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Posted 7/22/2010 1:33 PM (GMT 0)
Hi healing well friends. I havent logged on here for a long time cause I forgot my password but today I remembered! It has been 4 years now since my lupus diagnosis and things still are not under control. I have been on cellcept for a year now but everytime I try to reduce my steroids lower than 20 mgs I have a flare up of symptoms. I get pericarditis and pleurisy a lot. I am just recovering from a current flare.

Anyway my doctor said that he is going to participate in a lupus drug study around November and wants me to try it, he said it shows good promise of helping patients get off of steroids which has been 4 years for me. I dont know if it is the new lupus drug that we have all been hearing about. Maybe this is the final phase of testing but I am hopeful and willing to try. Has anyone else here participated in a drug study before?

Posted 7/22/2010 3:31 PM (GMT 0)
Hi vanae,

Glad you remembered you password and found your way back to healing well.  I was diagnosed in March of 2009 and have been on a rollercoaster ride ever since.  I really shouldn't complain because I don't have all the symptoms as many of you have, but regardless, it all stinks.  I mostly have problems with the joints and can't seem to get off the steroids as well.  I currently take anywhere from 5 to 10 mg a day and my rhuemy wants me to get off of them, but I just can't seem to reduce down without having a horrible flare and I just don't want to live my life in pain.  I have two teenage sons that keep me hoppin everyday and I don't want to miss out on spending time enjoying life with them.  I'm tired of complaining and try not to, but of course, it's hard for them to understand how I feel.  My last one just graduated and is heading to college in a couple of weeks, and my other one attends a community college in our area.  This should  be a time for my husband and I to get back to doing the things that we love to do together, but I'm so afraid to plan ahead because I never know how I will feel.  I would be real interested to know what this new drug is all about.  Do you know the name of it.  I go to see my rhuemy in August and would like to ask her about it.  Well, welcome back!  Hope you have a pain free day.

Hugs and Angels,

Lynnette

DX - sle and carpal tunnel syndrome

RX - plaquenil, prednisone, etolodac, lisiniprol, hormones, lots of vitamins

Posted 7/22/2010 11:50 PM (GMT 0)
 Hi Lynette. Thanks for the reply. I was told by the doctors nurse about the upcoming study. She called me and said he wants me to do the trial and will have more information for me later. I dont go back to see him till August too so wont know more till then.

I also try hard to live as normal as possible and have a 14 year old daughter who is starting high school this year. She is always doing cheerleading and athletics and I have to miss lots of her sports cause I cant sit in the bleachers that long. Even that causes me to flare up and any exercise, sun, yard work, shopping etc... She wants me to take her to the mall shopping for back to school clothes and last year I made granddaughter go with her to pick out clothes then when she found what she wanted I went only to those stores to make final purchase but still flared up. I dont know why but physical activity really messes me up.

I used to be so active and walked 5 miles a day but now have to live a new normal but I am still thankful for my life and each day I wakeup and hear the birds singing,see my family healthy and together then life is good!

I dont have health insurance so we have the strain of paying for all my medical costs and a year ago I found out that I have a cholesteatoma in both ears which is a tumor that destroys your hearing bones. After lots of searching I have not been able to have the surgery yet. It involves at least 2 surgeries per ear. The first one to remove the tumor and damaged hearing bones. Then a second surgery at least 6 months later to repair the damaged bones and hopefully restore hearing.

Well thats a little update about me and its nice to meet you!

Posted 7/23/2010 4:11 PM (GMT 0)
Hey Vanae,

Well bless your heart.  I'm so fortunate that we have pretty good insurance and couldn't imagine not being able to take care of any of my medical needs when I need to.  Boy, do I remember and miss the days of daily exercise.  I used to walk every morning either with a friend or my dog.  We would go at least 5 miles and sometimes even in the dead of heat.  I used to feel soooo good after that.  Now I never know what I can accomplish daily.  My husband brought me a home a pedometer the other day so I'm trying to pay more attention to getting in more steps daily even if I have to walk around my house.  It is soooo hot here and my knees can't seem to take the constant jarring on the pavement anymore so I do the best I can to keep active.  But like you said, I try to remember daily about the good things that are happening in my life and not focus so much on the negative parts of this disease, although it can be real tough some days.  Keep me posted as to the study when you see your rhuemy in August.  Hope you have a real good day today!!

Hugs and Angels,

Lynnette

Posted 7/26/2010 9:56 PM (GMT 0)

Hi

I was diagnosed with SLE in the early 1980s.

I participated in a drug study for Rutuximab back around 1999. I was on approximately 15mg-20mg prednisone/day for approx 6years (with confirmed kidney damage and a hip replacment) after a 3 year good run. I was told at the time that if the drug helped and I became sick again that the company would be happy to treat me again for free. The drug is very expensive. The study drug seemed to help me to the point that I was able to taper off all of my immune supressing drugs and my labs were great. about 2.5 years ago I started another flare that caused me to have to go back on prednisone and then celcept to try and lower the pednisone. You all probably know that sometimes it is hard to tell what is helping and what is not. The celcept did not seem to be doing much so my doctor and I decided to stop it. Well anyway to make a very long story short, we contacted the company and they decided I had to pay for it and with no guarantee it would work again for me, I could not justify the huge expense. I was shocked! Do not trust these guys. When they want you to help them taht is the time to get their promises in writing. I am obviously very disappionted.

 My status now is that I am trying to taper the prednisone and having tough issues at around 7mg/day. I am a seasoned SLE patient and prednisone user. I found this website while I was searching for any new developments for we patients trying to taper long term use. So far just the standard same old stuff.

Good Luck

Troll       

Posted 7/27/2010 12:30 AM (GMT 0)
Hi troll. Thanks for your response. This disease is so frustrating. I have been on prednisone for over 4 years without being able to get off of them. I am still dealing with a current flare and had to move up my doctors apppointment to this Thursday. I am at 20 mgs of prednisone and 3000 mgs of cellcept along with colchicine and plaquinil. Since I dont have insurance I have to depend on patient assistance program for my meds. I think that if my doctor feels that this will be a good risk to take I am going to think about trying it since I am running out of options besides prednisone. I guess I am just trying to stay positive and take it one day at a time. Hope someday there is something that can really help us gain a remission state.  

Today is my 48th birthday and that is reason enough to be joyful today!

Posted 7/27/2010 12:47 AM (GMT 0)
Happy Birthday Vanae.
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