Biologics and Lung Disease

[SufferingOnHumira]

Has anyone else been diagnosed with COPD since starting Biologics? Shortly after starting Actemra (tocilizumab) I noticed shortness of breath. I was told that I had genetic COPD but I have since read articles that Biologics could be the cause

[Deniseelk]

Hello there! I would be very interested to hear what replies you receive! I have been on Benepali for 19 months now. Chest X-ray before starting all clear, latent TB detected and 3 months of antibiotics taken. Started getting build up of catarrh causing tickly cough which was waking me several times in the night. Also very stringy phlegm when brushing teeth ( sorry). Eventually saw GP when I proved it was not to do with sleeping environment at home ( continued throughout 2 holidays last summer). Chest X-ray showed slight pleural thickening ( not fluid ) and shaded area on right lung but report gave no indication to what could be the cause. Rheumatologist requested CT scan ( no messing as I have history of the latent TB). Still awaiting results! I will be following your replies with great interest. Out of interest my mother had COPD.

[Matilda_1922]

I was diagnosed with bronchietes since starting RA medication.

[VeronicaF in reply to Matilda_1922]

what meds are you on Matilda_1922? its scaring me a bit as I due to start Biologics this Monday, nurse is coming Monday and its 50g

[Matilda_1922 in reply to VeronicaF]

Methotrexate and Benepali

Lung condition diagnosed before starting benepali

[VeronicaF in reply to Matilda_1922]

thank you matilda-1922

[Mmrr]

Something else to worry about.

I've been on beneplai for 13 weeks now and have had a sore throat and cough with mildly frothy sputum for around 5 weeks. I had green spit for a few weeks , now cleared.

I've restarted MTX 5 mgs and feel the cough has got worse since then. When previously on MTX I felt a slight tightness in my chest.

I'm running out of options and really don't want another medication change, unless absolutely necessary.

I'll be interested to hear how you and others get on.

I'm not too great at the moment RD wise either.

[HappykindaGal in reply to Mmrr]

I had similar for a couple of months on benepali. Cleared up now though

[Mmrr in reply to HappykindaGal]

That's reassuring Cwendyn.

I'm not too worried about the cough, for now, it's just annoying. I'll just keep an eye on things.

[VeronicaF in reply to Mmrr]

maybe go to GP check you haven't an infection? also its not hay fever is it? because I am a bit yucky today and not on drug yet

[Mmrr in reply to VeronicaF]

Thanks veronica, I saw the consultant 2 weeks ago who wanted me to have a course of antibiotics which I refused. I've had so many drugs and I suspect maybe the fall, teeth and 3 courses of antibiotics were a trigger for all this starting.

So I opted to come off beneplai instead, my spit is now clear so I don't think I have an infection. I've restarted benepali and MTX has been added in too. I suspect it's the MTX causing the chest tightness, I have a full biologics review in 3 weeks time, so will plod on till then. Double sigh.

[Hidden in reply to Mmrr]

I’ve been full of phlegm since starting benepali, I also regularly get sore throats and a cough but the rheumy nurse isn’t concerned at all, had chest X-rays and numerous dr visits. . Takes ages to get rid of the cough though. I put up with it at the moment because of the improvements in my RA.

[Mmrr in reply to Hidden]

Reassuring thank you.

[Angels54 in reply to Mmrr]

Yes I had tightness of chest stopped MTX now on Sulfasalazine no better.

[HappykindaGal in reply to Mmrr]

It is. I got a bit obsessed with taking my temperature. It was always fine, so I knew that nothing much was going on.

[SufferingOnHumira]

I used Actemra for seven years, noticed shortness of breath right away, Rheumy said it had Nothing to do with the medication. I went to a pulmonologist and he diagnosed me with COPD and said it was genetic?. Seven years and I am down to 38% lung function and I was contacted by an attorney saying that there is a class action suit against Actemra for creating long disease! Ugh. Chronic pain or no oxygen?

[phebamom in reply to SufferingOnHumira]

On Actemra for a few months. diagnosed with COPD, never smoked, and have numbness in hands an feet. Stopped Actemra, an am hoping for improvement.

[Jackadoodle]

I have been on MTX and Benepali for some years now, last year I was diagnosed with COPD, I have to use 2 inhalers at present to help with shortness of breath.

[wishbone]

Apparently, Baricitinib is showing signs of being able to treat, or help manage, COPD. My chest consultant mentioned it at my last lung function test a year ago. My rheumy also brought it up a couple of weeks ago when we were discussing increasing my dose of Baricitinib, which is one of a new class of drugs called JAK Inhibitors so not really a biologic, at least that's my understanding of it. My chest consultant also said neither could he rule out the possibility of Baricitinib further harming my lungs.

[Lolabridge]

I got breathlessness, chest infections and lung problems from Methotrexate and had to stop taking it. After they cleared up I was put on Benepali, which did not cause any lung problems but did it did not work for me. I’m now on Truxima.

If you are on Methotrexate could it be that drug causing your breathlessness?

[SufferingOnHumira in reply to Lolabridge]

Interesting. I used MTX for about five years and it wasn’t effective for my RA but it seems my lung issues may have started around that time? It’s been around 7-8 years ago which fits within the timeline of the start of my issues. Thx

[Lolabridge in reply to SufferingOnHumira]

RA itself can cause lung problems of course. I suggest you discuss with your consultant and/or do some research of medical reports. Good luck.

[Angels54]

Yes I have lung disease I was told it was due to RA , had been taking MTX so I wonder.

[wishbone in reply to Angels54]

I believe lung disease caused by RA is different to that caused by MTX.

[Jora]

I knew I had mild COPD before being diagnosed with RA in 2013. But last September when I was on Toxcilizumab and 25 mg Methotrexate, I got bad pneumonia and was then diagnosed with Interstitial Lung Disease. This is very serious . I now can’t take any Biologic and have to be on antibiotics prophylactically for the rest of my life, as whenever I get a chest infection it exacerbates the progressive lung disease,

I don’t know if that’shelpful In any way.

[wishbone in reply to Jora]

Hi Jora, I also have ILD. I don't usually like talking about it as I know more than enough already so prefer to keep my head in the sand if you know what I mean, but am interested to know what, if any, meds you take for your RA? Except for baricitinib, see my post above, I don't think there are any RA meds I can take.

[lyns62]

Hi. I have been suffering with shortness of breath for a couple of months. Stopped methotrexate and cleared up then re started methotrexate and back to shortness of breath with a vengeance. Gp and rheumatologist think it's down to methotrexate. Waiting consultation. Its helpful that I'm not the only one.

[Jora]

I’m on Methotrexate, only 15 mg at moment, until they are 100% satisfied that it didn’t contribute to the ILD. Then I’ll probably go back to 25 mg. I was due to start on Baricitnib, but neither my respiratory consultant at Hammersmith Hospital nor my Rheumatologist at. Charing Cross Hospital Hospital have any experience of anyone with ILD on Baricitnib and they are being very cautious. I’m being very carefully monitored. My ESR and CRP are both still high, but I’m also on Prednisilone, normally 10 mg, but at the moment 12.5 mg as I’m working towards an open studio of my art and just can’t cope on any less. All the other biológicas I’ve tried - Enbrel, Rituximab and Tocizilizumab - have given me bad chest infections and each time that happens the ILD is exacerbated.

I wonder if your consultant unearthed any relevant research. NRAS could t find any. I’ll keep looking.

Joints are useful and pain is horrid, but lungs are crucial, and it’s all a bit scary, isn’t it.

All Good Things to you , Jo

[wishbone]

Good to hear that you are being carefully monitored, plus your consultants seem to be more cautious than mine.

I was on methotrexate when diagnosed with ILD 3 years ago. My chest consultant advised me to stop taking it, not because it could exacerbate the ILD, but because methotrexate can cause another lung condition which could mask the progress of my ILD.

When I last saw my consultant one year ago, he was going to discharge me until I told him that I hoped to be starting baricitinib before too long. His ears immediately pricked up and it was then he told me that research was underway to find out if it baricitinib could help people with COPD. He decided to change his mind about discharging me and said he would now like to see me in a years time, obviously because I was due to go on baricitinib. I also read somewhere online that they are looking into administering baricitinib via an asthma type pump to help reduce side effects if I remember correctly. I would think inhaling directly into the lungs would be more beneficial as well. It was a year ago this month that I last saw my consultant so should be due an appointment about now, that's if he still feels it necessary to see me again. Also, I had a recent phone conversation with my rheumatologist who wants to increase my current low dose of baricitinib from 2 to 4mg which is the max dose. Because of the increased risk of infection I'm reluctant to do so and it was when the discussion turned to my lung condition that my rheumatologist mentioned baricitinib showing promising signs with lung disease, so it seems like there's something going on. Odd that not that many seem to be aware of it though. I did agree to increase my baricitinib, but shortly after our phone conversation I went and got myself a nasty sinus infection, which I'm taking as a warning so don't think I'm going to risk going on a higher dose.

All the very best to you Jo