Our Daughter has been recently diagnosed with Lupus and some other rare immune diseases. She has been on 37mg but weaning down to 15mg presently of prednisone. She also takes Plaquenil and Azathioprine. We have been told by her RD to stay at 10mg of prednisone and then wean slowly.
Can anyone tell us of their remedies or things to be aware of. Amy is 11 and at present the Lupus/ and Arthritus are secondary to her blood disorders, as she is presently not in pain but risks bleeding problems and infections. Some of the info says to take 5mg in morning and 5mg late afternoon, then go 2.5 but other info says to go every other day?
She also is getting teased badly at school about her moon face Can anyone advise how long this takes to go away. She has put on 15 pounds since Feb of this year but she has an enlarged spleen so excercise is limited as well as an encreased appetite.
Has anyone come off Prednisone and stayed on Paquenil?
Any thoughts would be greatly appreciated.All the best to you all too with what you all are going thru and any info I have I will pass on also.
private note Its been very bad here these last few weeks re Amys illness /husband got demoted at work due to hospital visits with our daughter/other family stuff
but today I drove thru our local coffee shop and the person in front of me paid for my cofee. She didn't know me she didn't know how much I needed that boost of "hey its going to be alright" So I mustered up my courage and wrote this note. I paid for the guy behind me too
Once she gets down to 10mg or less of prednisone. Most of the ugly side effects of the drug will begin to disappear. It takes a month or two to lose the moon face. The Rheumatologist probably doesn't want her to be on prednisone for long, as it can stunt growth, but discontinuing it too soon would also be a mistake. For now, she needs it. Have you and the Dr. considered biologic agents like Remicade and Humira? I know of a girl who is on Remicade for Crohn's disease it has worked wonders for her. She's back in school, etc. She's 10 but has been ill for 3 years. What blood disorders does your daughter have? What symptoms did she experience? How long has she been ill?
Take care.
Good Luck!
Ive only had RA for 2 years so i cant be much help with the meds like some of the other senior members, but my mom has Autoimmune hepatits w/cirrisos, and was on pred, for a year, it realy didnt help her at all, but she has been on azathioprine for 13 years and it has literally saved her life. Try to keep your chin up, my husband and I nearly lost our son 3 yrs ago to an illness, thankfully he recoved, but has many developmental delays from it, when the time seems right(i know thats an odd thing to say) youll be able to look upon this situation and know that what was supposed to happen has and is takeing place and that your fight in you and your daughter is just as strong ever!
My prayers and thoughts are with you! DC
The prednisone can have some bad side effect, like the moon face, but as you reduce the dosage that should disappate. I've been on a low dose(4mg) after weaning down form a larger dose for 2 years without any horrible side effects.
Kids are amazingly resiliant. I work as a special ed teacher and some of my students have diseases that are formidable:cancer, spina bifida, JRA to name a few. They amazingly do well, participate, and graduate with little fuss if we treat them like everyone else.See if your daughters' school can give her some support through the special ed department or through a 504.
Thank you for your responses. Its good to know the moon face will be going soon!
Thanks for your support emmasa01-Our doctors haven't mentioned Enbrel yet which I think is the same as Remicade here in Canada. Our Aunt in Rochester is on Remicade for her SyArthritus. Its cleared her Psorasis and has been a god send for her Arthritus.The Plaquenil and Azathioprine are keeping the pain and inflamation at bay presently for Amy. She has started taking Folic Acid everyday and it has helped with the hair loss from the lupus.
Amy's blood disorder seems to be in the forefront first. She has Evans Syndrome /Alps as well as SLE lupus. This means she had critically low platelettes, red blood cells and white also. The Alps has something to do with her lymphocytes (they won't die off)and lymph nodes( they are enlarged) Her nutraphils are low and cause her to be susceptable to infections.The prednisone brought her counts up to tolerable levels but as she is weaning off the steroids her counts seem to be in flux.
She became ill in Jan06 with nose bleeds/ teeth bleeding on brushing, bruising and was very pale. We took her for a blood test to see if she was anemic and our Ped found her spleen enlarged as well as criticall low blood counts. We almost lost her and we didn't even know she was ill. She was hospitalized at our Childrens Hospital and luckily diagnosed very quickly. I have learned from reading this message board that a lot of people have that hurdle to climb.Amys medical history was reviwed and a possibility was that a trigger to her blood disorder could have been a vacination she rec'd a few weeks before(hepB which is mandatory here in grade 5 and given in classrooms)
I'm sorry desertchild to hear about your son. Amy was a premie and had a speech problem called apraxia which years of speech therapy has helped but it still affects her school work. But your right-- at that time we thought it was insurmountable --little did we know what other families are going thru or what was in our future.
Like lindaK said kids are resiliant. She has been put on an IPP program at school because of her absences and because she can't partake in all her gym classes. She has a giving spirit and always looks out for others. Right now she is organizing a garage sale of her stuff to raise some money for the POKE Boxes at the Childrens Hospital. The lab in Hemotology/Oncology gives out stickers and small goodies when the kids have to get needles or poked(aspirations)--like bouncy balls/bracelets etc but its always low or empty. So Amys going to get some goodies with her garage sale money. It helps to keep her focused. Some days are hard, some days she wears a mask but Mothers day was awesome. Heres to more awesome days for you all. Thanks for listening and all your messages help me to stay focused.
I am really sorry to hear about your daughters illness. My experience with pediatric patients is that it is the parents who have the most difficult time. Kids adapt but the parents can never stop the feelings of fear, worry and anger. My heart goes out to you and your family. Just try to make each day special, read as much as you can about her disorders, and ask lots of questions.I am currently off prednisone and still on plaquenil. I am doing much better and since I have been off...my moon face and body swelling has gone away. I am Bordeline for Lupus. The Rheumatoid Arthritis is my real PAIN.
My Lupus has caused minor problems...but when I was weaning down it was a dose of 10 mgs to 5 mgs every other day. Maybe you should ask her Rheumy how the doses should be done. Especially since she has an underlying medical condition other then the lupus.
My son has Sickle Cell Anemia...we have gotten him tested for JRA and Lupus. He is clear of both. My husband and I know very well what it is like to loose a promotion. I did, they told me it was because of my attendance, Yet my work was super. I bust my butt to come in...work late, yet...that is not looked at...i was passed over for someone who's work is less complicated and got here after I did.
It hurt...but...I figure...my son, my health, and family mean more then the promotion. It has been a blessing in disguise.
I don't get it...these jobs know without the income...we can't take care of our families...I went so far as to ask my supervisior...what he woudl do if he was in my shoes. He said...He doesn't think he'd could have the strength and grace to handle two sick people in a family and still come to work.
My husband and I are going through counseling, our marriage has been tried and tested so many times. But we keep praying and seeking the best medical advice we can for our son and myself. And post here as much as we can.
They may not always have the answers...but they have great, loving hearts at this website...and try to get you to the best information they have.
I pray things get better soon...Roblyn
Hope all turns around for your daughter soon. Don't give up.
Jan, I can't really help either, but I just wanted to say welcome and we are here if you need to talk.