So sorry to hear about your daughter. It is good she has a good support system like you in her family.
I have been doing a lot of research about Lupus, and having found anything that specifically said that it is progressive. Most things just say that it is different for everyone.
I am also not sure if your body is attacking itself all of the time or just during a flare. I think that it is just during a flare, because many resources say that you can put lupus into remission, and this is the goal of some medications like Plaquenil.
But it seems that side effects from some of the medications can be progressive into new medical problems.
It is so different for everyone because the body attacks itself in different ways in different people, and some more often than others.
I also have kids, 4 of them, :-0 ages 6,5,3,and 1. I am 31.
I am waiting to get back to America next month for an actual diagnosis of Lupus, but I really feel like I have it.
But I have been having the burning also. I first notice the skin sensitivity in that area, and it seem like when I am in a really bad flare it starts burning. The other day my neck, face, and ears felt like they were on fire. My face, ears, also got bright red, and the malar rash was really red. But I have also had the mild burning with no color change in my skin.
(I am a nurse) And I checked my own blood pressure and it was up from it's normal range. (Not sure how that was exactly related to the burning,but it was at the same time)
I took Aspirin and it seemed to help calm things down. I am not taking any other medications, so I know that it is not medication related.
I got a really great night sleep and it seemed like that helped calm things down as well.
I just joined this forum, and wondered if anyone wrote on here anymore. What is belysta? Are you at home or do you have to work a lot? Is there stress or other things that could keep your mind up instead of resting? I have already found that these things effect me. Hang in there.
Thanks so much for the reply, it helps me to see what other peoples treatment plans are after just being diagnosed. Other then a headache/nausea, joint pain, my symptoms really just started in May, so it is scary to feel like I am going down hill fast. But I know with Lupus is can change from day to day, and so SO Unpredictable. For most women that are planners, and like predictability, like I do, I know this is one of the frustrations.
I started taking Apsrin and it really helped with the feeling of my skin. Even my ears were burning. I checked my own blood pressure and it was up a little for me 130/89. The day before it was 108/60. I usually have a low B/P. So I am really thinking Kidney Involvement. That's why I have been trying to avoid Motrin, or Aleve.
I have the "brain fog" so I am afraid of brain involvement as well.
What are some of your symptoms of brain involvement?
I am always a little scatter brained with 4 little kids, but I have been saying salt instead of sugar, and swear that I said sugar. Or when typing I will type, that instead of those, and doing things like that A Lot. Vague stuff that a doctor would say I was over exaggerating, but I know my body and my "normal." If that makes sense.
We don't have insurance and I am trying to figure how much all these lupus test are going to cost when we get back to America.
My name is Bonnie and I am a nurse, and Missionary in Tanzania, Africa. Long story short... I believe that I have Lupus (SLE) and currently going through a Lupus flare. My medical care here is very limited. We are flying back to America next month for treatment.
My biggest concern is that I am having organ involvement. I have mild protein in my urine, with low back (kidney area) pain, and just starting today mild chest pain, (heart area). I just recently tried prednisone for a week, and it did Nothing for my Lupus symptoms (joint pain, sores in my mouth, butterfly rash, sun sensitivity, nerves in legs tingling/numbness, etc.) I just had horrible side effects with the prednisone.
Currently my face is bright red, sensitive with a burning feeling. My face almost feels like it is on fire. Is this normal with Lupus?
My other concern is my eyes are getting very swollen, especially my eyelids. No swelling anywhere else on my body.
Does anyone have any suggestions? I do have a clinic nearby where I can get a chest xray if needed. Would that show up anything?