Morning peeps🙂The sun is shining but it's cold out there brrrr....🌞🥶 so writing this tucked under my cosy blanket. I am currently off all RA meds (Metoject, Cimzia and Sulfasalazine) due to a bad chest until I see the respiratory clinic. After throwing my toys out of my pram - big time- I got an appointment. I am flaring all over (I'm RA seropositive since 2015) and in such pain. Also, my lower left lungs/ribs are in agony! Anyhoo...I saw this respiratory Doctor and he initially tried to dismiss my pain. I had a fall last August and he said it will heal in time and he didn't think it was anything to do with my drugs. He sent me for another xray. Then, when I returned to him for the results if that, he was much more congenial! 'Oh, you must be in quite a lot of pain,' he said!! What do they think we say these things for??? My left lung is about 2/3 full of 'sticky stuff' and can't be used atm, I have 3 broken ribs and my diaphragm on that side is half way up my lung!! So...the CT scan was fast tracked by him to try and resolve what's going on. I've had that now and am waiting for the results. Meanwhile, I'm on prednisolone (12.5mg) and etoricoxib (60mg) The trouble is, it's not touching the sides of my RA - everything is swelling and sore. My feet, hands, neck and wrists especially. My feet click...all the bones click and they feel broken🤔Can't sleep either due to the pain. Still working though...on my feet all day at school. I'm quite worried about coming off prednisolone tbh. I had to increase it to 15mg for a week as I couldn't get any shoes on! Good job it was half-term. I would like to decrease it asap. But until my rheumatologist has a conversation with the respiratory doc, I can't start my RA meds again. Meanwhile, my ESR, CRP and WBC have reached the giddy peaks of when I was first diagnosed 😒
Respiratory Clinic - chest xray and CT scan 🤔 - NRAS
Respiratory Clinic - chest xray and CT scan 🤔
Ugggh feel the pain on some level that you are having but not as bad. If cracked or broken ribs they are awful did mine 5years ago after trying to save one o f my cats and of course flip flops and wet grass did not go together! Hurtled down 6ft of concrete steps.
Ribs hurt and there is no real cure apart from time and coughing laughing or any emotion HURTS.
Lungs I do feel this is an area that you have to shout about as I was on MTX and reading leafelt says if you get a dry cough and sort of breath tell your Doctor. I did and was ignored for 3 months It was my GP who took me seriously as I sat there and said I am not m oving till someone tells me this i s OK when it was clearly not.
So I too am off MTX awaiting a CT scan and breathing clinic. I tried to do some work yesterday and after 4 hours of walking talking and being stood up I was using my inhaler a tad more than I thought I would need too.
However as off all meds today I too am now swelling and got the pain back that I had started to lose on MTX . You get rid of one issue and gain another it seems with RD.
Hope your appointments come in quick and you start to feel better soon x
Hi Deeb2908, as much as we hate taking these meds, we can't do without them either! I was told to take etoricoxib antiinflammatory) to try and allow me to breathe more deeply to open up my sticky lung. The trouble is, I can't deep breathe unless I lift my left arm. Hope your scan comes through soon.🤞
I have been on MTX for over 20 years. I also have a lung disease (Bronchiectasis) but it isn't because of MTX. I hate the way everyone blames the drug for everything. OK, it might cause SOME problems for SOME people. But it also does a tremendous amount of good too.
Hidden I said to consultant this week I wish I could still take the MTX as I could feel the good it was doing but for me the side effects were just building. But for many it is a great drug and works so this must be taken into account too.
Hi Poemsgalore1, I agree, I don't think this is to do with my meds. But I suppose until they know, they're taking precautions. The only trouble is - it takes time and my RA isn't playing the same waiting game.
I have Cylindrical Bronchectasis its genetic the same gene as cystic fibrosis. I've seen a specialist and thats what he said anyway. I've a pack of emergency antibiotics in the cupboard strangely this was only diagnosed after a lot of infections and have never smoked or worked in a factory etc. So just bad luck and only had MTX for a week as it gave me a rash so was stopped. Since then LEF which worked well for years and now Benepali and Azathyoprine and no problems with either.
Hi medway-lady thanks for your reply. I hope you are managing your Cylindrical Bronchectasis well - not heard if that tbh. Sounds like everything else is pretty well sorted too - long may it last 👍🏻
I got lucky really and a consultant interested in it and he explained a lot. Its been stable for 18 months and I got to go to the Pulmonary Rehabilitation Centre and do clearance classes and exercise for lungs too. I think that helped, lt's not just being diagnosed and left. We have an outreach team who visit same day but I've not needed them yet. I really enjoyed the course. Its not COPD either I was told as born with it but it did not appear with symptoms until I got MRSA from a hot tub. That being antibiotic resistant it caused a lot of problems then once diagnosed a targeted antibiotic and being all was well. I'm just careful to wash hands and not going to panic over Coronavirus as survived MRSA. lol xx
MRSA from a hot tub! That was some bad luck eh? You have a very healthy outlook to your health- very uplifting!🙌🙌
No common the Hospital said a breeding ground for germs. It was on cruise ship to Baltic. Never again but only thing it could have been all problems dated from that day. Home with 9 courses of antibiotic and 5 chest X-rays. Then sputum test and all hell broke loose. If you don't laugh you cry don't you ? Have to be positive. lol
I've been on that cruise 3 times😲with celebrity cruises.....seems I was lucky! Poor you though x
So was I on the Eclipse ! xx nice ship and service and really its down to a stupid person using it regardless of others. Than agin some are carriers so they might not have known.
Snap!!
Hi Moomin - you certainly have a lot on your plate, wishing you a swift recovery from it all. The pred should help for sure. It's astonishing when we are off the meds how wretched RD swoops in - I pray one day for a cure for us.
Relaxing allows healing - a good book/podcast/radio always helps. Keep us posted on progress. Best wishes to you, Hessie ☺️
I’m sorry to hear of your plight hope it’s sorted very soon and your RA pain and swelling goes
Goodness what a lot you have going on Moomin. I am so pleased you are now being listened to. Hope the conversations take place soon between your consultants and a plan of action can be decided on. I so admire you for battling on with work. I have been really struggling these last couple of months with a flare up and now infections but today I am feeling better than I have been. I am going to head back to work next week and see how I get on. x
Hi Summerrain14. Thanks for your reply. At the beginning of my journey, I was off work for 6 months - it's just too tough sometimes. I hope when you go back to work that you can take it easy and settle back well. My work have been very good tbh. I have been through the occupational health process which I felt was scary at the time but understand it was for everyone's benefit. So pleased you're feeling more like, 'your old self.' Good luck!🙂
Thanks so much for your reply too. I have finally made the decision that I need to speak with HR about my RA and Lupus. It really does scare me. I have access to work support due to being registered deaf/blind. I have tunnel vision and wear hearing aids and use technology to assist with seeing the screen and hearing on the phone. My last manager were supportive about my sight and hearing loss. I am feeling very anxious about discussing my RA with them and am considering if there is the possibility in the future to going part time. I have to try to go back tomorrow to see how I get on I think. I am still having a lot of pain and fatigue but it is getting that balance right isn’t it? Being at home really hits my emotional health so working is almost part of the medicine I need. I work for a charity in a hospital supporting patients with sight loss, that link between the NHS and social care and ensuring the patients know and receive any support both practically and emotionally they may need. Working from home not an option as it is a drop in service and face to face so not sure what if any reasonable adjustments can be made and as scary as it is I need to explore my options. x
Sounds like you're a busy and proactive person - very valuable in the workplace! Occupational health are there to help both parties to continue with consideration on both parts. I found going back to work- after such a long break - very daunting and going through, what was for me, a very traumatic time - tough to face everyone again without breaking down into floods tears everytime someone asked how I was. I went back in a phased return, which was good. I too can't work from home as I work in a school. Work is a positive experience for me - definitely emotionally. It's very tiring and I spend most of my weekend resting. I know we need to balance work/life but I need to work and I need to rest 🤷🏻♀️
Thanks for such a supportive message. I too need to work for my emotional health although have really struggled these last couple of months with this flare up. I need to now go back and see if I am ready or not so to speak. I to love going to my community choir. Made some really good friends and always help me refocus. I went back to choir last week whilst still off work. I really want to be part of my choir but currently feeling like working full time and going to choir a little too much for me to do. This is the reason I am thinking that maybe working part time will still allow me to be part of my choir and have work but get some more time to rest a little too. Such a fine balance isn’t it. Well I have got my work bag ready for tomorrow so feeling a little apprehensive but also looking forward to going back. Well that is until the alarm goes off and I have to get out of my cosy bed. 😂.
Luck 😘
Not what you're looking for?
You may also like...
CT Scan - Lung
Chest x-ray - not great 😕
PET-CT scan day tomorrow 😢
Ultrasound scan result
Chest wall inflammation
xray result help
can Xray diagnose ra?
Chest infection/fluid on lung - off my methotrexate and benepali
