Vasculitis UK
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Has anyone with GPA - vasculitis gotten their kidneys back?

Has anyone with GPA - vasculitis gotten their kidneys back? I was diagnosed on March 18, 2017 and have been on dialysis ever since. I currently do CPD dialysis while I sleep. I really want my kidneys back, but I am ready to give up on that hope and get my transplant process going. My research shows that a large part of the kidney can repair itself, but nephrons never will. I was told I had a very aggressive form of vasculitis. I am looking for other patients that have this exact same disease to share information and hope with. I have a brother that will donate a kidney to me, but I want to use that as a last resort option. I do not like the cons of a transplant. Rejection medicine for the rest of my life for 1 example. My last creatinine check was 2.77 and my BUN is 71. So, I am still in stage 4 kidney failure.Thank you in advance for any positive or hopeful feedback.

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I was diagnosed with stage 3 chronic kidney disease, caused by vasculitis. Fortunately for me there were (and still are) no symptoms. Treatment to put the vasculitis into remission has led to a small improvement in kidney function, but my vasculitis / renal consultant has made it quite clear that this improvement can only ever be marginal and we must continue to treat the vasculitis to prevent it causing more damage .

I don't understand your creatnine level of 2.77. See rixg.org/results/creatinine... for how creatnine is normally reported (this is in the UK - perhaps you are somewhere else where a different measure is used?). Also I know nothing of a measure called BUN.

However on the basis of my consultant's message - and I have absolute confidence in him - I would suggest that even if your kidney function can improve above dialysis level it will always be marginal and at risk of relapse.

Regarding transplant - I know a gent age 70 who had a transplant 17 years ago. He was on permanent and strong immuno-suppression which meant that, when not actually doing something, he would fall asleep. To counter this he made sure he always had plenty to do - becoming a hospital governor and running our hospital's kidney patients' association. All in all he was very satisfied with his life.

A few months ago he was told that the transplanted kidney was failing and that he would need a second transplant. This was done three months ago from a live donor but not a relative. Such is the improvement in transplantation since 17 years ago that he has been amazed at how quickly the new kidney "took" and his life is now even better than before.

On this evidence - and of course we have to be careful of generalising as we are all different - and as you would have the advantage of donation from a close relative, if I were in your position I would go for the transplant. Your concern about lifelong immuno-suppression is understandable, but presumably you are already on this for the vasculitis. Admittedly it is likely to be stronger, but I've met many other people who have had a transplant and they have no regrets.

I suspect this is not quite the message you would like to have received, but nevertheless I hope it helps.

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Thank you for the information. I live in America in the state of Michigan. BUN (Blood urea nitrogen) is a medical test

that measures the amount of urea nitrogen found in blood. The liver produces urea in the urea cycle as a waste product of the digestion of protein. Creatinine is a breakdown product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body. These are 2 of the biggest measures used in the United States to measure kidney function. I have not shown any kidney improvement in over 6 months, so it appear my kidneys are the best they are going to get, which are working at about 10% and that is why I am on dialysis.

What on going treatment are you receiving for your vascultitus? I am not receiving anything to prevent it from coming back. Mine was caused by an auto immune disease. My body attacked itself and the antibodies are called Antineutrophil cytoplasmic antibodies (ANCA).

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I had acute kidney failure in 1998 and after dialysis and 6 plasma exchanges I have a good kidney function although if I have a flare of GPA the kidneys are always affected but with the correct drugs to sort out the flare I am ok again. Hope this helps Jude’s

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How long was it from when you had dialysis to when you no longer needed dialysis? What medicine are you receiving?

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While I was in Hospital about 3 weeks I have been on Azathioprine for 18 years plus prednisone and when in a flare Cyclophosphamide. I stopped the Azathioprine just before Christmas as my consultant thinks my GPA is in remissio but I still have blood tests and check ups every 3 to4 months. Hope this helps Judy

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Thanks for your explanation of the US measures of kidney function. Re. your last paragraph, I would just make the perhaps pedantic point that vasculitis is not caused by an auto-immune disease, it IS an auto-immune disease and is the direct cause - in your case and mine - of kidney disease. The underlying problem is that the cause of vasculitis is unknown, so it can't be cured but only controlled (i.e. put into remission) and that control works some of the time - with luck all the time - but sometimes it fails.

You ask about my treatment. When I was diagnosed with vasculitis (autumn 2014) and it was confirmed to be significantly active, I was immediately (i.e. on the next working day) put on a course of 6 cyclophosphamide infusions spread over 16 weeks. This was accompanied by prednisolone (steroid) tablets. My consultant explained that this treatment was (in lay terms) to hit the vasculitis hard and force it into remission.

On completion of the cyclophosphamide course, I went on to azathiprine tablets and was gradually weaned off the prednisolone. The consultant explained that the azathioprine was a maintenance drug to keep the vasculitis in remission, would continue for at least a year and possibly for life.

The azathioprine intially worked broadly OK. The vasculitis flared up once per year and each time, whilst continuing with the azathioprine, a course of prednisolone was used to damp it down again.

In 2017 the vasculitis flared three times. From this the consultant concluded that the azathioprine was no longer working sufficiently well. He has therefore switched me to rituximab. This was given by 2 initial infusions, and if necessary will be repeated after 6 months. I must now wait and see how well this works.

All this treatment has been accompanied by frequent clinic visits for blood and urine tests and review by the consultant or one of his colleagues.

I think a vital feature is that I have had the good fortune to be treated from the start by experienced vasculitis consultants. Here in the UK there are not many such people, and one can read many accounts on this website from people who have suffered from treatment (or lack of) by doctors who are not experienced in this disease.

Reading that you were diagnosed with vasculitis almost a year ago, but that you are not being treated for it, I wonder if you are in the same situation. Here the Helpline volunteers associated with this website would help you locate an experienced vasculitis specialist to secure an urgent appointment. I don't know whether they can help you with regard to the USA. I see that one of these wonderful people - Keyes - has replied to you on a parallel thread, so perhaps she will say if she can help. If not, I guess you are aware of the Vasculitis Foundation in the USA who may be able to help - vasculitisfoundation.org/ed...

I would just add - in connection with the question of taking immuno-suppressants if you have a kidney transplant - is that all the drugs I have described as treatment for vasculitis are drugs of this type.

Hope this helps.

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Hi jgold how did you understand that your vasculitis was flaring? From protein in urine or from Anca rising? My son who is only 12 years old has Mpa from March 2017. He's doing well but he is at second stage of kidney desease and I'm afraid about a flare because i don't understand if a cold or a fever could bea flare . .. it's all so stressful thanks in advance for your replay

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Hi Wizzi,

I was feeling sick for about 3 weeks. It kept getting worse. I felt hung-over and very tired every day. I thought I had mono, even though I have never had it before. I thought that because after a lot of sleep, I would feel better. Well as it turns out my kidneys were under attack and that is why I was so tired and not feeling well. Kidneys do so much more than produce urine. They control blood pressure, energy, filter waste, create red bloods cells, etc. I know more about blood and kidneys than I ever wanted to know. That is for sure! I finally went to the med center and they couldn't find anything wrong with me, but they took a blood sample. I got a call the next day that some of my numbers affecting blood vessels were high and I should follow up with my family doctor. She really screwed me out of getting my kidneys back, because based on my lab work and symptoms, she should have known I was in kidney failure. About 4 days later my gut looked like I was 9 months pregnant and I had gained 27 lbs. I went to ER and they ruled out all the most life threatening things by sending me through ultrasounds, CAT scans, endoscopy, chest x-rays, all while that the labs were reviewing my blood work. Well it came back that my creatinine and BUN were high and based on my symptoms they diagnosed me with vasculitis and admitted me from March 18 to April 15. They didn't know what type of vasculitis I had until they did a kidney biopsy. Once they knew, then I received Rituxan. I had over 85 PDF files of things they did to me at the hospital and that number does not include the daily blood draws to check my renal and INR. My body was a toxic mess.

Sending get well hugs to your son. I hope that my information helps him get help sooner than I did so he does not suffer from permanent kidney damage.

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Thank you very much. Your story is quite similar to my son's story. What i'm looking for are information relative to the symphoms of your next flares in the 2017 and before because my doctor is not clear about that.

How did you undestand that your vasculitis was camino back ?

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Hi Wizzi,

Most patients relapse with the symptoms that they had when diagnosed at first.

If your son starts to feel unwell with symptoms that he recognises then he should get in touch with his Consultant. I take it that he is on regular blood monitoring?

It might be an idea that o get some urine dipsticks as well as kidney problems manifest themselves first as blood and protein in the urine.

Hope that helps

Lynn

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Thanks Lynn,

My son is under the care of a good consultant and he has blood controll every two mounths. Unfortunately he still have protein and blood in the urine because he had at first a glomerulonephrite very aggressive. Anca are negative but MPO are still weak positive. And I dont' understand if he's really in remission or not even if he's good.

Can I write directly to you for medical data?

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Wizzi - Very sorry to hear about your son and that he has this potentially serious condition at such a young age.

In my case - and I think it's vital to understand that everyone is different - I know it is flaring because I get a vasculitic rash (pink spots) on one or both legs. Such a rash was my first visual indication of vasculitis (although I didn't realise it at the time) but the disease actually started many months - possibly years - before this.

It may be your son has no visible indications, and of course a cold or fever could be a consequence of the immune suppression of the drugs which I assume he is taking.

Is he under the care of an experienced vasculitis specialist, and how frequently is he attending clinic for his bloods etc. to be reviewed?

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Hi jgold,

at first he had acute kidney failure and a very little

pulmonary involvement. Ha had ciclofosfamide and high dose of prednisone. Now he takes Ramipril, Myfortic (MMF) and prednisone (decreasing). He is cured in a pediatric clinic (De Marchi) in Milan by a very good nephrologist

because his MPA had given him :-( a glomerulonephrite.

I undestand that I have to pay attention to the original symptoms (fatigue, anemia, mild muscle pain, vomiting) to prevent flares and organ demage. But it's very difficult.

this groups is for me very important and helpful

thank you very much to all of you

cinzia

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Thank you and yes it is an auto-immune disease. 3 of the 5 kids in my family have an auto-immune disease. My brother and sister both have Crohn's disease where their intestines are under attack. There are a total of 6 people in my family that have an auto-immune disease. 5 have Crohn's and I am the only one that got vasculitis. I am being treated by the Renal Associates of West Michigan. There is a team of about 29 doctors. I was on prednisone, which is an anti-inflammatory drug. The medicine used to kill the ANCA's was Rituximab and 8 Plasmapheresis, which is the removal, treatment, and return or exchange of blood plasma or components thereof from and to the blood circulation.

Creatinine should be between 0.50 - 1.10 and mine is 2.77

BUN should be between 8 - 20 and mine is 71

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I have just read the reply from Justjudes3824.

This reminds me of a friend on dialysis. Plasma exchange - I think just one - was prescribed for his particular condition and it had the beneficial effect of reducing his need for dialysis from three times per week to twice a week - a hugely beneficial change.

So perhaps this is something to enquire about - but you still need to get proper treatment for the vasculitis.

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I had 8 plasma washes in the hospital and dialysis. My situation now is that the ANCA are dead and I am in remission, but I require daily dialysis to live because my kidneys are only working at 10%

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Hi cpierce1016,

Rituximab doesn't kill off ANCA, it targets the B cells and helps to switch off the auto immune response that targets the lining of the blood vessels ( Vasculitis essentially means inflamation of the lining of the blood vessels ).

You can be ANCA positive and in remission but ANCA negative and have active disease.

Out of interest are you MPO or PR3 positive as they are the results of interest, not ANCA.

It doesn't sound like you will have any improvement in kidney function but the best person to advise you on that is your Consultant. Most patients are treated with immunosupressants for 2 years after they achieve remission to prevent a relapse. I share the concern that you didn't seem to have been treated for long enough.

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Thank you Keyes and that is my concern as well. I am not real sure my doctor has much (if any) experience in vasculitis. My last dose of Rituximab was in April 2017 and the only medicine I am currently taking is for blood pressure and a pill 3 times per week called Bactrim to help my body fight any infections because my immune system was suppressed when they were treating my ANCA's (or in other words the bad B cells) that destroyed my kidneys in less than 3 weeks.

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