Lung Mystery Deepens

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/17/2006 3:11 PM (GMT -7)   
I called my rheumy's office this morning, and my rheumatologist, himself, called me on cell phone as I was car pooling home from work. I must admit up front that: 1) rheumy has never called me himself; and 2) he was called back from his personal vacation because no one else wanted to give me the news. They found something on my lungs from the x-ray. He mentioned something about cupping and infiltrates, maybe a bit of pneumonia (although I'm not sick). He has absolutely no idea what it is. He told me I need to consult a pulmonologist. It's not likely that the mtx caused whatever it is on my lungs because I haven't been on it but for 6 weeks or so. If I want to take mtx again, he will only give it to me once I receive clearance from a pulmonologist. He agreed to repeat my x-ray next week, and I guess whatever appears on it then will decide what I do. I'm a bit confused and very worried. I don't really have enough information to even seek out info. on the web. My appt. with my rheumy is next Wednesday, but he was very clear that he whatever is on my lungs is out of his expertise. He kept asking if I had an appt. with my primary. I told him I had no immediate plans to see her, but if I needed a referral to a pulmonologist, it wouldn't be a problem. I guess I'll just sit tight until then.

It must be Murphy's law at work that as soon as I find a medication that actually works for me, I can't take it. Although, if it means destroying my lungs I think I'll pass on the mtx.

Still in good spirits, just a bit concerned.

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/17/2006 4:08 PM (GMT -7)   
Hey El... hhmmmm... such a mystery... When will you find out if you get to see a pulmonologist? Let us know what happens... good luck to you.. Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 8/17/2006 5:51 PM (GMT -7)   
wow .... are they going to do another xray or ctscan?  i would think a ctscan would be the better choice?  i know when i had the spots on my xray i then had a ctscan.  i saw the pulmonary specialist and he still could not tell me what was in my lungs. just that i have 7 nodules pleural and sub pleural both lungs 4 on one and 3 on the other.  it too was not due to the mtx because i had the xray prior to taking the mtx.  he has no clue what it is says it must be RA related but not certain and is doing a repeat ctscan every 6 months to monitor size and amount.  it is very frustrating not knowing what is all over my lungs so i hear your fears and frustrations.
 
i am on mtx even though i have this going on so maybe things will work out for you too?  my next ctscan is nov. and that will be here before i know it! 
 
well i hope you get answers soon.... i know when i phoned my referral to the pulmonary doctor office and i said i had spots on my lung xrays i was seen that week!  make certain you mention that as fire seemed to hit my referral for an appointment.
 
let me know what they say it might just help me too :-) ~*yalinda

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/17/2006 6:15 PM (GMT -7)   
Thanks Ducky. I think I'll end up going to see the pulmonary doctor regardless. Yalinda, still after all this time they cannot tell you what is wrong with your lungs? do you have any symptoms at all? The only reason I called my rheumy with this cough this is because I read up on mtx and I know that it can affect your lungs, although it is not common. I could call my primary tomorrow and probably get a referral to see a pulmonologist. Perhaps I should?

The thing I keep thinking about is the fact that I smoked for 16 years; except that I had a chest x-ray 3.5 years ago (long after I quit) and there was nothing there.

I think my rheumy would still let me take mtx, as long as a pulmonologist can tell him what is on my lungs and that mtx will not alter it. But I have to see the pulmonologist. I think he agreed to repeat the x-ray next week just so I wouldn't be alarmed. His first words were to go see a pulmonologist. Now that I'm thinking this through, I will call tomorrow. If nothing else, I will have peace of mind.

Good night guys.
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 8/18/2006 4:05 AM (GMT -7)   
go for it! and ask about a ctscan verses another xray. your right the referral has to come from your pcp not the rheumy i was told because specialist's cant refer to other specialist's. so i phoned my pcp told him my rheumy rec a pul. md because of an abnormal xray and had ctscan already come back abnormal~got the referral approved over the phone ~phoned the pul doc, told the receptionist about the abnormal xray~ and got in within a week.

and no they so not know what it is and when i asked if it could be cacner i was told more than likely not because they are only between 2-4 cm in size right now and they would not show up on a special scan, pep? scan
(erin corrected me last time and i still forgot the name of the scan...ugh) and a biopsy he thought to wait on mainly because i am not a smoker and never have been. he also said it just might be from the RA. i tried to get a second opinion but the doc my pcp referred me to had a 6 mo. waitlist which i will see this guy before the other! i have no cough, morning sinus stuff but no cough. 2 years ago i had a ctscan of my abdomen and it showed 2 nodules in my right lung. we r uncertain if there were more already hidden then or if the others are new in the past 2 years, hence the repeat in nov.

it is frustrating though not knowing for certain as my grandparents died from lung cancer but my grampa was a chain smoker, and i mean chain!

good luck yalin

Mommysangel07196
Regular Member


Date Joined Jun 2006
Total Posts : 30
   Posted 8/18/2006 4:14 AM (GMT -7)   

Dear Elcamino, I am sorry to hear that you are going through this.  Hopefully soon they will be able to tell you what this is and what they can do to fix the situation. Your in my prayers. Hang in there and keep posting with updates.

                                          Andrea


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 8/19/2006 6:43 AM (GMT -7)   
Hi!
I have been on MTX for over ten years and last year I developed an atypical TB called MAI (mycobacterium avium intercellular). This is a noncontagious form of TB that you get from having a compromised immune system. Many of the meds used for RA supress the immune system (MTX, Humira, Embrel for starters). My pulmonologist said it had been very rare, but there seems to be an increase lately, particularly among postmenapausal women. The bacteria is normally present in the air we breathe, and normal people have natural immunity to the infection. People having chemo for cancer and HIV are the patients most commonly susceptible to this infection. The new generation of RA drugs that supress our immune system apprently left some of us vulnerable, too. I have been on a triple antibiotic regimen for the last 12 months and the recommended duration is 18 months. This was diagnosed by a bronchoscopy by the pulmonologist. I also had not been feeling sick, but had a sudden episode of coughing up blood. CT scan showed an infiltrate on my lung and then the bronchoscopy. It took several weeks for the results to confirm the MAI, as these bacteria take several weeks to incubate. I think you definately need to consult a pulmonary specialist. Most ordinary internists are not familiar with this relatively rare infection. If left untreated, it can be fatal. My most recent CT has shown that the infiltrate has gone. I will continue to be followed by the pulmonologist and an infectious disease specialist, as it is possible that the infection can return. Good luck! Frayda

Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 8/19/2006 6:52 AM (GMT -7)   
P.S. Before this MAI infection, I was also being followed for multiple small lung nodules that was found on a routine CT for follow-up for breast cancer. They had remained unchanged for 2 years. Since they have remained stable, both my pulmonologist and rheumy believe they are rheumatoid nodules, which are benign growths that can develope from long term RA. Frayda

Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 8/19/2006 7:50 AM (GMT -7)   
Hi,
 
Of course I cannot diagnose you but here is just another thing that by slim chance can be a possibility:
 
My sister had developed coughing and breathing problems about 6-7 yrs ago in her late twenties. She already has juvenille diabetes (diagnosed at age 1 and 1/2 when she suddenly developed extreme symptoms and ended up in a coma), hypothyroidism, and some kind of hepatitis related auto-immune condition. She also started getting lumps under her skin around the neck and clavicle areas. Every time she got a new lump, it was biopsied and found not to be cancer. Then she had lungs scans done and they found suspicious lumps in her lungs as well. So she also had a biopsy on her lungs. This also turned out not to be cancer...but she was finally diagnosed with another auto-immune disease called "sarcoidosis". Sarcoidosis is inflammation that can turn up anywhere in the body that causes lumps (granulomas) which can also cause scar tissue to form. The lungs are one of the worst places to have this because it can cause alot of coughing and can affect breathing. No one knows for sure what causes this - it can turn up in people who smoked or had been exposed to alot of chemicals or toxic substances, or people with or pre-disposed to auto-immune disorders (which she already has 3 others). My sister never smoked, nor lived with any smokers and never worked with chemicals or anything....but auto-immune disorders run in my family and she already has more than her share of these.
 
Luckily hers was diagnosed before it caused to much damage. Though there is no cure, she has been on high doses of Prednisone to keep it under control. Though she hates prednisone and doesnt want to take it anymore, plus pred affects her diabetes (though all her docs are aware of this.. i guess the pred outweighted the high sugar than can occur from pred in diabetics). She has also been on MTX and swears she will never take it again as it caused more problems with her liver (but I cannot remember what she took MTX for). But if she does stop the pred, the lumps will most likely grow larger and affect more areas in her.
 
Let us know the outcome of your test results...just remember it's not always the worst case scenario. I will hope for the best in your diagnosis!

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/19/2006 8:04 AM (GMT -7)   
Hi Frada,

Thanks for sharing your story. It is very helpful. My primary yesterday afternoon was adamant that I follow up with a pulmonologist, and of course, my rheumy said he would not put me back on mtx until a pulmonologist says ok. Primary also said I had an infection of some kind because it hit both lungs. Perhaps the ct scan will tell them more about what is going on. In the meantime, I started taking antibiotics. My chest still hurts, but I'm not couging as much today as I was yesterday. It just amazes me that I don't actually feel sick--just the coughing and occassionally a very sore chest. But then you said you didn't actually feel sick either.

I really hope that the antibiotics clears up this little problem.

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 8/19/2006 3:02 PM (GMT -7)   

hi el- i hope you are feeling better....as a side note to all of this, i too, smoked for about8 yrs on and off and then gave it up for good ten years ago at aged 40.

i was told that after 10 years the lungs should be clear as if you never smoked....but i was also told that you can still develope lung cancer WAY after you quit if you ever smoked...this scares me because my auntie died of lung cancer in her 70's after she smoked when she was young and then quit in her 40's also...it hit her and it killed her...so we in our ignorant knowledge and being conned by the tobacco people ( in the 60's was the fist ever warning on a pack of coigs taht it was bad for you,) got suckered into a bad habit for which at some point ion the future we may have to pay...i wished i never smoked at all.

i told my kid i would spank him if i ever caught him smoking and he is 21. he told me he thought it stank and would never do it or even wanted to try it and wondered why i ever did it ( when he was 5 i used to smoke a few a day but then quit when he was 10 for good) i told him i did it b/c at that time during the 60-70's my mom did it my dad did it and it was around all the time and it was a posh thing to do.

if we look back in time at the old movies, all you see is betty davis smoking and drinking, all the men were smoking and drinking back then and it was shown in the movies to be okay thing to do.

well in the 70's it  was found out to be not so good of a thing to do and a stupid thing to do. nobody lobbied against the big tobacco company b/c they were too big and powerful and strong. but the fall out from people dying from all kinds of cancers associated to smoking were beginnign to creep up as folks wised up found out how bad it is for you, then the big tobacco companies began to take some responsibility for there marketing towards little kids and own up to the fact that smoking is an awful thing to do and no one in the right minds who knew what they were doingto their bodies would continue on with it ....and how nicotine is habit forming and a drug in and of itself which to my mind should be banned, i think all tobacco products should be banned altogether....the indians gave us tobacco and we gave them booze.....so for every drinken indian lots of white folks died from smoking and cancer/like illnesses... sorry i got on this tangent but i reget ever having smoked a day in my life and wished i had parents that didnt do it either, b/c they were my role models when i was young so monkey see, monkey do as a child.....


9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/20/2006 5:01 AM (GMT -7)   
Baybreeze, thanks for your insight. I had read that sarcoidosis is a possibility. I'm sure my rheumy may have tested me for this, or would if I started showing more symptoms? I've never had lumps under my skin, though. My rheumy follows me pretty closely, so I'm pretty sure he's just taking notes. He's very cautious and he will not say anything without having absolute proof.

Missie--I also truly regret having smoked. My father smoked when I was growing up, and I started by stealing cigarettes from him. Then my older sister actually taught me to inhale. Once I hit college I thought I was so cool that I smoked. After that, I was hooked, and had a horrible time quitting. I finally quit when me and husband went into fertility tx. My doctor told me he would withhold tx until I was smoke free for 3 months. Me and my husband quit that day and I've never looked back. Best decision I ever made. And I know that if I ever smoked a cigarette again (even one), it's all over. My sister still smokes after having quit for years. Rheumy said that statistics show that if I started smoking again, I would be a smoker for the rest of my life. I have this horrible image of being an old lady dragging around an oxygen tank. That image keeps me off the nicotine.

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

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