Methotrexate lung disease

[genko_b]

I'm reporting here about one of the possible side effects of methotrexate, which is damage to the lung tissue. There can also be inflammatory lung involvement with many auto-immune conditions, and so you should be persistent in following up on any lung symptoms you may be having.

For me, the symptoms leading to the diagnosis of methotrexate lung disease were: fever, night sweats, weight loss, dry cough, and shortness of breath. After eliminating all possible infectious conditions we were left with methotrexate lung disease as a diagnosis. I had been on methotrexate for 5 years before these symptoms occurred, but they can appear at any time during treatment.

I stopped taking the methotrexate when the fever appeared, as I always do with the immunosuppressants I'm on, and after two months of illness am just now beginning the long haul to recovery. Today I had pulmonary function tests done and they indicate my lung capacity is still good, no change from baseline tests five years ago.

However, the diffusion is much much lower. This is a measure of how effectively your lungs can accept and absorb oxygen from the air. Mine was at 98%, excellent, 5 years ago. Now it is at 77%, a big drop. It needs to be at least 80% to be acceptable, and should be much higher in order to carry on for the whole day.

The diffusion score is an indication of how much damage there is in both lungs from the methotrexate. I'm trying to heal without adding any more meds, but may need to try prednisone to reduce the inflammation if I'm not making any progress. There are mixed reports on how effective prednisone is, and the pulmonologist was fine with me not using it for now.

The big question is how much permanent damage there will be, and that will take at least a year to determine. I learned after the fact that the mortality rate for methotrexate lung disease is 17 - 20%, which is not nothing. Please take any lung symptoms seriously, especially if you are on this drug.

Take care,

Genko

[cargillwitch]

it hasn't been suggested yet that I take methotrexate but the more I hear the more certain I am it is not for me.

Anything that suppresses the immune system causing more infections, risk of cancer and now lung damage makes me question whether it is just exchanging one set of issues for another- possibly much more lethal in nature.

I am so very sorry you have had such a serious side effect. I do thank you for alerting us to the possibility .

[eye2dry]

I had trouble in the beginning accepting Plaquenil d/t side effects to your eye. Then it was taking MTX and I worried about increase of lymphomas with it.

I had forgotten all about what I read about the lungs. Do you know if this complication is "rare". do you have percentages?

thanks for the reminder...I will keep alert to any cough, night sweats, etc..

eye2dry

[jazzlover]

I have a friend with RA who now has permanent damage from metho and she was being checked regularly. Scary stuff.

[Bucky]

However, the diffusion is much much lower. This is a measure of how effectively your lungs can accept and absorb oxygen from the air. Mine was at 98%, excellent, 5 years ago. Now it is at 77%, a big drop. It needs to be at least 80% to be acceptable, and should be much higher in order to carry on for the whole day.

The diffusion score is an indication of how much damage there is in both lungs from the methotrexate. I'm trying to heal without adding any more meds, but may need to try prednisone to reduce the inflammation if I'm not making any progress.

Genko,

I'm glad you have some answers to what's been going on with you.  What is the plan of action now?  Do you have to breathe in any oxygen to increase your oxygen levels?

You say you're trying to heal without adding any more meds - what exactly does that mean?  How are you doing that?

I hope that you will feel better and better each day.

Take care and please keep us posted on how you are doing.

Hugs,
Bucky

[artsyamerican]

Since you mentioned lung disease to me - associated with Methotrexate - I stopped taking it.  It was getting to the point where I couldn't breathe at all! Since I don't have insurance anymore - I was trying to heal myself with my enhaler and prednisone and celebrex - all to help the inflammation - and luckily it did the trick. Of course it may just have been allergies - I live in FLA and the pollen count has been sky high. But I had a bad feeling about Methotrexate anyway - so - like another poster said - you are trading one problem for another.  I guess pain cant kill you - unless it makes you ram your head into a brick wall - which at times I have wanted to.  My truly...I am finding that Prednisone and Celebrex have helped me a bunch.  The Celebrex does hurt my stomach but I do try to take it around lunch time.  Thank you for sharing your story!!!!!!

[mshistory]

Thank you for sharing this - I already have lung issues and don't think I would ever want to risk making that worse with MTX. I know it's probably a rare complication, but I often seem to be in that 1% anyway  I hope you're able to heal and there is no or at least very little permanent damage.

[Carebear]

Thanks for sharing, Genko.  I sure hope the damage is reversible.  It is always good to remember that these drugs may have serious side effects, and that we need to remain vigilante.

Having said that, I have been fortunate to enjoy the benefits of Methotrexate for six months now, and plan to continue to do so for as long as possible.

[irish]

genko, I am really sorry that you ended up with this methtrexate damage to the lungs. I know that it needs to be addressed whenever people take methotrexate and that generally if caught earlier enough the effects usually aren't as severe---at least according to some reports. Just depends on the person I am sure.

The problem we all have with these darn meds is that we really don't have a roadmap of how bad off we are going to be or get in relation to if or when we should start the meds. I was on the methotrexate for close to 4 months and I was feeling much better but had to quit because of infections---later found out I had low t-cells.

I am taking the plaquenil at a low dose and I can tell the difference as I have more energy, etc. and less inflammation in my nose and throat. With that being said, my myasthenia is better but it doesn't stay better as it comes and goes more often than not. Soooo, like the rest of you, here I sit. I wonder just how bad I need to get before I should take a new drug or if it is even worth it.

I guess at this point all any of us can do is take one day at a time. If we get so bad that life is pretty lousy then we will have to give serious thought to adding a new pill in hopes that it will improve our life without knocking us down another notch.

Good luck in your healing process and I will keep you in my prayers. Irish

[genko_b]

It really does come down to a balancing act between the diseases and the meds. The methotrexate was very effective for my joint pain (RA) for years, and it is highly unusual to have this reaction (about 1% have it), and usually it happens within the first few months. My rheumy has only had one of the many many patients he has prescribed methotrexate for develop this, and so he was very surprised that it happened for me.

One thing I would say is to keep up monitoring the blood work. Before my lung symptoms started my white count went down very fast - from 4.0 to 1.8. That should always be a warning flag. Fortunately I stopped both the methotrexate and the CellCept right then, which is why the docs are hopeful the lung function will come back.

Bucky, they often give prednisone to people with this condition to try to reduce the lung inflammation more rapidly. But the pulmonologist told me there is no evidence that prednisone lessens the permanent damage, and it has considerable side effects itself, so I'm toughing it out, with her support. Obviously I won't go back on the methotrexate, and I have not started back on the CellCept either, with the support of the rheumatologist. We are just going to wait and see how I do. I am still on Plaquenil, plus the symptomatic stuff - Evoxac, Restasis, and so on.

Thanks for all your support, folks. It really helps!

Take care,

Genko

[genko_b]

Interesting update today. I have a colonoscopy every 2 years because of long-term colitis (another autoimmune friend), and had one scheduled this morning which I went ahead and did, letting my gastroenterologist know about the lung situation.

They were very careful with the sedative (I was actually awake this time for the procedure, against my wishes), kept me on oxygen, and monitored it closely. The GI doc ended up taking biopsies the whole length of my intestine this time, because it showed cellular damage, very possibly due to the methotrexate as well. I will let you know the results of the tests when I know them. No sign of colitis or polyps, though, which is good.

Genko

[irish]

genko, I am sure glad that you didn't put off that colonscopy. I think you are going to be one for the methotrexate books. This is not anything to brag about, that is for sure.

I sure hope that the biopsies come back with very little damage to the tissues in your colon. I am really hoping and praying that things turn around for you really quick. Hopefully, being off the drug and resting a lot will help with the healing process.

Have you ever thought about watching funny movies/tv shows so you can laugh and increase your endorphins. This has been done by a few people with cancer who had some good results. The extra endorphins produced from laughing and happiness would sure help. I hope that there is something you can do to keep your mind busy.

I know from experience that too much brain time on ones hands can cause a person to get very down in the dumps at a time when we need to remain in good spirits. Keep on posting so we can keep up with your journey. Irish

[Bucky]

Genko - how are you feeling these days?

Thinking of you,

Bucky

[genko_b]

Thanks for asking, Bucky. I'm feeling much better, although I'm still having bad bouts of coughing.

My strength is gradually coming back, and I'm beginning to do more of my regular activities. The pulmonologist cleared me to go back into the prisons last week. I was supposed to go back to the AIDS hospice today but was told to stay home. Over half the clients and staff are suffering from a very nasty respiratory virus, and they were concerned that I might get sick and not be able to fight it off.

I've been out in the garden several times, getting ready for spring.

The gastroenterologist's written report on the intestinal inflammation was pretty vague, and so I have an appointment with him in April to go over them.

So now it is mostly a waiting game to see how much lung strength comes back, and to see how well I can manage without methotrexate and CellCept.

Take care,

Genko

[Bucky]

I've been out in the garden several times, getting ready for spring.

Genko,

I'm glad they told you to stay home yesterday and NOT to visit the prison.  I know your prison ministry is a great work - but, in light of your health issues, we don't need you to come down with some nasty bug that you might not be able to shake.  I'm glad the prison people are looking out for your well-being.

Being out in your garden is the best RX you can be given!!  Anything "new" being planned for this years beautiful gardens?

Just wondering since you have all those lovely old Christmas ornaments - do you have any heirloom plants in your garden?  My late MIL use to get seeds from relatives of their flowers and plant them.  We have a rose bush here at my house that was started from a rose cane that belonged to my husband's great, great grandmother.

My MIL was always saving seeds from flowers, fruit, vegetables and then planting them.  We had a peach tree she planted from a seed once (lightning split it in two and we ended up just chopping it down  ).

I hope you'll share some more of your lovely pictures with us this year of your beautiful gardens.

Don't overdo it and may you continue to improve each day.

Have a good weekend.

Bucky