SLE and Pneumonia
Has anyone with SLE had experience with regular bouts of pneumonia? My wife has had pneumonia at least once a year since we met and it really worries me.
I’ve heard there are shots you can get to help prevent pneumonia. Do they help?
It gets really scary when she gets this sick.
Yes, I have had several bouts of pneumonia. THe last one landed me in the hospital for ten days. Three months late I got the pnumovax shot and had a terrible reaction. My neck was so stiff I could not turn it one way or the other, the pain radiated down my back and arm. The arm where they gave the injection was the size of a softball at the high point. I ended up back in the hospital for 2 days of IV anti-biotics. I would personally rather have the pneumonia again than the pain I went through with the vaccine. Good luck!
@Kara – That sounds awful! We will not be trying the vaccine anytime soon.
Things are a little worse today and we are in close communication with our primary care physician. The kids are very worried, and it’s difficult to explain lupus to another adult, much less to a child.
Prior to my new designation of drug induced remission from Lupus, I would get pneumonia about four times a year, usually lasting about 6 weeks to recover. The best advice I got was every time a runny nose or cough lasted more than a day, I called the doctor and was immediately put on antibiotics. If I waited for a fever,it would be too late and bronchitis or pneumonia would set in within hours. This was about two years ago and I don’t know if it will work for you. My prayers are with you and I know what its like to watch your kids look at you with fear in their eyes, just let them know mommy and daddy love them.
Yes, I have had regular bouts of pneumonia since getting Lupus and am on my sixth lot of antibiotic in a row. I only have about one free week without antibiotics before I need them again. The secret is the Doctor as soon as possible. The quicker you get help the less damage there will be. I hope this is of some help.
My wife has a pretty good understanding with her primary care physician and he usually gets her in ASAP, but often it doesn’t seem to make any difference.
As time goes by I seem to be experiencing the same thing, it doesn’t seem to make much difference,as I get the chest infection or pneumonia regardless. However, by not delaying to see your Doctor you may lessen the risk of complications setting in. I have just finished a course of antibiotics & now expect to feel okay for less than a week, before the next infection strikes. Is anyone else having to continually take antibiotics. Is there another way out of this scary situation?
Shirley,
My wife has SLE and experiences the very thing you are talking about. One round of antibiotics after another. We have not found a solution other than starting asap as you have noted. We have found a couple of Docs that understand and give her refills of the ones that work without much hassle so we start antibiotics first and then go see the Dr.
Jon: My wife’s rheumatologist has scheduled a bronchoscopy and a CT scan, hoping to find some explanation for the frequent pneumonia and respiratory problems.