Couldn't believe it when your name popped up on my phone! I was hoping I'd get the computer on and up quickly enough to catch you, but too slow! You were here and gone in 3 minutes, takes me that long to get off the couch!
I think of you so often, and always send good vibes your way! I know that you are fighting one hell of a fight, and I'm always glad to see you surface from time to time!
I was taken off Enbrel the first of the year, told biologics were off the table for me, that was a crash, I still have my up times, but the down times are longer and more intense. Just got the Plaquinil script back filled in the mail yesterday, but trying to get to a higher plane to begin it!
Hello everyone, I have a question in regards to meds for either SSJ or lupus. I've been taking cellcept for 4 mos. for the lupus to help with my kidney damage. Since AI suppressants are supposed to lower the immune system resulting in lower WBC, why would mine be steadily increasing (3 to 7). My GFR is also jumping around from 29 to 42, 36 and back up to 42. I've read that after stage 2 damage cannot be reversed and GFR will not improve but can help slow progression. My bloodwork also show high inflammation. My doc couldn't explain either only that he believes it's helping the kidney inflammation??? I'm going crazy trying to come up with an answer. Any comments anyone would have would be very helpful. Thx!
assybish or Kaz would be the people who come to mind as far as asking these questions. There are several nurses here that may be of help to you on this as well.
Hope you get some answers and some relief very soon!
Hi SK, do I need to post my post somewhere else? Thanks for letting me know. Have a great day!
SK said:
HI maria,
assybish or Kaz would be the people who come to mind as far as asking these questions. There are several nurses here that may be of help to you on this as well.
Hope you get some answers and some relief very soon!
Do you see a kidney doctor? I have lupus and ssj plus a few more. I just started benlysta for the lupus. I have kidney damage and my labs are all over the boards.
Hi purplebutterfly, I have seen nephrologists[----one local a while ago and one @ Cleveland Clinic in 2012 when I went their to get a 2nd opinion cuz the local docs couldn't diagnosis. I just got a new rheumy in Pitts @ the Lupus & AI Ctr for Excellence and he recommended one affiliated w/their center but can't get for at least 2 mos. I may see if I can get an appt. quickly w/a local one.
Have you ever been on Cellcept? What doc prescribed Benlysta? is it helping. Can you give me a lil more detail on your labs...do they fluctuate month to month
Before I started the cellcept my GFR stated at 32 for over a year. Then next time it showed the dip to 29. Then 1 mo after taking Cellcept it jumped to 42?????????
Some use SS, or SjS, or some other abbreviation. Many are arthritic, like me, and as cafeful as we are, there are typos, especially like now using these tiny iPhone keys! Using this, with auto correct, anything can happen!
It's OK. Sometimes the members throw acronyms around and then I haven't a clue what they're talking about. Hope I didn't offend, I was more interested in what it meant and haven't heard it before and now I am informed.
SK said:
Some use SS, or SjS, or some other abbreviation. Many are arthritic, like me, and as cafeful as we are, there are typos, especially like now using these tiny iPhone keys! Using this, with auto correct, anything can happen! :)
LOL….USA Girl, I was half afraid I was missing something too. With the brain fog, I never know anymore!
Maria, I am very interested though…How did you find an AI center for excellence? Being in NY, I know there are some great places in the city but they aren't always easy to get into either. Do you mind keeping us posted on how that goes?
omg so many replies thanks everyone for ur input appreciae it. sorry took so long to get on this to reply but im alittle stressed cause i have to move and dont have much help so i cant to alot in one day i move on thursday and have till minday morning to move with very little help. but anyways here goes the doctor confirmed i do have sjogrens syndrome and i have a diagnosis of lupus since 2007. its just a whole new illness i have to learn and adjust to. but i been having the dry eyes for maybe 5years i think dry mouth occasionally but never payed mind to it thought it was normal. again thanks everyone for ur responses. gotta do some more packing chat later.
EnjoyLife, I thought I replied to your question below?
EnjoyLife said:
LOL….USA Girl, I was half afraid I was missing something too. With the brain fog, I never know anymore!
Maria, I am very interested though…How did you find an AI center for excellence? Being in NY, I know there are some great places in the city but they aren't always easy to get into either. Do you mind keeping us posted on how that goes?
