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Discussion Starter · #1 ·
Hi all. I have just come home from a 5 day stay at the hospital. I went in with shortness of breath and chest pain. They are still not 100% sure what is going on but the closest thing they can come 2 is lupus pleurisy. Can anyone tell me the difference between lupus pleurisy and regular pelurisy? My oxygen stats were horrible and continue 2 be horrible. I have had 2 come home on oxygen. The way the doctor sounded 2 it will not be something that gets better. He told me though it won't kill me which is a good thing.

Any thoughts?

Marti
 

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Hi Marti,

The cause may be different but I think pleurisy is pleurisy. It sounds as if you have an extreme case since you are now on oxygen. I hope things turn around and you start feeling better soon.

The longest bout of pleurisy I have had was 4 months. Prednisone and Celebrex helped some but didn't take away all the pain.

Take care,
Lazylegs
 

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Hi Marti,

I was wondering if they did a chest x-ray?
When I had pleurisy I was sent straight a way to get an x-ray.

I hope you get to feeling better soon.

Love,
Lyn
 

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Hi Marti

Hope you improve soon how awful for you:( Just a thought do you have shortness of breath just talking, wondered if you have ben checked out for PH Pulmonary Hypertention. Also for me It hurt my lungs to breath could only take shallow breaths. Noticed every breath my lips were blueish. Right heart Catheter can dx this, hope its not tho for you.

take care

dixy
 

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((((((Marti))))))))) As Breanne said only the cause differs, the symptoms are the same. It's horrid, the only thing that used to shift it for me was very high pulse doses of cortisone intravenously. A couple of days of that and I usually came good. Of course I wasn't on anti-inflamms and my other Lupus meds in those days and these days I rarely get it thank goodness.

I too am wondering if they did x-ray etc? It's unusual for Pleuritis to have a long term effect. Did they make sure you didn't have a pleural effusion with it? That's basically trapped fluid and makes it oh so much worse.

:hugbetter:

love
Lily
 

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HI Marti, I am sooo very sorry you are going thru such a difficult time. I had my first case of pleurisy at age 18. I thought I was having severe indigestion because I hurt so badly....went to my GP, had X-ray and told I had Pleurisy. The worst case i had, I had such a bad infection I developed Purpura. I looked like one large bruise. I could not move because of the pain. Finally high doses of pred. cleared it up. This all happened before i was DX with Lupus. Now looking back, i believe I had Lupus long before I was DX. The Lupus has entered my lungs and I have lost 40% lung function. I was recently told that once Lupus enters a major organ, it cannot be reversed. This was very disheartning for me to hear. It has been very hot and humid here and I must stay inside in the air...I have very labored breathing outside but I am not yet on oxygen. Please take care and see or do whatever it takes to protect your lungs from Lupus. I wish I knew then what has taken me many years to learn. Best wishes, Rosie
 

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Discussion Starter · #7 ·
Thank you everyone for your care and concern. I had tons of lovely tests done at the hospital. I had a Cat scan of my chest...2 check for a PE, 2 chest x-rays because the pain was so bad, an echocardiagrahm, and pulmonary function tests. They still could not tell me what is going on. Of course this is what I hear every single time I go 2 the hospital or the doctors. I'm just thrilled this time they knew from my oxygen stats that I wasn't making it up or it was "all in my head." The internest there said it could be the beginning of pulmonary hypertension. He said I am at higher risk for it but it isn't showing on the echo yet. I also can't take ibuprofen because I'm already on blood thinners and they would make my blood even thinner. So I'm trying 2 combat the pain with ultram and tylenol.
 

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hope your feeling better than you did, sorry i dont know, the differance, i have been in hospital with pluersiy for 7 days too,
also on oxygen, but i didnt know there was a differance, have they put you on immunosupressants to help ???it kept attacking my lungs!!


take care Lin xxxxxxx
 

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Hi,

I would be seeing my Rheumy for investigation and treatment in this instance. Often when we present at hospital they don't have the experience with Lupus and therefore not in a position to do anything much but make us comfortable at the time, run tests to rule out certain things. Your Rheumy is the best one to approach about this now you are up and about and feeling a little better. You may need Pred for a while to combat this, and it should be sorted sooner rather than later. If it becomes frequent and debilitating then he will have to reassess your meds. You may indeed need Immunosuppressants.

:hug:

Lily
 

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Hi Marti,

I can echo what Lily and Lin said.............please find a good Rheumatologist.

I am sorry you had this happen and I hope you get feeling better soon.

It is frustrating to be sick and have no answers after a million tests are done.

Sending healing thoughts your way.:wink2::wink2::wink2:
 

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Discussion Starter · #12 ·
Has anyone used immunosepressants? What was your reaction 2 them? I am going 2 be looking for a rehumi 2morrow. I've seen a couple that have been awful. Thanks again. I appreciate all your care concern and advice.
 

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Hi,

Many of us are on immunosuppressants as well as Plaquenil. I've had no problem with them. They saved my life initially and now make it a much better quality of life.

Plaquenil also helped a bit with cutting down on the frequency and severity of my Pleuritis. Do you take Plaquenil? If you don't then that would be the first step before even thinking about Immunosuppressants, they may not be needed, you may get enough control of it with just the Plaq.

Good luck finding a good Rheumy. Have you asked in our find a doc forum? Often recommendations from people with the disease are the best.

love
Lily
 

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Hi again Marti,

I was just looking back on some of your previous posts and noticed you were diagnosed with Mitochondrial Disease. Does that diagnosis still stand? If so then a lot of what we have said is probably irrelevant to your situation because MD can cause respiratory problems and what we treat with would be entirely different to what they would probably treat you with.

:hug:

love
Lily
 
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