Anyone on here with severe lung nodules caused by RA? or if a biologic?anything has helped ........am desperate.

[Rockky]

Is there anyone on here that can offer help or advice about the above. My husband has been hospitalised for the last 2 months with a collapsed lung that was only spotted on a CT scan. (He didn't even know he had it but had been losing weight/felt ill and still coughing after 3 years). Still has drain in now and still in hospital.

To cut to the chase he has been told his lungs are full of nodules which they say are caused by the RA. Had a Ct scan in January this year , told few nodules but all ok. He stopped Methotrexate 7 weeks previously because of bad liver results. Constantly had high ESR and CRP levels for the last 10 months or so. (Was on Hydroxychloroqine and 20mg Pred. whilst trying to sort meds/biologic out). Started Benepali at end May, discontinued when in hospital in September and because had no improvement whatsoever. In hospital they stopped all RA meds and funnily enough he has absolutely no RA symptoms since stopping which is weird.

Now is having three daily infusions of Methylprednisolone and going to start on Rituximab 1st November. Has lost over 10 kg in weight and now can't even walk.He is really poorly. Can anyone help or let me know if they have had nodules like this and if they have had treatment and what helped? Don't understand how this can have happened in a few months. His now new Consultant has said she has never seen nodules like this in 30 years, am hoping to get to speak to her soon.

Any help gratefully received.

[Lizbain1]

Have no experience of this, just wanted to say really push for answers that's a lot of weight to loose. What does the hospital say about it? big hugs ....sorry I don't have answers x

[DenMum]

Hi Rocky. You don't mention whether your husband is on any antibiotics or if they think he has an infection.

A year ago I was admitted to hospital with very high CRP and nodules in the lining of the lungs. Was on MTX for RA at the time.

The doctors weren't sure if the nodules were caused by RA or an infection. So I was put on intravenous antibiotics for a week and then by mouth at home. It took a long time (3months) and 8 different antibiotics but eventually the nodules went. That was their proof that it was an infection. None of the blood tests they did were conclusive.

I know we are all different but if they haven't ruled out an infection it might be worth asking.

Hope he is on the mend very soon.

[Rockky in reply to DenMum]

Thanks for the reply. He has been on several different antibiotics whilst in hospital.amoxycillin, co amoxyclav, and now Tazocin.They (a microbiologist) is saying he doesn't have an infection but they keep giving him antibiotics because his inflammation markers are so high. But I explained to the nurse yesterday they have been really high for over 10 months CRP level yesterday over 200 again, normally around 150 ish. What antibiotic worked for you? Did they take you off MTX? and may I ask what you are on now?Did you have a biologic? Is your RA and nodules under control now? I think his blood tests are inconclusive also.

Thanks a lot.

[DenMum in reply to Rockky]

The suggestion was that the infection was opportunistic - it got in because of the effects of MTX. The successful antibiotics were Doxycycline followed by Clarithromycin.

They wouldn't give me any RA meds until the nodules had gone. If they hadn't gone by end Jan 2022 they were planning to do a biopsy to identify the infection or fully establish that there was no infection and it was all RA.

By end Jan CRP had gone down from nearly 300 to 60 and nodules had gone.

Now I am on Sarilumab which has brought my CRP down to almost zero.

All of this caused a major RA flare which is slowly subsiding now but taking its time.

Hope this helps. All good wishes

[Rockky in reply to DenMum]

Thanks, hope you get fully back to 'normal' soon. Kind Regards.

[oldtimer2]

You can get support from NRAS - get in touch with them. They are the most likely source of information too!

[Rockky in reply to oldtimer2]

Have done, thank you for the reply.

[Gillyflower70]

Sorry no experience but a huge hug and a lot of sympathy.

[Evie3]

How awful for him and you. I hope you dont mind me posting this, but it is something to rule out. I have had RA for 40 years and have recently found I am a carrier for Alpha 1 Anti-trypsen condition…it is genetic. It affects the liver and lungs. It is rare but common and not many GP’s have heard of it. A specific blood test is needed. Take care

[Rockky in reply to Evie3]

have you had bad lung nodules with it?

[Evie3]

Altho I have asthma too, I am awaiting to see a Respiratory Consultant (been 10 months so far) who may or may not know about Alpha…..so in answer to your question….I dont know. 😢

[Laceygreen]

I’ve had infection apparently and had to cancel my infusion but when they decided to try again with the infusion I still had an infection but they said that steroids can make it look like you have an infection. Hope that helps I’ve just had my infusion Rituximab but not working yet but hopefully soon

[Rockky in reply to Laceygreen]

Hi, is this your first infusion? have you tried other biologics? thanks

[J355ie]

I've got lung modules on both lungs caused by RA which I had a lung biopsy to confirm. I've been taking Sulphasalazin and Leflunamide for several years now and I also have Rituximab infusions every 9 months which the consultant told me is the best treatment for pulmonary nodules. I'm doing ok and everything seems to be under control at the moment. I hope your husband gets better soon.