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Buckley123 profile image
32 Replies

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

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Buckley123 profile image
Buckley123
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32 Replies
happytulip profile image
happytulip

Azathioprine?

Buckley123 profile image
Buckley123 in reply tohappytulip

Yes that’s the one !

How are you xx

happytulip profile image
happytulip in reply toBuckley123

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 profile image
Buckley123 in reply tohappytulip

So helpful

If I ever get it ht! How are you xx

KayHimm profile image
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 profile image
Buckley123 in reply toKayHimm

❤️

miccika1 profile image
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 profile image
Buckley123 in reply tomiccika1

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

jane1964 profile image
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 profile image
Buckley123 in reply tojane1964

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

jane1964 profile image
jane1964 in reply toBuckley123

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 profile image
Buckley123 in reply tojane1964

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

MEGS53 profile image
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 profile image
Buckley123 in reply toMEGS53

Hey how are you xxx

MEGS53 profile image
MEGS53 in reply toBuckley123

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 profile image
Buckley123 in reply toMEGS53

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 profile image
MEGS53 in reply toBuckley123

Totally agree about the lack of Drs

And yes, same old, same old!!

Take care, xxx

Buckley123 profile image
Buckley123 in reply toMEGS53

And you Meg xx ❤️❤️

MEGS53 profile image
MEGS53 in reply toBuckley123

xxxxx

Salzer profile image
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 profile image
Buckley123 in reply toSalzer

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

Salzer profile image
Salzer in reply toBuckley123

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 profile image
Buckley123 in reply toSalzer

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 profile image
Salzer in reply toBuckley123

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 profile image
Buckley123 in reply toSalzer

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

Kevin53 profile image
Kevin53

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

Buckley123 profile image
Buckley123 in reply toKevin53

Thanks Kevin xx

Jmiller623 profile image
Jmiller623

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

Buckley123 profile image
Buckley123 in reply toJmiller623

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

Buckley123 profile image
Buckley123

Yes ! How are you getting on Louise xx

Buckley123 profile image
Buckley123

Oh I hope you feel better real soon xxx

Hayleyrose28 profile image
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

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