I have recently been diagnosed with some sort of bad lung problem related to my RA. I haven't seen a pulmonologist yet, and will need another CT scan after the pneumonia clears competly to get a proper diagnosis.
I was, I thought, perfectly healthy about 8 weeks ago when we visited my daughter and grand children at Easter. I caught a cold during the visit that settled in my chest and wouldn't go away. Eventually I ended up in hospital where I had a CT scan and they started muttering about scarring and ground glass, etc. I ended up on intraveneous antibiotics for 8 days. I'm home now and feeling much better but the fear of what the CT scan showed haunts me. Another visit with my grand children is coming up soon. I worry I will catch a cold and end up back in hospital. But I can't live in a bubble. I'm bound to get a cold sooner or later.
What then?
Written by
Keep_Calm
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Many of us worry about contact with folks with coughs and colds. Colds are viral but for some of us we do get a secondary bacterial infection. You are right though we cannot live in a bubble and just have to take sensible precautions, especially if there are known bugs going about.
Sorry you have had pneumonia and that you have RA. I have inflam arthritis though not rheumatoid. Good luck with the scan and with your visit to the pulmonologist, when hopefully you will have a definite diagnosis and can begin to get the correct treatment.
Thanks for these words of encouragement , cofdrop. I like your user name. In the weeks leading up to my hospitization with pneumonia I took gallons of cough syrup and went through many cough drops too!
I have Interstitial Lung Disease caused by RA and I remember being scarred when I was first told the results of my CT scan. I was diagnosed in 2008. What you need is to see the pulmonologist (respiratory consultant) as soon as you can and also have a lung function test. There is nothing more reassuring than having the facts explained to you. Do not be tempted to look up the disease on the internet as some of the articles are inaccurate. I tend to stay away from my grandchildren when they have colds. If that is not possible with you (maybe they live a distance away) then at least don't kiss and cuddle the grandchildren when they are unwell. Hopefully you will get a definite diagnosis soon and the pulmonologist can start treating you.
Thank you so much for the encouragement, Mandy! I am also very encouraged to see you are still alive 6 years after diagnosis ( I already googled and read some really bad stuff and figured I only had a year or two left) .
Hi , my mum also has RA and was taking methatrexate. Her immune system was lowered so much she caught pneumonia and is in ICU. Just wondering if you take methatrexate ?
Hi there, Keep_calm good to hear from you again. This question is one I have grappled with over the past 4 months or so (ever since I found out about my chest problems) and I have come to the following:
- Use Vicks First Defense Nasal spray. This is clinically proven to prevent a cold setting in (it does not contain any chemical drugs but functions by helping mucus production and entrapping viruses so they cannot take hold and multiply in nasal passages). It needs to be used as a preventative and early on. People use it before they go to "high risk" places such as planes, concerts, kindergartens and I suppose "grandchildren" as we all know young children can carry many bugs.... (I found out about this product from one of the members on here who has used it successfully and there are many good reviews on internet)
- Once I feel any cold coming on I work hard to shorten its duration by trying home remedies such as drinking garlic tea etc. I think I have recently prevented a cold going to my chest and turning into cough.
- Make sure you are not lacking vitamins and minerals that support the immune system. Maybe take Vit C before heading off to the visit and think about possibly taking zinc, garlic capsules and other immune system boosting supplements you fancy.
- Off course make sure you are well rested and not run down.
- Follow good personal hygiene by washing hands often and try not to touch face with hands unless they are freshly washed.
- Once we have a chest infection it is also very important to cough out the mucus as the mucus is a breeding ground for bugs. Steam inhaling with or without additives such as menthol can be very helpful in clearing an infection from chest as quickly as possible. So don't suppress the urge to cough (I have done that in the past and I think I have made situations worse) but cough up mucous continuously so it does not build up in lungs.
That's all I can think of at the moment. As others have said we don't want to live in a bubble so with some extra precautions to help with our chest sensitivity we hopefully will be fine. Enjoy your grandchildren and all the best to you for now.xxx
Thank you so much Jenns. I will definitely get some Vicks First Defense Nasel spray, wash my hands very frequently and take my vitamins. Cough out the mucus if I do get a chest infection seems like a really good idea.
Hi Keep_calm,, i to have lung problems caused by RA, have scarring on lungs,,touch wood apart from pneumonia 5 yrs ago i have,nt had any lung infections,,if my g,kids have colds they somehow bounce of me,,not sure why,,but the consultant said seeing as i go out walking the dog in all weathers, breathing harder to expand lungs can only be good for me,, i hope they find out your cause soon, so you can get the right medication,,,i don,t moan about it as what is done is done,,and have to live with it,,but good luck and let us no how you get on,,xx
Thanks Chrissie. It is so encouraging and reassuring to hear from people diagnosed awhile ago who are doing well. I have dogs too and must start walking them daily.
I am on oxygen 24/7 but this has only been the case for the last year. Before then I was on ambulatory oxygen (i.e. only needing the oxygen when I was out and about). I go to pottery and knitting classes each week. I am still driving myself around and I have recently taken up swimming again. So life goes on, even with a lung (and heart) disease. So please try to stay positive.
Definitely I go swimming weekly with oxygen. I use my CD cylinder and long tubing. I also have a friend who uses a portable condenser but has someone looking after it all the time.
Mandy it is wonderful that you are so active and independent. I am especially worried about swimming because we have a year round swim SA in the backyard. It is sort of like a really big deep hot tub but we keep the water quite cool. My husband swims in it against a current ( sort of like a stationary bicycle ) but I prefer to run against the current and do other water exercises. I was worried that I wouldn't be able to use it if and when I need oxygen, so it reassuring to learn you can swim with oxygen.
Jenss gave you such good advice. I volunteer in a heritage tourist house where we get germs from all over the world and I have five grandchildren. Zinc and first defence are the best I find. Don't be tempted to buy the Boots version. It is cheaper but doesn't have the same ingredients. If you do catch a bug take good care of yourself and if it is not clearing up bang the table to get antibiotics before the secondary bacterial infection sets in. Good luck Enjoy those grandchildren
Thanks, Stillstanding. I'm a bit worried that I won't be able to get it in Canada, but I haven't checked the pharmacies yet. When I google it I get nothing but UK sites. Maybe it is called something else here in Canada.
(By the way, I hope it is OK for me to post on this site even though I don't live in the UK. My grandparents were from the UK but they all moved to Canada about 100 years ago.)
Hi , my mum also has RA and was taking methatrexate. Her immune system was lowered so much she caught pneumonia and is in ICU. Just wondering if you take methatrexate ?
I was prescribed methatrxate but was so ill on them, consultant took me of them,,tried 2 others ,but had the same reaction,,,so now take meloxicam,,its just a anti inflammatory,,sometimes not much use,,Oh Keep_calm you are so lucky living in Canada,,been 4 times so far,,and always in winter,,did the Rockies last time so beautiful if a tad cold,, was -35 on lake louise,,and i never caught one cold,,,,,
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winter walking in the cold 
back in hospital end of july after episode & catching covid 
How did you get here? What caused your COPD, ACOS, Bronchiectasis or whatever?
Welfare benefits when you live with a lung condition
pleurisy do you think I have this and if so what should I do?
