View Full Version : SLE forever - pleurisy this week
09-13-2006, 04:58 PM
Hi - I'm Overit. Literally. Sorry to sound negative on my first post here, just trying to find some advice on how to deal with pleurisy.
My SLE has been very mild so far, mostly skin/joint involvement and very little showing up on the bloodwork. Dr actually told me to keep taking the plaquenil as an insurance policy against flares. Thought that sounded positive. Once I learned a little about it, it seemed manageable. I have a supportive husband and good friends, and my family's trying to be supportive. Also a great local support group. Haven't really put this on the table with work and still trying to step lightly there as I've had several unrelated medical issues in the past few years.
Last week I awoke with severe pain in mid back on breathing for over an hour. Dr diagnosed pleurisy and added Rx ibuprofen which seemed to help. Made it back to work for a day and a half then felt like I couldn't get a full breath, exhausted and some discomfort with breathing but at least not the very sharp pains. CT scan shows no fluid, no clots (whew). Tried antibiotics, no response. Finally put me on Medrol dospak Monday. Seemed to be helping raise my energy level and open my airways some. Made it back to work today, but exhausted and feeling the pressure in my airway again tonight. Still hoping this resolves and is just a virus not related to the SLE. I'm also trying to convince myself that it's just taking me longer to recover because of the 8 weeks bedrest I had earlier this year while the dr's figured out my gallbladder had gotten inflamed and quit working. Seems logical but I'm kinda losing faith here.
I've read some of the archives about pleurisy and related conditions. Sounds like lots of you deal with this all the time. I think I understand what pleurisy is, and maybe when to call the dr for help again if it gets worse. What's the secret to functioning when you feel like this? I took 20 pills yesterday plus two rx drinks. I've had some really good days and weeks in the past few months, and I'm trying to hang onto those right now. I'm only 35, seems like life really shouldn't be this hard. At the same time, I know this is still minor compared to what so many of you are going through. I really haven't been able to comprehend how some of you or the folks in my local support group have dealt with the ongoing problems.
Any advice on how to hang in there or how to beat the pleurisy is greatly appreciated.
Thanks for listening,
09-14-2006, 01:47 PM
Lupus is a disease that causes inflammation of numerous organs, muscles, and joints. Unfortunately, it can also cause inflamation in the lining of the lung (the pleura). The parietal pleura is a thin membrane that lines the chest wall, the diaphragm, and the mediastinum, whereas the visceral pleura is the sac that actually covers the lungs. The visceral and parietal pleura meet at the hila and form two distinct spaces in each side of the thorax. Each pleural space contains a small amount of fluid (less than 10 mL) that lubricates the pleural surfaces and allows the lungs to contract and expand easily during the breathing process. Pleurisy develops when a disease, condition, or injury causes irritation and subsequent inflammation of the pleura. Fluid may accumulate in the pleural space, causing pleural effusion, but pleurisy may also develop without effusion (dry pleurisy).
The most common cause is a viral infection, such as a simple cold or influenza. Pleural inflammation is also commonly caused by pneumonia, tuberculosis, lung cancer, rheumatoid arthritis, lupus, pulmonary embolism, or injury.
The mainstay of treatment for pleurisy is managing the underlying disease or condition. Patients with lupus pleuritis are generally treated with an oral corticosteroid (such as prednisone). For lupus pleuritis, therapy should be initiated with prednisone 10 to 40 mg daily. The dose of prednisone should be tapered once symptoms are controlled. For patients with lupus pleuritis who show a slow or unsatisfactory response to steroids, cyclophosphamide or azathioprine are generally prescribed.
Recently, several recent studies have found a high response rate to intravenous immunoglobulin for patients with pleurisy caused by lupus. In rare cases of chronic lupus effusion that is unresponsive to drug therapy, pleural sclerosis with tetracycline, talc, or pleurectomy may be necessary.
The pain associated with pleurisy is often treated with analgesics such as acetaminophen or a nonsteroidal anti-inflammatory agent. Narcotic analgesics may be used for severe pain but they may impair the ability to cough. Sometimes, wrapping the entire chest with elastic bandages may help to relieve severe chest pain, but it may also increase the risk of pneumonia so discuss this with your doctor before considering it.
To prevent pleurisy, patients with diseases associated with a risk for pleurisy, such as lupus, must help to control their disease by being taking all medications as prescribed, making necessary lifestyle changes and by keeping your doctor's informed of what is going on with you.
I hope that this has been helpful :B-fly:
Peace and Blessings
09-14-2006, 03:33 PM
Saysusie, I know everyone else has told you...but I haven't....you are awsome. I get bronchitis, a lot, and now I know to take extra care and pay attention to my chest pain when I am sick and I guess even when I'm not.
Just wanted to say Thanks for being here. You mean a lot to all of us.
By the way, how are things with you these days? Hope all is well.
Gratefulness and admiration,
09-14-2006, 03:50 PM
I'm sorry you are not feeling well. I wish there was something I could do to make it go away. We all have enough troubles without it being compounded by something new.
As far as "hangin in there", I have no great words of wisdom. I have learned both from the wonderful people on this site and thru fault of my own....take care of yourself. Listen to what your body is telling you. I have also learned that the world really does not stop if I'm not wonder woman. That was kind of a shock at first. :lol: Don't let people get to you (easier said than done) and try to keep stress to a min. The last statement always seems to be the hardest. And last but not least, stay in touch here. I have found that I can have a conversation with someone without lupus and come here and have the same conversation and it is a totally different conversation!
Keep us posted on your condition. I'm sure we all will do our best to get you thru. I hope you feel better soon.
09-14-2006, 04:00 PM
Unfortunately with lupus, a lot of us have bouts with pleurisy, for all those reasons that saysusie explained so well. I usually only have a problem in wintertime, but many people have bouts all year long.
The pain from pleurisy is often worse on one side, you can sometimes get relief from lying on the painful side against a firm surface like a firm cushion. If you have to be sitting upright, putting a pillow against the painful side can help provide support. If you are coughing a lot and notice extreme pain when you cough, you may need to talk to your doctor about a cough suppressant - otherwise it's best to go ahead and cough to keep your lungs clear and reduce your risk of getting pneumonia.
I get better pain relief from Aleve and its generic version, naproxen sodium, than I do from ibuprofen, but ever one's reaction is different, so check with your doctor. I also get some relief from hot compresses and showers, and good old fashioned vick's salve rubbed on the most painful areas. It doesn't smell good, but it does seem to help.
You can also ask your doctor about two herbal remedies for pleurisy - an herb called pleurisy root, and another called mullein. Pleurisy root usually comes in capsules, mullein is brewed like tea. You can find them in many health food stores. These herbs can interact with medicines like diuretics, and medications for heart disease or asthma, so you should definitely check with your doctor before using either. Valerian root and kava may also help - these have an anti-spasmodic effect that helps to ease the chest tightness - again check with your doctor.
If the air in your bedroom is extremely dry, using a cool mist humidifer may help you breathe a little better - you have to be extremely careful to keep the humidifier clean, otherwise, it breeds mold and bacteria.
If you start feeling worse, or notice shortness of breath or fever, be sure to let your doctor know.
Hope this helps a little.
09-14-2006, 04:11 PM
Thanks all for the responses. I had been surfing the internet but hadn't found some of the info you've provided here. I'll definitely talk to my dr about these as I try to get to the end of this situation. Made it through full days at work yesterday and today with not a lot of pain and feeling like I was breathing ok most of the time. Very tired and more pressure/pain in chest at end of day though (esp when I lay down to relax). Just hoping the end of the medrol saturday doesn't bring more pain.
Thanks again. I've found my local support group to be a great source of perspective and advice in the past, and seems like the folks on this forum are as well. Look forward to talking to all of you more in the future.
09-14-2006, 04:41 PM
Hi Beuchick :lol:
Thank you for those kind words. Health wise, I am doing faily well. Just coming out of a flare but feel myself going into a bit of depression (as I always do this time of year!)
This forum is what keeps me sane and keeps me focused. So, I appreciate all of you more than you'll ever know!!
Peace and Blessings
Sorry to hear you are having the pluresy issue! I was diagnosed with pluresy this time last year and everytime I take a deep breath it still hurts. My Rummy said it is scarring from having pnuemonia and pluresy this year.
Like others have suggested I find that a hot water bottle can sometimes help.
The thing I wanted to say was thank you for posting this. Reading everyones advice has made me think seriously about going back to my dr. I had kinda given up hope but in the last 2 weeks I have been becoming increasingly short of breath, had a variable temp and my friends have been complaining that I look very grey.
I have sooo much to do at work and I dont want to give them any excuse to say I am not fit for my job. So I have been trying to avoid going to see my dr. but reading what you have all said I think maybe I need to.
So thanks to you all.
09-19-2006, 12:09 PM
Sorry to hear that you are not feeling well. I totally understand. I have had problems with pleuritis/pleurisy for about 2 years now. It comes and goes and definitely gets worse with stress.
I have found that I have luck when it is bad if I get one of those hot packs that you warm in the micro wave that are filled with herbs. they sell them at mall kiosks and such. I warm mine and then I put it in the middle of my chest, lie on my bed and give it a "hug" with both arms around it. That seems to help the best.
If you can't find the herbal heat pack, try getting a small bath towel damp, and warming it in the microwave. Just be careful not to get it too hot so you don't scald yourself.
Hope this helps.
09-19-2006, 12:56 PM
I make my own heat packs by putting about 2-3 cups of dry (uncooked) rice in an old tube sock, mixed with dried lavendar or other dried herbs or essential oils if you have them. Fasten the end shut with a sturdy rubber band or sew it shut if you're handy with a needle ands thread - just don't use a twist tie or anything metallic. When you're ready to use, just microwave for about 90 seconds (depending on your microwave's power) and you're ready to use - just be careful not to get them too hot, or fall asleep with one next to your skin - basically the same precautions as with an electric heating pad.
If you sew, you can make your own fabric tubes with pretty flannel or other fabric - i have several with different herb combinations.
09-20-2006, 03:05 PM
Wow - sounds like lots of us deal with the pleurisy. Thanks again for the tips.
I was feeling better last week on the pred but it ran out on Sat (dospak) and by Monday I was feeling much worse. Pain around my heart, more shortness of breath even at rest, and still the random stabbing pain. Primary put me back on another dospack Monday until I could get to the rheumy today, but it was like it did not take hold this time. In the meantime spent a lot of time with my microwave heat pad on my chest (great tip - thanks!), propped up on pillows, and concentrating on taking slow painful breaths.
Since they'd already run a CT scan that came back clear, Rheumy didn't seem concerned except maybe about the pain around my heart. He upped my pred to 32mg/day for 2 weeks then try to taper if I'm doing ok. Found some signs of chostochondritis but also going to watch for inflammation/fluid in the heart if I don't respond to the upped dose or if it recurs when he tapers. So I'm trying to rest up tonight and get back into work tomorrow or Friday depending on how fast the meds kick in. Wish me luck. - overit