Azathioprine/Lupus/Sjogren's follow on

Saw Rheumatology nurse on Tues for my results on being able to use Azathioprine. Enzyme levels are good so all systems go. Letter coming out to me & GP within a week explaining all, then once meds started I've been told that it'll be blood test every 2wks for 3 months then monthly after that. Gave me a blood record that my medical centre fill in and I'm to keep hold of. Be interesting as hospital think medical ctr wil hold record fill in then post back to me. Knowing my med ctr just can't see it happening will have bring this up with GP. Also my med ctr like any other isn't up on these types of things so hoping they know what to test for every fortnight. Hopefully it's all laid out on the hosp letter I'm awaiting! Know it's no good stressing but hey ho!

Sometimes it just feels that's it's happening to someone else that you've turned off, yes I know that sounds odd but can't explain it. Get so down, really down infact and find myself to a point giving up & not caring. It's like I've lost the give a toss mode & previously that wouldn't have been me. These autoimmune illnesses really change you as a person. Doesn't help that you have to hide your true feelings and health issues and mostly pretend things are half as bad as they are.

Would love to know if anyone on here has found some form of counselling helpful or if not how you else you may find to cope.

Thanks for listening 😉

4 Replies

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  • Hi Hollydebs, Are you saying the GP will fill out the blood test forms? Maybe you should ring the rheumatologist and check.

    Lupus can effect the brain and nervous system and its really common to get depression and anxiety. Not a doctor! but the not caring sounds like depression. Sometimes I feel very anxious and down and I tend to start worrying about everything I've done or haven't done, mistakes I've made, whether I've let people down etc. and at those times I use a lot of self talk. When I find my thoughts going to a bad place I literally stop myself and say out loud that it is the lupus making me feel this way, stop this thought, and then I let the feelings wash over me. I never try and stop the feeling because its a physiological thing, but I do stop all the negative thoughts which make the feelings worse and make them last longer. Give yourself permission to feel bad and not care - just as long as you keep taking your meds and seeing your doctor.

    It can take a bit of time for all the meds to start working and the symptoms to go away but it will get better!

  • Thank you for your reply.

    Apparently the nurse at the med ctr fills in the blood record. When I go to see my GP about it all am going to discuss it with him just to clarify.

    I'm Not very good at self talk and like you I'm a gold medal worrywart, without the Lupus etc.

    Perhaps I need something positive to focus on.

  • Hello,

    All this must be really stressful for you. Did you know that we run several support groups all over the UK? You might find having a chat with your local group helpful and you can find details of your nearest group on our website lupusuk.org.uk/regional-gro... We also have some information about lupus and depression which you might find useful when you are feeling low lupusuk.org.uk/lupus-and-de...

    Finding the right treatment and accessing support will be beneficial and I hope that things will improve for you.

  • Hi hollydebs

    Good luck for starting Azathioprine. Hope it works and you start to feel better very soon although it can take up to three months to start to work!. I'm sure your Consultant will have set out in his letter what bloods he wants your GP to do. Also these drugs are quite familiar to GP 's so he/ she probably knows what's needed anyway. Good to clarify with them though!.

    I've found practising mindfulness very helpful in coping with having a long term illness. You can try it for free for ten days if you go to headspace.com. It helps replace negative self talk and gives a different perspective on things. Keep us posted how you get on . Good luck X

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