Bab's others with lung/breathing issues

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 4/5/2007 6:35 PM (GMT -7)   
Hey Bab's I know we have touched on some things about your lupus pneumanitis. I was wondering how they DX'd it? One of the reasons why my doctor looked into lupus was because my lung problems/plus some swelling. Yes I smoked but my problems started in my 30's. Like most other doctors have told me they don't know what my lungs started getting so bad so young. I was wondering the difference between  lupus pneumonitis and copd and how they tell them apart. Also I find it interesting that the breathing problems seem to be a reoccuring theme here since the weather change.
 
Anyone?
thanks love ya
carol
God Bless
Carol
 
. Possible Lupus Nov 06. xanax X3,triam high BP, percocet, inhalers,COPD. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
God Bless our Troops!
 
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/5/2007 7:00 PM (GMT -7)   

Hi Carol,

   They stumbled onto my lupus pneumonitis after having a Ultrasound of the stomach. I started having SOB, coughing and pain in the lung area a few months earlier but, my Internal Medicine doc blamed it on smoking. The U/S showed a dark area in my lower left lung, so they did a CT to look at it further. The CT showed nodules, infiltrates, and scarring. Then I was sent to a Pulmonary doc for a Bronchoscopy with a biopsy and cultures that dx'd the Lupus Pneumonitis. I really don't know much about COPD, except for what the letters stand for and that its a lung disease. I see that dx at work all the time.

  If you haven't had a bronchoscopy done, I hope your doc will do one soon to see what is going on.

  I'm glad I listened to my rheumy on the treatment plan. I went with the Cytoxan Infusions instead of just staying on pred like the Pulmonary doc wanted me too. It did clear my lungs up in 6 months. It has been about a year and a half since I had the treatments, but with this weather I'm starting to have breathing problems again. I'm going to tell my rheumy about this tomorrow when I see her.

  I hope you get better answers and treatment for your lung problems soon. I hope this helps. Hang in there and keep fighting for answers.

                                                       Love, Babs


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/5/2007 7:18 PM (GMT -7)   

Thank you Bab's I will mention it LOUDLY lol. yes my pulmonologist did the same thing. take meds when I have breathing problems and live on oxygen. No mention of a broncialscopy. It doesn't sound real pleasant but how much worse could it be than being hooked to o2 forever. Hey nothing ventured nothing gained right? I am just wondering why they never did this test on me. I guess they just assume well it must be COPD because I was a smoker. I hope the doctor helps ya get squared away with the breathing. Not being able to breath is very frightening. Not to mention all the wear and tear it puts on your body.

 

thanks for the info. I will continue my search.

 

love ya

carol


God Bless
Carol
 
. Possible Lupus Nov 06. xanax X3,triam high BP, percocet, inhalers,COPD. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/5/2007 7:45 PM (GMT -7)   

Carol,

   ((Hugs)) I don't understand why they haven't done a Bronchoscopy on you either. I have to say, its not a pleasant test to have, but well worth it. It was done in the X-Ray Dept. under a mild sedative, but I was awake coughing and gagging...Yuck!  I coughed up a little blood for a few hours after but, no other problems from it. I was glad when it was over though!

  Did they do a CT and if so, what did it show? This is something your doctor should be taking more seriously. Not to try and scare you but, I was getting a lung function test every month till I started on the Cytoxan. My Rheumy sat me down and pointed to the numbers on the test results and I was loosing 10% of a certain number every month. Sorry, I can't remember what that number stood for. She said if that number got down to 50% I would need a lung transplant. It was at 60% when I started the treatments. Thanks to her aggressive treatment I got better.

  Oh, I'm not having trouble breathing. I think I worded that wrong before, sorry.  I have been coughing alot lately, a few little pains and very mild SOB. Nothing like before, I just want to stay on top of this before it gets any worse.

  I hope you sleep well tonight. Take care. I'm praying for you sweetie!

                                                Love ya, Babs


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/5/2007 8:14 PM (GMT -7)   

Hi Bab's, thanks for the info. I'm so glad you are better. I was DX's with asthma in 98 I think it was. I continued to be treated for that for a few years. Than I kept getting pnemonia and bronchitis my doctor sent me to a pulmonologist. He said I didn't have asthma and took me off the asthma meds. He said I have copd. changed my meds. He didn't do anything but take tests. That was also the first time LUPUS was mentioned.  He took blood tests and PLF tests. I always heard off handed comments about they were surprised my lungs were so bad giving my age. but never once told me there could be a connection between lupus and my lungs. I had no idea and was completely over whelmed with the COPD that I blew off the lupus I figured well if it gives me trouble sometime I'll get it checked out. (i didn't know any better). When I was in the hospital in 2003 my o2 stats were down to 88% so they sent me home with oxygen. In 05 my pulmonologist said I would be in a wheel chair in a nursing home in a year and ahalf. and I'd be looking at a lung transplant. I also have sleep apnea. but I never got a cpap. I was tested for it though. The last test I had done for lung function was down to 40% left. That was for social security. I didn't get any info on that back. I have actually had some fairly good days where I didn't even need my 02 lately. but than of course I get hit with some chest problems and I'm back on it again. Now I'm out here in oklahoma without a pulmonologist. and after evrything I have learned in this group I am feeling rather stupid that I have let things go like this. I'm also very angry that my doctors knew these things could be connect and never told me.

Ok I just wore myself out. I think I'll take my night meds and get some sleep. I have some real good questions for my doctor when I see her thursday.

Thanks for all your time and info. If you think of anything else please let me know.

 

love ya much

carol


God Bless
Carol
 
. Possible Lupus Nov 06. xanax X3,triam high BP, percocet, inhalers,COPD. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 

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