Lung nodules

[tilstongal]

Hi, has anyone had experience of lung nodules as a complication of RA? I have a large one in my lung which us ver, very scary. I had a CT scan after the initial X-ray and am awaiting the result. I would be interested in anyone else's experience of this. My drug is tocilizumab, no Mtx, and no other drugs of significance. I use co-codamol too.

Thanks.

[avjh]

Hi Tilston Girl, I was diagnosed with lung nodules after having a CT scan for something unrelated to RA about 2 years ago. You don't say why you had the X ray so I don't know if you have had any symptoms of chest problems. I had no idea I had any lung problems and didn't have any symptoms. I was referred to the chest clinic and also sent for a pet scan. It was then decided by the specialist that these were rheumatoid nodules which didn't require any treatment.I just go to the clinic every 6 months for a check up.

Nodules are not unusual in RA. I've still no symptoms of chest problems and would have been completely unaware if I had not had the CT scan.

Please try not to worry too much. I know that's easy for me to say ,but they do need to investigate anything that shows on x rays and scans. Do keep us updated.

With all good wishes A

[tilstongal]

Thanks ajvh for your reassuring reply. I had a common cold followed by a chest infection and then I started coughing up blood - which was seriously scary! That triggered the X-ray and subsequent CT scan. My Dr said that they probably wouldn't do anything but it was large and near 'important things' so it would be difficult to remove. I see my Rheumatologist in June, but that seems a long way away. Thanks for your kindness.

Tilstongal

[dmc12]

Hi,

I was diagnosed as having rheumatoid lung disease about four years ago after a persistant cough.

My specialist decided to do a biopsy of the nodules and that came back clear.

I saw a chest specialist every six months to ensure there were no changes and was discharged about 16 months ago. Unfortunately three months ago I saw a different chest specialist and my CT scan has that the amount of nodules has increased and I am now waiting for a treatment plan.

Initially my oral steroids were increased to control the lung disease but only to 10mg so not a huge dose.

My RA specialist has now written to my lung specialist to see if he is happy for me to continue on biologics and I am waiting for a response. I found this quite strange as my RA specialist usually decides what treatment I have so I wonder if there is a link to lung disease and some medication. I am on TCZ (Tocilizumabb) too.

The nodules are normally harmless and for me the only symptom I have is a cough and shortness of breath. My lung specialist has been fantastic and very informative and the key he has told me is to ensure that my RA is well controlled to maintain the health of my lungs. Good luck and hope you get your answers soon.

Donna

[tilstongal]

Thank you Donna for that useful reply. I did read a report saying that Tocilizumab actually reduced the size of lung nodules - this would make sense as it reduces inflammation elsewhere in the body.

I hope you continue to be well.

Tilstongal

[TerriL]

Hi,

I too have nodules in my lungs. Mine are very small 3mm and 5mm. I have no symptoms and they were found only because my Rheumy ordered a scan of my chest, abdomen and pelvic area for an unrelated issue. I had an MRI 3 months and 6 months after the initial scan and the size has not changed. I am now on a schedule to have an MRI every year to watch them. Can you call your Rheumy and ask that if anyone cancels their appointment they will let you know so you can get in earlier than June. Gentle hugs being sent and hoping that you have someone to talk with that can help with the scary feelings.

[tilstongal]

Hi,

Thanks for your reply and good wishes. I will try to move the appt but I very much doubt that I will be able to. My Rheumi knows about it as I told her after the xray, I think I need to get the result of the CT scan from my Doctor before I can take it further. I am encouraged that people seem to be living with these nodules with no symptoms although mine is 1cm across.

Tilstongal