My goodness, you have been through the ringer with those doctors. To get right to the point, YES, blood tests can fluctuate with lupus and can change to negative after you've been on treatment for...
I wonder if this sounds familiar to anyone because it's nothing like I've ever experienced or read about before.... I've been having this pain in my upper back on the left side. It's kind of a dull...
We're thinking of you too, baby sis, and your sister and your whole family. Lupus is hard to understand even when you're dealing with it personally, so it's that much harder for others to get it. It...
I'm so sorry you're going through all this, Barb. It is so hard to understand, and I can't even begin to imagine it. My symptoms and disease are so very minor in comparison that it really puts things...
Do any of you experience itching down inside your joints when they're inflamed? My hands have been achy and my knuckles really sore this winter, and sometimes (usually at night), the knuckle joints...
What are the benefits of taking vit. D that you've read about? I think most lupus patients who take it do so either because of a deficiency they have due to the disease process, OR to prevent a...
Thanks Ginny, I appreciate that. :) I went ahead and enrolled with Humana since today was the last day, but would still like to hear other people's experiences with it. I think I will have the option...
Well, I'm kind of running late on this since it's the last day to enroll, but... I'm wondering if anyone has any experience with Humana insurance? I'm looking into their PPO Medicare Advantage plan...
I've also noticed a lot of people with autoimmune diseases have low vitamin D, especially people with lupus who have to stay out of the sun. But apparently there is something about the disease...
Has anyone experienced this? At night, I get really cold, sometimes so cold that turning the air up to 80˚F and putting on layers of sweats and blankets doesn't help. A few times, the only way I...
This is a good article about a doctor in Canada who was diagnosed with lupus even though her ANA and other blood work was negative. She decided to speak out and try to raise awareness....
This is really interesting. I also had a lot of strep throat infections as a child, and I just read the book In Search of the Sun, and the author mentioned that she had strep a lot as a child too....
I have something just like that on my thigh too. It's been there for quite a long time now (no idea how long, though). It's sort of on the top of the inner thigh. I wonder what it is! There are some...
Lynn, I'm sorry you're having to deal with a new doctor who doesn't recognize your diagnoses. Does he have all your records and test results from your former doctor(s)? And do you have copies of them...
I haven't been here in the past few weeks, so I don't know specifically what you were dealing with, but it is always good to hear a good report. I'm so glad things are going better for you. :) It...
My eyes were already sensitive to the sun, but since starting Plaquenil they are even more so. I have to wear sunglasses all the time outside. Hope your eyes are feeling better today....
I'm not having it so much now (thankfully!), but during the fall and winter, I had a lot of hand pain, mainly just achiness and some stiffness. Sometimes I would run hot water over them, and it would...
This is something I don't understand... If the sed rate is what measures inflammation, and inflammation is what causes the pain in lupus...then why am I in so much pain if my sed rate is normal or...
That sounds like so much fun! Wish I could've been there. I'd love to see the pictures!!...
I wonder if it could be a rheumatoid nodule - the ones that are common with rheumatoid arthritis?...
Weleetka, if you would like to email me, I may be able to help you....
(((((Hippi))))) I'll be thinking of you! Hopefully, it will be over with before you know it....
This is a good idea to have everyone update in the same thread! The steroid shot I got a month and a half ago has definitely started wearing off, but generally, I've still felt better than before it....
I also take the fish oil pills. Like Gloryroad said, I don't know if it's helping my lupus symptoms or not, but it can't hurt, and it's also good for cholesterol and heart health and other things....
The Lupus Foundation of America has a good article explaining drug-induced lupus: Lupus.org —> About Lupus —> How Lupus Affects the Body —> Drug-Induced Lupus Apparently, it is a lupus-like syndrome...
What kind of specialist is the doctor you're seeing now? Rosie's suggestion is good, too, about writing things down. I need to try that too!...
Thanks, everyone. At least now I don't feel quite so alone with the shower fatigue. Normal people cannot understand it, and I really can't expect them to. Sorry it took me awhile to respond back to...
I am one of the lucky ones who has a great doctor, but I have heard many stories just like yours. You're so right, it shouldn't be like that. Do you have the option of changing doctors, or does your...
I also had low but negative numbers on most of the ENA antibodies (anti-SM, SSA, SSB, Jo1, RNA, histone, etc.) and wasn't sure if that meant anything (meant to ask my doc last time but of course...
That sounds like fun! Please share how it went when you all get back. :) I'm not really close enough to go and am too broke....
The fatigue is starting to get bad again, and the first place I notice it is the shower. It's been like that for years (before I knew anything was really wrong with me) — the shower completely zaps...
Awww :-) Congratulations, Grandma!!...
Thanks Rosie, that helps a lot. :-) I'm thinking of ordering some of this: SunGuard sunscreen for clothes. You wash your clothes in it, and it adds SPF 30 protection and lasts for up to 20 washings....
I'm so sorry you're having to go through this and make these decisions. It must be so tough. I wish I could help you but am new to lupus and don't know anything about Rituxan, but surely some of the...
I am new to all of this and have a few questions about sun protection... Does the sun still affect you even with sunblock? I wore SPF 70 all over and was out in the sun off and on for maybe 30-45...
That is great! I'm so glad you got good news. :)...
My doctor told me to drink water with lemon (or lime) juice in it, and it's kind of like a natural appetite suppressant. It may not be enough to curb the raging steroid kind of appetite, but maybe...
Awww, thanks for sharing the pictures. He is beautiful. I love those faces he's making in the bath. :)...
Congrats! I'm so happy for you and glad you're both doing well. I love his name. :)...
Thanks so much, Hippi, Babs, Rosie, Patty, and Ginny. You all are so great here. :) I never really thought of it in terms of grieving, but that's exactly what I started to do after reading that....
I don't know if I ever posted an update after my last visit w/the rheum. doc, but I've been kind of in shock. Eight weeks before, she had thought a vitamin D deficiency may be the cause of my...
I've used Refresh Plus for about 12 years because that was what the ophthalmologist recommended (back then). But lately, they don't seem to be doing the job, so I've been looking for others to try. I...
I'm sorry you're suffering with the pain so much. This is all still fairly new to me. I've had minor aches and pains all over for years, but the major joint pain started last fall when it started...
Hi, I'm fairly new here...I posted some questions a couple or so months ago but haven't posted in awhile, so you may not remember me. I recently got an 'unofficial' dx of SLE. The rheum. doc didn't...
Does the increased urination mean you're producing more volume of urine, or just more frequency, or both? I remember once years ago, I was unable to urinate and got those feelings of agitation...
Thanks for the replies, everyone. I think mine is probably not a lupus malar rash but have an appointment with a dermatologist next week to hopefully find out for sure what it is. If it's rosecea,...
These might be dumb questions, but I'm a little confused... Does lupus go into remission where the disease is not active at all for awhile and you can go off meds and are symptom-free during that...
Hi, I'm sorry you're going through this. Did your PCP say if anything else besides ANA was abnormal, and did he tell you how high your ANA is? I'm thinking he really shouldn't have told you that you...
Thanks so much for the reply and information about how your rosecea was different from the malar rash. I should probably go to a dermatologist next so if it is rosecea it can get cleared up. Another...
Hi Sussie, glad you're here. This really is a great forum. I'm new here too and am in the process of being diagnosed. Everyone here understands what you're going through and is so helpful. I hope you...