Basal cortisol test

[Purplegloss]

In three weeks' time I will be down to 3mg Prednisolone all being well. It is nearly five years since being diagnosed with PMR, October 2017. I am just wondering as I feel ok, do I actually need to have a Basal cortisol test done, or is this only done if you are feeling unwell? I have been using the DSNS method, just .5 at a time over a course of six weeks, and then staying at new level for a few weeks to make sure my body is ok with the new level of Prednisolone.

[jinasc]

Both tests, Short Cortisol and Synacthen - are there just to make sure your adrenal glands have woken up and are starting to work again.

Both a pain free and I fell asleep when I had the Syn' test - best visit to a hospital ever.

Remember when you finally take your last pred - you must still carry your Blue Steroid warning card for at least a year.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Carried mine a lot longer than that….

[DorsetLady PMRGCAuk volunteer]

Never had mine checked (4.5 yrs of Pred)... and all fine. Six years on, and 3 replacement surgeries I think I might have noticed....😊

[piglette in reply to DorsetLady]

I have never even been offered it!!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

No I wasn’t either, but then apart from the random bounds of fatigue didn’t have issues …..

[piglette in reply to DorsetLady]

I was too tired to talk to them anyway!

[Purplegloss in reply to piglette]

I haven't been offered one either, that would require me seeing/talking to a GP, right! I have never seen or spoken on the phone to my GP at this moment in time, but we do write letters to each other, which seems to work, at least I write to him, and he replies. Every three months I list 1,2,3,4 etc. items I want to mention updating him on where I am with my PMR etc. and what method I use to reduce, so he is aware of this site. Anything I need him to do such as the online paperwork for my blood test, plus what needs testing such as CRP and ESP and sometimes Vitamin D levels as well. Inadvertently got tested for Diabetes instead of Vitamin D at one point, but that is ok, always good to know that I don't have Diabetes, as my sister does. I usually either get a reply by text or email pretty much straight away, which is great. Thanks for all your replies and I won't bother with either test then seeing as I feel ok. I do carry a red card. which my GP sent me in the post, so that's good. Usually with our practice when you do have a face to face appointment, you are only allowed one ailment, so this works well, and he can read it all in a couple of minutes. He even thanked me for my excellent letter the first one I sent to him, but at that point he didn't know he was going to get one every three months.

[piglette in reply to Purplegloss]

My gosh, I am not sure my GP knows much about reading and writing. I did write a snail mail letter once asking a question, which I delivered by hand, but never got a reply. We cannot use texts or emails. The only thing we ever talk about (about once a year) to do with PMR is bisphosphonates. He is hell bent on me having them and I, in turn, am hell bent on not having them.

[Purplegloss in reply to piglette]

The text's and emails I get from the GP are noreply ones, but we can send emails direct to the practice asking any questions. My letters are snail mail to him.

[piglette in reply to Purplegloss]

I don’t think my practise uses email at all. If I sent a text or email no one would read it. Judging by my results with lack of replies from snail mail, it looks like they don’t work either!

[Suffererc in reply to piglette]

Likewise. Think they all have ‘shares’ in AA

[PMRpro Ambassador]

You don't NEED to have it if you feel well although you DO need to be aware that you might not cope with stress of any kind. That's why you should carry a steroid card in the UK (not sure the rest of the world has an equivalent).

[Louisa1840]

Hi Purplegloss. You and I could be twins! I have had PMR since May 2017 and I too am down to 3mgs pred daily. I certainly would not be bothering wth un-necessary tests if you are feeling okay? The end goal of zero pred could be in sight but you need to go so slowly or you risk a flare as I'm sure you know. I'm going to stay on 3 mgs for as long as I need to . Remember that world renowned rheumatologist Professor Dagsupta (spelling?) is not worried about patients so long as they are below 5 mgs and is happy to keep his patients on 2 or 3 mgs for life if they need it. Go Well!!

[PMRpro Ambassador in reply to Louisa1840]

Dasgupta

[Amkoffee]

I was not given any tests but then suddenly several months after taking the last steroid I started showing symptoms. Very weird delay. I now have adrenal insufficiency and have to take hydrocortisone everyday.