My daughter have MPA since 12.2010 She is now in drag induced remission.Her lung and kidnay has been attact by MPA.I'm scared of getting down medication.What if everything get back.Please help me and tell me how can I know that she has flare.
Sorry for my English.
Your English is fine, Tamidi!
I have MPA too, and am also in drug induced remission.
It is difficult to know when to worry and when to have confidence but I believe it is difficult to predict a flare, so you have to have trust that all will be well now that your daughter is in drug induced remission. It is excellent news that this remission has been achieved.
Your daughter's doctors at the hospital will be keeping a very close eye on her and doing regular blood tests, as well as other tests, to detect any inflammation in her body before it got to a critical stage.
Her doctors should also be asking her how she feels, as this will show if anything is going wrong. If she is feeling well and being regularly checked, then all should be well. If she is feeling ill and the doctors are still reducing her medication, despite this, then you should be concerned. Keep an eye on her and keep smiling!
Ayla
Thank You Ayla.
She is now on calcort 24mg second day and cellcept 1000mg every day.Her lung and kidnay are 100%ok.She is fine.I'm trying to be optimistic but sametime is hard.Did You ever have flare?I hope You did not.
No, haven't had a flare, thank goodness, though I do have times when symptoms return very slightly - my specialist calls it rumbling symptoms of MPA (I think he made up that description!). It soon passes and I am thankful I feel well pretty well all the time. I hope it works out the same for your daughter.
I am on 6mg prednisolone and 1500mg Cellcept daily. I had the usual cyclophosphamide and high dose steroids to start with, over two years ago, then stopped the cyclophosphamide and went onto a reducing dose of the steroids and the Cellcept after three months. It has taken two years to get the steroids down to this level.
Is your daughter very young? I would have expected her to be on a higher dose of Cellcept if she is adult (the usual dose of Cellcept is 2000mg a day for an adult). Is she feeling well? That, as I said before, is a good guide to how things are going.
Ayla
My daughter is 11.she had 6 pulses cyclophosphamide every 4 weeks for 6 months 3 pulses of metil and she start with 60mg of prednisolone.(72mg calcort).Afrer that dr.gave her cellcept 750+500.In 1.2012 after 7 months on cellcept he put she on 500+500 cellcept.(morning +evening).She has 45 kg and she is 152.5 cm high.
She is doing well.S
We spent all winter in ski resort.She was more active than other.Her dr.write medicine article about her if You send me Your email I will sendYou
Maybe You find samething interesting.
Your daughter sounds to be in good hands and getting the correct treatment. I am sad that she has vasculitis so young but so glad she has good care and is getting a lot better.
Yes, I would like to read the article. Thank you! I will send you my email address via private message to you.
Ayla
Only just found this and I'm similar to ayla. Diagnosed with mpa 5 years ago. Reducing steriods and on azathioprine. Also have little symptoms like nose bleeds and breathless but bloods are good. It sounds like your daughter is doing well with her medication keep a note of any symptoms to tell the dr when you see them. Good luck
i also have mpa your daughter sounds in good hands,I wish you all the best for her future.
I found out yesterday it runs in my family Dad side !
Am I having a 'Flare' ??
How Can I change my Hub
I would like to make contact with anyone who has MPA vasculitis. I am finding all of this a little isolating, anyone out there!!
