Quick update - UTI and Synachten test enquiry!

[powerwalk]

Just quickupdate re my recent UTI post - I am not on a low dose "preventer" antibiotic for three months! Not ideal but hopefully it will work and let things heal up a bit. While at the GP I asked about a Synachten test (because of the severe fatigue) to which I was told - "no - only if you are on 7.5 or above for a continual length of time". So there!! No adrenal test for me unless I have another battle!!! Maybe down the line! Thanks to all who replied re the UTI situation. Hopefully this will give me a bit of a break fro all those infections.

[DorsetLady PMRGCAuk volunteer]

“A continual length of time” - after 3 weeks above 7.5mg your adrenals stop working. That’s why we are told to carry a blue steroid card. Many doctors won’t agree to a test until you are down to 5mg.

[powerwalk in reply to DorsetLady]

I am at 4.5 -have been forever cos I can't get past it with the fatigue! Sure will see how things go - maybe when I finish work in 4 months - I might feel more human. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

Yes I’m sure you will! I had fatigue all the way from 6mg down to 3mg using slow taper and 0.5mg steps - never had a test. Then they suddenly decided to spark, so hang in there.

[powerwalk in reply to DorsetLady]

I will - thank you so much!

[piglette]

Hi powerwalk, how long were you on pred at over 7.5mg for it is not to be considered a considerable amount of time?

[powerwalk in reply to piglette]

I think she meant that if I was on 7.5 for - say - a months or years. I've been on 4.5 for months now - - I have a couple of times gone up to the 7.5 a bit on bad times. But her thinking is I've been below the 7.5 now for about a year. Mind you its been a very, very miserable year!!!!!!

[piglette in reply to powerwalk]

Sounds to me like she is talking rubbish or trying to save on the budget. Who am I to comment though!

I agree about the last year being pretty miserable.

[powerwalk in reply to piglette]

oh she can be very set in her ways - though it wouldn't cost her anything or anyone's budget - I would have to pay for it - unless my insurance would pay - but that could be dodgey. Not sure how how much it would cost. Sometimes you just hit your head against a brick wall! I'll see how things go when I'm finished work in a few months as I said to Dorset Lady - maybe I'll feel a bit better with this sickening fatigue and maybe able to taper a little bit. Thank you.

[piglette in reply to powerwalk]

I live in U.K. and although we do not pay it seems that fewer and fewer things are available, it is quite a joke now. The fatigue is nasty, I feel shattered most of the time. I have had a new hip too which also makes you tired.

[powerwalk in reply to piglette]

Oooh I would think it does! Yes the ftigue is just overtaking everything - its quite beyond belief - and thats from someone with ME/Chronic fatigue for years! Gone to a whole different level! Hope everything goes ok with the new hip. Good luck.

[piglette in reply to powerwalk]

The new hip went well except I got the most horrendous blister on my lower leg which seemed to be because of a bruise possibly from the operation, eight inches long. I had to have an operation to debride it as it went sceptic, smelt horrible and they thought it was one of those flesh eating diseases. The GP thinks the steroids helped cause it.

[powerwalk in reply to piglette]

Oh good lord - sounds horrendous. Yeah - I suppose I do try to not think too much about the damage the steroids might be doing in the background - but all that sounds awful if indeed it had something to do with them. Hope you feel better soon and heal up well.

[piglette in reply to powerwalk]

It seems it happens if I get a bad bruise, my GP said it was due to thin skin. My orthopaedic surgeon said that the steroids had been eating away at the cartilidge in my hip, I am not sure how true that is.

[powerwalk in reply to piglette]

Not a pretty thought!!!

[PMRpro Ambassador in reply to powerwalk]

"the ftigue is just overtaking everything - its quite beyond belief - and thats from someone with ME/Chronic fatigue for years!"

Which really really does make it likely you NEED that synacthen test.

[powerwalk in reply to PMRpro]

Like hitting your head against a brick wall. I will certainly push things when I finish work in a couple's of months if there's no improvement. I'm probably expecting great things when I finish work in feb. Hope I'm not disappointed!!!!! Thank you.

[salparadise127]

My GP included a cortisol test with my regular bloodwork instead of a synacthen test. The level came out normal. I am down to 6mg prednisone after 2 years. Guess my adrenals are waking up as PMR subsides (hopefully).

[powerwalk in reply to salparadise127]

Yes hopefully. Just when people hearyou are taking steroids they think yo should be buncing around! If only!!! Thank you.