Synacthen test tomorrow

[Coffeebeans]

Hi all

I'm booked in for a short synacthen test tomorrow after my 9am cortisol came back as low enough to need to test further. Currently on 5.5mg/5mg alternate days.

Fingers crossed the adrenals work!

[SnazzyD]

If it’s a bit flat don’t despair. My endocrinologist said that 5mg can still be enough to suppress the adrenal glands in some, so there could still be a lot of room for improvement. I had my first one done at 4mg because that was the highest dose that was acceptable to them. It wasn’t great but by 1.5mg it was much better.

[Coffeebeans in reply to SnazzyD]

That's good to know thankyou. I did manage to swap from night time to morning for pred pretty easily so I'm very much hoping all is ok to keep continuing down v slowly!

[SnazzyD in reply to Coffeebeans]

Well, even though I wasn’t feeling great due to low adrenal function my Endos were keen for me to keep reducing 1mg per month come what may, in order to prompt the adrenal axis to work. I put my foot down and said I would do it in 0.5mg drops over twice that amount of time because I had to function.

[Coffeebeans in reply to SnazzyD]

I suppose that's the only way to kick start things but like you, I'm keen to go slowly. I've got to be able to function for work.

[SnazzyD in reply to Coffeebeans]

Quite

[PMRpro Ambassador in reply to SnazzyD]

And it is something that is ignored all too often by doctors who don't appreciate the realities of work for most of us and even more the self-employed.

[SnazzyD in reply to PMRpro]

And what p****s me off is that one is left feeling like a naughty patient who thinks they know more than the doctor. No mate, it’s called survival!

[PMRpro Ambassador in reply to SnazzyD]

You can say that again! Though I have to be honest and say it hasn't happened to me here yet - got a touchy little madam involved in OH's care. Or lack of it ...

[LemonZest11 in reply to PMRpro]

Mine is turning into one of those, particularly as I continue to rattle the cage re TCZ.

[PMRpro Ambassador in reply to LemonZest11]

You aren't allowed to have an opinion or know anything - you are a patient ...

[LemonZest11 in reply to PMRpro]

You can say that again! I've come so far with this but now I need her support (they're asking for it) and she's not happy.

[PMRpro Ambassador in reply to LemonZest11]

Silly woman - can't she see it will benefit other patients (and her) in the long term?

[LemonZest11 in reply to PMRpro]

She’s concerned about “stirring the pot”, I think. I said to her last week, you’re not happy about this are you? Her reply? Not really, when there are other conventional medicines you can try, ie. methotrexate. Look I don’t know if I’ll get subsidised TCZ beyond my allocation, but I said to her, you prescribed TCZ and it’s working so why would I want to introduce another drug with all that comes with that, if I don’t have to. She said she’d look at it and get back to me next week. Without her support at this stage, I’m stuffed. 😞 As always, will report back when I have something.

[PMRpro Ambassador in reply to LemonZest11]

She is trying to send you backwards - and methotrexate ISN'T guaranteed to work. It might - but you knowTCZ does.

I asked my rheumy about trying leflunomide but his view is to go for the bullseye if funding is there. They KNOW TCZ works - not only from the clinical studies but in your case from empirical evidence.

[LemonZest11 in reply to PMRpro]

Thank you so much for your support PMRpro, it really means so much when at times, especially this week, I feel alone in this and wondering if I'm deluded 😧. You and a few others here (and my powerless politician) have reassured me. I really am grateful. If I can get this woman to write the letter that is being requested, I will let you know. Xx

[LemonZest11 in reply to PMRpro]

By the way, don't you think leflunomide sounds like some sort of rodent poison? 😅🤣

[PMRpro Ambassador in reply to LemonZest11]

Never thought about - but it certainly isn't what you would call appealing is it!

[SheffieldJane]

I failed mine at 5 mgs. It was completely in the middle of the normal range at 3 mgs. Good luck!

[Coffeebeans in reply to SheffieldJane]

Thank you. It's good to know that just a couple of mg's can make all the difference so I won't be too distraught of today's results isn't great.

[Coffeebeans]

Well, test is pretty straightforward.

I'm sat waiting for my 2nd blood test after having the drug.

Just feel a little irritable (that could be unrelated 😂) and my face flushed and prickled a bit. Could taste the drug for a minute or two and I've got a touch of discomfort in my back.

Hope that helps someone who might be nervous about it.

[PMRpro Ambassador in reply to Coffeebeans]

No - probably related, some people do react to the synthetic ACTH injection.

[Coffeebeans in reply to PMRpro]

I'll go with that. I just want a nice snooze now..

Feeling quite thankful really. I'm on the ward where they do all the infusions and they take all day. Every 6 weeks for the lady next to me