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[Buckley123]

Hey guys how’s things ?

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

[happytulip]

Azathioprine?

[Buckley123 in reply to happytulip]

Yes that’s the one !

How are you xx

[happytulip in reply to Buckley123]

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.

Just thought I'd share.

Hope you have a good day.

[Buckley123 in reply to happytulip]

So helpful

If I ever get it ht! How are you xx

[KayHimm]

Good to hear from you Jade! Glad you are going on a new medication. I hope you improve. You have been struggling for so long.

Xk

[Buckley123 in reply to KayHimm]

❤️

[miccika1]

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.

[Buckley123 in reply to miccika1]

😂😂😂 the moment you realise how much of a recluse you are 🤣🧘‍♀️

[jane1964]

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

[Buckley123 in reply to jane1964]

This is so encouraging thank you Jane ! How Are you xx

[jane1964 in reply to Buckley123]

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

[Buckley123 in reply to jane1964]

Pleased for you Jane I’m hoping for the same xxx

[MEGS53]

Hi Jade. Good to hear from you - you never whine!

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.

Take care and stay safe. xxx

[Buckley123 in reply to MEGS53]

Hey how are you xxx

[MEGS53 in reply to Buckley123]

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.

Take care and stay safe, xxxx

[Buckley123 in reply to MEGS53]

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

[MEGS53 in reply to Buckley123]

Totally agree about the lack of Drs

And yes, same old, same old!!

Take care, xxx

[Buckley123 in reply to MEGS53]

And you Meg xx ❤️❤️

[MEGS53 in reply to Buckley123]

xxxxx

[Salzer]

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

[Buckley123 in reply to Salzer]

Hey sorry for the late reply I didn’t get a notification I don’t think ! How are you xxx

[Salzer in reply to Buckley123]

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

[Buckley123 in reply to Salzer]

Bless you !

I had something similar when I was younger but they said it was pleurisy

Have you been looked into for sarcoidosis? Xxx

[Salzer in reply to Buckley123]

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?

[Buckley123 in reply to Salzer]

Same old same old could be might not be let’s wait and see !! Story of my life 🤣🤣

[Kevin53]

Everyone is welcome here. That’s the idea. Best wishes Kevin

[Buckley123 in reply to Kevin53]

Thanks Kevin xx

[Jmiller623]

Thanks for the update Jade. Hoping the Azathioprine helps! ❤️

[Buckley123 in reply to Jmiller623]

We shall see if I ever get on to it 😂❤️

[Buckley123]

Yes ! How are you getting on Louise xx

[Buckley123]

Oh I hope you feel better real soon xxx

[Hayleyrose28]

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