Behind closed doors.....

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Inflamedchic
New Member


Date Joined Jul 2014
Total Posts : 5
   Posted 12/9/2014 11:01 PM (GMT -6)   
Behind closed doors.... I'm flaming mad!!

I'm 40 something, have had several bouts of pericarditis, pleural effusion with thoracocentesis is 2009. Did fairly well until April of this year with onset of chest pain. Pulmonologist said I had atypical infection, so he gave me antibiotic, which helped the dyspnea quite a bit. Still had the inspiratory pain which he thought would get better post pneumonia. It really hasn't. New "nodules", ground glass stuff on CT. Fine. Repeat Ct 6months later, more nodules were discussed with me by Pulmonologist. He thinks they are inflammatory, rather than cancer. said NSIP type changes on HRCT, and pleuritis ( tho he could not hear rub today) from lupus.(NSIP =nonspecific interstitial pmeumonitis). Bottom line is since I am already on immunosuppression, no other treatment options. Steroids have bad side effects he tells me. (As if I don't know). So, I have no alternative other than to live with this chest discomfort, hoping the pmeumonitis calms down and I don't end up with irreversible interstitial lung disease or fibrosis, for short. Hoping, it goes away and doesn't get worse. Thinking, I care for my elder parents, am a sole provider ( income), thinking....how am I gonna tolerate this long term, or God forbid it worsens. In the past, I've always managed to get better in time. Angry now that I am not. Fearful of what is ahead. On bright side.....maybe not cancer.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/9/2014 11:07 PM (GMT -6)   
Have you gotten a second opinion to be safe?
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Inflamedchic
New Member


Date Joined Jul 2014
Total Posts : 5
   Posted 12/10/2014 10:13 PM (GMT -6)   
No I haven't. I agree, that is a good idea. Thank you for the suggestion. I just came from pulmonary yesterday. Will be following up with rheum to see what he says. I guess then I could look at finding a second opinion. It's concerning to me that I got this flare while taking imuran. I guess I thought it would keep inflammation at bay. Thanks again couchtater.
Inflamedchic

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/10/2014 10:19 PM (GMT -6)   
There are other options if the Imuran isn't working for you -- it did nothing for me, but the Cellcept put me in a kind of remission. MTX is also in that 3rd phase of treatment.

1) plaq, 2) pred, 3) imuran, cellcept, mtx, 4) other stuff...
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Inflamedchic
New Member


Date Joined Jul 2014
Total Posts : 5
   Posted 12/11/2014 10:06 PM (GMT -6)   
Really. I didn't know cellcept would be better option for plumonary issues than imuran. Thanks for the tip. I will ask Rheum about it when I see him. I am a bit fearful of cellcept as I have heard it may have more adverse side effects than imuran. Though, maybe that is not true in every case. I am not looking to increase my intake of these kinds of meds, but I don't want to wake up one day with oxygen tubing and irreversible fibrotic lung changes either. I gotta work! Nothing sucks more than going through the work day when you feel poorly.

I appreciate your input, and I will ask about cellcept. Maybe, (hopefully) the inflammatory changes will subside in time. I have read about "chronic lupus pneumonitis". Wondering, were these folks treated with things like imuran /cellcept and developed ILD anyway? or is that acquired in folks without any interventions.... ? or both? I don't know.

Anyway, thanks for you comments. HAGN Lynnwood !
Inflamedchic

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 12/12/2014 2:19 AM (GMT -6)   
First, so very sorry your going through all this. I. Have ra not lupus, but the meds for the two are about the same it seems. I get pneumonia easy and my doctor won't give me anything along the ways of imuran or humira ect...
And because of reactions to plaqeunil and medrol dose packs my medications are limited to mtx or prednisone. So do have a heartfelt talk with you ra doc about medications and make a jounel of what you've tried that has not helped and work from that and if your doctor is un willing to try a medication change then seek out a second opinion...
Hope this helps and really hope your doing better soon.
I also agree with Lynnwood that's realy good advise.
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/14/2014 1:41 PM (GMT -6)   
Not saying Cellcept "would be better for pulmonary issues". Just saying three meds are used at about the same stage of Lupus - Imuran, Cellcept, and MTX. As far as I know, there are no clear guidelines of which is better/worse for any given situation, jut as there is no predicting which of these will help any single individual.

Each Dr has there own way of checking thru symptoms & deciding what order to try these in. For me, Imuran was first with no results, Cellcept was second with great results given enough time.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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