Not a question just information

[Josie2]

Hi everyone. Bit of back story first. I was diagnosed with RA 15 years age 40 & spent around 9 years on various Dmards which either didn’t work or zonked me out. Been on etanercept for around 6 years & finally got my life back. I did have to give my job up as it worked that well to suppress my immune system & flares that made working in a school a big no no. Constantly poorly from germs 🦠

I thought I had flared everywhere possible over the years but recently had to come off my biologics for surgery. I had to have my thyroid removed. First two weeks after surgery absolutely fine. After 2 weeks I started getting a pain in the middle of my chest, not had it before so didn’t relate to it except ending up in emergency assessment unit. Everything showed up fine & even had a CT scan. Was only through doing my research I found out it was Costochondritis. Ibrufen alleviated pain & inflammation.

Week later back in A&E with a swollen throat, gasping for breath, tachycardic, shakes, tingling in lips & tongue. I’ve now been to A&E 4 times with exactly the same symptoms. Each time discharged saying blood counts are fine, thyroid scar fine, calcium levels are good, oxygen levels are high.

By now I admit I was starting to think I was going crazy & just having panic attacks. It didn’t twig that each time in A&E I was given intravenous steroids & it calmed down. I was so exhausted & out of it. Doctors thought my levothyroxine dosage was too high & kept reducing it saying I would be ok in a few days. I was told not to restart my etanercept until it was resolved.

Yet again done my own research tonight. Love Dr Google lol. Turns out I have cricoarytenoid arthritis in rheumatoid arthritis. I had another episode tonight but relieved it with a heat pack & deep breathing. Thankfully the last A&E admission last night I was given prednisone.

Sorry for an extremely long post but just thought it could be helpful to others. RA flares don’t just necessarily occur in obvious joint flares.

If any Admin want to share, log or keep my post that’s fine. If anyone has any questions please ask. I’m off to rheumatology tomorrow, if I can get an appointment, to see if I need to do anything else.

[sylvi]

Good to hear you are ahead of your disease darling. I am sure someone will find it useful. xxxxx

[MadisonCounty]

I hadn't heard of that, it sounds very unpleasant. I hope it doesn't happen again for you. Keep well.

[Tealblue2]

thank you! Information like this is so helpful to people and why this site is so fab

Wish I’d known - but I didn’t get diagnosed for years after my fist episode. I Learnt this one the very hard way - kept getting admitted to a&e with COVID to be told it wasn’t the case - it was this. It is very scary!

[janmary]

Thanks for sharing your experience. That’s one I’d never heard before! And I thought I had flares in some strange places!

[springcross]

Wow, how scary that must have been for you! Good for you for finding the reason. Hope all will be well.

[Thingybob]

Thanks for sharing. I had a hemithyroidectomy pre RA diagnosis. As i now understand the two are strongly linked and interact /affect each other . Low throid causes all sorts on ' knock on' problems . I was putting things down to RA as the cause but the throid affects everything. Really hard to unpick and treat. Best wishes

[WilfDog]

Thank you for sharing Josie2. Information like this is so valuable to others. I hope you continue to keep on top of it. Take care xx

[Wobbies]

Oh I get that and blamed all sorts of things. Very helpful post.

[Angels54]

Hi , So pleased you are feeling a bit better , I have had costohocondritisit is so painful, I’m on steroids , biological for RA and osteoarthritis , fractures in spine , been a hard journey , just listen to your body , keep well .👍

[purplecyclist]

Thanks for sharing the story and hope it settles down now.