June 2010 visit to rheumatologist

June 20, 2010

On Friday I had my latest rheumy appointment. Wasn’t expecting anything new…it was just a check up really but the difference was my mum wanted to come. I had said no to her coming every other time for a few reasons. One, she lives an hour away and I didn’t want her to trek in for this. Secondly, I just needed to do it myself. I didn’t want to have to sit there like a kid while my mum talked to my doctor.

Thirdly, in the past it was very emotionally draining and I knew having mum there would probably make it worse. But I’m feeling in a relatively good place and so told her she could come along.

It was a pretty boring visit for me…which I guess is what you want but mum found it really helpful as she got to hear it all from the horse’s mouth.

For those of you with MCTD you might be interested in the treatment he has me on.

Every morning I kick off my day with a lovely  little cocktail of drugs to chase my Weet-bix.

I take Orudis which is an anti-inflammatory to help with the joint pain and inflammation.
I then chase that with omeprazole an anti-ulcer medication coz the anti-inflammatory can give you a stomach ulcer.
I take two fish oil capsules (that’s just for good measure everyone says it helps so I trust them)
the two real goodies are the prednisolone (which is a corticosteroid) I am only on 5mg which is a really low dose and luckily it works wonders for me.
Then I take two plaquenil which is a hydroxychloroquine an anti-malarial med which is what I will be on long term

He doesn’t want me on the prednisolone long term as it can give you osteoporosis and a bump on your back apparently. I was terrified I was going to balloon up but I didn’t! I’ve actually lost a bit of weight since being on it so to those of you about to start on it, it is not a definite ‘get fat’ sentence. Some people just don’t.

So at this stage I’m staying the same, and in a few months he will start weaning me off the steroids mg by mg until I can cope without them.

He was pretty positive, so mum was thrilled, he doesn’t think I should get any worse than I am and as my organs like kidneys etc haven’t been affected yet there is a good chance they might not.

Plus…he told me I was looking good and could tell I’d lost weight! Hahaha…so that was reason enough to pay $130 for a visit. I can claim a bit of that back on medicare…it’s more the drugs that eat up my money.

Anyway, I will get back to the story of how it all came about at some point but just wanted to post this update and not stress people out too much with how bad it used to be.

6.45pm…think I’m going to call it a night so I am recharged and ready for the week of work.


Have you read about how it all started for me? Read my Rapid Spiral Downwards #1


5 Responses to “June 2010 visit to rheumatologist”

  1. Sharon Joyce said

    Dearest Nomes,
    I was very pleased to be able to accompany you to the specialists and to hear, as you say, “from the horse’s mouth” what his thoughts are and the facts about your medication etc. Although I certainly wouldn’t say that I was “thrilled’ I was certainly reassured and my mind is a little more at ease with the whole situation.
    Love you heaps.

  2. Sam said

    Hey Naomi.

    Wow. You are so brave. Hearing your story is heart-breaking but, equally, your strength and determination is totallu inspiring.
    I really hope that this helps you heal and that it provides relief to other people. Thank you for sharing.

    Much Love,


  3. […] you read my post about my visit to the rheumy with my mum? Posted by naomijoyce83 Filed in Uncategorized ·Tags: auto-immune disorder, chronic illness, […]

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