Re: Methotrexate Lung Damage - Beware

[Guest guest]

Hey C Moralez,

My name is and I just started taking methotrexate. How do you know the

MTX caused your lung condition and what were the symptoms so I can look out for

it myself?. Sorry to hear about your complications. One thing I noticed as that

doctors rarely if ever tell you about diet or exercise I have started a new diet

as well. You are what you eat as they say. I got a book called eating away

arthritis and it's got a lot of helpful tips and diets you can try. Everyone is

different but at least you stay a little more healthy and less fatigued. Good

luck

C.

[Guest guest]

You poor thing. You have every right to vent. I belong to the Spondylitis

Association of America and they have held true for me to their motto: " We know

how it feels. " http://www.spondylitis.org/main.aspx As a member I have access

to their member recommended rheumatologist directory. There are only

2 listed for Alaska:

Armstrong, MD

2841

DeBarr Rd, Ste 44

Anchorage,

AK 99508

907

277-1375

Templin, MD

Alaska

Native Med. Center

4315

Diplomacy Dr

Anchorage,

AK 99508

907

729-2061

I'm in Indiana and often feel like I know far more about my disease than any doc

here. I have psoriatic spondylitis running in my family. Dr. Gladman, head

of the Psoriatic Arthritis Clinic in Toronto, has a new book out that says she

sees back involvement (spondylitis) in half of her psoriatic patients. I took

my daughter to a now retired rheumy in Cleveland to get a recommendation for

Enbrel which is wonderful for controlling my problems without poisoning me like

MTX did. We have a member of my spondy support group who goes to the Mayo

clinic for his rheumy. So if the 2 above can't help the list has lots of docs

in the lower 48 to choose from.You might consider the possibility that outside

of the MTX caused problems ( I got migraine headaches on MTX . no lung problems

thank heavens!) all the others may be related to your autoimmune arthritis and

if you get a truly effective treatment for it the other problems may

disappear. I was

diagnosed with fibromyalgia, chronic fatigue, toenail fungus and dandruff

(docs couldn't even recognize my forms of psoriasis). The fatigue factor is a

part of any autoimmune. I still remember the miraculous start of my adventures

with Enbrel. First thing I noticed just a few hours after the shot was a let

up in that crushing fatigue. I joke to people that Enbrel is truly a miracle

drug because it " cures " not just my joint pain but also my fibromyalgia, chronic

fatigue, toenail fungus and dandruff!

Good luck - I hope you find relief. My daughter said Enbrel gave her her

life back. She's now working on a PhD in immunology at U of Michigan. We

know how it feels.

Janette

[Guest guest]

I am so sorry you are dealing with this. It does sound like your Drs dropped

the ball. If you don't mind, could you answer some of my questions so that we

can be more informed? 1. How long have you been on MTX? 2. What were your

symptoms that led to the CT scans? 3. How do you know it was the MTX that

caused the problem? I am not doubting you I just want to be more informed. I

have been on MTX for 18 years. I have never had a CT scan of my lungs but I

dont have any symptoms either. Just wandering if I need to have one done. I

will say a prayer for you and hope you get better.

Thanks,

[Guest guest]

:

Personally, if you have been on MTX for 5 yrs or more, I would ask for a high

res chest CT scan (HRCT) to check out your lungs -- precautionary if nothing

else. I wrote a long response re: symptoms, etc. that includes a ref in the

subject heading that it is a long post/response. If that does not answer your

questions, I would be happy to try again!!

Also, I have been researching scholarly articles online and have found a pretty

good resource this AM - www.uptodate.com - they write w/tons of links and

footnotes for both providers and patients. It is $19.95 for 7 days access and

$44 (?) for 30 day access to everything on the site. So far, it appears to be

worth it for me. Others may also find it useful.

Just as an aside, I am beginning to realize that of all the side effects I

recall reading about or discussing with the3 pharmacist or provider when I was

first placed on MTX, I truly do not recall ever discussing the possibility of

any kind of lung issues with anyone. And, if it is so obviously linked like

this, why didn't anyone recognize is in the first ct scan 4 1/2 years ago? Or

even more recently? One of the articles I read this AM recommended that we have

baseline readings and it made me think in terms of the TB testing that is

required before the biologics and/or MTX ever starts. We get baseline

mammograms. Perhaps we should be getting a baseline HRCT along with the TB test

before we start taking MTX. Also, everyone on MTX is supposed to be taking folic

acid faithfully -- they do not really explain its purpose, but the articles I am

reading impress upon the use of folic acid as a potential aid in keeping the

worst MTX side effects under control for some patients. The emphasis put a new

twist on the folic acid's importance, as opposed to how it was originally

presented to me. I took mine faithfully, however, I respect its importance quite

differently now.

I cannot help but continue to question whether or not a rheumatologist would

have been on top of all this, MUCH earlier! There are no rheumys in our area,

therefore the PCP steps into that role, with long distance back up available as

needed and/or referring us out (900+ miles) to see them on an as needed basis.

When I lived in an area with local Rheumy, I routinely saw him/her every 3-4

mos.

Thank you for the support and discussion!

Cheryl M (SE Alaska)

[Guest guest]

I've only just read your e-mail and some of the subsequent ones about MTX and

lung damage. Thanks for bringing it to everyone's attention (or at least those

like me who were not familiar with this particular side effect.)

I am so sorry this has happened to you. I feel fortunate to have a wonderful

internist who keeps on top of things and a rheumatologist who believes that

patients and doctors have to be partners and while she may not always agree with

me, she listens to my requests.

I can understand how difficult the thought of working out must be when you're

not only in pain but having difficult breathing, too. All I can say is that if

you can find access to a pool, even just walking in the water will make you feel

so much better and help loosen your joints a bit. And it is almost pain free

(at least for me). The water makes you feel almost weightless and takes so much

pressure off that it makes it possible to do things you'd never dream you could

do on dry land!

Good luck in your quest for better care.

Joanna Hoelscher

[Guest guest]

I ,too have ground glass opacities on my lungs from methotrexate and scarring on

my lu ngs from methotrexate . i was on it for 7 years . I have never smoked in

my life . beware , The doctors tried to tell me that this was not from the

methotrexate and that I must have been a smoker at some time . I never smoked

cigarettes. cathy from ma