Does anyone have microscopic polyangiitis

[tamidi]

[LynneJ Vasculitis UK Volunteer]

Hi tamidi

I have MPA. I was diagnosed in 2010 and am in remission (with the help of a maintenance drug) My story is on my profile. If I can be of any help or you just want to chat please message me.

Lynne

[tamidi in reply to LynneJ]

Hi Lynne.Thank You for answering to me.My daughter is on Cellcept.Pleas can You tell me what is in Your case term remission.My daughter have clear lung,kidnay have all function in normal rang,but she still have 660mg in 24h urine and 15 rbc.I hope that You are in good condition.My daughter go in school.She is ok if you see she You will never sad that she is ill.

Tamidi

[LynneJ Vasculitis UK Volunteer]

Hi again

Have you looked at the Vasculitis UK website. There is a lot of useful information there. The address is vasculitis.org.uk/

Lynne

[tamidi in reply to LynneJ]

Yes,i read everything.Thanks.

[John_Mills Volunteer]

yes there are a few people with MPA in the group and has Lynne has said the website will give you some useful information.. if you are from the USA or Canada we maybe able to put you in touch with others who have MPA.... we have just read your profile and 10 years old is very young to have MPA but reading your profile it sounds as if your daughter is receiving the correct treatment... you can message us or write an email to [e-mail] if you think we can help..

take care

Susan and John

[tamidi in reply to John_Mills]

Thank You for answering to me.I m from Bosnia in Europa small country.DR.sad that she is 1 in 7000000,she is a child and she had to antIbody GBM and MPO.I have been read everything,all article on internet,but i would like to hear real people toking about MPO.

[John_Mills Volunteer]

Well Lynne has MPA she will be more than willing to talk to you.. also I know of at least two other people here on HU who have MPA who would be happy to talk to you. John has Wegeners Granulomatosis and WG and MPA are very similar sometimes it is very difficult for consultants to tell between the two. The treatments are more or less the same.

[tamidi in reply to John_Mills]

I know many things about this diseases,but I m confused about term remission.Did John get into remission and what that means.My daughter have antibody negative from 02.2012.She has been diagnosed 09.01.2012.We get diagnose very quick,for 15 days.We are happy about that,but also sad for such diagnose.But life is going on.We must fight. These days my daughter drinking tea from homeopaths.I'm ready to try everything to get rid of MPO.I 'm considering the possibility to go in China in clinic with TCM.Did anyone have that experience.

[LynneJ Vasculitis UK Volunteer in reply to tamidi]

I am in remission and have to take a drug (Azathioprine) for 5 years and then see if I am OK without it.

I went into remission straight away after treatment. It took about a year. I have been in remission since then.

But put simply, as I understand it, it is my body fighting itself and this happened after I had a bad virus so I think I should be OK now.

I don't think it goes away like a disease, I think I will always have the chance for it to come back but by staying as healthy as possible, plenty of sleep and gentle exercise and avoiding people who have illnesses I feel I will be OK.

John will tell me if I am wrong.

At least you will know what to look out for if it shows signs of coming back and can get treatment straight away.

I do think MPA seems have better recovery rates than the other forms of Vasculitis and I will try to find out about the recovery rates for children it might be that children will recovery completely as they are still developing.

The only problems I have are that I have nerve damage in my feet that is improving gradually with exercise and I still get tired but not as much as before.

How has it affected your daughter?

I hope you can understand this as I have put it as simply as possible.

Trust your doctors it sounds like they know about it.

I don't think alternative treatments will help as they try to boost the immune system and that is the problem our immune system is too good but that is just my opinion.

I did not like taking drugs but have had to accept that I need them.

Things do get better but very slowly so don't give up and have patience.

Good Luck

[LynneJ Vasculitis UK Volunteer in reply to LynneJ]

I forgot to say remission means that the immune system is working normally with the help of drugs and so the blood vessels do not become inflamed.

[John_Mills Volunteer]

Hi Tamidi - john here.

There are 2 types of remission. The first is when you take the drugs and the symptoms go away, so this is drug-induced remission. Usually you have the powerful drug to start with - the cytoxan (that's the US name, we call it cyclophosphamide) which brings the disease under control. Then you have the maintenance period, which may go on for years. This is usually using low doses of prednisolone (prednone) with an immune suppressing drug like mycophenelate (Cellsept). After a long period when there are no signs or symptoms of the disease and test results are OK, the drugs can be reduced to zero. This is then Full remission.

Sometimes the doctors reduce the drugs too quickly and the disease soon returns. If it does return - what people refer to as a "flare" or what the doctors call a "relapse", there is a new drug called Rituximab which is very effective. The disease may go away for years, but you can never be sure that it will not return.

Your daughter is only 10. New drugs keep being developed so it is very likely that better treatment will be there in future if she needs it.

MPA is an auto-immune disease for which there is no absolute cure. Unfortunately, homeopathic and Chinese remedies will not cure it.

John

[John_Mills Volunteer]

Hi Tamidi,

It seems to me that Tea has had the best treatment for MPA. I cannot think that anyone in the UK would get better treatment. I do understand that you feel alone with this problem.

Why is her doctor not satisfied? Do you mean he wants to start the treatment with the cytoxan again? What dose of Cellsept is she taking?

John

[tamidi]

Yes.he mean cytoxan.She taking 750mg+500mg every day.I didnt understand him.He talk about protein in urine.

[metalback]

Hi Tamidi

so sorry to read about your daughter. I have had MPA for 4 years and as John says it is under control with drugs. It is a rare enough disease here but to be in a small country you must feel very alone but we are a friendly group and will try to support you from a distance.

It sounds like your Dr has followed the normal practice with cyclophophamide then onto steriods and Azathioprine. And as Lynne has said keep taking the drugs and cope with fatigue and it stays in remission, hopefully. As yet I dont think there is a cure so alternative therapies wont help, but your daughter is very young and maybe with medical developments she one day could have a cure. those of us older ones just hope it stays in remission and we stay away from infections.

[tamidi in reply to metalback]

Hi metalback,

thank You for answer.I m really sorry to hear that You also have MPA.

Yes,my Tea is young,very young for MPA.It wasn't enough to have P ANCA,she also have GBM antibody.

Dr said to me 1 in 7000000.Like in the lottery,Tea win and get MPA and GOODPASTURE SINDROME .I don't believe in medicine to much,especially in this case (autoimmune disease).If they don't know cause,how they can help us.

Thank God that there is such medicament like steroid and immunosuppressants,but what after them.

Thank God,she is good,she is going in school,and she will always be good.

I think that,and I believe in that.

I hope that You and all others with MPA will be out of hospital,with Yours families.

Happy thoughts make people happy and healthy.

[John_Mills Volunteer]

Hi Tamidi,

I have spoken to Dr Paul Brogan of Great Ormond Street Children's Hospital in London about Tea. He is the leading expert on children's vasculitis in the UK. He confirmed that protein in the urine is not necessarily a serious problem in someone who has had kidney damage. You did not say if Tea has had a kidney biopsy. That is a way of finding out how much permanent damage has been done. He suggests that the doctors might carry out another kidney biopsy to see if the disease is still active in the kidneys before starting the cytoxan again. Below is a copy of what he said:-

Dear John

you're absolutely correct and proteinuria can be a consequence of damage as well as disease activity. It has to be taken in the right clinical context but if all the other clinical features were not suggestive of vasculitis, and this was just proteinuria, then it could be due to glomerular scarring and hyper filtration. If there is doubt, then one option is to repeat the renal biopsy before embarking on more aggressive immunosuppression.

Paul Brogan

I hope this helps. Please feel free to share this with Tea's doctors. I'm sure Paul would be very happy to discuss her case with them if they wanted to do so.

Best wishes again at this worrying time

John

[John_Mills Volunteer]

Hello again Tamidi,

Is it possibe for you to scan the translation of the discharge papers and send them by email Or if not it would have to be by post.

John

[tamidi in reply to John_Mills]

I have all papers already scan.Please send me Your e mail.I will send You all paper,some of them are not translate, but Dr can see lab.test in them.

THANK YOU FOR EVERYTHING

[John_Mills Volunteer]

Our email address is [e-mail]

I will deal with the papers as quickly as possible.

John

[DuncanC]

Hi there Tamidi

I cannot add anything to the excellent advice above, but just to give you some moral support in that my son also has MPA, he was diagnosed last December when aged 14. There are several others on this forum also with children with various forms of vaculitis. Vasculitis UK (see the Route Map on their website) has all the available information, and I believe you are in touch with the right people. However - the information and treatment for children is the same as for adults.

There is I am afraid not enough data for parents like us to know how things will turn out for our children. MPA does seem to be one of the more controllable forms of vasculitis, my son has responded well although he has only 40% kidney function (and yes, lots of protein in the blood, though this as such is not a problem as long as the kidneys are still doing their job) - he is playing this term for his school's rugby team, and last term went on a school trip to Morocco (a few sleepless nights for his parents there, I can tell you, though he was absolutely fine). Fatigue (extreme tiredness) can be a problem, in which case we make sure he gets lost of rest for a few days until feeling more energetic.

I dont recommend you get side-tracked by alternative therapies. Eating dried panda's ears or whatever wont help - there are no miracle cures, and you need to focus on what truely does help. Along with the drugs, your daughter needs a calm environment to recover and heal - lots of rest, water and a healthy diet (no salt, for her kidneys!).

Let us know how things go!

All the best

Duncan

[tamidi in reply to DuncanC]

Hi Duncan.

Thanks for Your answer.I m glad that your son is doing well.I went 10 days ago with my daughter for check up in hospital.Her ANCA are negative and proteine in 24 h urine become 115mg(normal <150mg).She is without any sings of MPA.I hope that our children will be OK.

All the best.

Tamidi

[Rod-J]

Hi, I had MPA diagnosed when I was 16. This was 30 years ago. Unfortunately due to a slow initial diagnosis and a number of flare ups my Kidneys became too damaged and I needed a kidney transplant. (This was 21 years ago.) I've been fine ever since. I now have a family with 2 teenage kids of my own. (The anti-rejection drugs for transplantation are similar to those that may be used to maintain remission). With hindsight I'd say pay close attention to any symptoms of flare ups and if there are any get diagnosis and treatment as quickly as possible.

Good luck.

[tamidi in reply to Rod-J]

Hi,

Thanks for Your answer.I m happy for You that You have children.I hope that mz daughter will have family one day.She still to young and she dont know anything about MPA,only that she will must do check up for anca all life.Only that.She is eating without salt,small portion of food.She is ok.Her lung are OK.

.I went 10 days ago with my daughter for check up in hospital.Her ANCA are negative and proteine in 24 h urine become 115mg(normal <150mg).She is without any sings of MPA.I hope that everyone with MPA will be OK.

All the best.

Tamidi

[jeanas]

My mother age 66 was just diagnosed with microscopic polyangitis. They are treating her first with a very high dose of prednisone. She was in stage four kidney failure. I am wondering what experiences anyone else has had with this rare disease and what her life expectancy may be. I am very worried.

[jeanas]

My 66 yr old mom was just diagnosed with this. Her kidneys are in bad shape. She is going on 3 days of prednisone treatments them a kidney biopsy. I was wondering what the life expectancy for this disease was and any other information would be much appreciated. Thank you.