how long one should be on maintenance doses beyond remission

[nagesh]

usualy how long one need to be on maintenance doses of pred,azoran,bactrim beyond the remission ( no symptoms) when all the lab tests are ok.
in my 15 year old sons case diagnosed in jan 09 after 6 monthly ctx infussion his anca came negetive
continued with azoran , pred slowly tappering and bactrim now it is almost 27 months over
still he is on pred 5 mg ,azoran 100mg and bactrim twice weekly i want to make sure doctors are not
over treating him

[pberggren1]

If he is sympton free then I would think that he could taper off the aza and pred. My doc will put me on aza in about a month or less and says he wants me on it for about 18 months give or take.

[Jack]

If symptom free and bloods all ok then the tapering should continue until he is free from medication. The time scale for the pred taper depends very much on how well the body recovers from taking it.

[elephant]

I was told around two years of being on medications and then wean off depending of course your not flaring.

[nagesh]

thanks elephant,jack,pberggren for the replies,as per my research in net and vf site etc if no symtoms pred will be tappered completely with in 6 to 12 months,
but, the rheumatologist treating my son is not convinced and says he need to be continued on pred 5 mg, he dont want to take the risk of flare.
i live in India there are no wegener specialist here.bit worried which is correct

[Sangye]

Nagesh, has your son tried tapering below 5mg to find out if the Wegs activity increases? If it doesn't they should not be keeping him on it. He would have to taper very very slowly because he's been on it for so long. I think you have to balance the risks of possibly having another flare with the known risks from staying on pred. And, he can easily flare on 5mg pred. I wouldn't consider that a protective dose at all.

PS Don't let the doctor tell you 5mg is not a risk because "it's what the body makes on its own."

[bipinder]

dear Nagesh,

I know my doc is one of the best in India, His name is Rohini Handa. In india we should consult a Rhemutologist,.

Can me if u want 2nd opinion his no , my no is 09811168675. Dr. Handa is very busy and u get an appointing on after a week
He is a wounder human being. The best Human being i have a ever come across and above all is is not money minded at all.

Trust He is the Best .

Regards

[nagesh]

thank you very much for your concern towards a fellow WG,Very glad to know about Dr Rohini Handa you are lucky to be treated by him. since, we are in bangalore it would be difficult for me to consult him at this juncture, let me plan after some time, i may require your help at that time
Recently, i came across one lady with WG in bangalore she is also treated by the same Dr Ramesh jois rheumatologist who is treating my son . her husband works in jet air ways he was referring the name of Dr Rohini handa and he wanted to have consultation when he goes to delhi in fact i had asked him to show my sons reports also and take his opinion.

now, the issue is
my son master Nischal diagnosed in jan 09 after 6 monthly ctx infussion his anca came negative.then continued with
azoran 100mg,
pred very slowly tappered from 40 mg now on 5mg
and bactrim weekly twice

it is almost 27 months over since diagnosed and in remission for past 20 months ( no symptoms)
his all blood reports are ok
i consult the DOC once in 3 months during the past 2 consultations he hinted that next time he will consider
tappering pred further but even this time also he did not do and asked us to continue with the same
pred 5 mg ,azoran 100mg and bactrim twice weekly . as he does not want to take the risk of flare.

my worry is in most of the web sites it is stated pred will be completely off by 6 to 12 months when there are no symptoms and azoran for about 18 to 24 months i want to make sure our doctor is not over treating him

one more thing i want to say i became life member at vasculitis foundation and also i persuaded our Doctor to become
member of VF he obliged and became member i am realy greatful to him.
my interest is he should access all the latest developments in vasculitis at the earliest so that he can help us in a better way

[elephant]

That is wonderful to hear that your doctor supports you. What a great person and doctor to want better for you and his patients! So glad your son is doing well.

[jeriorleans]

My son, age 13 at diagnosis was only on predisone for a year. He was on cytoxan for 4 months than changed to methotrexate. HIs doctor says that the goal is at 2 years to be drug free. On a side note, the only time his ANCA was negative was when he was on cytoxan. He has had blood in his urine for over a year now and protein off and on. kidney doctor still finds it a mystery.