Leflunomide and copd

[Fantasy3]

I have rheumatoid arthritis and copd.

I was put onto leflunomide to control my symptoms.I’ve been taking it for 2 months now.pain and swelling has reduced considerably.

I’ve recently learned that the combination of leflunomide and lung disease is deadly😪

I posted about becoming more breathless on a social media site for copd.

And a dear lady was begging me to stop taking it as her dad had Died in 2009 due to taking leflunomide while suffering from emphysema,

Now I’m scared to death about taking it.

I phoned rheumy nurse this morning but had to leave a message for her to call me,she hasn’t yet.

Can anybody advise me please

Thank you all

X

[Neonkittie17]

I hope your rheumy can call you back ASAP and discuss your concerns. 🙏🏻 I only took that med for a week as it made me very sick from the first one.

[Fantasy3 in reply to Neonkittie17]

No they haven’t rung me back as of yet.I have to allow upto 48 hours.

Physically I feel fine on it,I’m just worried now.

Thank you for your reply x

[Neonkittie17 in reply to Fantasy3]

Completely understandable. Leave another message if you don’t hear from them. x

[Hidden]

I’m not medically qualified, and hopefully your team will come back to you soon, but I would say to take what this lady has said with a pinch of salt. The BNF is a resource that all doctors in the U.K. use when prescribing drugs, and having had a look, there is absolutely no mention of Leflunomide not being suitable for use for those with lung disease other than tuberculosis. From taking it myself for 10 months, I know it can very rarely cause lung problems as a side effect, but that doesn’t mean it can’t be given to people with pre-existing lung conditions, only that there should be a low threshold for stopping treatment and doing a ct scan if lung symptoms appear to worsen, but that’s also true of people without a respiratory problem: I started developing respiratory symptoms last year and was immediately sent for one, just in case. Specifically, it can cause a lung condition called pneumonitis, but many drugs routinely used in the treatment of inflammatory arthritis can cause respiratory problems, including methotrexate (which can also cause a form of pneumonitis and potentially worsen fibrosis). Arthritis itself can cause interstitial lung disease and bronchiectasis.

If you’ve not got any new or worsening respiratory symptoms, and as long as you’re aware of the possibility and keep an eye on how you feel going forward, I wouldn’t be worrying. I’d be quite surprised if rheum come back saying anything different.

[Fantasy3 in reply to Hidden]

Thank you so much for that info.x

[medway-lady]

Well I was born with Cylindrical Brochectasis and it was discovered when I had some tests for something else and I took LEF for years no problem with lungs at all. I had infections but not related to the LEF and so I'd ask your RA consultant as I'm not convinced that there is any link but of course there is a link between RA and a lot of other diseases. LEF changed my life and put the RA into remission for years. For me it was great and enabled me to live a normal life.

[Sheila_G]

When you hear anything detrimental to health it is worrying but I would say don't take advice from such people. I am not saying she isn't trying to protect you but you should only be talking to professionals about these issues. It is also 12 years since this alleged event. Things change dramatically in medicine over the years and you need to know what the latest information is. Keep leaving messages until you speak to an expert. Try not to worry, I am sure they will alleviate your fears.

[Fantasy3 in reply to Sheila_G]

Thank you.I’ve actually decided to continue on leflunomide.

Rheumatoid arthritis pain is too much for me.

Plus it alone can cause lung issues.

Spoke to ra nurse who was glad I had restarted it