After surgery on my wrist a few weeks ago, I became very ill and couldn’t breathe. After bloods, tests xrays etc, they told me I had emphysema. After seeing the lung specialist on Tuesday, she said it wasn’t this.
I was sooooo happy, until she told me
I had ground glass in my lungs?
I can take most things but, this frightens ne
Yes, I’d be frightened by things going wrong with my lungs. Are they doing follow ups to work out exactly what it is, as this can be as a result of infection or a more permanent problem like a lung disease?
Unfortunately both RA and methotrexate can cause lung problems, so we are stuck between two rocks. I hope you get some effective treatment soon.
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Thanks HH
My husband has this ground glass effect in his lungs but doesn't have RA and has therefore never taken methotrexate. His hospital doctor said that in my husband's case it's because he has had pneumonia in the past.
Oh, I know I have RD and take MTX, but I've had Pneumonia 5 times and have Bronchiectasis with Pseudomonas colonisation of my lungs. But glass!!! Another scary possibility to worry me. 😳
Hi poemsgalore1. My husband wás told that it's not actual glass. It's a term they use to describe scarring or lesions in the lung that are opaque and therefore look like ground glass. I wish they wouldn't use this term as it strikes fear into people.
Yes, she explained this. My understanding is the the real concern Is if the glass modules are solid in nature. The CT scan will offer more information.
Yes it should. The CT my husband had enabled the doctor to confirm it was just scarring from the pneumonia he had in the past thankfully. I hope all goes well for you Eiram50. You have quite enough to cope with as it is.
That’s the thing. I have never suffered breathlessness nor chest infections etc, it more or less came out of the blue. She also said I now have asthma - something I’ve never had either. Anyway, no point worrying until CT scan and then I’ll know more what I’m dealing with.
Thank you x
Please let us know how you go on. You just struck a chord with me when you said that the doctor said you now have asthma. Years ago when I was first prescribed methotrexate, I rapidly developed chest infection and a persistent cough. The rheumatologist stopped it saying I couldn't tolerate it. However, although the chest infections stopped, the cough continued. I was then diagnosed with asthma! I have been using an inhaler ever since. Anyway you take care x
It’s interesting as I have been on methotrexate for the past five years without any adverse effects. The lung specialist told me that there are two prime stages in life for asthma - childhood and then again in your 50s and 60s! It’s genetic and has probably just lain dormant.
You take care too x
Oh no, not another thing to cope with! You really are getting more than your fair share. Wish I could take some off you, but I don't have a magic wand. Bless you.
That’s such a kind thing to say. Thank you
Oh dear. I thought I had my of bag full of difficulties. Thank you for helping put it all into perspective but I FEEL you and this so strongly. I just wanted to say I appreciate your strength and your clarity and honesty. One step at a time. You are inspiration.
That’s really kind of you. I appreciate it. Thank you.
Dear Marie, I have mild fibrosis, although it came to light as scaring about 5 years ago, I was so upset, however CT scans each have shown it hasn't got any worse and could be old scaring. I have a large HH and a reflux cough and due to my back I am breathless when I walk anywhere. I saw a lung specialist over a year ago and he said not to worry, would do another chest CT scan this year. I haven’t chased up as waiting for an urgent scan on my back to go ahead with my back op next month. He also ruled out Mtx as a cause in my case. Another worry for you, please take extra care. X
Thank you so much. That has given me hope and taken the edge off the fear I’ve been feeling. They’ve taken me off methotrexate but worry about what else I can take as they’ve never been altogether successful in slowing the disease etc. Once my ankles are done, there will only really be my shoulders and elbows need replacing - and if that were to happen- I’d cope with that too. I just have a real fear about my lungs so In balance, I’d take note damage to my joins rather than more damage to my lungs!
You sound like you have a lot going on too. It’s a bit relentless, isn’t it? I wish you every success with your operation and hope everything goes well x
Thank you Marie for your wishes, especially when you are going through so much. Humira has been a good drug for controlling my RA, I only take a low dose of Mtx 7.5mg, I don’t like Mtx , I would have blamed going on Mtx as I was getting more chest infections when I went on it. I haven’t however had another infection for 18 months now, I hope I haven’t put the mockers on it for saying so. I was on Azathoprine for years, they don’t seem to use that now. I do hope they can find something suitable for you. You are such a brave lady, I have been on a low dose of pred also for too many years, with my early treatment 35 years ago of constant steroid injections to my joints I feel it’s weakened them. I am also having trouble with my shoulders, a rotary culf tear a partial tear on my bicep and another partial tear on another tendon, a US has revealed on my right shoulder. It degeneration ! It does go on. Like you we get on with it. I have to say I was so worried about my lungs though, so know how you are feeling. Best wishes G x
The lung specialist said I could replace methotrexate With ledlunomide - but I already take that. After a few biologics, I’ve been taking enbrel for a couple of years but I’ve tried lots of stuff and they made no difference. Steroids did nothing wither so the biologic, methotrexate and leflunomide together, was at least helping. Oh well, back to the drawing board 😀
Take care and the very best of luck going forward x
Oh Marie. I really hope that the next post you send us won’t be bad news, it seems it's one more thing each time & I dread (in the nicest way) seeing your avatar pop up as well as reading them.
I truly hope it's not something that can't be dealt with easily. It's one thing that bothers me, lung problems, having had troubles in my early 20's & given it can be an issue with RD, having been on MTX for 10 years also doesn't help.
Wishing you well & sending the gentlest of hugs. x 🤗
I know! I’m beginning to feel like a big black cloud of doom. I see rhuemy in a couple of weeks so plan to have a discussion around what next. I see no real point in taking the multitude of meds if they’re not only making little difference with regards slowing down the disease but are then also
Causing new, significant issues. I just don’t know where he will go next?
I can’t lie and say I’m not a bit frightened, because I am but until the CT scan, I’m going to remain optimistic. But, it’s getting a little harder.
Hope things are well with you and H.
Thank you NMH x
Little update
Another Day
Another quilt cover........
If its not one thing it's another!
I just don't know what to do
