Adrenals

[ptm2018]

How does one really know when the Adrenals have kicked in?

[PMRpro Ambassador]

Basically when you can reduce to a low dose without increasing fatigue and other symptoms of poor adrenal function. Though sometimes people get a low dose without any problems and then it is found.

[ptm2018 in reply to PMRpro]

I am down to 1 mg of Prednisone. Will be getting my next blood work done soon. Overall I am feeling good. But I do worry that once I stop the Prednisone that this nightmare will begin all over again.

[PMRpro Ambassador in reply to ptm2018]

Then the adrenals are probably fine - and they really are for the majority if they have reduced slowly enough.

There are doctors who encourage their patients to keep a stock of 1mg and to pop one if they feel any niggles. And there are people who hang on to that 1mg dose as a talisman. I suspect I would!

[ptm2018 in reply to PMRpro]

Thank you for that tip. I was wondering about asking him if I can stay on the 1 mg. Some researchers say that not everyone drops low on their ESR blood levels and that the doctor should look at the person overall. Your thoughts?

[PMRpro Ambassador in reply to ptm2018]

I'm a great believer in "treat the patient, not the numbers". Symptoms should always be trumps. At 1mg there is absolutely no hurry - you can take 1mg and then take odd days off and increase the number of days off. Eventually you will go for days and not have a problem.

[HeronNS in reply to ptm2018]

Further to PMRpro's remarks, my doctor told me right at the beginning that she has patients who keep a supply of 1 mg pred on hand even when they have tapered to zero in case they need it. I think the idea is to do as PMRpro says, a sort of stretched out final dead slow taper.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

I stayed on 0.5mg for a few weeks longer than I was going to - just because I felt a bit “odd” for a few days. When I finally summoned up the courage to stop I was fine! Think it was all in the head really - but after 4 & half years you always wonder “is it going to okay” .

It was!

[ptm2018 in reply to DorsetLady]

What was your final ESR reading?

[DorsetLady PMRGCAuk volunteer in reply to ptm2018]

Hi,

22, but that was probably due to arthritis rather than GCA! Post GCA/Pred it now runs high teens/low twenties.

Pre diagnosis it was 58, and most the time during Pred years ran in single figures or low teens. It did shoot up to 30s/40, but I now know that was due to stress over late hubby’s health issues and subsequent death. No GCA symptoms whatsoever.

ESR can be affected by many things which is why we say symptoms are the key!

[ptm2018 in reply to DorsetLady]

My last reading was 38 and I am on 1 mg thank God feeling very good and active. My Rheumy told me that not everyone drops to the "norm" guidelines. He said he does look at the numbers, but he is more interested in how much physical activity I am doing and my attitude and if I have pain. Sed rates vary as it relates to the age of people. For example, senior's may naturally high higher sed rates but it does not necessarily mean that all seniors who may have high sed rates have PMR. PMR as we all know, is very distinct. The pain is unbearable. We cry. At this time of my life, I am so grateful for being pain free although someone else in this string said that we may have a twinge or two and that we must recognize when the "real" symptoms begin. I like the idea of staying on a small dose for awhile. I am not yet sure I want to go off of this prednisone even if he tells me to do so. But I will discuss all of this with my Rheumy next week. : )

[DorsetLady PMRGCAuk volunteer in reply to ptm2018]

At the very low dose that you are on you are not at any risk of side effects, but it might just be enough for you to feel good so why rush to come off it. I went down to 0.5mg on a slow taper and stayed there for a good few weeks. It’s a big thing to come off Pred, so do it as and when it suits you!

If your Rheumy has anything about him, he will understand that and let you do it in your own time.

I changed surgeries part way through my GCA journey and my new GP said - you know your body better than I do, so reduce when you feel good!

Wish there were more like him- our lives would be simpler sometimes!

Your ESR readings could well be due to other things, or maybe yours naturally runs slightly higher than some. Unfortunately it’s not something that is tested until you are ill, so you don’t know what is YOUR normal!

[ptm2018 in reply to DorsetLady]

Not in any rush. As I stated, in the elderly ESR levels could be elevated the result of age. 😌

[DorsetLady PMRGCAuk volunteer in reply to ptm2018]

What isn’t the result of age!

[ptm2018 in reply to DorsetLady]

LOL

[PMRpro Ambassador in reply to ptm2018]

More recent thinking is that the increasing levels found in many older patients are not simply "due to aging" - they really are a sign there is extra inflammation present in the body and while it may not be possible to sort everyone out a level of over 20 should be investigated to rule out potentially unpleasant reasons and not just be accepted as "your age".

[ipsidipsy in reply to PMRpro]

My ESR level from blood tests went from below 25 to below 35 as an acceptable level. My rhemy said that the acceptable level had risen due to my age - 70.

[jinasc]

A Consultant Endocrinologist will tell you.

I had a Synacthen test. No good until your 7.5mg and below.

[Annimac in reply to jinasc]

I had a Synthacthen test about four weeks ago but have heard nothing. How long do they take to come back to you with a result ?

[PMRpro Ambassador in reply to Annimac]

Depends on your hospital - but they should be available by now. I would chase it up.

[jinasc in reply to PMRpro]

Me too, I had my result within one week............mind that was 7 years ago..........

[Annimac in reply to jinasc]

Thank you jinasc..

[Annimac in reply to PMRpro]

Thank you PMRpro I'll ring today.