new here sle/plasmapheris questions?

[JANFORAMY]

Hello
I am new to this site.Our 11 yr old daughter was diagnosed just this Feb with sle lupus and Evans Syndrome (itp/pancytopinia/aihi- blood disorder) Shes on Plaquenil,Azathioprine, folic acid for hair loss and we are presently weaning her down from her prednisone. I have come to ask about plasmapheresis and Lupus nephritus. Amy is going to Childrens hospital for a kidney biopsey in 2 weeks ( blood counts holding) and her Rhumy, Hemo and Nephrologist have mentioned Nephritus. I am jumping the gun but has anyone done the plasma cleanitizing? Her antibodies are running amuck.She will be starting back to school with a moon face and 22 lbs more than when she left and at 11 she feels her life is the pits right now. We bought a blow up pool and a big umberella and that has helped get thru this summer vacation. The drugs saved her life but the side effects have made me search for other treatments. Any input is greatley appreciated. I have read a few messages and life experiences and know I am in the right place as you all have great big hearts. Thanks in advance

[Debbie28]

Hi

Sorry to hear your daughter is having a rough time, I have SLE/MCTD/nephritis amongst other things, but I had plasmapherisis while I was an impatient in hospital, when I was quite ill, I had to have a line put in my leg (similar to that for dialysis) I had plasma treatment everyday for 5 days, I also had chemotherapy, I cant really say which has helped the most, but at present everything seems to be under control !! The only thing I would say is after having the plasma, I dont know if it was a reaction to that but I had a terrible flare with my skin, similar to hives rash all over my body, which was painful and itched when it dissappeared I lost the whole top layer of my skin, quite strange really! but that is not to say your daughter would experience this as everyone is different.
I am still on pred, azathioprine, etc etc.... but seem to be stable, on the whole considering it is quite an uncommon procedure I would have it again if needed.
Hope this helps a little

Good luck

Debbie

[sue90x]

Hi Jan,
Firstly please don't be afraid
I had 35 pheresis aged 22 for my only successful 31 wk pregnancy, shes now 18 and leaving for uni this Sept.
It really wasn't too bad, the worst I recall was the cold, a special fleecy blanket may be an idea, that she could choose herself? the plasma is frozen and it is a shock when it starts pumping through the body, and obviously you shake to warm up which makes you tired I always had lots of blankets and nurses rubbing my body to get warmer and I'd always fall asleep during too, its a long procedure, I had a femoral canular for one, the worst for me was it was stitched into place and I found it difficult to get about as I'm disabled on other side , but I was an in-patient throughout that one pregnancy, an elbow/radial for another and a subclavian for another It IS the friendliest ward department I've EVER been on and I've been a in-patient lots of times and worked on wards, the staff were fantastic as were other patients having dialysis, in truth I wish I could have a plasma exchange twice a year, just to keep things in check - like putting a vehicle in for an oil change.
Amy and you are bound to be apprehensive, try to turn it into an adventure, that she could write about for her return to school?
the weight is a problem I can't advise on sorry, I'm sure being so young she'll soon get back into shape, give her a hug from me and grab one back for yourself :hug:
all the very best to you and your family, please keep in touch
love and hugs Sue x

[JANFORAMY]

Thanks Debbie And Sue For Your Experiences They Were Very Helpful. We Just Saw Our Hemo Doc Yesterday And The Evans Blood Disorder Is Complicating The Lupus Problems. Amy Is Still Set To Have The Biopsy But Not Until Aug 30th Now. The Plasmapheris Is For The Evans I Think To Kill Off The Antibodies Attacking The Kidneys But I;m Not Sure After Yesterday Because They Say I Amers Has Nephritus The Plasmapheris Can Help That Condition Also. She Has To Have A Vacination- Numococcol Wrong Spelling To Help Her Fight Off Infections And Strep. They The Rhumy, Hemo And Nehrologist Have To Decide Vac First, Then Biopsy Then Plasma Exchange Or Ivig's. I Guess It Depends On Platelets Etc
I Ll Keep In Touch And Thanks Again For The Support

[Debbie28]

Hi

Glad you found the info helpful, keep in touch & let us know how things are going.

Good luck

love n hugs

Debbie