MTX Beware & Thank You to those who supported and encouraged me...

[Guest guest]

Thank You to those who supported and encouraged me...

I just wanted to say thank you to those group members who took the time to help

me journey through the discovery of what my lung problems were. The update is

below. Of all the groups I searched and reached out to, based on current dx, and

potential differential dx like sarcoidosis that were being tossed around, you

folks were by far the most helpful and understanding, so again, thank you for

your support!

Prayers and gentle hugs to all of you,

Cheryl M (AK) - respiratory acidosis, et al

+++++++++++++++++++

Part of this post is my need to vent. I think we all get there from time to

time. Part of it is a warning to others taking methotrexate (MTX)!!

I have not posted or been on the list for awhile; actually, not much since

starting on my journey to determine the source of my lung/breathing/pulmonary

problems a few months ago. It has taken a long time to get referred to a

pulmonologist, then only b/c it was easy to add it on to rheumatology and derm

appts!! I am frustrated with my body, the doctors, and how I achieve... or what

I am supposed to do in order to live a life with any quality, given the multiple

overlapping dx I now have.

The latest additions to the laundry list include methotrexate lung, aka

hypertensive pneumonitis, aka intersistial lung disease, which may have started

showing up in my CT scans with lung nodules as much as 4 and a half years ago,

but more recently, absolutely about 9 mos ago when the radiologist and PCP

locally did not know what they were looking at, so decided to simply sit back

and watch to see what develops!!! When the pulmnologist redid the CT scan in

December, he immediately scheduled a bronchoscopy and lung biopsy, stating that

it is absolutely NOT something you simply sit back and watch. If my doc/PCP had

ever contacted the pulmonologist for a telephone consult last summer, or

immediately following the CT scan, or at any time, as he claimed he was going to

do, he would have known how serious it was. Going back now and looking at all

the signs, someone should have picked up on it long, long ago. The MTX was

SCREAMING to be noticed for its toxity and damage to my body!!! No one took

notice or did one thing until I finally flared my Ps/PsA enough to warrant

sending me south for the rheumatology consult.

I constantly complained to the docs I was seeing locally about left hip pain,

extreme fatigue, inability to do anything but sleep, lack of energy to even take

a bath, and need to use O2 throughout the day in response to exhaustion,

headaches, etc. Turns out he never sent the tests and paperwork he should have

sent to set up 2 out of the 3 consults. My left sacral joint has fused and I now

have an added dx of ankylosing spondilitis. Rheumy believes PsA is under

control, but my skin and fibromyalgia are not. Docs locally keep blaming pain on

the PsA, but the rheumy is saying that it is the FM that is totally out of

control and they are already doing everything poss to control it.

Obviously, my PCP is dropping the ball. When I start inquiring, I get told by

people who should know, that all the docs here practice in the same manner and

that changes docs locally is probably not going to change my outcome. Does that

mean we move? Where? Where does the temp stay in the 70s with minimal barometric

changes? We love it here in many ways, but I just seem to be getting worse and

worse!! Would my diagnoses be the same and my body progress in the same downhill

manner regardless of where I am, or the quality of docs, or is quality of life

and progression of the disease directly tied to quality of medical attn??? If

so, where do we go?? What do I do now??

I am so frustrated I could scream!! In the rheumy notes and what I find on the

internet, the best thing I can do for the FM and AS is to start exercising even

if it is painful. Yet, in person, he empathized with the issue of exercise,

stating that with the Ps flares on my skin, probably no pool, w/feet issues,

pool is best, might be good to get cycle for exercise. Seems like a bit of cya

and contradictions to me, but clearly, somehow, I need to get moving again. Of

course PCP is out of the office again!! Rheumy is 900 mi away and will only talk

to PCP about what next stept o take, but is also clearly miffed that I had not

been to see him in 2.5 yrs.

I feel like I am drowning in a sea of issues with no good answers!! Thank you

for listening. Sorry for the rant!!

Sincerely,

cmoralez (in the rain forest of SE AK)