Methotrexate-induced lung disease

[JanetRosslyn]

Towards the end of last year I was hospitalised for about a week with a dry cough/breathlessness that turned out to be Methotrexate-induced Interstitial Lung Disease (previous posts - cough cough cough). The MTX was stopped immediately but I was warned the damage may be permanent.

Good news: After 10 months, my last High Resolution CT Scan shows it has completely resolved! My lungs looked like lace in the first images but in the last one they’re completely clear and I have been discharged from the pulmonary consultant. I have just completed sixteen sessions of pulmonary rehabilitation at Harefield Hospital (specialists in respiratory medicine) and I am feeling so grateful to them. The staff there are wonderful and prescribed my physiotherapy on an individual basis, taking into consideration my PMR/GCA/LVV, and I am feeling the strongest I've felt in years. I've even started swimming lessons! God bless the NHS. When it works, it's marvellous.

Unfortunately, when it doesn't work... well that's another matter, but I won't go there just now.

[PMRpro Ambassador]

Does that mean you have had a bad experience? Hugs xxx

Thank goodness you have recovered fully. But it is a story that needs spreading about. The rheumies are very keen to tell us how safe MTX is compared with pred but pred doesn't usually macerate lungs and we aren't much use without lungs!!! If they want to use it - they need to keep a lot closer eye on us than has been the case since Covid for many, There have been several people with lung problems in the last year - and while there are quite a few of us on the forum, we are only a small sample.

[JanetRosslyn in reply to PMRpro]

? I'm sure I replied here, but it seems to have disappeared, so I'll say again, thank you for the hugs and I've sent a private messsage.

[PMRpro Ambassador in reply to JanetRosslyn]

HU is doing its own thing at present ....

[herdysheep]

Good news. Thank goodness.

[JanetRosslyn in reply to herdysheep]

Thank you. I'm determined to find good news where I can!

[Rugger]

Wonderful news!

I was slightly breathless on MTX and my Rheumatologist referred me for chest X-Ray, followed by CT scan and consultation with a chest physician. I was given the all clear so continued to take MTX for a total of 6 months, but it was stopped when my GCA-LVV/PMR symptoms returned. Several weeks after stopping the MTX I suddenly realised I wasn't breathless any more.....! Who knows what would have evolved if I had stayed on MTX?

Your physio treatment sounds amazing. Last week I finished 12 weeks of the Nuffield Joint Pain Programme and can highly recommend it. I've just come home from using the pool!

[JanetRosslyn in reply to Rugger]

I've just come home from the pool too! It's nice to get out and clear the mind for a while and there are a lot of friendly folk in the 'senior swim' sessions

[SheffieldJane in reply to Rugger]

Congratulations! They tried to contact me once then didn’t try again. I think I would like to wait until after Australia now. February if it’s still going.

[Rugger in reply to SheffieldJane]

From what our trainer said, Nuffield have changed things so that the sessions will be on-going, with people joining in continuously, rather than having to wait almost 12 weeks if they've just missed the start of a programme. The New Year sounds as good a time as any to consider re-applying - you could pop in and ask at Reception! It will be something to aim for when you get back from your visit to the family. x

[SheffieldJane in reply to Rugger]

Yes I thought that and to be honest I don’t feel that great yet. Do you feel physically improved? Apart from justly pleased with yourself.

( This is a U.K. programme of 12 week exercises for people who are not 100% well and fit.)

[Rugger in reply to SheffieldJane]

I'm sure I have improved, but not in a dramatic way. It has pushed me to be more active, both in the gym sessions and at home. I find myself 'squatting' to get something from a low cupboard or to pull up a weed in the garden, when I would have bent and groaned before! It has given me the confidence to do more than I thought I could and my strength and mobility must have improved. Now it's down to me to keep it up - hence going to the pool on the first day with no gym session!

For anyone interested, the Nuffield Joint Pain Programme was the topic of one of this year's PMRGCAuk Week webinars and is written up on page 6 of the Summer issue of NEWSWIRE, along with charity trustee Janice Maddock's personal experience.

[SheffieldJane in reply to Rugger]

That awareness is priceless! X