Physiological level?

[Brixhamhampster]

Hello again it is Brixham hampster with yet another query. I have today reduced to 7mg of prednisolone and I read somewhere that this is the physiological level. Could anyone explain what this means. I haven't had any problems yet with tapering but have a "feeling" I may hit the buffers any time soon. There is so much amazing knowledge on this forum I don't know what we would do without it. Hoping someone can enlighten me. Thank you.

[SheffieldJane]

Hi Brixham Hampster,

I have learned from the boffins on this Forum that 7 mgs is the stage at which your own Adrenal Glands have to wake up and begin working for themselves. This can be a sticky patch because sometimes they are reluctant to wake up and this can give rise to symptoms such as fatigue and pain. If I have got this wrong, I'm sure someone will come along and enlighten you further. Well done with your tapering so far. I hope I can get there so smoothly.

[Brixhamhampster in reply to SheffieldJane]

@sheffieldjane. Thank you so much for your quick reply and it rang a bell what i remembered reading. I am taking it extra easy today as it is my first day on seven mg and I will definitely go back to 8 tomorrow if I get too many symptoms. What would we do without all this expertise and such lovely people so prepared to share it. Thank you again.

[PMRpro Ambassador]

It is called a "physiological level" because it is about the same amount of corticosteroid as your body produces naturally every day in the form of cortisol and which is essential to life. The exact level varies from person to person though.

When you take a higher dose than this physiological level, the body systems recognise there is enough corticosteroid present in the body and doesn't then stimulate your adrenal glands to produce any more - just like your central heating boiler knows it is warm enough and doesn't switch on.

At some point below about 8 or 9mg pred you get to the borderline where your body needs a bit more to top it up so will have to make some. The longer you have been at a higher dose than that, the longer the whole system takes to wake up and start production again - one of the reasons we really emphasise the slow reduction below 10mg. If you go slowly enough almost everybody's adrenals get the idea and start production. It isn't JUST the adrenal glands - it is an entire system with a few organs and several hormones that has to get into the right gear.

SJ is right about the fatigue - sometimes people feel MORE tired as they reduce the pred - it's their body telling them to slow down a bit so it can catch up.

At this point too you are at a bit of a risk of adrenal insufficiency, especially if you are under a lot of stress - ill, in an accident, emotional stress - and that is why you should carry a steroid card to tell healthcare workers why you may be unwell so they can treat you properly.

[Brixhamhampster in reply to PMRpro]

Thank you once again pmrpro for all your advice and I have seen the dead slow method and will follow it. One of the advantages of having no follow ups or advice from my doctor is that I can do things at my own pace! I have managed to stock pile a few tablets with my repeat prescriptions which will come in very handy. Hope you are taking care of yourself and not wearing yourself out helping us all.

[PMRpro Ambassador in reply to Brixhamhampster]

Hehe - just been sitting reading in the sun on the balcony. Eleven years ago we were out there with gloves on building IKEA wardrobes (it was perishing!). Preferred today...

[nuigini in reply to PMRpro]

PMRpro, can you point me to any research papers or medical articles addressing the topic of the degree of variation in the "normal physiological level" ?

[PMRpro Ambassador in reply to nuigini]

Sorry no, have had a quick look but can't find any - it's a logical consequence of the bioavailability of pred which varies from 50% to 90% absorption of the dose. If I take 10mg and absorb 90% of it - it is above the normal physiological amount of cortisol. if you take 10mg and only absorb 50% of it, that is equivalent to 5mg and below what is accepted as the physiological dose which is usually quoted as 7.5mg.

[Brixhamhampster]

@pmrpro. You are like a guardian angel so ready to help so many people. I have been very fortunate so far to have reached this stage having only started on 20mgs in June. I have not had any return of pain so far but just feel that this is a deciding drop and so only going to do alternate days 7/8 until I am confident. I appreciate the information about physiological level and it makes the picture clearer how I must be very careful now. Thank you for your endless support and kindness.

[PMRpro Ambassador in reply to Brixhamhampster]

Have you seen the "Dead slow" approach? That makes these later drops easier by spreading it over longer. No reduction should be more than 10% of your current dose - and now you are above that if you reduce 1mg at a time. You can cut 1mg tablets to make the drop a bit smaller as well. Lots of people do 1/2mg using the Dead Slow reduction - even gentler.

You have done amazingly well to get to here since June - don't rush and spoil the ship for a ha'p'worth of tar!

[DorsetLady PMRGCAuk volunteer]

Hi,

Others have explained so I won't reiterate what's already been said.

Just be aware that things may be a little more difficult, you may feel more fatigued at times, but nothing to panic about

As I've said before found the reduction between 6mg down to 3mg quite difficult, so suggest if you do then try reducing by 0.5mg a time and using a slow plan - if you don't already.

I had been on high doses and for about 2.5yrs when I got to 6mg so think that may have been a factor. You may find it easier depending on what dose you started at and how long on Pred.

Just another part of the "journey" to negotiate!

[Brixhamhampster in reply to DorsetLady]

Hello Dorset lady I always think of you as a sort of nearish neighbour as I live in Devon and I assume you are in Dorset. Thanks to you too for the extra snippets you have included in your post. It is really empowering when you receive some advice that makes sense of this horrible condition. My heart goes out to you for having this illness for years. It is so exhausting and so little understood. You are such stoics and so good to be helping others when you are still suffering yourself. I am so grateful thank you.

[DorsetLady PMRGCAuk volunteer in reply to Brixhamhampster]

Hi again,

Yes - only down the road compared to some!

Actually, whisper it, but I'm not suffering anymore - 2 months off Pred - zippidee do da! ....or words to that effect.

[Brixhamhampster in reply to Brixhamhampster]

Lovely to hear such good news for you. After so long it must be as big an adjustment as when you were first diagnosed. At 75 I am expecting to be in it for the long haul but thanks to this forum it is do-able so far. Enjoy your health.

[DorsetLady PMRGCAuk volunteer in reply to Brixhamhampster]

Not necessarily - age doesn't mean you can't get off Pred! You just have to be patient and do things gently, unfortunately some don't manage it, but the majority do!

Took me 4 and half years after starting at 80mg, so if I can do it, so can you.

[Charlie1boy]

Thanks to PMRpro and others for these replies. I have just got to 6.5mg, and don't feel particularly comfortable with this level. Certainly, more fatigued than I have been, but it's been taking me ages to get down to this level from about 9mg. Hoping not to have to increase again!

Cheers

[PMRpro Ambassador in reply to Charlie1boy]

If you are finding the PMR uncomfortable at this dose - beware, you may be flirting with a dose that is simply too low.

The increased fatigue though could well be your adrenal glands having to catch up with the decreased dose of pred.

[Charlie1boy in reply to PMRpro]

Yes, thank you PMRpro. I am watching myself very carefully. I've been on 6.5 mg now for three weeks, and there is no way I'm anywhere near ready to try 6mg even by the dead slow method. If I need to back up a bit, then I will do that.

Thanks again?

[HeronNS in reply to Charlie1boy]

I found every reduction from 7 on has been a bit of a struggle, but I stick with it, and eventually get down. I'm now attempting second try for 2.5. Time will tell, quite soon!- if this effort will be successful. The beauty of dead slow method is it really helps sort out the difference between pred withdrawal and return of PMR symptoms. Withdrawal happens quite quickly, but eases, especially if you are using dead slow taper. PMR the pain starts to creep back slowly, and instead of getting better as the taper proceeds you stall, or start to feel worse. With dead slow it's dead easy to find your last good dose to control PMR, so in the end, by going almost painfully slowly, you end up with a much lower lifetime total of pred. That's the theory anyway.

[Charlie1boy in reply to HeronNS]

Thanks HeronNS, that was useful for me too. I used the dead slow method from 10 to 9mg, which in fact told me to go back to 9mg. Since then, I have reduced in halves , and that has actually been reasonably ok.

I very rarely see my GP, but he did say, on one occasion that he regards getting below 7 mg as a real sticking point.

Re pill cutters, my daughter got me one online, and it has been excellent so far. It is Safe + Sound Health.

Cheers

Ps: Forgot to take my 4 mg dose last night, so suffering a bit the morning! Stupid!

[SheffieldJane]

Thanks HeronNS,

That is useful information for me.

Have you found an effective pill cutter? I bought one and it broke at my first use of it. If so where did you get it?

Has anyone found a good one?

[HeronNS in reply to SheffieldJane]

When I asked at my local pharmacy they actually gave me one. It has a drug company name on it so is promotional material. It seems to work well enough, although it doesn't cut quite straight so I have to shave a little off the bigger half and then gather up the dust as part of that particular morning's dose. Getting quite good at it. Not sure how things will go when I start cutting a 1 mg, but that's still down the road a bit. I looked at the cutters they had for sale and they really didn't look any better than this free one. I think one just keeps acquiring pill cutters until you get one that works!

[9lives in reply to SheffieldJane]

Hi got my pill cutter from the vets. I run a boarding Cattery so need a good pill cutter for some of my guests that are on medication. Hope this helps x

Carole

[Wenben in reply to SheffieldJane]

'Safe + Sound' from Boots - brilliant - works every time

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Your local Boots - may be the oldest chemist in town, but still the best for basics!

[SheffieldJane]

Thank you everyone as I inch towards 0.5 reductions.😳