Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi my name is Jennifer and I was dx in June after a sever flare that is still active. I was healthy one day and a very sick person the next with symptoms that were strange. After seeing a dozen specialists I was finally told that I have lupus and sjogrens. Right now my organs are not involved and the only complication that I have had is pericarditis that does not seem to want to go away. Right now I am taking Plaquinil, prednisone and colcry. My Rhuemy wants to start immuran but every time we try I get some kind of bug ( I have 4 kids that bring everything home) I am sick of this flare already and so deserve a break.
I am really nervous about starting immuran being that I do have kids that bring home a lot of germs. If anyone can give me their experience with this drug.
How do you find a balance with having to care for your family and yourself. This has been the hardest thing for me to deal with.
Brainfog??? WTH is is and why does it happen? Does immuran help the fog?
Sorry so many questions but still trying to wrap my head around all this and looking for ways to deal with my life with lupus. Thanks for listening;
I am really nervous about starting immuran being that I do have kids that bring home a lot of germs. If anyone can give me their experience with this drug.
How do you find a balance with having to care for your family and yourself. This has been the hardest thing for me to deal with.
Brainfog??? WTH is is and why does it happen? Does immuran help the fog?
Sorry so many questions but still trying to wrap my head around all this and looking for ways to deal with my life with lupus. Thanks for listening;
I don't have full blown lupus, I have mixed connective tissue disease....I have symptoms from lupus and rheumatoid arthritis and maybe scleroderma?
Imuran was one of the first meds they put me on after the pred and plaquenil, I didn't have any noticeable side effects, but it didn't do anything for me either. I hope you have better luck with it.
Beth
Welcome , wont be much help on the Immuran side of things yet.. may have to take it up at a later stage.. Sorry things are a bit challenging at the moment... Hmmm the joys of Lupus.. There is a wonderful lady on the boards that has just blogged about the FOG... I am sure Mar will post you a link.... He He I'm not really computer savvy to post it yet.. I hope you keep well, n the kids keep their germs to themselves when you start Immuran. You are amongst some truly wonderful and inspirational people here. Best wishes... S
Your story sounds similar to my own you are like my twin. I was also diagnosed in June and we just happen to both have the same name. So welcome!! I do not have experience with immuran but have been on enbrel, plaquenil, and also remicade...all of which have been linked to lowering your immune system. It can be difficult to avoid germs unless you live in a bubble (which I have considered) but having children can be even more difficult especially if they are school age. I would make sure that they understand the importance of washing their hands and make it part of their routine first thing when they come home. Also I would carry around some antibacterial spray/gel and have them use it before they get into the car if you pick them up. Germs are unavoidable unfortunately but I do hope that you are well enough soon to start your treatment and my fingers are crossed that it works for you!!
Hugs
Jen
I totally understand the brain fog. It's pretty debilitating at times. I am going to try Plaquenil. How are you doing with the Plaquenil? Any problems? I'm kind of nervous about taking it because one of the side effects is hair loss and I already have that.
It's really hard to juggle work, family, and our diseases. I just try to get as much rest as I can but some days it is really hard. I've had to really give up a lot of control and let my husband do things or they just don't get done.
Don't be afraid to ask questions. I know I am too!
Good luck to you.
I've been dealing with my lupus for just over 1 year now. I'm on plaquenil, lyrica, and tramadol daily. My symtoms are joint pain/swelling and the wonderful face rash. My next step is methatrexate or imuran. I have a 3 yo who is daycare d/t my disease and working two days per week as a nurse. For me putting off those meds is a must d/t the risk of infection. With your pericarditis, I would research the risk the imuran will have. An infection of the heart isn't easiy to treat especial when your immunosupressed. Discuss other options with MD and then weigh pros and cons.;-)
I'm still have a real hard time juggling work and family and everything. Right now I wish I could tell you how to do it, but to be honest I'm still trying to figure things out.
Brainfog comes with the disease. I sometimes feel like I've went from a smart, educated woman to a crazy forgetful woman. It hard, but reading and puzzles keep you mind sharp.
I really hope this helps. If nothing else, it let's you know your not alone.
Sandy, the plaquinil was a HUGE help to me. It took the edge off the flare. I couldnt even get out of bed and it helped me to do that. I was a little afraid of taking it but it worked almost immediately for me which is weird cause they said it would take months.
I am not sure that pericarditis is an infection. Its just inflamation. Its a small pocket of fluid in the sac around my heart. I have a repeat echo on Tuesday to see if it is gone. I am very concerned about immunosuppresnts because of my young kids. I asked about MTX but my rhumey told me that the new meds have less side effects. I think I am going to ask him again.
You guys are all really great with your messages, support, and well wishes. Thank you!