Yes! Reached 7.5mg

No, not early although some like to wait till 5mg.

I did not know about the test and I had it 6 months after I stopped taking pred.  The Acute Medical Consultant went daft and said it should have been done earlier  (I was in hospital for another problem).  It was done and everything was tickety boo.  That Consultant said - and I have never forgotten it, that people who have been on long-term pred should have that test before they stop taking pred. 

Left hand not knowing what right hand is doing comes to mind.

 

Not really - this, or a bit higher, is the point about which the adrenals have to start to contribute again and that could well be the reason for your fatigue now if it wasn't a problem earlier.

Obviously you have a bit of a twerp of a GP - will she be helpful about the synacthen test do you think? If not, just slow down a bit more - and watch out for any increasing tiredness which is really the first sign of poor adrenal function.

Have I asked before - where in Fife?

Honestly - I don't understand why doctors don't appear to understand you need it long BEFORE you get to zero - since after about 5mg is where you will have trouble and by the time you've got to zero you could be in REAL trouble!

Eileen

I learned the hard way and that is why I keep on saying 'sync test' early as possible.  I had a steep learning curve, as you well know - over the past 8 years.

Patients must be pro-active with long term chronic illnesses.  My mantra still is 'Knowledge is Power'.

Talk soon.

Hi Lodger,

i am currently at 8mg (for over 2 months). I stayed at that dose because I was travelling.  I am now settling in and will begin my reduction to 7.5mg the end of next week.  Should I have the synacthen test done soon as a baseline?

thanks🌸

 

We were probably all posting at the same time, so you will have read  Eileen and my comments by now.  Get it done - it is not a baseline, it is insurance or re-assurance. 

Hi Eileen! I am actually a Dundonian currently living in Craigrothie near Cupar. We have chatted before but I changed my name slightly to include Fife recently. 

I doubt my GP would be interested in organising a Synacthen test, she seems to find me having any knowledge about PMR and its treatment really annoying.... Shouldn't read what's said in these forums etc... !! She's the one who should!

Fatigue isn't something new for me and I happily fall asleep at the drop of a hat. Sometimes just for 10-20 minutes but I feel better for it.

Now that doesn't always include at night, that's a bit variable...

However, I was thinking that it was increasing. I will pay attention. I keep a sort of a diary recording how I am feeling etc.  

 

Sheila

Have you joined or been in contact with PMR GCA Scotland a registered charity.?

Yes a Lodger. I went to most of the support group meetings last winter. Was hoping to restart but my transport isn't as reliable as it was. Hopefully get to some of them.

hahaha... Sorry not 'a lodger' .....

Glad to hear you joined, the founder is a close friend.

Lodger was the name of a well loved long living cat, she was meant to stay 6 weeks and stayed 17 years.

Yes, I knew we'd chatted before but couldn't remember if I'd asked where you are in Fife.

She needs some education - because, strangely, there are an awful lot of people these days who are as capable as her of reading medical publications so we don't all come up with noddy science! That attitude is SO last century...

Just a thought, download the British Society of Rheumatologsts Guidelines on the Diagnosis and Treatment of both PMR and GCA and put them in an envelope and leave them on her desk at your next appointment.  Maybe a     moment.!!!!!!!!

I was actually going to try somebody else next time! Mind you, she is the GP designated for Women and the elderly... Hahaha... You would think.... Wouldn't you?....😁

Yes. Last time we spoke we talked about Dundee and your history there. You also pointed me at their lovely Support Group.

Ach the doc is hopeless! Actually she just stresses and upsets me. In the beginning my daughter always came with me but then I thought I'd be ok and went alone and came out in such a state! So insulting and patronising! And not allowing me to have any say in my treatment. (Or so she thought....) my daughter will come with me if there is a next time. With this condition you feel weak and literally dis abled enough!

Planning to try a different GP if I can, next time I need them. Goodness knows what she has written my notes though!

i haven't been for a long time and unless I go to speak about the Syncathen test or I become ill with something else, I will just continue to request my repeat prescriptions as I need them. I also request blood tests now and again. So I am ok for now without them! 

 

She SHOULD be monitoring you with 6 monthly bloods - looking for raised cholesterol and sugar at the very least so she obviously isn't on top of her job. But if you feel like that about her you definitely need a different contact there - if you can't relate to your doctor and they to you you will get nowhere.