I, too, am sorry for not posting but this site has been a life saver for me! I'm having the worst flare ever after 20 years of having Lupus. Joints, heart, rash, lungs, clots....you name it. I have lost all of my hair and the only "fun" I'm having is I get to shop for scarves and wigs! I'm currently on Cytoxan, plaquenil, metho, folic, tramadol, vit D, prednisone. I have osteoperosis so bad that I have to watch the prednisone so in a month I'm going to do a Reclast infusion. The only thing is, this is dangerous with my brittle bones. It's not only the Lupus disease, it's the meds also! I will try to keep my posts going! God bless everyone and will keep everyone in my prayers View Thread
I'm having the worst flare of my life and have had one infusion of Cytoxan and within 7 days have lost 2/3 of my hair. Has anyone else lost their hair this quickly? I also take prednisone and methotrexate on the off weeks.View Thread
I am so tired of all my problems being blamed on menapause!! The sweating is horrific and the joint pain also. My PCP states "You know, you are getting older and more and more things will start to fall apart." The turd is 3 days younger than I! I informed him that I am the only one who knows my body and you may have a Dr. degree, but you need to listen to this "old" lady. Stick up for yourself and if your Dr. or Rheumy doesn't take you seriously, make it a point that you are in charge!View Thread
Had a wonderful Thanksgiving, but only 2 of my children were able to make it home. The standing all day and night took a toll on my legs, they swelled up to the point that when I took a step, my toes squished apart! You could not drag me out of the house on black Friday! Those shoppers are nuts! I stayed home and put my Christmas tree up. Hope everyone is in tip-top shape for the upcoming holidays, and for those who are having troubles, you will be in my prayers!View Thread
I am taking 50,000 BTU twice a week and I have my levels checked every three months. If there is improvement or if my levels are nearing normal, I stop taking it but still get labs every three months.View Thread
Lisa is right! Drink, drink and then drink some more. I used to get cramps up the fronts of my ankles (weird) where I couldn't stand on them. I would just have to lay there in tears and wait until they went away. Also, always have bananas on hand. My mom used to tell me to eat a banana every day, and you know what, the potassium does help with the cramps!View Thread
1. What state do you live in and do you like it? I live in Michigan just south of Detroit and I love the fall here but you can have the winters!
2. Age both actual and how old you mentally feel: I am 50 and mentally, I'm still a teenager trying to joke and pull pranks.= but physically, I have to feel 80. Joint pain usually knocks me for a loop. 3. Married/kids?: I've been married for 25 years and have four children, 2 boys 31 and 29, 2 girls 23 and 20. I also have 3 adorable grandsons 3,2 and 2.
4. How long have you had lupus? I was diagnosed 7 years ago, but probably have had it since my first son was born.
5. As lupus loves to throw a party, do you have any other autoimmune diseases? I have heart damage due to the pericarditis, blood clots, arthritis, raynauds, and have has ovarian and lung cancer. Everthing was localized so I was very fortunate. Having Lupus puts me at risk for Chemo.View Thread
I thought I was the only one with such pain in my feet!!! It feels like you stuck your foot in a light socket and it wakes me up also. I have no idea what it is, but like you state, there is nothing that helps it! Let me know if you get any suggestions. I mention this to my Rheumy and he states that it's the arthritis in my feet. I don't think so!!!!View Thread
I hear all of you! I get it quite often also. It's not only a pain in my chest but a pain in my butt too! I get more relief with a hot, wet towel than NSAIDS. I've tried prednisone, motrin, etc. with no relief. Once you get it, it seems like you start getting it more often. At times, can feel like a heart attack. One of these times, it may be and all I do is get a wet towel for it View Thread