Just back from Endocrinologist appointment having been referred by my GP as I approach the rocky road of below 5mg. I wasn’t in the mood to be pushed around today and the touch paper was lit by his theory that I never had GCA and it is a neurological problem because I described my initial pain as burning and the Pred got rid of it so quickly (huh?!). I did say that that was regarded as diagnostic by the Rheumy and anyway, I know what neuralgia feels like and what about my sight problem and jaw claudication? He did say my age (55) was ok for GCA though, which is something. He may be right but I do detest sweeping statements based on not much.
Anyway, he said my Synacthen test showed my adrenals can work but that I need to challenge them now. Ok, I’ll give him that. My Irritometer started to smoke when he said as far as the Rheumy is concerned I no longer have GCA and can reduce from 5mg however the Endo’s see fit which is 1mg per 2 weeks to 1mg, then another Synacthen test. I politely said that I failed to see how the Rheumy can say this given that a) I’m still on Pred b) They can’t see inside my body and c) This is an autoimmune condition with a duration of at least 2 years and I’m 18 months in. I pointed out the stress on my body of three weekly drop in Neutrophils doesn’t help, but he didn’t really get it because he said, “but Neutrophils are for fighting infection and is nothing to do with this”. Big sigh. He got the consultant in and I told her that whilst I’m more than happy to challenge the adrenals I am having to cope with a far from restful domestic situation and am not prepared to risk my GCA management for the sake of getting down to zero ASAP. I said I know my body and will act accordingly and rest assured I hate being on Pred and am motivated not to see it as a gum drop. She was very nice and decided I wasn’t stupid so left it that I try to get on to 4.5mg proper to really challenge the adrenals because pussyfooting with 4.5mg nestled in mostly 5mg won’t be as effective. I have been spending a month trying to do more than two days on the trot on 4.5mg but I’m wiped out by the end of day 2. I also need to change my dosing from 5pm to 6am, which I could see is sensible as an ACTH surge happens at night and that may be knobbled by the Pred flooding in then. You never know, that alone might help me feel better later in the day. So, I’m going to cancel my engagements, tell the kids to step up even more, the dogs to walk themselves so I can dip my toe in the water and see where it goes on 3 days of 4.5mg.
Onwards and downwards (carefully)
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SnazzyD
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Really - I do get very irritated by doctors like that. Was he really and endo? The junior member of the rheumy expedition I saw was a "GP with a special interest" and at that point I knew more about PMR than he did...
But you have the basic information: your adrenals CAN produce cortisol. Which is a start!
It is interesting that he said to take your prednisone at 6 am. Most things I have read, and the prednisone printout from my pharmacist, says to take it at 8 am as that is about when the adrenals “peak” in the morning.
I am so disappointed by your appt. His only ideas were to keep trying to reduce and to change your dose time 😡. Surely there are more options than that!!!
I’m having horrible fatigue and have upped my dose from 2 1/2 to 4 1/2 while I wait for specialist appt...been waiting over 4 months so can get synacthen test.
Ah, the 6am was from me because I find absorption is better on an empty stomach. It means I can have my breakfast at 8am, which he agreed was ok. The reduction in his mind was to get my adrenals going not for the GCA which, according to the Rheumy’s notes, is no longer a problem apparently. They do seem to only think about their bit. My Synacthen test took about 4 months but my lovely GP thought ahead and booked me in way before I was on a low enough dose.
"Shortly after awakening, a sharp 38–75% (average 50%) increase occurs in the blood level of cortisol in about 77% of healthy people of all ages. The average level of salivary cortisol upon waking is roughly 15 nmol/l; 30 minutes later it may be 23 nmol/l, though there are wide variations. The cortisol awakening response reaches a maximum approximately 30 minutes after awakening though it may still be heightened by 34% an hour after waking. The pattern of this response to waking is relatively stable for any individual. Twin studies show its pattern is largely genetically determined since there is a heritability of 0.40 for the mean cortisol increase after awakening and 0.48 for the area under the cortisol rise curve.
Normally, the highest cortisol secretion happens in the second half of the night with peak cortisol production occurring in the early morning. Following this, cortisol levels decline throughout the day with lowest levels during the first half of the night. Cortisol awakening response is independent of this circadian variation in HPA axis activity; it is superimposed upon the daily rhythm of HPA axis activity; and it seems to be linked specifically to the event of awakening."
They go on to describe the effects of times of wakening on the peak using examples such as different working hours.
All this is much the same as I was taught. But another quote says the morning peak is between 8 and 9am - maybe they measured in teenagers...
But there is certainly evidence that taking the pred too early does suppress that morning surge, hence the fear they express of taking pred at night. But until you get down to about 5mg you need to take the pred at the optimum time for managing the PMR/GCA symptoms. If you still need it for the PMR and don't take it until 8 or 9am you won't have any relief until midday - which isn't very practical.
Right, it has always confused me because to my mind, if you take Pred am, your body thinks, “oh, I don’t have to do my surge, I’ll go back to bed”. Perhaps the hormonal precursors have been released in the night already, so the process has already started? I’m hoping that because I’m taking coated Pred, the artificial surge comes later in the morning.
If you are on coated pred then it won't even start to raise the blood level for the best part of 4 hours after taking it - has to get to the other side of the stomach first and then the coating dissolves quite slowly so the blood level climbs quite slowly in comparison.
PMRpro I did a very long post yesterday and my iPhone indicated you replied only I can I find your reply or Mrs. Nails reply. I don’t know when I am doing wrong. There were others as well. The website has changed a bit can you help me out here.Thank you
So if this info is accurate for me, I can take my prednisone as soon as I wake up. This will give my adrenals 30-60 minutes to do whatever THEY can and then my prednisone should have absorbed enough to kick in within the hour after that.
Thank you for the clarification about the 6 am timing 😊
Did he mention switching to hydrocortisone? I’ve read many places that for some people it helps get the adrenals back in the game.
You are very lucky to have a good GP! Mine is not proactive in any way, and not a great advocate either. But where I live there is a shortage of GPs and if you have one you keep him/her.....but I would love to “upgrade” 😂
No mention of Hydrocortisone. I’m meant to have a go reducing and call them if I have any trouble.
Hi SnazzyD
What is it with Endo’s? The guy l saw recently (& paid for the ‘privilege’) was so obnoxious & kept cutting me off mid sentence! I decided to go privately to try & get some answers as l was feeling so awful!......
I’ve had a Synacthen Test which prompted the referral by my Rheumatologist but he said my Adrenals are showing some signs of working eventually, just reduce slowly!.........
Anyway, he’s not seeing another penny from me!
I’m suffering terribly with hot flashes/sweats but Endo Guy just said everyone sweats! Really Helpful, l don’t think!.....
When I reduced to 2 1/2 and was scary ill, my unusual symptoms were deathly fatigue worse than I have ever experienced, an overall feeling of unusual illness - I was considering go to the hospital emergency, sweating everywhere and a craving for salt. As I increased my prednisone all of the symptoms have improved, tho I am still too fatigued and I still have too much armpit sweat.
I don’t want to take more prednisone to see if my symptoms improve as I’ve read the synacthen test is best taken under 5 mgs.....but it may be that you need a bit more prednisone to decrease your sweating. Tho if I remember correctly you have been given a reduction plan to see if it will help wake up your adrenals.
When l had my ‘episode’ which l’ve now taken to calling it (since Endo Guy dismisses it as being any sort of Adrenal Insufficiency!) l’d never felt like that before or since, but these overwhelming hot flashes & the DF (deathly fatigue - as per UncleMB) are really debilitating & affecting my life, like you l’m suspicious that going up on the Pred may improve things but I’m trying to reduce from 7->6.5mg as l’d really like to be back at 5mg
It’s a bit of a B isn’t it?
Have a good weekend & hope you can stay cool!......
Possibly at above 7mg the Adrenals just don’t bother but once we start going below that dose, they start to stir & maybe that’s why you felt slightly better at 6/5.5mg
I was jogging along nicely at 5mg last summer & ideally that’s where l’d like to be again, just starting the 7-6.5mg so fingers crossed 🤞
My youngest Son & his wife are home from France for a long weekend, so looking forward to see them later!
Have a good weekend & hope you feel as good as possible xx
I was at 2 3/4 and was having lots of fatigue but my PMR aches were good. I tried 4 times to reduce to 2 1/2......my PMR seemed to be accepting of doing that but the fatigue was awful. The 4th try scared me I was so fatigued.....so that is when I gradually went up to a place where the fatigue was manageable.
I always use the DSNS, so these were very slow reduction attempts.
I was telling myself to just go by the PMR aches and if they were ok, then I was good to reduce. I was hoping the adrenals would kick in eventually.........but they didn’t cooperate!
PMRpro I did a very long post yesterday and my iPhone indicated you replied only I can I find your reply or Mrs. Nails reply. I don’t know when I am doing wrong. There were others as well. The website has changed a bit can you help me out here.Thank you
“Irritometer” is my new favorite word! Mine smokes at the least little thing! Seems like 5 mg and below is problematic for so many people. I’m starting week 3 using DL’s method (6 to 5). I’m weary in the afternoon but it’s not terrible, with intermittent random pain that is not always present and bearable.
My Dr. has me taking Pred at 5 am to minimize side effects. It works for me but my schedule is not conducive to dating! I also have little patience for the parade of new people. I last about an hour and a half and then experience the gotta goes! Yesterday I had a huge ice cream at Dairy Queen after my disappointing lunch date. Maybe it’s unrealistic to hope for sparks!
I have always been a hunter! I have no expectations, learn about people and hope for the best. I really appreciate being single. It’s been 5 years since my divorce. Biggest news flash is that I’m not marriage material!
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