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Discussion Starter #1
Just wondering if anyone has dealt with this and what their symptoms were and what tx they got. I've had ongoing pleurisy which always goes aways with steroid tx, however, xray/ct scan are always neg. I started breathig and inhaling first thing in the morning and when I did I would feel this rub in my chest and could not decide whether it was my heart or lungs, my legs/ankles have been swelling quite badly too. I've also started heart palpitations. Anways Dr gave me 160mg shot of steroids, didnt do much at all then she called me in 40 mgs of pred. I started 4 days ago, I'm not achy now and feel more energetic but still pretty short of breath and still having pleurisy pain and I can faintly hear the rub first thing in the morning.:worried: My rheumie ordered an echo last thurs but I haven't got the results yet and it's a holiday weekend. Sorry guess I'm just worried.:worried::worried::worried:
 

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I've had pericarditis several times before my Lupus dx. I've never had a case of pleurisy that I know of but pericarditis is very painful, hurting the worst when you inhale. The pain is also centered in the heart area and can be easily mistaken for a heart attack. Since I had a heart attack before my first experience with pericarditis, I'm speaking from experience. The only difference in the dx was that morphine doesn't touch the pain from pericarditis but works well with a heart attack. An experienced doctor can hear the sac lining scratching against your heart or lungs with a stethoscope too. I was treated with Indocin (Indomethacin) and the pain was gone within 1-4 hours. That's just what happened to me, not advise. I believe steroids is the common treatment for both but at the time Lupus wasn't in my vocabulary. :lol: You can always ask your doctor about it if your curious.

I hope you feel better soon. :hug:
 

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Hmmmmm??? I don't know if you guys have read my thread re "Possible Plaquenil Side Effect"? I've been having some chest pains recently, and problems breathing - every so often I'd need to take a deep breath, and when I do so sometimes I get a twinge around the heart area. Pretty worrying as I think the worst every time. Also feel at times I have heart palpitations as it beats pretty hard and pretty fast :(

What is the difference between Pericarditis and Pleurisy? And are both these linked to Lupus?

I've had a CT scan and am waiting for the results, so will this show outcome of either problem?
 

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Hi SetApart,

It is difficult not to be worried when this has been going on for so long. Hopefully you get the echo results early on Tuesday. Also inform the doctor about the leg swelling and palpitations if he doesn't already know.

Surferboy,

Pericarditis is the swelling or inflammation of the membrane that surrounds the heart. It is found in Lupus and can be detected with a CT scan. The following link will give you further details http://www.mayoclinic.com/health/pericarditis/DS00505.

Pleurisy is when the lining around the lungs is inflammed. It is common in Lupus and can sometimes be detected with a CT scan. The following link will give you more details http://www.mayoclinic.com/health/pleurisy/DS00244.

Take care,
Lazylegs
 

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Thanks lazylegs. But one more question please... does having either of these 2 conditions count as having organ involvement in sle?
 

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Discussion Starter #7
lazylegs;519393 said:
Hi Surferboy,

Since both these things can happen to people without Lupus I wasn't quite sure how to answer your question. I think this link will help you.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=291&z=17&page=1

Good luck with your test results.

Take care,
Lazylegs
Per the above website I noticed that pericarditis can sometimes cause no physical symptoms? hmmm... My pleurisy in my chest was hurting so bad today I had to take a pain pill of course I was trying to clean house a little and was probably overduing it, although I couldn't sleep well last night because of the pain. Guess I'll find out tomorrow what my results are, I'm still having that rub in my chest, sorry for whining, but it sure hurts something aweful along with the shortness of breath.:sad:
 

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This is a very timely post for me, as well.

My first bout of this, was about 6 years ago. I ended up in E.R., but it went undiagnosed, but thankfully, a heart attack was ruled out.

At the time, I was totally clueless, about it being linked to lupus. I have had several mild bouts of it, off and on, since that time.

I up my pred now, when this pain hits me..I must have a mild case of it, because an increase of pred up to 20mgs over a two week period, usually clears it up..for me.

I really hope, that your feeling much better very soon. :) Bless, everyone
who suffers, with it's awful pain, and emotional strain. :(

Love,
Sandy
 

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Hi setApart,

Sorry you are feeling so rough. Having such a strong pain in your chest is always really worrying so do go and talk it through with your Dr if you can.

I have had both Pluresy and Pericarditus. For me pluresy felt like someone was stabbing me with a knife everytime I breathed in. I honestly dont remember much pain with pericarditus apart from thinking that I had trapped a nerve in my left shoulder. The main symptoms for me were a very high temperature and shortness of breath. It was a different shortness of breath than with pluresy though. With pluresy I was short of breath because it hurt to breathe in. With pericarditus I was breathing fine but like I had run a sprint.

An echo will quickly and painlessly tell the dr whether you have it. For me they just gave me antibiotics and upped the steriods.

I hope you feel a lot better soon
God Bless
K
 

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Discussion Starter #10
Well the cardiologist just called and said my echo came back pretty normal. So okay now what? She said she'd fax it over to my rheumie. So why is my chest still hurting? Do I just have ongoing pleurisy that won't go away. I'm down to 20mg on my steroids and still no relief from my chest pain or shortness of breath. Guess I'll make an appt to my pulmonologist.:(
 

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Surferboy: you may have organ involvement *if* you get a diagnosis of pleurisy or pericarditis from your doctor. At this point, it very well could be something else.
 

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Hi Surferboy,

That is a question for your doctor. I am not a medical expert.

Take care,
Lazylegs
 

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Hi Setapart,
I judt wanted to send you a quick note.
Sorry you are feeling awful, i've had pleurisy myself a few times and it is so not nice.
Each time i have had it i have had investigations for bloodclot on the lung as this is also a common cause of pleuritic chest pain.
I was lucky that mine was just inflamation.
I first had blood done which did indicate an elevated d dimer which can indicate blood clots and because of this then had an x ray and then an radioisotope scan of the lungs. Thats one when they inject the dye and it will show any clots. I was also given heparin just incase.
This is definately something worth getting checked out as your echo came back ok.
Unfortunately it does means more tests though.:sad:

I hope you get to the bottom of it.

Surferboy from what you have said from your other posts, i do not think the pain you have described is pleuritic. Pleurisy is a severe stabbing pain which makes breathing in and out very painful and leaning backwards and forward very painful also. Its almost impossible to lie flat. Its the kind of pain that is so bad it would make you go straight to the ER if you had never felt it before and didn't know what it was. I hope you get the bottom of it soon.
And yes pleurisy is diagnosed by doc after other potential causes are ruled out.

Take Care

Good Luck

Cassie :)
 

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Hi SetApart,

It is great news that you dont have pericarditus I would wish feeling that ill on anyone. I am very aware of the frustration you must be feeling at being in pain and not knowing why.
Get an appointment with both your Rhuemy and a resporatary medicine consultant if you can and while you are waiting to see them try and keep a diary where you rate the pain out of 10 at different set times of the day. Like when you get up, meal times and then when you go to bed. Also note down if it is worse with activity, when resting, driving etc. That way when you see your Dr you can give them a really clear picture of what hurts how and when.

In the meantime I would keep taking good pain killers and if the pain gets too bad or if you get an unsual temperature go to hospital as an emergency.

Take Care of yourself :hugbetter: and let us know what the Dr's say.
God Bless
K
 

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Discussion Starter #16
Thanks for the replies, my chest pain has actually let up a bit today, not sure why but thankful!!! I'm still short of breath and have the friction rub first thing when I wake up and my right side of my chest feels tight other than that I'm okay. My pulmonologist called me back yesterday and asked me some questions and told me she was going to call me back but never did, so I guess I'll wait and see if it gets better or worse. :( At least I'm not aching right now for that I'm so thankful!!! I've had an ongoing flare for over a year that only stops for awile when I go on pulse steroids then 2-3 wks later I'm back to the old self...:sad:
 

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cad;519505 said:
Surferboy from what you have said from your other posts, i do not think the pain you have described is pleuritic. Pleurisy is a severe stabbing pain which makes breathing in and out very painful and leaning backwards and forward very painful also. Its almost impossible to lie flat. Its the kind of pain that is so bad it would make you go straight to the ER if you had never felt it before and didn't know what it was. I hope you get the bottom of it soon.
And yes pleurisy is diagnosed by doc after other potential causes are ruled out.

Take Care

Good Luck

Cassie :)

Hi Cassie, thanks for the reply. The only reason why I think it is Pleurisy is due to the symptoms listed on the links above. The pain I'm having is text book... but just not that severe. I think it's what's known as acute pleurisy.

How long would a case of pleurisy last? Can it cure itself in a matter of days with NSAID's? Or does it tend to last a lot longer?

But I sure do hope you are right.
 

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Hi setApart,

I can honestly empathsize wth your pain. I suffer from serositis, which is inflammation of the lining around the heart, lung and abdomen. Generally my lung gives me the most problems and I have had fluid and inflammation around the heart a couple of times now. I also have damage to my left lung from blood clots I had and scar tissue from when I had to have a chest tube to remove 4 litres of fluid. So, I am dealing with chronic pain in my lung, both inflammation from the Lupus and from the scar tissue.

The treatment is basically the Lupus meds (I'm on methotrexate and prednisone at the moment) and pain medication (I'm on the fentanyl patch and hydromorphone fior break through pain right now). Some days it is not too bad as long as I don't cough, hiccup, yawn or sneeze. Basically anything that expands my lung brings tears to my eyes. I can tell the difference in the pain whether it is inflammation or the nerve endings from the scar tissue. Again, there is really nothing they can do other than try to keep the inflammation down with medication. I've had this for 2 1/2 years now and it never competely goes away. So, I'm hoping to get a referrral to the pain clinic. Apparently they will put you on the least medication possible and provide ways to deal with the pain. I used a TENS machine when it was really bad. I'm using one now for my knees. It really helps with the pain. Here's some information on it. http://www.patient.co.uk/showdoc/23069069/

I'm sorry I can't be more helpful. But I just grin and bear it some days. When it is really bad, I can't even bend over. I just got over pericarditis and I could actually feel my heart do a flip. My GP said he had never seen inflammation so bad. The lung can be eqally bad. Some days I can't even bend slightly because it will cause rubbing against the lining (I think that's what is happening) of the lung or heart as the case may be. It feels like someone rubbing an open wound. A real "raw" pain.

The methotrexate is really not working for me anymore. They put me on a high dose of prednisone when I had the pericarditis. Once they get it down to a much lower level, the Rheumy wants to switch me to imuran. Imuarn is supposed to work better on organ problems. I'm not sure if the lining of the organs is treated as an orgran or joint. My 1st Rheumy considered it the same as joint pain. So, we'll see what happens with the imuran. My sister took prednisone for 35 years for crohns and imuran was the only thing she could take that allowed her to get off the prednisone. I'm hoping I have the same luck.

I wish you the best. I hope they find something that will work for you.

Nutty
 

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Nutty, I feel so sorry your in so much pain, that sounds so terrible, now I feel bad for complainin about my pain. I'm actually on Imuran and when I first started takin it, it took like 3 mos to kick in then for like 2-3 mo's I was almost back to myself, then I started flaring again. It just seems like it doesn't stop. I'm also on plaquenil. I've did some more research on pericarditis and found alot of people have it but have normal echo's and also if you do have it you have this certain pain that goes up your muscle from your heart into the side of your neck and this is exactly what I have, not to say that I'm right, but you know how you just get that feeling that something is wrong and they can't figure out what it is. Very frustrating.:worried: I take percocet or ultram when the pain is so unbearable. I take one day at a time, that's all any of us can do:) Wishing you a pain free day...
 

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set apart-
I've had it all, pericarditis, pleurisy, and pulmonary emboli(blood clots in lungs)
My pericard. is recurrent, every time I lower my pred, its back. I started on Colchicine, a gout med that is used for pericard. I have been able to get down to 4mg of pred, but cannot stop the colchicine as the inflamation comes back. I try to take NSAIDS to help with both the pain and inflamation. Like 800mg 3 times daily. I dont reccommend this, my doc gave me the ok for a weeks worth, but this will cause stomach upset and damage!
It took about 2 weeks before I felt better. I seem to have pericarditis even though I am not in a flare. And I dont always get a fever with it.
Hope you are feeling better daily. ps. I see a cardiologist for this, and have been to er so many times for this. I also take 15mg Methotrexate.
Good luck, Kim
 
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