Sorry I haven’t been on much feel like a fraud really I often wonder if people get annoyed with my posts I’m still searching feel like I’m always wining 🤪😔
How’s everyone coping with the lock down?
I’m finding it okay but hard was Supposed to start something begin With a? It’s a immune suppressant my neuro still instant they i have uctd
Even though dr Cruz said no.
I’m just coasting now because I can’t start meds till Covid19 Is over !
How you all managing xxx
My daughters 12th birthday I still don’t feel old enough to have her feel like I’ve always had her 🤪 xx
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Buckley123
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Hi, I'm ok thanks. Plodding on around the house as best as possible!
I can understand why they don't want you to start azathioprine until CV-19 is over.
Top tip when you take the first couple of doses....take it after food at night and go to bed. When I was on it the first 4 doses gave me a bad head and made me feel a bit sick. Someone on here told me to take the first couple of doses at night and sleep through the headache and nausea. It was a very good tip. I only had side effects for 4 days and then they went.
Who cares if someone gets annoyed. Wine if you feel like wining 😉. Who doesn't like it can move to the next post. Covid isolation for me feels like any other day.
Hello I'm sorry you have to wait for the azathioprine and hope you stay as ok as possible in the meantime.I thought you might like to know hopefully it will be worth the wait for me azathioprine changed my life I was so ill before I started it and now I feel so very much better I hope it works for you when you get it.Jane
I am pretty well now I am able to manage so much better than I was before I was put on azathioprine Symptoms are much reduced and much more manageable.Jane
It's my daughter's birthday today too (but she's a bit older than 12y!!) and I don't know where the years have gone, either. It was awful to not be able to give her a birthday hug, but I sang (I use the term loosely) 'happy birthday' to her from the front step. Don't pay any heed to embarrassment these days...
I hope the Azathioprine helps you, when you eventually get to take it.
Hi Jade, good to hear from you. Hope you're feeling a bit better since your last post?
I'm ok - have been better, have been worse, if you know what I mean. Feel a bit in limbo-land medically, as it's almost impossible to contact a rheumy or other Drs during CV-19.
Yes I understand yet they say on the tv we are concerned where everyone is.. the hospitals are still running .. but you can’t get a straight answer from anyone
I’m okay thanks good one day bad the next same old same old cxx
Hey Jade. So nice to hear from you and happy birthday to your daughter. Hope you're all doing ok? Might be joining you on the Aza too once this coronavirus stuff calms down! Who knows how long we'll have to wait tho. But that's something we're used to by now I guess. X
Hey Jade. No worries. Yeah I'm ok, recovering from a bout of pericarditits. Taken ages but it's finally getting better after a course of steroids I think. Had to do two nights in hospital in midst of coronavirus! Was terrified to touch anything but made it out ok 🙂 Tons of bloods taken while I was there. Nothing showed as usual. Same ole story, you know how it is! How are you keeping? x
Never even heard of it! Will have to Google it 😂 Cardiologist said pericarditits can be viral or maybe autoimmune but she didn't know that I had a UCTD diagnosis when she was talking to me. I heard them talking about it outside my door after she left! I'll have to see what they say at my next rheumatology appointment. Hope you are doing ok yourself?
I really hope the azathioprine helps! I am also (impatiently) waiting to start it too... Ironically I was supposed to start taking it the day that lockdown began 🙈.
I just want to start feeling better, I’m sure you feel the same - I’ve seen how much you’ve been struggling from your previous posts. Hope you’re coping as best you can given the circumstances. Stay safe xx
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Still totally confused
Heat and flare ups- still learning!
Still experiencing a bad flare
ANA now negative but still ill
Still waiting for referral. 
