Hi, my husband had pleurisy back in november was very painful. Like you had said it hurt to breath to sneeze,cough the pain was so bad he needed help getting out of bed. He was also put on anti-inflamatories the way they explained it to us was its a infection in the lining of the lungs so the anti-inflamatories would help the infection there for easing the pain.They also put him on a inhaler to make it easier for him to breath since the pain was so horriable. That also helped within a week he was back to normal. I am not sure what pleurisy can lead to like you asked with lupus and all that our doctor never mentioned any of that. I know with my huband his pain started out gradually lasted for about 2 weeks then got really bad so he had basically had it for a good 3 weeks before seeing a doc then another week after that so I know it can hang on for a month or so not sure about 6 months though. I would question your doctor on that one and I would also ask about it maybe leading to lupus and arthritis and the other things you mentioned. I would be curious to know myself the answer to that since our doc never said anything about it.. Hope ya feel better and let me know..

Hi,
thanks for responding back. My doctor wants to wait a month or so, while I take anti-inflammatories before doing other tests. She says it can hang around for awhile-usually the result of a bacterial or viral infection. They don't know if it goes away, if it will recur in the future with another respirarory infection-apparently, for some people, it will recur if you get bronchitits and others never have it again. She said that rarely, it's a symptom of lupus, etc., but that you would have a lot of other symptoms (fatigue, muscle pain, a rash, etc.) and the pleurisy would not go away, in that case. I'll post again if I know more-glad to hear your husband is doing better.

I was just reading over my post again that I sent you and realized I failed to mention that his came back again in january. It wasnt nearly as bad that time around which I am sure was because soon as he started feeling bad like he had back in november he went to the doctor right away and was put back on medicine again and so far since then he has been fine. I thought it was kinda strange that in 2 months time it was back again. He said the doc said that that can happen sometimes which isnt much of a answer to me I dont think there has to be a reason for it wouldnt ya think? Anyways, let me know if you find anything out ok?

It fealt like a heart attack. Have taken the anti inflammatories, wrap, rest etc and am still having trouble. The meds are keeping it from getting real bad (when I can't move, breath with pain) it started earlier in the year. I have to go back to the rheumy and see what is happening. If this is pleurisy (that's what 2 docs said) it is not healing. When it acts up I get spasms elsewhere and don't know if that's related. Activity depends on how much this is hurting. I'm taking anti spasm medication and strong antiinflammatory and it's not fixing this. Hope you get answers.

I'm still having the same pain, 8 months total now, even though i've taken anti-inflammatories for 4 months now. I had also developed pain in my hands, so they've been testing me for lupus, ra, hep b & c-everything keeps coming back negative. I'm now taking vioxx, which is helping the hand pain, but still the pleurisy remains. Still have no clue as to why or how. My blood tests are showing a high level of inflammation in the body, but that's all they seem to know. Getting so frustrated, with all the time, money, and pain this has been costing. Insurance keeps turning down an mri, since the chest x-ray didn't show anything. I think the rheumatologist is the right place to be-mine told me that pleurisy is often a symptom of an auto-immune disease. Keep me posted on how your condition turns out.

I went back to the pulmonologist after giving the medications time, thinking it would eventually go away, but didn't. It's been back and forth between doctors, it's frustrating. Just had a chest ct. If that's negative, he's sending me out for mri. The meds seem to manage the pain to a degree, but it's not going away. Every night I sleep on a heating pad. I'm disgusted with this. It's running my life.

Many moons ago I used to have problems with pleurisy, I am nooo Dr. But, I was told to put some ice chips on the back of my tongue, by the throat and let it melt, it seemed to help then, now I have bronchitis and other problems, I do hope you all get better soon and find some answers, I too am on an albuterol inhaler, along with other meds.
Sincerely,
sandy
p.S. Have any of you people that are having problems with pleurisy thought about naturopathic herbal supplements? There is a gentleman on ehealth posts that has a lot of knowledge on this I do know that he does have a post under the back pain forum, his name is dr venugopal(something like that), just a thought, he might be able to help you aout with this, if you just pm him.

I'm still having the pleurisy pain. I've been going to doctors since october-that's all I do and yet I still never feel any better. Now my hands are bothering me too. Another appt. With a pulmonologist and a bone scan to check inflammation levels. If these don't work, i'm going to go to jackson memorial or cleveland clinic, where they look at the whole body, because this is just going on too long.

For those with pleurisy, an airplane ride is hell. I had a 7 hour flight last week and something about the air pressure created a great deal of pain.

I will try the ice chips and see what that natural doc. Has to say-thanks for the advice. I'm starting to wonder if i'll ever feel normal again.

I hope you are feeling relief. When it hurts, I have to rest and prop myself up on pillows and a heating pad. I hope the ice chips are helping you. I tried a cool pack last night and it seemed to comfort. I hope you find answers.

My chest cat scan was abnormal, so now I have to go for a pet scan to see if its cancer of the thymus or lymph gland. It's 2cm, nodular, in the anterior mediastinum. He took a blood test to see if I have receptor antibodies (higher in people with mg). I had chest exrays that were normal and an echo that was too. The ct picked this up.

From what i've read, the location, size, appearance, it's not good news. The doctor who read the ct does not think it's the thymus because it's nodular and by my age, so she says to rule out things. This is ongoing since february. I guess you could say my symptoms sounded like pleurisy. I had no fever or cough, mostly pain, trouble breathing, some swallowing trouble. Let me know how you are doing. Do you have any trouble with your eyes?

I saw the eye doctor the day after that news. I took steroid eyedrops for the swelling in my lids, eye pressure high. What else. I have to go back for a visual field to check the pituitary. I had double vision bad one night this week.

Gosh, kev, I hope you and all get some good answers soon and remember, you always have a right to a second and third opinion! You are all in my thoughts and prayers!
Sincerely,
sandy

Hi,
your news is awful-i'm so sorry to hear that. Hopefully, now they know what it is and maybe something can help. What happens after the pet scan?

Cold doesn't help me, only hot. My vision gets blurry sometimes, but i'm told that's a side effect of the meds. My bone scan test was normal. I'm seeing a new pulmonologist this week and he will probably be able to finally order the chest ct scan. I'm now also getting some "pins and needles" in my hands, like they're falling asleep, in addition to the pain. Chest pain is as bad as always. What type of doctor finally diagnosed you? I should probably check that out also.

Hang in there and keep me posted on what happens. I know how depressing and scary all these doctors and tests are, especially since the pain never seems to go away.

Before anything invasive i'd get a second opinion unless it progresses to a point... The body scans tomorrow. The pain was worse sunday, getting nausea. The doc on call called in a different pain killer. I think that one stops the pain signals from getting to the brain. I slept after that. Ribs front and back are tender. Had bad colon pain and other things for 3 days so fri, went to pcp, end of month to see gi doc, have colonoscopy. I'm feeling it up and down. He did blood work, sent sample in...

Spent a long time on phone for paperwork I need for the test. The pet scan people tell me they can't do it without the script. Kept getting the run around from the office people, why it's not done, missing on and on, different stories. One even said they mail it when they get approval then another said they never do that. Why would she tell me something they do that they don't? I don't get it. They said someone would call me with the lab results and now nobody is telling me anything about the blood work. Today they said the doctor would have to call me and tell me the blood work results. Maybe it's not good news. I don't know.... Went to have it picked-up it was not ready, no call, no nothing...It's not right. I'm not up to all this.

I hope the doctor who read the ct read it wrong. He said it was to see if it's thymus cancer, I was in shock then that wore off. I guess that’s' a brace yourself situation. There are different types. The pet will evaluate and differentiate lymph node from thymus and see if there is uptake. It's a good test to see if cancer cells are in other places. From what i've read they don't leave these in there, it can invade the heart, vessels, pleura so they don't leave it be. The test can downstage or upstage based on what they see. I won't know anything until this test report is done. Some types are resectable, some aren't. Some respond to chemo and radiation, some don't. 3-5 year survival percentages depend on what type it is. Pet can give an indication but to know for sure, a biopsy is more telling. I don't know if that can be done. They have a bunch of positive and negative predictive values based on prior studies. I'm trying to not worry but can't help it. I have a feeling this will be a long road. It's been some time for not feeling well, so I expect this won't be "fixed" any time in the near future.

I'm trying to brace myself for the idea of some kind of biopsy. If it ends up being abnormal thymus then they need to do more tests. To r/o mg they have to test for antibodies because of complications with breathing that could happen. Depending on the report, will see what the next step is. If they think it's positive for ca, I will probably go to sloan kettering for evaluation, options, prognosis. I'm taking one day at a time. I'm tired
and on edge about tomorrow...I need to try and be positive. I am not prepared for the thought of radiation/chemo. For my age, that would be the end of any thought of having a child of my own. I'm not going to cross that bridge. I am scared at the thought of surgery to resect this.

It was the pulmonologist who sent me for the ct so. It's early. Need more evaluations. Hopefully they will have some ideas so they can give me medication that will actually help with the pain.

It's reassuring to know the new doctor will see that you get the ct. Keep following-up with the doctor. That airplane ride must have been torture. I thought a car ride was tough. Hang in there.

Hi,
hopefully, you'll read this before the body scan. You sounded worried about it-that was no big deal, it just took forever, so plan your day around it. They inject you with this dye and then you have to wait 3- 3 1/2 hours for it to settle into you. Then they put you on a table with a machine over your head that slowly moves down your body for about 1/2 hour. Other than the boredom (and the anxiety of all these places), it's painless and there are no reactions to the dye at all-same radiation as an x-ray. So, the whole thing, with all the waiting around, was a 5 1/2 hour thing.

The main thing i've learned from all this is that you have to be an advocate for your own healthcare. You have to be responsible to go online and read research, followup with the doctors every day, ask lots of questions, etc., because these doctors and office staff seem to not care and/or are completely incompetent. I cannot tell you how many times in the last 10 months, they have not responded to phone calls, i've had to go pick up my test results myself, been referred to a doctor not on my plan, not had the referral faxed over (despite calling twice to check), not being able to get an appt. For 2-3 weeks. It's especially frustrating when time is of the essence and it could actually make a difference between irresiversable damage or length of chemo or whatever. There are times you just feel like giving up and living with the pain. The irony is that all of this running around is the last thing you'd want to do if you felt up to it-and when you don't, it's nearly impossible.

I liked my new pulmonologist-he seemed more thorough and interested in figuring this out. Did a few tests-scheduled for a few more-he thinks my lung capacity is fine, but the pain is prohibiting me from getting enough oxygen, so we need to determine the cause of all the pain.

Anyway, try not to worry too much (although that's hard), because whether you have something or not is beyond your control at this point. You can only control how you react to it and what you do about it when you know. You've done all the right things so far, in terms of following up, research, and not giving up on figuring it out (this is what I tell myself every time i'm waiting for the results of a test to determine if I have a hideous disease). As far as future kids, I think you're jumping too far ahead right now and those thoughts are too scary (plus, you can always freeze things these days!). Hang in there and let me know what happens-

Thanks for everything you said. The pet scan was fine and shorter about 1-1/2hrs. They gave injection, hung around an hour, then scanned for 45 minutes. I was fine until they started to play the music, frank sinatras, my way, lionel richie's, say you say me etc. Every song for 45 minutes was that kind. I guess they tape & play music like that because of the kind of test it is...

The uptake was normal in the thymus and other organs. That's a relief. Need to know what to do, if they will remove the thymus or what. They wanted me to sign a, in case we need to do this and that (more) you may be billed (i totaled the column) over 6k. I would not sign it. I don't think its right they wait until you are already there to have you sign those things. That's what insurance is for. They already injected me. Well, one more test down. It was a scary time waiting for the results. It really made me re evaluate life. What's important, what's not. I have my health proxy in place. Working on will completion. Not taking anything for granted...

I have retinal damage in one eye. That doc wants them to ro mea, so have to give that script to the pcp, and said I should have already. I thought he meant to pulmo, he meant to the pcp. So another month lost on that.

I am waiting to get a call back to schedule a colonoscopy (can't wait for that test), he gave me script for medicine (that needs auth, waited for that to find out again it needs p. Authorization). I need to print a list of what needs pre auth and what doesn’t to avoid the hassle.

I have pcp appointment tomorrow. I changed to the rheum who is also an internist to ask what i'm supposed to do now etc. My eye doc said I need a pcp to "captain" my care. He's right on. I listened and changed over to someone who has her own office, one doctor (not an office where just anyone comes in), I was relieved that she is an internist too. Thank god.

I read about one case where a person with graves, after medication to treat that, the thymus involuted. The exact medicine is the medicine I was taking for 1-1/2 years a few years ago! I'm going to ask her about that since I have history of graves (that was being treated in the past), eye troubles and a thyroid that’s been up for the last year, that has not been treated. The old docs I used to see ignored the labs. I'm going to ask if she can either try me out on the med or send me to endo to work up my thyroid so this way they can see if the thymus involutes at my next ct which should be around oct/nov. I hope she checks the thyroid function to get that ball rolling, so I don't have to wait. I've read with thymus stuff, they are automatically supposed to check out the thyroid.

I need a referral to a participating & really good nm doc to test for myasthenia gravis (mg) per lung doc, he gave a name but they cancelled me and I want to make sure whoever I see is really good. The muscular dystrophy assoc. Has clinics (they have a lot to do with developing medicines etc that treat mg). If they do that, that's where i'd like to go.

I called to find out that doctor at the mda clinic close by is not in my plan & the girl who refers their is out until mid sept so i'm going to see what my pcp says. I called the neuro the pulmo wrote and the girl could not answer if this doctor is nm or anything about mg. I asked her to find out. She said he treats it. Do you think treating it and diagnosing it is the same? I'm not sure but would feel better going to a doctor who sees a lot of that type of problem. So that’s pending...

This pain and breathing thing is getting me good. I saved some of the strong pain killers for when it gets like that. I tried to go out and it was another disaster. I could hardly walk, the pain got so bad in the ribs. I took medicines and it kept on. I leaned up against the rack. Went home, the drive and turns hurt so bad. This should not be. So long with this and the breaks in between the bad ones are shorter. I'm going to ask the pcp for emergency medicine for when it gets bad. It's that or the er when it gets that way...

The pain killer helped and so did laying down, still, shallow breathing. It happens so fast, no warning. I have an overnight bag packed in case I need it fast. It's come close twice. Could hardly hold the clicker and press the buttons during the visual field test. The hand and fingers were so weak they shook, I had to change hands back and forth, but can type this fine today. Had double vision looking at that red dot with one eye. I kept sliding in the big chair it hurt so I sat in the one that had grip so my muscles would not strain to hold me up in chair.

I sometimes that pain goes around the ribs into the shoulder, down the arms. Sometimes into the sides of the neck. When it gets like that it feels a little like my circulation is not as good in my arm but mostly in the hand, feels like pins (but not needles). My right eyelid last night was closing slower then left, was a long day.

What other tests are you scheduled for? I've been wondering if I should change my pulmo doc. The er doc suggested another name but that one was not in my plan so this doctor came from a list. I'm not sure what to do about that. His assistant has lied to me on several occasions and is rude. Just based on her alone I want to switch. Do you think I should mention this to the doc tomorrow? She is in the same group as this pulmo (and others). There is another pulmo in that group who who on call was right on and a friend sees and treats her etc. I'm nervous about changing. One part of me wants to, but I think part of that is the frustration talking and the other side is i've told him things that he missed and I think i'd be further along in the treatment etc.

Have you found any thing that helps relieve the pain, even if it's small? Hope your tests go well. Were you nervous about changing your pulmo? Hope your feeling relief. Does the humidity and heat affect you, does it?

By the way, the antibiotics you took, had you taken the same antibiotic before?

A few yrs ago after taking augmenten (after relapse of upper resp infection ) after taking the augmenten for a couple days, I had weakness.

Hi,
sorry it took a couple of weeks to get back to you-what with all the hurricanes here (a tree fell on my car; i'm still responsible for the deductible,etc. Plus was out of power for several days), it's been a bit crazy.


Hope you're feeling better and are getting some answers. I would defintely tell the doctor about the rude office staff-sometimes I think they are just unaware of things like that and maybe they could handle it, if they knew. One of my co-workers has graves-they're going to try him on meds for awhile and he might do some new procedure rather than surgery-apparently you can take a radioactive pill that destroys the thymus, which is obviously less invasive.


I'm still in chronic pain, with no answers. Cat scan results come back tomorrow. Been almost a year now in pain. Really just want the pain when breathing, in my side, and in my hands to go away. Don't think the anti-inflammatories are helping as well as usual.


I feel badly about continuing to post these long messages on these boards, in case other people are bored. If you want, you can e-mail me privately.