I hope everyone is doing well and if not hang on in there and reach out as there is misch support on here!
I've had the toughest few months since last November the worse flare since being diagnosed in 2013, shadow on lung picked on a routine Chest X Ray at screening for new meds, so couldn't start the new meds until all tests had been done. I now have a diagnosis after CT Scans, Lung Wash, Breathing Tests , bronchiectasis caused most likely by RA and a cononised A Typical Lung Infection which will be monitered but no needs no treatment and bug identified i was A symptomatic and could have it years as it's a been while since last Chest X-ray ..very complex these immune systems of ours! Having said I did get a chest infection recently but not linked to this just a bug doing the rounds but I will be more susceptible and needed antibiotics..the gift that kept on giving!
I am more than grateful that this was picked up and I had all the tests etc needed, but it was a real slog as it coincided with Rituximab having worn off so went into a very severe flare where at times I felt so low it was hard to pick myself up again but I have previously posted about that.
Anyway, yesterday I finally injected my first dose of Kevzera (Sarilumab) ..so hoping it brings some much needed relief soon and I can get off these oral steroids which I don't want to be taking for any longer than I need too..but they have helped a lot.
Thank you again to everyone who reached out to me and gave me advice, support and good wishes when at my lowest. ❤️
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3LittleBirds2
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I've read that you've had a tough time recently too , I hope you are doing better now. Yes, good news that I can finally start the new medication.. I will have to be careful of chest infections with the lung isssues now but I'm just hoping I can resume "normal " life very soon. Thanks ❤️
So glad to hear something’s going right finally! It’s such a roller coaster of a disease and its acolytes that sometimes you just don’t know what’s going to swerve round the corner and crash into you next.
Do hope you have a period of peace and calm and your new meds start working pronto. All best. X
Hi 3LB, so glad you have got somewhere with this finally and it can be controlled by antibiotics. I’ve had/done similar investigations and waiting in 2022. They thought my chronic bronchitis was bronchiectasis (my spelling .. I am not sure this is correct!!) at first but my CT scan ruled it out. I spoke to a few people on the HU lung forum who were so helpful and knowledgeable. Hoping Kevzara works well for you. After Rtx my rheumy looked at that, but said she recommenced Abatacept for me more. I would have accepted Kevzara. As you know, Rtx takes the immune far lower in some people and has for you and did for me. Here’s to better health and hope you have some lovely things planned to look forward to. 🩷
Thank you NK 🩷 it's not your spelling it is most certainly mine I struggle even saying it! 😂 ! I hope you are doing well and here's hoping Kevzera works. Xx
🤣 It just looked weird after I’d typed it! I couldn’t pronounce it until a consultant told me how! I was saying bronchi-ect-asis instead of bronchiect-asis. Yes I’m doing well thank you, now my immune is picking up and has been very slow and still not all recovered, but I’m glad it’s going the right way, after being off Rtx for over 3 years now. Let us know how Kevzara goes. 🙏🩷 xx
You sound exactly like me. I’ve been battling pleural/pericardial effusion’s for over a year, respiratory finally diagnosed Serositis after numerous infections etc and lots of hospital admissions. I’m under a rheumatologist and currently down from 20mg to 10mg prednisone and due to start immunotherapy next month, I’m ANA negative so unfortunately don’t fall into typical lupus sle which would be the case so I’m just undiagnosed but thankful I’m still here and the preds have removed the fluid so I can breathe a bit better. It’s a long road but the journey is easier with help.
Thanks for your reply. Sorry to read you've been struggling too. Glad you can breathe a bit easier too! I'm going to start tapering the pred down next week to 10mg...hopefully I can come off them soon if the Kevzera works. Good luck with your medication soon. Xx
Aw that’s good. I’m just awaiting my lung ct scan scheduled for next month and if that’s showing inflammation has cleared then I can start immunotherapy and hopefully wean off the prednisone.
Good Luck..it's a long old slog isn't it! I have always been reluctant about Pred..but this flare was so severe I had to take it to even just get out of bed, during Feb I think I hardly got dressed as I was in so much pain with my shoulders, elbows and arms..I'm still not driving fully but it's better so for that I'm thankful. Yes, I had to have another CT scan to check I was ok to start, hoping yours will go ok. Best wishes xx
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