be careful not to put myself in danger of picking up infections and I watch what I eat and drink but I still live well and continue to look after grandchildren, can walk up to 14 miles in one go, and go on holidays. I know we are all different but I hope my story gives you some hope that life can return to some kind of normality. Your friend will need to be patient though: her body has been through a terrible time and will need to get used to the drugs. If her progress is anything like mine she will still be improving after 3 years! Good luck

Diane

[Shels]

Thank you for you story. I am sending you warm healing thoughts your way I know you can heal I truly believe that,

[tisme2]

Hi Shels.

I too had never been off work all my life, I retired at 65 and by the time I was 66 I started to feel unwell. I had severe pain through my back so bad that I could hardly move, i was sent for a chest x-ray where they seen shadows in both lungs and I was given antibiotics and was referred for a lung biopsy. Waiting for results is the worst, but confirmed no cancer, thank god!

Pain subsided after a while but I soon started to have really bad fatigue and such pain through most joints! GP had no idea what could be the cause but prescribed me Ibuprofen 600mg 3 times a day, Tramadol 3 times a day, and I had Butran patches on as well. I was on this medication for 2 years!! Then I visited my GP one day and he decided to do a blood test. The same afternoon the GP rang me at home and said that I was to go back in the morning for another blood test.

When I went to have the test at the surgery he had left a note for me to go direct to the hospital for the test and if the readings were the same i was to be admitted straight away, what a worry!

Anyway, he had now stopped all my medication because of the results. The tests indicated severe loss of kidney function and I was now waiting for a kidney biopsy. After the biopsy it was identified as being wegeners disease!

Since being on the right medication my kidney function has improved now to 50% and I am told that this is as good as it will get. I have to say though that It was found before I needed dialysis, but was almost there!! I'm not sure if kidney's come back after dialysis this is something only the doctor can advise on and time will prove. Wish your friend the best wishes and maybe these histories of others with the same rare disease will help brighten her day!

[Shels]

Oh thank all so much for your heart felt story's. She is so scared mostly of dialysis and having to be on it for ever. She is still waiting on kidney biopsy results so not sure how damaged her kidneys are and doctors are being Vague not wanting to give to much information I guess, witch is probably a good thing in her case. She is in a place where she does not want to know to much and just wants accept what they tell her. At least these doctors are more sensitive to some one that has never been in the hospital, let alone be faced with something like this. As I shared in my last post the first batch of doctors basically had no clue and their bed side manner was less then comforting to say the least. So coming from that experience she is pretty shut down now as far as hearing any thing negative. I can understand that but also I am hoping she will want to take this serious and start to ask questions and learn all there is . But I am not the one who is faced with this so I have to understand that it's a process and people go at their own pace. So I have decided to do my own research and give her the better parts of it to get her through this beginning stage I am not sure if that is the right thing but if it gives her hope then I will do it. Thank you all so much for all you have shared and will share I am so great full to have found you I have shared your stories with her and yes it has helped a lot and did put a smile on her face. Just knowing that others have been able to get of the machine and get back to a normal life is huge. I am so great full. I wish you all continuing health on your courageous journeys.

[ken13]

My kidneys also failed and after a fortnight on dialisis the expert team of doctors managed to get them working again.after a few doses of rutiximab the function stabilised and started climbing.im now sitting at 30% and 3 year later. Yes it looks like im in remission, but the damaged has been done.vasculitus is a dreadful tlhing t, o cope with

[luggsey]

Your friends kidney damage may be permanent depending on scaring. The biopsy should tell the doctors if the kidney is inflamed only or scared.

If it's just inflammation causing the kidney failure it's reversible. My mum had kidney failure and was on dialysis but her kidneys began working again during steroid treatment.

Wishing your friend a speedy recovery.

Paul.

[Shels in reply to luggsey]

Thank you so much we have not heard back yet but they said there was major damage but it was not very long they are still waiting to see how the treatment goes this helps so much thank you every one