I’m still in a flare. I’ve been in a flare for 2 months now…I think…time is starting to just blend together. My symptoms just keep getting worse. I’ve recently started with what a nurse friend called thunderclap headaches in the evening. My face is swollen and puffy from the prednisone. I’m not sure if the prednisone is causing my facial rash and redness or if it’s a new symptom of the flare. I’ve now developed a pretty nasty cough out of nowhere on top of all the breathing problems I’ve been having. Life has pretty much come to a halt for me. I tried going to the ER but was there for 8 hours and finally just left. I put a call in to my rheumy but they never called me back. I don’t know what to do anymore.
I have actually gone to an immediate med when my rheumie or primary couldn’t see me. (And didnt want to go spend hours at the ER). He diagnosed pleurisy once and game me prednisone, an inhaler and pain meds. I hope you get seen by someone soon and get some relief!
Honestly it could be the change in season since our immune system is weak our bodies are weak , personally that happens to me every change is season and i become more symptomatic . Cheap trick that works for me to be seen in the ER quicker is to be either. Short of breath or chest pains doesn’t always work .
Calm down and try to see your primary doctor. Stress will make it worst. The doctor told me prednisone helps with the flare, so continue to take that, I had a flare and end up in the hospital. I don't know all your symptoms, but I had open sores(which I saw a wound doctor for), low blow pressure, rashes and anemia. I was at the Doctor's office and they took me straight to the ER . It was pretty bad. But one time I had just the moon face and rashes and the primary doctor gave me cream. Dermatologist will give you cream too.. So I know it's hard to do, but relax and take deep breathes. Stressing is bad for your flare. Delia is right if you are having breathing problems you should be seen right away at the ER. I hope you get to see someone soon. .
The only thing I have to add to the comments above is my anger and frustration at the rheumys who know all about Lupus, but have no empathy for their patients…and, treat those patients with a dismissive attitude. It’s as though they don’t think we are sick, any more than the general population does, because most of us DON’T LOOK SICK. I’m still waiting to talk to my dr, too.
It's time to add a respiratory doctor to your arsenal against Lupus. The Fall and Winter months can lead to hospital time.
After three bouts with pneumonia just prior to diagnosis I will tell you what I would do. Get to the ER Now!
Tell them you have lupus and are in respiratory distress. I went from a small cough to icu on a machine breathing for me.
I don’t remember much of what happened after the ambulance but I was sedated and on a respirator for 3 days.
To say touch and go is putting it mildly. I had home care after release…I was 38.
I AM trying to scare you.
You know your body and this is a really bad time of year for people with compromised immune system.
Please be insistent!
Lauren, Ive had flares that have lasted for three months…just keep on treating symptoms as best you can. Give the rheummy another call…and another, until they listen. If you get no further help from them…kick’m to the curb and find another. Mine does get busy and sometimes I have to call them again…but the nurses and the doc never fail to help with ANY of my symptom that pop up. For me, Preddisone is my last resort and just do tapers of it. Do you take other meds?
I went to the ER last night finally. Was there for 9 1/2 hours! They were so mean and rude. Told them everything, told them of my breathing problems and chest pains. I heard the dr talking in the hall outside my room to a nurse saying “no no this is a lupus patient there’s no rush here. You go ahead and take care of the other 2 patients that came in.” I was swept under b/c my illness wasn’t serious to them. My BP was running at 140/100 and I was tachycardic. Fever as usual. But with all this I’m not priority. The only reason they gave me pain pills (which I don’t want b/c I have the same ones at home) is b/c they said I have pericarditis on top of my costachondritis. They completely ignored the red face covered in blisters and hurts to touch. 2 months…2 months of this I’ve been dealing. 2 rounds of steroids. Can’t get in to see my regular dr b/c they say next available appointment isn’t until January. My rheumy just sucks! I call and I call and I call. It usually takes them anywhere between 3-5 days to return my call and that’s all I get l, a call. Not once during these 2 months have I come in to see them for blood work or anything. With my insurance (military) we can’t just pick up and leave a dr. It has to be pre-approved by the insurance company and the primary dr has to initialize it. So you see I’m stuck!
Pericarditis is serious business. You probably have to be on steroids for it. What is it with military doctors, anyway? Put in for a change of rheumatologists if that’s what is needed so it will happen eventually. In the meantime, do you have a regular doctor who you can see about the blisters? Or you could just go to the rheumy and refuse to leave. I think that might be best. Mine fits me in in an emergency. The ER probably isn’t dismissing you on purpose, they are triaging BUT should be more circumspect about how and where they talk. You can write a complaint to the patient representative. I would.
I had costochondritis/pleurisy for months and months, it was so painful, and pericarditis is also painful, I bet. I know how awful is is to have it hurt when you talk or breathe or move your torso at all, and Vicodin really helped only by putting me to sleep. Did they put you on antibiotics? It sounds like they sent you home with all that inflammation. ER’s aren’t always great at specialty illnesses like autoimmune. Anyway, I’m worried that you have blister on your face, because they could get infected, apart from the discomfort and worry. And I’m not sure that when lupus patients have costochronditis, it isn’t also pleurisy. They used both terms when I had it. Not that it matters, it just hurts. A lot! Sorry this is so long, it just sounds like you need way better care, and I know how hard it is to fight for yourself when you are that sick and in such pain. I watched a lot of figure skating the winter I had costo etc, it was soothing and I could float on the ice with them. 
At the moment I do not have a regular dr thanks to my insurance screwing that up and I don’t know when I’ll get one. The only thing I was given while I was hooked up there was fluids and percocets and that’s all I was sent home with. No antibiotics. Bronchitis was thrown around in the conversation and yet was not treated. They also told me b/c I have a really nasty cough and a low grade fever that I could easily develop pneumonia and yet still nothing was done. Not even as a preventative measure. Back a few years ago when I was at another base in Texas I was admitted just b/c of my high heart rate and blood pressure. My heart rate was running between 125 and 140 last night resting and my BP at 140/100 and I’m pretty small so it’s not like weight is a factor here. I just think they dismissed me much to quickly and probably could’ve found the issue if given the time. Now here I am today, in bed, still sick and actually feeling much worse…go figure.
This is just so sad and depressing.Went 10 yrs before Drs.even told me bloodwork showed lupus and have only known for sure for a year and already feel the same way a lot of lupus people feel. I just think most of them don,t know or have an answer to give.My family Dr.was sending me to a rheumy and internist said to cancel it but can only see her once or twice a yr. can,t talk to her in between, doesn,t help when you are feeling so bad and don,t understand it.i get more help from reading these posts and other info than I do from medical people,Now every problem I have is blamed on Lupus. easy answer. well thanks for listening to me vent even that helps ,
Lupus is hard to live with, no doubt about it. I had military neighbors for quite a while, and when he came home from Afghanistan with traumatic brain injury, a blown knee, broken back, ptsd- it took 2 years to get around to operating on the knee, and I just still can’t understand why they couldn’t do more than hand out percocet. But sometimes the doctor took off early and left him with no pain meds, so he’d go through withdrawl. He couldn’t go outside the system, either. Sounds like you are getting the same stellar treatment. I was surprised they let you go home when I read your post last night. I’ll pray they take care of you. Keep trying, if you have the energy, it is so hard to fight when you are so ill!
Yep same here, everything is blamed on the lupus! I've become so discouraged and frustrated I won't even consider going to anymore doctors.
mcleancb@gmail.com said:
This is just so sad and depressing.Went 10 yrs before Drs.even told me bloodwork showed lupus and have only known for sure for a year and already feel the same way a lot of lupus people feel. I just think most of them don,t know or have an answer to give.My family Dr.was sending me to a rheumy and internist said to cancel it but can only see her once or twice a yr. can,t talk to her in between, doesn,t help when you are feeling so bad and don,t understand it.i get more help from reading these posts and other info than I do from medical people,Now every problem I have is blamed on Lupus. easy answer. well thanks for listening to me vent even that helps ,
If doctor want help, you get another doctor. Time is of the essence. Remember Lupus can cause organ damage. So find you another Rheumatologist even if you have to go to another city. Good luck!