Hi to all i am new here but not to lupus

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Regular Member

Date Joined Jul 2009
Total Posts : 42
   Posted 7/9/2009 3:36 PM (GMT -7)   
Hi my name is  nona i have had lupus and its many related complications for about 7 years now,i just found out today that the stent that ws placed in my heart about 1 yr ago prematurely i might add i am only 43 is probably closed off i really dont want to whine but i dont know how much more i can take i used to be such a active person and now i have chronic autoimmune hepititis brain inflamation that causes seziures (no driviving anymore) kidney problems the  heart blockages scare the heck out of me!I take cytoxan infussion every 4 weeks remicade infussions every 8 weeks and all the steroids i can stand these meds make me feel very ill i am as immunosuppresed as you can get and its still not enough my family does not understand this disease as much as i have tried to explain i give up!I am just looking for others who understand and after reading some of the posts i know alot of you are suffering as much or more than me I am glad i found a sounding board even though all i did was complain the first time i introduced myself.I hope to find people to talk to before i go off the deep end thanks sooo much for listening.   

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 7/9/2009 4:36 PM (GMT -7)   
Welcome Nona! Your story resonates with so many of us trying to reconcile with a life turned upside down by this devastating illness! I'm glad you found this site. There are some awesome, compassionate, intelligent people who frequent this site. I'm sorry you are dealing with so much! What are the plans to deal with the closed off stint? I also did Cytoxan! YUCK! I'm pretty sure there are a few people who are currently doing Remicade. And MANY of us have a love/hate relationship with steroids!!!!! You'll find alot of support and friendship here. Hang around! God Bless ya, Judy

Forum Moderator

Date Joined Jun 2008
Total Posts : 1470
   Posted 7/9/2009 4:47 PM (GMT -7)   
Hey Nona! Welcome :). As Judy said, this is a great group...I hope you stick around so we can get to know you better. I completly understand your frustrations as will most people on here will! Keep us updated.



21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Regular Member

Date Joined Jul 2009
Total Posts : 42
   Posted 7/9/2009 4:47 PM (GMT -7)   
Thanks so much Judy I go in mon for chemical stress test to see about the blockage I guess we will go from there depending on the results .
I will definatly hang around I really need someone to chat with from time to time thanx agian and god bless you as well.

Regular Member

Date Joined Jul 2009
Total Posts : 42
   Posted 7/9/2009 4:55 PM (GMT -7)   

thanks judy and amy for the warm welcome I get stress test mon to see if stent is closed I will keep you updated .

I will stick around it is nice to have someone who understands the frustrations of this disease and treatment thanx agian god bless you guys           


Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 7/9/2009 5:39 PM (GMT -7)   
Welcome Nona,
This is indeed a great group. Everyone is so caring and understanding. Good Luck with the stress test!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

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