Adrenal issues

That seems worth thinking about, and I'll add that caffeine acts on the adrenals to the point where their critical role in maintaining transient blood pressure response/regulation is compromised.

I too had the stress of injury (and financial consequences) in the months prior to pmr, with the final straw apparently being a 3-day cold spell that kept me indoors, without my usual level of daily exercise.

Debbie

How long on pred?

You can ask for a referral to an Endochrinologist (spelling) for a simple ACTH test,  this will show whether your glands have woken up and are well on the way to becoming fully functional.

This test is done when you are below 7.5mg and preferable when you are down to 5mg. 

I had one and it was absolutely lovely,  I took a book as it was a 4 hour test,  They put a canulal in my hand and took the first sample. The next thing I knew was when they woke me up as I had fallen asleep in the very comfortable chair. They just got on with it and woke me up when they had finished.

They had even took the book out of my hands and put a marker in its place.  I had only read three pages.

The result, yes they were working and what is more they were fully functional.   This after five years with GCA and on high doses.

Peace of mind.

Hi Debbie, in my case, most definately stress.  I was diagnosed with ME/CFS 15 years ago (stress) then went on to have PMR diagnosed Nov '14.  Started with 20mg now down to 3.5mg.  Being a single parent for 23 years, no job, full time university, first bought house before breakup (I kept it on).  No family support - no emotional support.  Constantly juggling 6 balls in the air all the time, then had my mum come to live with me (she was in the early stages of Dememtia) lived with me for 2 years, one of my sons diagnosed with kidney disease, it just never ever stopped.  I was on the conveyer belt of stress for ever.  Now, I have slowly but surely handed a bit of repsonsibility over to son that still lives at home.  Phew I am exhausted lol.  I am alive and breathing and am so grateful, I am truly Blessed.  Regards Pat

I had several years of extreme emotional stress before developing PMR. I just kept going during those years, what was the alternative! When it finally eased and I felt less stressed, PMR hit.

I would just say, an International Survey, which is still running, shows that there seems to be as many reasons for PMR coming along as there are grains of sand on a beach.

Most auto-immune illnesses show just the same.  Eventually the cause will be found, but what  I do know - not in my lifetime.

 

Hi Debbie

Sorry I do not fit the mold. I have been retired for two years finnacial stable resonable fit. I started off with server jaw pain what i thought to be ocular migraines  and then server headache and week later a biospy and folowed with a positive test for TA. So it has been almost 10 months now I am down to 4 mg i beleive that my adernal gland function has been server depressed and are wait for some test at the end of August 

Most of the orginal side effects have demished (but I still cannot spell) and at this level new ones are starting to appear I find it very furstrating

good luck Debbie

 

Yes, moving stress, a break up of a committed friendship and a terrible fall to my forehead caused the arrival of PMR 2 years ago.

It was such a change to my well-being and mobility which brought me to tears many times --- and disbelieve that it would happen so suddenly.

It took me a long time to come to terms with this disease, but now I feel,  I can see the light at the end of the tunnel.  I started with 20 mg of prednisone and I am down to 6 1/2.....very slowly 1/2 mg a month.

This caring forum with the help of Eileen gave me understanding and hope!

Yes, definitely stress, both emotional/psychological and physical.  

Hi Debbie,

As I'm sure you know, your adrenals don't have to make cortisol until your pred dose drops below 7 1/2 mg (or so) so as you reduce further you need to make sure they are kicking back . 

Here is what I have found out about my adrenal function so far. I have been on Prednisone for 3 1/2 years and have had 3 flares.  The last one was the most discouraging because I was at 4mg and tried to decrease to 3.5mg.  After dropping 1/2mg a week for 3 weeks I had a major flare for no apparent reason.  I couldn't believe it!!!  I had to go back to 10mg and after a very, very slow decrease, even slower than e DSNS method, I have been at 5mg for almost 3 months.  I decided that this time I would make sure my adrenals were working well before I decreased any further in case that was my previous problem.  I was supposed to have the ACTH Stimulation test but my GP put the wrong test on my form and I ended up having a cortisol test.  I was taking my pred between 3 and 4am but didn't take it the day of the test.  My cortisol level was about 1/2 of the minimum normal range.  I went back to my GP and asked for the ACTH Stimulation test but she forgot to add the Stimulation part and I ended up just having the ACTH test but it to was 1/2  the minimum normal range.  I can't get into a specialist until Sept. to have the Stimulation test ordered (crazy Canadian medical) but because of the low levels of cortisol and ACTH I am going to stay at 5mg until I learn more. I certainly don't want to have another flare and am willing to stay at 5mg for as long as it takes to get my adrenals up and running again (hopefully).

Sorry this was so long but thought my experience might give you more food for thought.

And, yes, I believe my PMR was triggered by stress as well but it's usually that last straw that breaks the camels back as they say.

Hope you find your adrenals are healthy and you can continue your reductions smoothly.

Hugs, Diana