Methotrexate and Chest infection.....again! - NRAS

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Methotrexate and Chest infection.....again!

ellilu58 profile image
10 Replies

A year ago I was doing really well on 15mg Mex but still getting a lot of pain so rheumy decided to increase dose to 20mg injection....and never been right since. I started having chest pain and bouts of breathlessness so GP said to come off Mex. Xrays were clear. Rheumy restarted Mex after 2 months at 15mg and after a week got thrown into a belter of a chest infection that needed two lots of antibiotics to clear. Seriously thought I was going to and wanted to die! Waited a month once chest clear and rheumy started me ...again...on 12.5mg of Mex....and I really didn't want to have it but she totally insisted. And you can guess what happened...... Now, after another two month stint of not taking Mex ( and RA IS getting much worse so I do need a DMARD), I'm on 10mg Mex - have had just one injection and four days later, have yet another crappy chest infection that is needing antibiotics. GP and Rheumy in contact with each other - GP wants me to stop Mex for good but Rheumy is insisting I get chest clear and recommence it....apparently she really likes her patients being on Methotrexate.

I've tried sulsaphazine and hydro-whatsit in the past but had very bad side effects and Mex is the only thing I've been able to tolerate.

Anyone else had this experience of chest infections with Mex. I'm sooooo fed up :(

Thanks peeps ...hope you're all well xxx

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ellilu58
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10 Replies

Your rheumy sounds just like mine. I was on MTX injections for several years, successfully, in spite of having Bronchiectasis. Had to come off it so I could have chemotherapy. When my cancer treatment had finished, she put me back on MTX but this time my ALT became elevated. So she suggested stopping it for a few weeks to see if the result improved - it dropped from 88 to 44. She's giving me a bit longer off it but increasing my Leflunomide dose to counteract this. She is now talking about putting me back on MTX at a lower dose. I'm resisting. My Bronchiectasis is greatly improved when I'm not on MTX. I hope you find something that suits you better. Maybe your rheumy might consider biologics.

ellilu58 profile image
ellilu58 in reply to

Keep on resisting! thanks for your reply. My rheumy nurse has suggested biologics but rheumy still won't go down that route....very tempted to tell her just to stuff it all.

Hope you're much better after your chemo and that all is well for you now. xx

helixhelix profile image
helixhelix

That stinks! If I were you I would either ask your GP to refer you to another rheumy, or write a letter to your hospital PALs to complain that you don't think your concerns are being taken seriously and ask that you be considered for a different treatment. What's the point of forcing you to take MTX if you can only tolerate such a low dose it will hardly do much for your RA? Endless courses of antibiotics are really not the answer.

ellilu58 profile image
ellilu58

You're dead right helixhelix. .I'm going to have a proper chat with my GP once I've got over this latest CI and see what she says....and she's probably as pigged off as me cos she knows how bad I've been. Fortunately I've got an excellent relationship with both my GP and my rheumy nurse so I'm defo going to do something and let rheumy nurse know my views. Like you say, what's the point of such a low dose that's doing me no good. Grrrr......Thanks for replying. Just wanted confirmation that it wasn't me being a fussy ole git :) xx

Notmeitsyou profile image
Notmeitsyou

Please read my story of what happend to me on methotrexate

ellilu58 profile image
ellilu58 in reply to Notmeitsyou

Hi...I can't find it! Where is it....ahhhh!! x

Notmeitsyou profile image
Notmeitsyou in reply to ellilu58

Yes if you click on me check responses then when you see me scroll down the page and you will find my story hope this helps you

ellilu58 profile image
ellilu58 in reply to Notmeitsyou

Got it...thank you and something REALLY jumped out at me from one of your response...think she was called 'jora'.

I remember now my rheumy nurse - who is ace - telling me that I couldn't start biologics until I'd tried and failed to tolerate three DMARDS...I failed with Sulph and Hydro so failing on Mex makes it the three, doesn't it? That would explain why my rheumy keeps pushing the mex.

Sounds like you went through a right nightmare with yours and hope you're better now....

Honestly, give the rheumies one week with what we have to live with daily for years and everything would change.

Thank you sooooo much for letting me see that....think I'm going to war with them now :) xxx

Nanapapa6 profile image
Nanapapa6

I had two bouts of pneumonia this year and I'm on 25 of methotrexate per week, finally I had to go off the methotrexate and onto steroids to clear my lungs up, this threw me into a major flare of my RA

ellilu58 profile image
ellilu58 in reply to Nanapapa6

Sorry to hear that....that's rubbish. I had a very mild pneumonia in May and couldn't believe that my rheumy STILL wanted me back on Mex! She said I was just 'unlucky' and had caught a virus! x

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