synacthen test result

[Rosina1871]

I have been advised I have mild adrenal insufficiency and there is no reason for concern. Via a letter my rheumatologist “told me off” for increasing my pred my 5mg over Christmas. I did this because of a flare and dropped back to 5mg after a week. He said and I quote” it makes it very, very hard for us to reference a base line”. He also said he expected me to be on a lower dosage by now.

He wants me to drop by 1mg every four to six weeks. I want to drop by half a mg every four to six weeks and I have emailed that suggestion to him. Have a feeling he won’t be happy but I don’t think I am being unreasonable. Any comments please? Thanks

[DorsetLady PMRGCAuk volunteer]

The slower the better at such low doses - both for your illness and nudging your adrenals...and he may not be happy...

Info on adrenals -

healthunlocked.com/pmrgcauk...

[Rosina1871 in reply to DorsetLady]

thanks for reply and the link. I don’t know why he’s trying to rush me. Perhaps he wants me off his “books”

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Can you be referred back to your GP...

[PMRpro Ambassador]

And a flare makes it very very hard for us to live. A week of adding 5mg won't have affected any baselines, it doesn't work that fast.

He won't like it, he's a control freak - what sort of relationship do you have with your GP?

[Rosina1871 in reply to PMRpro]

my gp of 25 years has just retired. She was brilliant. I’ve not got to know the other gps yet. Will see how my rheumatologist reacts. I have an appointment with him in May. I think half a mg every 4 to six weeks is a very reasonable suggestion. I explained in the email to him why I upped my dose for a week. I don’t think he’s used to anyone making suggestions

[PMRpro Ambassador in reply to Rosina1871]

I agree perfectly reasonable - he may not!!!!

[TheMoaningViolet]

I think you are being more than reasonable and I can't imagine anyone thinking otherwise. Only you know what symptoms you got as you reduce and how much you can tolerate.

I have been reducing by 0.5 mg only since getting down to 6.5 mg. Recently it took me 14 weeks to drop from 1.5 mg to 1 mg and I am currently reducing to 0.5 mg and it's taken 15 weeks so far (I am now 5 days on 0.5 mg and 1 day on 1.0 mg and will probably do this again one more time depending how I feel). I have been on Prednisolone since the beginning of December 2019 and I have been reducing steadily ever since without a flare. Slow tapering allowed me to have an excellent quality of life. I have some shoulder pain at the moment (one side only) which is not PMR-related (it may be Prednisolone-related, or simply something that would have happened anyway given my propensity to carry heavy bags around). I am seeing physio about it and doing exercises.

We are currently on a skiing holiday and I have done 3 days of skiing without any DOMS (to my surprise). I do try to stretch very well every day and only ski for three hours.

Given the mild adrenal issue, I would take it really slowly now and keep checking how I feel with each step. I hope it all goes well for you; stand your ground, you are doing the right thing.

[Rosina1871]

just as a follow on, I have emailed this to my rheumatologist . I think it’s polite

Thank you for your letter regarding the short synacthen test. Appreciated..I just want to mention the reason I raised my pred by 5mg to 10mg over Christmas. I started with a pmr flare and in an effort to prevent the inflammation building up further I upped my dose by 5mg for one week then dropped back down.  My symptoms have settled since.I am trying to reduce my pred very, very slowly so I dont have another flare and currently I am on 4.5mg which I would like to stay on for a month to six weeks and then reduce by another half mg.  I very worried about GCA and pmr coming back with a vengeance , hence the extreme caution on my behalf.I hope you understand my caution.  I obviously would like to be off the steroids as soon as possible but am very afraid of being back to square one.Thank you for your care and concernKind regards 

Will wait for a reaction

[PMRpro Ambassador in reply to Rosina1871]

Excellent - clearly put and justified. If he objects he wants to rethink his vocation ...

[Rosina1871 in reply to PMRpro]

thank you. I appreciate your comment

[123-go in reply to Rosina1871]

We’ll done!

[Blackcat1M in reply to Rosina1871]

I am having a battle at the moment with my doctor and rheumatologist I think they hate it when we question them and the thing I hate is have you been reading Dr Google again.

Well done you for sticking up to him.

[Rosina1871 in reply to Blackcat1M]

thanks. I’ve emailed my gp as well as the rheumatologist letter was sent to them also. I just wanted to clarify the situation so that they heard my side of the story

[nuigini in reply to Rosina1871]

Well said. If he doesn't understand I'd cut him loosen and hopefully find a GP that will support you in self management. My hackles went up reading your post.

I was referred to a rheumatologist 4 years into PMR after slowing reaching 10mg (started at 40), following the great advice on 5this site. She delivered the same type of message. Unfortunately, I tried to reduce faster, not at the pace she recommended and ended up in a major flare, from which I've never fully recovered. It's now 4 years on and I've yet to reach 10 mg again. I've been reducing slow and steady by .5 mg since reaching 17 mg , often repeating steps, and still get occasional flares. My GP now asks what dose I'm on and gives me the prescription.

Granted, I'm a weird case, however, in my humble opinion, you need to do what your body and your experience tells you to do.

Sorry if I seem too blunt, but my hackles are still up!

[Rosina1871 in reply to nuigini]

Thanks for reply and I’m sorry you have had and are having a rough time. I’m not looking forward to my appointment in May but there is no way I’m going to reduce any faster. Hope my GP will support me . I have advised the surgery of my feelings and asked them to put it on my record. Good luck

[nuigini in reply to Rosina1871]

Thanks Rosina. Same to you.

Don't get me wrong, I have a wonderful quality of life and I enjoy life to the fullest.

[Rosina1871 in reply to nuigini]

Me too. Keep smiling

[Duckduckgo123]

I would only drop by half mg ….that is what I have been doing sense I hit 10, now I am on 8.5 mg

[Rosina1871 in reply to Duckduckgo123]

Thanks. Yes I’m sticking to half a mg