I just got told by my GP that CT scan of chest shows lung scarring. She was very … reserved. Asked if I’d ever had TB, which I haven’t. I know nothing. I’m glad my breathing difficulties aren’t COPD or asthma but not sure if scarring is a lesser foe …
GP asked me to contact rheumatology to ask them to comment on the scan. I did & they will. However they are a little busy right now
I’ve just joined the LivingwithIdiopathicPulmonaryFibrosis site 'cos a few minutes googling suggests that is what scarring is. But of course that site is work in progress.
Does anyone else have scarring / IPF? Please talk to me if so. And if you’ve not joined that community yet, then why not sign up?
I’m afraid I don’t know anything either, but just wanted to say that sucks, and I’m thinking of you.
Am about to do a scan for same purpose, feel for you, will let you know outcome, all the best
Good luck Letizia.
Have you been having breathing difficulties?
Yep because asthma and allergies have this effect did not immediately adress situation other than sprays for asthma but situation worsened so Gp prescribed antibiotics, after one week of alternate luck lungs feel better but not over the hill so before stopping antibiotics and to overrule corona will have ecoscan hopefully tomorrow. Have not had fever at all this period, and there is dust and mess at home and husband smoked, so hard to tell for sure, certainly taking methotrexate does make me feel it is better to test also for that reason
Sorry you’re going through this process. Is there a possibility of Corona Virus then? I sincerely hope not. Please keep us / me updated. Thinking of you.
I can think of a hundred reasons for the scarring … growing up in a very damp house in which black mould covered some walls for one.
More recently, we’ve been doing heavy-duty renovation on our house. And before that, similar works on our previous home. We lost the battle against the ensuing dust from walls and aged paintwork long ago. No more of that for me now.
Then of course there’s PsA - probably the prime suspect.
Wow, that is a bummer! Never did much research in lung issues. I worked around construction dust, but never had lung problems. Maybe it was a bad illness you had in the past that caused it. I remember some of those flu’s where I was coughing for a month! Might have been one of those outbreaks.
Better in and stay safe!
I have a friend in the UK on another PsA group - indeed he started it. He’s 43 years old and lives in the Norfolk area so under the good rheumy team at Norwich another alledged centre of excellence for PsA in the UK. He developed an incredibly aggressive form of PsA from nowhere, no previous history of anything and no apparent family history of anything. His joints began deforming almost immediately. What type do they call that? Mutalans isn’t it? He’s about 3 or 4 years into his disease now.
Anyway given he was seen in Norwich he was treated aggressively from the off. Sadly nothing much helped and his meds (he was rapidly flashing through biologics) were interrupted by things like a couple of joint operations to fuse the more troublesome joints which were being so rapidly damaged.
Last year he complained of breathlessness. He was a previous smoker (only stopped a couple of years ago) and indeed pub landlord for most of his life - so before the smoking ban too. It was put down to that and the effects of various anti-inflammatories that he was on. But they were keeping an eye on it. Late last year he was diagnosed with fibrosis - mild enough but there. They said it was most likely caused by his previous history of smoking, plus mxt. Mxt being the most important agent in causing it. Mxt was his favourite med for helping - especially helping his horrendous psoriasis, which developed shortly after his initial joint issues. Also though he punctured his lung from coughing due to a cold at the beginning of last year. His coughing broke two ribs, one of them puncturing his lung. That didn’t help either. And obviously necessitated him being in hospital for a couple of weeks.
In February of this year at half-term, he and and family went to family camp thing staying in lodges for a long weekend as you do. A bit of a distance away from Norwich. The next day he collapsed and was rushed to hospital - he developed pneumonia which essentially turned septic. Ended up on a ventilator and an ECMO machine (all these machines being so relevant for Covid 19 now). He survived thankfully and is now home but on oxygen presently. The trailing type so able to do. It took 5 weeks of inpatient care. His prognosis is actually OK amazingly.
But it was caused by his breathlessness or rather his fibrosis. He is a bit of medical anonmally (spelling) - has unusual reactions to things and his CRP can hit the roof for no reason. He doesn’t react to things like the rest of us do. His body’s reactions are geniunely medically abnormal. He’s constantly used as a doctor teaching aid in Norwich hospital, which he enjoys. But they told him it was pretty clear mxt helped in causing the fibrosis and his weird body reaction to anything and everything caused the horrid pneumonia.
I appreciate @Sybil this is a truly horrid story but my friend does truly medically have the weirdest reactions. But from what they’ve said to him - they blame mxt most of all.
I can of course discuss this more with you. And will be very happy to do so.
In the meanwhile have the hugest hugs from me. It’s scary and horrible just anyway and more right now with Covid 19. The thing about fibrosis is to determine what stage it’s at. My guess is yours is pretty mild if they merely told you to talk to your rheumy about it. That’s good. Very good so hang on to that for now. However I wouldn’t be that polite in allowing your rheumy to take their time to come back to you on this. I would push for them to review it asap. As stridently as you can.
Stay at home and treat yourself as one of the most vulnerable please. xxx
I’ve been trying to catch up on some of the discussions, and finally read yours.
Of course IDK exactly what your lung scarring looks like. But I do know people can have histoplasmosis and not know it—not get it bad enough to know?
I had it several years ago, before I got my PsA diagnosis. How I found out was I had very bad pain in my lungs that came on really suddenly. I was at my sister’s who lives 70 miles from me. Driving home was almost impossible because I couldn’t stand the pain in breathing. I went to urgent care and xrays showed I had an infiltrate in my lungs. This was a Friday evening—the doctor told me I should see my GP first thing Monday…I asked him if it could be cancer and he didn’t know…
The following week I was referred to a Pulmonologist. My GP said I’d need a lung biopsy, but luckily my Pulmonologist went for blood tests first (she was one of the best doctors I’ve ever had the pleasure of meeting). She had to send the blood away and told me it’d be over the weekend before results came back. She called me the next Monday to apologize the results weren’t in yet, but to hang in there. What a sweetie!!! On Tuesday she called and said she had good news and bad news. The good news was I didn’t have cancer. The bad news was she was sure because if the highly elevated number of histoplasms in my blood I had histoplasmosis and there were pills I could take to wipe it out.
Histoplasmosis is a fungus. Left untreated it can get into the brain!!! Sometimes, though, people get over it without any more than chest cold symptoms!
Maybe you’ve had histoplasmosis, Sybil!!! The spores come from bird and bat poop that’s “composted” over a long period of time. We had bats in our attic for a few years before we got rid of them. I’m not saying you have bats, but maybe in all the gardening you do you could have come in contact with an amount of the spores that caused lung damage. My lungs have granulomas in them that always show up on xrays and scans. Luckily they’re inactive (or I wouldn’t be able to take Enbrel!)
It probably wouldn’t hurt to ask your doctor if that’s what it is. Maybe they’ve already looked into that? If it’s not active they won’t find elevated histoplasms in your blood, but a Pulmonologist would most likely be able to identify if the scarring is actually granulomas.
Are you currently or have you taken methotrexate? A rare side effect of it can be pulmonary fibrosis. That being said, arthritis can attack internal organs too. I have a friend with RA who was diagnosed based on lung problems ( specifically plura effusions) his joint pain came later. It was a very unusual presentation for RA.
Hope your rheumatologist can spread some light on this issue. Hopefully it’s just some mild disease that won’t impact you much.
All the best,
Jenn from Vancouver
Hello Jenn from Vancouver!
Very nice of you to reach out to another member when you’ve only just joined - much appreciated!
Due to the pandemic (how many sentences start with that phrase these days !?) investigations into what is going on have come to a halt. I’ve been tested for all sorts of things without any clear answers. However my rheumatologist looked at the CT scan and said that the fibrosis is just a small area and probably the result of a previous infection.
I rarely get chest infections. Last time was in 2009 when I ended up in hospital on oxygen overnight. I now wonder whether that was swine 'flu. But at the time (pre-PsA) I didn’t bother asking questions and in fact I’d forgotten about it when I started this thread.
I’ve been on Mtx since 2012. Without it I struggle to put it mildly.
The only thing that concerns me really is whether the breathing issues contribute to fatigue which is the bain of my life. I find it very hard to judge when my breathing becomes a problem. And I realise how insane that sounds. I think maybe it’s just not too bad & I’m used to it now … plus PsA results in so many weird sensations, I block them out, I can’t easily distinguish what’s causing what.
Anyways, hot days seem to make it worse. Exertion however is not really an issue, in fact it improves things. As you can see I’m a very confused individual. I’ve got a darn cheek trying to support others & suggesting what they should / could do when I’ve pretty much lost the plot with myself!
However if I ever get an appointment with my rheumy again I will press this possibility of Mtx involvement. And also ask about PsA-related causes including bronchiectasis, I believe that is more commonly associated with RA but to my mind it fits the bill. Thanks for helping to focus my mind and it’s good to meet you!
Also, thanks for your responses @Jen75, @letizia, @Jon_sparky and @Poo_therapy.
Looks like my lungs aren’t a big deal. Still not sure what’s happening but glad I’ve got this discussion to refer back to.
Plural effusion and pain later / psa could be me mine seemed to start at this time