MTX and Lung saga continues

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/23/2006 5:50 PM (GMT -7)   
I saw my rheumatologist this morning and we discussed the mtx and lung issue. He said that mtx can cause an allergic reaction in the lungs that mimics pneumonia. He believes that is what has happened with me, although he has never seen it act so quickly before (I've only had about 5 doses of mtx). Nevertheless, he would like to re-challenge the mtx once my cough gets back to baseline. I still have a bit of one, but I think it's allergies--not the same thing I had last week. My lungs were clear--they were not on Friday.

I'm going to re-challenge the mtx after another chest x-ray next week. After I have the reaction (and I'm sure I will because I know that it was the mtx that caused this), I'll have another chest x-ray. Just in time to take to the pulmonologist toward the end of September.

One thing my rheumy was not specifically stating, though, but was hinting at between the lines, is that the weird finding on my x-ray is not explained by either an infection, a virus, or a mtx allergic reaction. The "bilateral peribronchial cuffing" is a result that no one was expecting and no one knows how to explain. I think he's sending me to a pulmonologist as much for that as for confirmation that mtx is bad for my lungs. And you know what? I'm scared. Every symptom I've had for the last 4 years has been absolutely identical to my mother's disease course. You may recall that she died of MCTD. But specifically, she died of pulmonary hypertension from interstitial lung disease. Bilateral peribronchial cuffing is a typical finding on the chest x-ray of someone who has ILD.

I'll let everyone know how things turn out, but it looks like it will take some time. In the meantime, I must learn some patience.

Enough of a downer--now it's time to party! I'm going to grab some salsa and chips and veg out in front of the tv. My girls are finally in bed for the night...

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 8/23/2006 6:49 PM (GMT -7)   
thanks for the update, keep your mom in your happy memories.... enjoy the chips and salsa ~* yalinda

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/23/2006 8:54 PM (GMT -7)   
Wow, gosh El I'm so terribly sorry.  This is not a nice situation to be stuck in & waiting.
I would however definitely have repeated XRAYS, especially after the summer & when the viscous allergy season has passed.  This season is as you probably heard one of the fiercest allergy times on record.  So who knows how much of what is irritating and perhaps exacerbating your lungs & cough.
When the lungs & heart get involved, I know oh too well the "hit" of seriousness one gets with an AI disease.  It's a rough & scarey scenario.
But you're not alone.
We'll be here for you, thinking of you always & always for an ear.
Hoping you had a good salsa nite!  cool
You hang in there.
Sincerely,
Erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 8/24/2006 6:05 PM (GMT -7)   
oh gosh el- let us wait and see how things turn out for you before you hop to thinking other things...... i would not stay on the mtx fro sure....
 
i myself am battling  colitius from AX for a sinus infection c-dif this is the 4th time in 1.5 yrs i got this now it means flagly for 4 weeks and then difulcan
but please let us pray that this is not the same thing that you think it is..... nono let us be hopeful that it will pass and justa quirk thing that will go away!!! take care
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!!!


RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 8/26/2006 1:35 AM (GMT -7)   
Hey el, nothing interesting to add. I googled peribronchial cuffing, and came up with a bunch of stuff I don't understand. Not really unusual for me regardless of what it is I'm googling. Anywho, just wanted to wish you the best and ask you to keep us informed as you know more. Rock on superstar!!
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/26/2006 4:31 AM (GMT -7)   
Thanks Missie and Dave. Dave, I googled peribronchial cuffing too, and also came up with a bunch of mumbo jumbo. It is really a radiographic term; when I research it a bit further, it is a typical finding, along with other things, of congestive heart failure, pulmonary edema, and (I think) asthma. The real question everyone is asking is why was it on my x-ray, and is it truly meaningful? Rheumy and primary think it is meaningful, but they don't actually know what it means; hence the pulmonologist. It's not even typical of methotrexate lung, so go figure?

I suspect, and I've been right in the past when I go with my suspicions, that the mtx simply brought out a genetic predisposition for some kind of lung disease. If I have lung disease, though, it is certainly fairly mild. Lung problems are common in people with AI disease, yes?

In any case, I'm not going to worry anymore about it anymore. It's out of my control. Rheumy is going to continue with a series of chest x-rays to monitor what is happening in my lungs, especially when I go back on the mtx, and the pulmonologist will, hopefully, know what to make of all this.

Salsa the other night was delicious! Mango salsa.

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


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/28/2006 9:49 AM (GMT -7)   
hey El,
it's a terrible thing to add to the list & worry about. i was seriously freaked out when i was made aware of the heart & lung involvement from the RA. it took a while, but like you mentioned...i just make sure i keep any xray appts. and then i FORGET about IT. or try to. is it a dumb thing? nah. i mean, it's there and it's gonna be there...so in time, it weighs less & less on my mind until i have symptoms. but at hand, we've so much on our plate. so you will get through this. be careful & know many prayers go out to you.
sincerely,
erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/28/2006 5:16 PM (GMT -7)   
Poca--thanks for sharing your allergies with me. I never realized I was so allergic to so many things--it seems to get worse and worse every year. Never had a drug allergy before sulfasalazine--and I took sulfa antibiotics for years as a kid (chronic UTIs). It has to be frustrating for you to be allergice to most of your meds. So far, for me it seems to only be the sulfasalazine and perhaps the mtx. I tolerate enbrel and plaquenil just fine. I don't really know what good plaquenil is doing for me, but people have told me that they didn't realize plaquenil was actually working until they stopped taking it. I still hurt on plaquenil and enbrel, so I can only imagine what it would be like with nothing.

Erin--I didn't realize how closely related the heart and the lungs were until I started researching this interstitial lung disease stuff. It really is terribly frightening. I'm not as freaked as I was--perhaps the only reason I was so freaked is because of my mother's experience. I know I'm not my mother, but I watched her struggle with her diseases (ILD included) my entire life. And knowing the ILD was directly responsible for her death doesn't make me feel much better. But you're right--I'm not gonna dwell on it too much now. It is what it is--maybe one day I'll actually know what it is :)

Hope you're feeling better,
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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