Re: Methotrexate Lung Damage - Beware (response for more info - long)

[Guest guest]

Janette & (any others concerned about MTX):

I was initially started on MTX Sept 2003 by rheumatologist. They did regular

visits, checkups, blood work every 3-4 mos., etc. By Mar/Apr 2004, I was on the

max dosage of 25mg/wk. When I left the lower 48 and initially moved to Alaska

w/o a local rheumatologist (unknown til too late!!), I was seen at a clinic that

cont'd the practice of monitoring MTX and regular bloodwork faithfully. It is

only after transfer to a regular PCP, upon access to medical insurance, that the

regular lab work became very laxed & hap hazard -- not sure why.

The first indicator of problems to local docs should have been the nodules in my

left lung during hospitalization summer 2005, but I only know that now

(radiologist apparently did not know what he was looking at either and

considered them " non-pathological " )!! Apparently, the mouth sores & sore throats

should also have been noted, but I always looked at them as side effects, not a

toxicity issue. Possible that I overlooked other side effects same way, at the

time, not realizing that I even needed to be worried about lung damage like

this. Looked at it as a +/- of what it was doing to address the Psoriasis and

PsA.

[biggest problem summer 2005 is that they were trying to save my life at the

time, so eliminated all my meds and prob pd more attn to the fact that my left

lung was collapsing than the nodules, except that they also discovered that I

had gall stones through testing they did and decided that they could be dealt

with later since no thought I'd survive surgery at the time AND they actually

told me about this issue!!] They were very careful w/meds once began returning

and I was only on 7.5mg MTX, ironically increased to 10mg about 2 mos prior to

seeing specialists to see if that would help!!!

I have been on 500mg of Remicade (5mg/kg every 6 wks) since summer 2007, when

first rheum visit since lvg the lower 48 in April 2004 confirmed that the Enbrel

had lost its effectiveness. It initially did great, just like the exp with

Enbrel. Pain and flares reduced, including my skin, and w/that the fatigue

issues resolved in large part as well. Typically be quite tired & want to sleep

during the first 4-5 days after infusion, then energy improves, until the next

infusion was close by (could feel how tired and painful I was getting). Jan/Feb

2009, I noticed that all I wanted to do was sleep despite my Remicade. Brought

to doc's attn and Mar/Apr he decided to redo previous sleep studies (I also have

both obstructive/central sleep apneas). Since previously " blamed " at least the

central sleep apnea on my meds, I made sure there was little or nothing in my

system this time around. Dr doing sleep study was duly plsd when she found out

after the study for basically the same reason -- I wanted to know what caused

the central sleep apnea and be able to address it.

Arterial blood gases are drawn as part of sleep studies. Each time, they showed

residual carbon dioxide in my lungs (you can find info best under " respiratory

acidosis " ), which again, no one told me until the 2d round Mar/Apr 2009. I

started researching the residual CO2 implications on the internet in an effort

to understand what they were telling me, as I often do w/my various diagnoses. I

was exhausted all the time, still unable to do normal daily tasks, like

completing a bath w/o passing out, and the smallest things wore me out. It

became more and more evident that headaches, fatigue, lack of desire to do

anything, etc, was only positively impacted by using oxygen more and more during

the day and/or breathing outdoor air.

In addition, I was periodically breaking out red bumps that form pimple like

whiteheads on my legs, arms, and other parts of my body. I forget the exact

name, but they were ultimately dx as coming from my loofa sponge. We had to

start being much more careful about disinfecting the loofa sponges, only keeping

them a short time, super careful re: washing and cleanliness of the towels,

sheets, wash clothes, and bath tub b/c of how easily I seemed to break out. I

now known from researching the toxicity and " allergic " type reactions to MTX

that this is yet another symptom of the MTX!!! My PCP never expressed any poss

connection whatsoever, nor did any others in the practice who saw me. Very

similar to attitude toward abcess on elbow that nearly killed me - if it is

" gone " , then must be " cured " , therefore no need for f/u or further

treatment/investigation!! Attitude nearly put me in my grave summer 2005.

Research I was doing on the internet re: CO2 in my lungs, monocyte results in

bloodwork, etc. - I finally posted to Just Answer for doctors and corresponded

with a wonderful doc who has treated a very diverse population around the world,

including astronauts!! He gave me a list of tests that should be run, along with

other issues I should be concerned with. Made appt with PCP and shared info

which

FINALLY convinced PCP to have chest CT done. Doing w/o contrast, radiologist was

done in less than 5 min, sliding partially into machine 2x. (Same test done

again recently down south took at least 15 min, reinforcing my assessment that

the first was not properly completed.) Showed " ground glass opacities " , more

nodules, and generalized conclusion that basically said this is what they saw,

but not sure what it means, if anything!!! Local PCP seemed to respond the same,

but also assured me he would contact a pulmonologist and discuss. (I now do not

believe that ever happened.)

Five min, w/info spoken: ground glass opacities on chest CT, and I am on MTX,

was ALL IT TOOK for the ç to begin to ask questions about energy levels,

fatigue, breathlessness upon exertion, etc. and immediately impress upon me the

need for a bronchoscopy w/lung biopsy to be performed immediately. Same response

later the same day from rheumy, along with stern instruction never to take MTX

again!! Now obvious to me that it was obvious to them what they were looking at

and certainly would not have taken a full year to get to this point, had I had

quicker/simpler access to either specialty, OR IF my local PCP was talking to a

specialist during the past year!!!

I always go to my appts prepared, with questions written out. I share info with

my docs when I have been researching on the internet. I show great respect for

them and have always thought we had a good relationship. I frequently defend the

quality of medical care available in this part of AK, and the ease with which we

can be sent south whenever necessary. We love it here, but if quality of life is

directly connected to access to quality medical care, then I am not sure we can

stay. As a friend recently stated ever so succinctly --

" this is not living " . The degree of lung damage seems to be directly related to

how much or how long (ie. how hard) it is to heal the damage and regain some

energy w/o the MTX. Since I am still sleeping 12-18 hrs a day sevl weeks later,

the next step is 40mg bolus of prednisone w/tapering, and poss antibiotics. I

see my PCP on Tues -- earliest available w/him returning from holidays.

Hopefully, this helps!! I will try to answer any questions.

Cheryl M.