The magical 9mg seems so near, yet so far.

[IdasMum]

What is it about 9mg than is so secial and yearned for?

Despite stresses between Christmas and New Year and having an on and off relationship with a sore throat and potential for a cold with nothing really materialising, I have continue my tapering in half milligrams and am now at 10. I cannot see/feel how taking Mx over last 3 months has improved my ability to taper....however wonder how it might have been without the stress I have been under.

I have a rheumy appt in 2 weeks so will stay where I am for now.

I am hoping she will suggest a stop or reduction in Mx and that she will allow me to continue my slow taper as I am now so close to that magical figure.

Thea is crawling, wandering around the furniture and I am sure will be walking within the next month. We'd decided we wouldn't travel this year as it is and has been too stressful and then I see her and decide we will travel...need to have a cuddle and some proper real time with her and her family. So May it will be...who knows, I might be below 9mg and well by then

[Insight329]

Oh my goodness! That child is simply adorable! I hope May gets here fast for you! (And that you had a successful drop below 9.)!

[PMRpro Ambassador]

What a sweetie! No wonder you feel a need to visit!

I've said for years - if the rheumies tried the slow slow taper approach they would very often avoid the need for mtx or any of the other stuff.

[Insight329 in reply to PMRpro]

And avoid the side effects of the other stuff.

[PMRpro Ambassador in reply to Insight329]

Exactly...

[Rugger]

She's beautiful - and don't they grow up quickly! No wonder you want to come and see her. I hope it will be the tonic you need.

x

[IdasMum]

I knew I'd distract you all with the photo.....

Why 9??? Just asking

[PMRpro Ambassador in reply to IdasMum]

I'd never got the impression that 9 seemed a holy grail - except you are finally into single figures and it is a psychological boost I think.

[IdasMum in reply to PMRpro]

When I first started on steroids my GP friend Jane was quick to state that it would be good if i got to 9mg and my medicin here has repeated that figure.

Seems to have stuck in my head as the goal.

Maybe I could set my goal at 8

Single figures would be good although at 9 I'd be taking 5 tablets rather than 2.

[PMRpro Ambassador in reply to IdasMum]

Had you said 7.5 or 8 my reaction would probably have been a bit different! It didn't click - it has now!

Your body makes a natural corticosteroid, cortisol, in an amount equivalent to about 7.5/8 mg pred and which is essential to life. Above that your body DOESN'T make any more. Once you get there your body starts making cortisol again - so even though you take less than 8mg pred, your body makes up the difference. Good doctors know that - and stop panicking about the long term side effects of being on synthetic corticosteroids.

[IdasMum in reply to PMRpro]

Thanks. Have read this from you before....and will look forward to my body deciding to do some work.

[Suedeshayes in reply to PMRpro]

Hi.

Are you saying that if you get down to 7.5-8 mg of pred, then the body starts to make its own? And if it makes its own on top of the pred, what does it try to take it to? I haven’t fully understood.

Sue.

[PMRpro Ambassador in reply to Suedeshayes]

AFTER about that dose of pred the body makes enough to top it up to the normal physiological level which is said to be equivalent to about 7.5-8mg of pred. Your body doesn't care if it is natural or synthetic, it just needs the right amount. So below a dose of 7.5mg there is some pred and some cortisol making up the total.

A bit like you may have a wood burning stove and central heating in the living room. You set the thermostat at 22C, turn the central heating on and light a fire in the stove. As long as the wood burning stove is still getting going the central heating stays on to keep the temp at 22C. The stove warms up and eventually the central heating turns off and stays off until the fire in the stove burns out and is no longer contributing heat. The balance of stove and central heating changes until eventually only the central heating is doing the job.

[Suedeshayes in reply to PMRpro]

Thanks, I didn’t know that.

[yogabonnie in reply to PMRpro]

Is there a way to test if your body has started making it. Once you are say at 6.? Or is the test..you feel ok. ?

[PMRpro Ambassador in reply to yogabonnie]

There is a fairly simple test to see if your adrenal glands are CAPABLE of producing cortisol when stimulated. There isn't any point doing it until you are down to 7mg or below. They take a blood sample at 9am, give you an injection of ACTH which stimulates the adrenals to produce cortisol and take another blood sample at 9.30am. Sometimes they take a couple more samples at intervals. It is known as the Synacthen test or ACTH stimulation test. If the result is not what it should be they can work out how much it is making. If it is too low - they supplement with pred or hydrocortisone so you feel good.

Some doctors are really reluctant to do the test (anyone would think it costs a fortune and they were paying!) and a lot have never heard of it. If as you reduce below 7mg your fatigue INCREASES then poke your GP or rheumy to be allowed to have one done. If you feel well it may not be worth it as it suggests your adrenals are taking up the slack. However, one lady on the forum felt fine but her doctor did a est - and they discovered her adrenal glands were barely producing anything.

[yogabonnie in reply to PMRpro]

thanks for this I am copying and pasting onto the list of notes I give my (fortunately very receptive) doctor!!

[Hidden]

I tried 9 and had bad few days. Did 10 then 9 then 10 and 9 last two days. Had dropped from 9.5mg. Hopefully it'll stick.

That is one beautiful baby that has shot up since I last saw photo. 😊

[IdasMum in reply to Hidden]

I've been doing that with 10/10.5 and now just 10. I felt slow and lacking in spoons on many of the days during the drawn out process and have no idea how much was down to tapering and how much was down to our nearly over lodger situation.

Today I made a cake.

Did quite a bit of reading around applying for citizenship in France (so much bureaucracy, I need full metal spoons for that).

My daughter, her partner and dogs visited and THEN I vacuumed 2/3rds of downstairs and mopped in kitchen/bathroom and loo

Plus normal providing of 2 meals.

I felt full of spoons and stopped every 15 mins to rest my aching back.

I am looking forward to bed but it feels so good to have a normal day where I feel productive.

Yes, Thea is growing fast. Can't wait to see her next on Skype...I expect she'll be babbling.

[PMRpro Ambassador in reply to IdasMum]

We have briefly considered applying for Italian citizenship but aren't sure we want to be Italians... We do have permanent residency though so hope that will be enough! And David already has his tiny Italian pension and HEALTHCARE and I get it in August 2019 with an even tinier pension. So all the delays and transition periods the better as far as we are concerned! Otherwise not sure what I will do from end of March to beginning of August! Must go and investigate when I have to apply for my pension - it takes well over a year usually!

[yogabonnie in reply to PMRpro]

Can you be dual citizenship?

[PMRpro Ambassador in reply to yogabonnie]

Probably - at present. Who knows in the future!

[MaryA_]

She beautiful!

[SheffieldJane]

If she was mine I’d walk all the way, she’s gorgeous!

Wishing you well, it’ll be the stress. It floors me every time. X

[Sandy1947]

Beautiful baby!

[yogabonnie]

I love that baby!! She is absolutely beautiful.