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Reducing Steroids and Activating the Adrenal Glands

Hi I read this article some time ago, and although it refers to another systematic Vasculitis illness - CSS (Churg-Strauss Syndrome) or EGPA it has relevance to GCA/PMR patients. CSS also seems to predominantly affect European and North Americans over the age of 50!

It may explain a few things for new patients especially

Reducing Steroids while on a Low Dose & Activating the Adrenal Glands By Marian Mesker - October 2006

Tapering steroids (also called corticosteroids or glucosteroids) while at a high dose is often not so difficult, since in a way your body is oversaturated with them. However, at a lower dose some of your symptoms may return, especially when the steroid tapering is done too early or too quickly. At any time it's important to find the lowest dose you need to control your disease.

For most CSS patients (in our case read GCA) it takes quite a while to reach a low dose of steroids and be well. It takes as long as it takes, so patience seems to be the right thing here, to avoid a flare.

Below 15 mg. prednisone/ prednisolone (a steroid) tapering usually gets more difficult. Most patients mentioned that they had to do this very slowly, and only if they were feeling really well - and not more then 10% of the total dose each time. While tapering, discomfort is not unusual, with pain in the joints, arms or legs, low energy, sweating etc. frequently mentioned.

Often patients get instructions from their doctor at diagnosis and in the beginning of their illness. Later on it seems to be more of a personal matter: what is possible for one patient is different for the other. Listening to your own body, deciding together with your doctor whether to taper and how much, seems the best choice.

To avoid discomfort and possible flares below 7.5 mg prednisone, some patients mentioned tapering by 0.5 mg each time, in which case 1 mg. pills come in handy.

When you have been taking steroids for a longer time your adrenal glands (small glands situated just above the kidneys) no longer produce cortisol, the natural corticisteroid hormone, produced by the body to fight illness and cope with stress. This explains the inability to respond to acute physical stress. In certain cases, like an operation or other stressful events, an increase in steroid intake may be needed. So, you are living with a body that's relying on a drug to get enough cortisol to function properly.

At 7.5 mg. prednisone (this is an average, it could differ from 5 - 10 mg. for different people) the adrenal glands should get activated and produce their own cortisol again. Eventually the adrenals will take over again, but this needs time.

FOR THIS REASON YOU SHOULD NOT SUDDENLY STOP TAKING YOUR STEROID TABLETS OR ALTER THE DOSE SIGNIFICANTLY WITHOUT DISCUSSING IT FIRST WITH YOUR DOCTOR. SUCH ACTIONS MAY RESULT IN ADRENAL CRISIS.

What can we do to support the body and stimulate the adrenal glands to produce cortisol again?

---The adrenal cortex, the outer portion of adrenal glands, needs cholesterol to produce hormones. Therefore our diet should contain fat, both saturated and not-saturated. Although completely avoiding animal fat is unwise in this case, moderate consumption is better. Cod liver oil is especially good as it also supplies vitamin A, which is necessary for the adrenal cortex to make adrenal hormones out of cholesterol.

---Other major nutrients the adrenal cortex needs to do its job are: vitamins B5 (pantothenic acid) and B6 (especially the co-enzyme form of vitamin B was mentioned) and vitamin C. These should be obtained from food sources or whole food supplements.

---Glucocorticoids can do their job easier if you have a limited sugar and carbohydrate consumption.

---Cut back on caffeine and caffeine-related substances. Caffeine works by stimulating the adrenal medulla to produce adrenaline. Then the adrenal cortex must work double hard to produce the "chill out"cortisoid hormones.

---Avoid too much alcohol use, lack of sleep, overwork, and stress.

Are there other tips when tapering steroids?

--- Take your steroids at the same time each day, since cortisol levels in the body rise and fall during the day. They are high in early morning and lower in the evening (lowest at midnight). The best is to take them in the morning, around 8 a.m., to correspond with the body's clock release of cortisol.

--- To stimulate the adrenal glands, taking your cortisone dose every other day (eod) could be helpful. For example, if you were taking 4 mg. daily, you should take 8 mg. e.o.d. However, this is not well tolerated by everyone as some people definitely feel worse on the day off.

---What we eat has an impact on inflammation. "The Anti-Inflammation Zone" by Barry Sears mentions how virtually every type of chronic disease has a significant inflammatory component as one of its underlying causes. Red meat is said to be a promoter of inflammation, so large amounts should be avoided. Carbohydrates should be mostly from fruits and vegetables and less from bread and pasta. Google this book to read about possibly anti-inflammatory foods/ food supplements.

If your adrenal glands are not functioning properly there won't be enough cortisol in the blood for regulating your body functions, and you are likely to notice symptoms such as fatigue, nausea, vomiting, hypo-tension, dizziness, shortness of breath, muscle and joint pain.

There is a bloodtest to check this: the cortrosyn (ACTH) stimulation test. They'll draw some blood, then give an ACTH-injection (the stimulating hormone for the adrenal gland to make steroids) and after a while draw blood again. If the test shows that it's needed, the adrenal glands can be stimulated by ACTH injections. It is not very likely that ACTH injections will be necessary, though. In almost every patient the adrenal gland starts functioning again when cortisone is tapered, it just needs time.

One patient mentioned a possible complication in coming off steroids is "Steroid Withdrawal Syndrome" or "rebound effect", which is the body's exaggerated response to removal of the drug. Rebound effect can result in fever, muscle pain and joint pain - making it hard for a patient and his physician to differentiate between withdrawal symptoms and a flare of the disease.

Any dose of pred. below 7.5 mg is not considered to cause serious side effects, although also here people do differ.

Carry a Steroid Card/ Medical Alert bracelet while taking steroid tablets, recording your current Steroid dose and how long you have been taking it. If you become unwell or are involved in an accident you might need extra steroids, and doctors would be informed by the Card you are carrying.

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That was helpful revision DL. Thank you for posting. It explains where I am at at the moment.

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Very helpful. Thanks

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DL, Thanks for this informative article. So useful to me in these low dose days, and explains some of the experiences I've been having.

I thought the game was nearly over, but it looks like overtime is being called.

I'm feeling pretty grumpy in these 4.5 mg days, but no pain.

Thanks again, J

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Hi Jerri,

Yet another thing that’s not explained to patients at the beginning! Mind you, perhaps too much would be information overload, but it would be nice to be aware of such things, rather than be hit with all these different setbacks! And not knowing whether it’s us, or is everybody suffering the same.

Good job we’re a resilient lot!

Take care.

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Thank you for that, wish you could you show it to all the arrogant GP`s and Rheumies that we battle with to get our message across about how we are feeling!.....Thanks again....

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Nothing to stop you printing it off, and taking it to your next appointment.

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My rheumy only says to me...what dose have you got down to....when I took a list of how I felt in case I had pred head, he passed it back to me without even looking...so I would be wasting my time.........can`t print here what I say to myself when I leave his room!

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It is completely reasonable to look at the doc and say, “I would appreciate it if you would look at these symptoms. These are real and concern me, and I feel that you are not really taking me seriously when I am sharing this information with you and am put off.” Docs are only humans. Sometimes they need to be reminded, with respect, that you need their thoughtful input.

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He said to me, coming off pred is like when I cut down coffee, I'm not so sharp, I realised then I was wasting my time!......

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Quite!! No idea, and so dismissive as well.

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Makes you wonder about his academic prowess. Or otherwise...

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Yes, I felt so deflated, he then said take paracetamol, that should do the trick!....he must have seen the look on my face......he then said, if you were my mother this is what I would tell her to do.....and I was saying to myself, if you were my son...I know what I would tell you to do!!😠

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Obviously really not very "up" on latest findings about various things is he? Including paracetamol...

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Exactly....

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Spot on!😁

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A really good explanation and easy to understand.

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Thank you DL, a good document written in a way anybody can understand. It endorses what others have said and highlighted by your good self and other well known members of this site.

Very helpful

Pete :-)

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Hi Dorset Lady that is very helpful and explained in lay mans terms. I have had the blood test and waiting for the results to confirm my adrenal glands are working 👍

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Yes I thought so too.

So many articles, although written with the best of intentions, don’t always come across so succinctly and simplistically.

When you’re not in the best of health, simple is good!

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Thanks DL - a very comprehensive and well-worded article from CSS, and spot-on in terms of the management of PMR / GCA. And.. it reinforces the best wisdom here around all things to do with PMR / GCA and the management of such :-)

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Thank you for posting D L .very informative.

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Thank you for sharing a very good article.

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Thank you, so informative. I was perscribed prednisolone with no guidance as to its use! Thank goodness for sites like yours, which have got me on the right track.

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Dear DorsetLady

I have only GCA- I tried to obtain a new blue Steroid Card at the pharmacy attached to my new GP's Surgery to be told by one of the staff that Blue Cards had been discontinued as patient details were computerised now and medical personal could access the details if needed. Assuming that GP's remember to update details of course. Medic alert bracelets very good though. I wear mine constantly taking it off only when I'm in the shower.

Best wishes

Colin

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And the PMRGCA northeast of England charity has developed cards to replace the blue steroid card

pmr-gca-northeast.org.uk/in...

It is all very well saying "It's all on the computer" - but when you need it it may well be in another area or even abroad. Fat lot of use the GP computer with out of date info will be then. I deveoutely hope the computer records aren't as easily accessible as THAT!

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Hi,

If your computer details are anything like most government run systems heaven help you! As PMRpro says if you happen to stray outside your local Hadith* authority - no chance!

You also get one from the main charity every year when you renew your membership @£10 a year - a bargain!

*should read health - blasted iPad!

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Your ipad is getting very run away with itself... What have imams got to do with GP computers?

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Oh dear....where did that come from ....It's been a long morning! Too busy thinking about getting organised - buying Xmas presents for family here and packing etc for family there!

I hate inanimate objects that think for themselves.

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I obtained my blue card from our local pharmacy , in fact he gave me two so I could be sure I always had one x

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Well done that man! Glad to hear they are some switched people about.

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Dear Rosbud

I don't suppose you could tell me where your pharmacy is and I could try obtaining a couple of blue cards from there. I've filled three so far in three years nine months I've had so many different sized doses. I'm currently on 10 mg a day because I'm in my first flare and am now battling a very sick Liver and an inflamed Gall Bladder. Varicose veins in my right leg need treatment and I have a blocked vein in my left calf also needs attention. So you can see I am a very sick 70 year old boy. I much prefer the blue card because I can wave it at medics. As well as the last filled blue card, I have PMRGCAuk yellow and red steroid warning card in my wallet, a home made blue card in my diary and a 'myihr.com' bracelet round my left wrist. So someone would eventually get the message.

Regards

Colin

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Thank you DL for sharing the information. It is will be worth keeping for future reference.

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Thanks DL for sharing the information a great help for us all ,l am on 2 mg was advised by Dr to stay on 2mg following a blood test which l am comfortable with for a while Alice

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Very helpful

Thanks

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A great summary, thanks. I'm hovering around 10mg and am interested in symptoms to watch out for. At the moment I feel much more bloated and fingers more swollen than when on higher dose. As always it could just be me, who knows.

Saw my rheumy two weeks ago. "How are you doing?" Me - fine, trying to continue taper and am nearly at 10mg. Rheumy " ok sounds good, just carry on and we'll see you back here" Bye! Next appointment arrived in Post for next June!

I totally rely on all the advice and words of wisdom I read here. Thanks to one and all.

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Thank you so much; this is a really comprehensive explanation of what happens and why.

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Thank you, DL.

I will print this out and show it to my rheumi next time I see him .

I went to the pharmacy where they have ongoing prescriptions of all the meds I take. This month, they only gave me 30 pills of 2.5 mgs of pred !! Good thing I can get a prescription from OH , and it's probably the GPs error or the pharmacy's but it's a pretty bad error, considering I'm tapering 9/8..well, approximately, because I can't seem to get less then 1.25 mgs as the smallest denomination available is 2.5 mgs.here, and thus they give out tapering schedules that reduce 2.5 mgs at a time, regardless of the dose one is on. I tried cutting a 2.5 in four pieces, but it becomes like powder.

At one point, I thought the last, very young rheumi resident I saw, who got angry with me for going up after a flare, saying it has set me back at least a month , was punishing me by limiting the Prednisone but I think I'm being paranoid, ...I hope!

With this article , maybe I can convince rheumi to get me a special prescription for foreign drugs so I can get 1 mg tablets.

Thank you again, Dorset Lady..

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Hi,

Yes that is a bad error, shouldn’t happen if they have records and it’s a repeat prescription.

Your young Rheumy obviously doesn’t understand your condition if he thinks that a month’s setback is such a big deal.

Hopefully, if they take the time to read article, they may have a better idea of tapering. One can only hope!

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I'm keeping my fingers crossed..

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Gajin - here in Italy we can get the pharmacist to compound any dose we need, it costs a few euros but is worth it for the convenience. David had it done when he could only get 5mg warfarin and need 2mg, cutting for 2.5mg was such a pain and he knew 2mg every day was near enough perfect for him.

You get a prescription for a load of high dose tabs which can be ground to powder and then they weigh the dose you want into capsules for you. Here we need a script for the large dose - and a set of scripts for the number of the dose you want that fits with the large dose. Does that make sense?

Before starting on the doctors you can ask around your pharmacies to see if one offers the service in the first place.

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Thank you PMRPro...I hadn't seen this till now.

You're right, they do have pharmacies here that compound, hadn't thought of them . I will get OH to make out the prescriptions for me...if I ask the GP , she'll probably freak out, think I feel entitled to special treatment, etc..

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Oh dear Gaijin . ..what a palarva you've had. They can make rockets and fly to the moon but a simple thing like a pill cutter seems so unobtainable (I've read of others not being offered one) ..I have a pill cutter I think I got it from my Pharmacy. ..ask around its very good and saves a lot of faffing around.

Take care and good luck

Christine. X

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Hi Alex, I do have a very precise pill cutter but the 2.5 pills here are too small to cut into fourths, they crumble. Spain is not at all PMR friendly.No patient here is prescribed a Prednisone tapering schedule of less than 2.5mgs at a time! Which goes to show how they haven't done their PMR homework.

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Many thanks for info. V useful - just what I need at the moment.

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Thank you for that Dorset Lady. Very easy to read and understand and a good document to save and keep on file.

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Thank you DL for posting such a reassuring article. I was particularly heartened to read that any dose below 7.5mg has no serious side effects. Almost a year since diagnosis of GCA I’m just starting to taper from 4.5 to 4mg using the DSNS 4 day plan. And, joy of joys, I’m feeling -and dare I say, looking- more like ME. Hair seems to have almost stopped falling out, acne much less prominent, energy levels and general joie de vivre returning. I’m not holding my breath because, as it says, it takes as long as it takes, but folks, there is light at the end of the tunnel. Fingers, legs, toes, brain cells all firmly crossed......no flares please. Onward and upward on this extraordinary journey!

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I'd take that remark about 7.5 being a safe level a bit more cautiously. Risk of serious side effects reduced, but side effects still exist and if you are one of those whose bone density was affected by pred, that effect continues, although to a much lesser extent. I suspect the same is true for some of the other possible side effects. I still got those little purple bruises at 4 mg, so goodness knows what was going on internally. So we still need to be careful to look after ourselves.

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Thank you HeronNS - I must say that I was quite surprised at that figure. As for bone density, my Dexascan showed me to be osteopoenic so I have been careful to take the I-cal and Vitamin K2 as you suggested and have been using a rebounder to try and improve bone density. Diet as healthy as I can make it.....

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Hi,

I did think about that myself, but then checked the CSS article again. Apparently it was written by the patients themselves, not medical people. The starting dose for CSS, which appears to be more devasting than PMR or GCA and can be life-threatening, is 40-60mg.

So if you’ve got a group of people routinely starting at those high doses - comparative to GCA - but much higher than PMR then the side effects at 7.5mg are minimal - it’s all a matter of perspective.

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And it is certainly true that by about 7mg the worst of the side effects should be well under control. It seems like the weight gain becomes less of a problem by then, for example. My blood sugar was better, but it was at that level I had my eyes checked and the ocular pressure was a bit too high, so I have wondered whether I was in the danger zone for a while before that. And my hair only got better after a year below 4. Given a choice between 40 and 7, however, there's really no contest!

Interesting to read about CSS and it makes me even more grateful that I've only got PMR.

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Hi,

I went to NZ three years ago when I was around 7mg, and I can’t recall side effects bothering me. But I did have a cataract operation prior to that, and like you ocular pressures had been higher and then reduced.

But as you say the difference between 40mg and 7mg is a no brainier, let alone some of us who started at 80mg! Not quite how I got through those first 6 months really - think I was so grateful I still had one good eye, and I’m sure I was in a state of shock.

So agree, CSS sounds a lot more difficult to cope with. Grateful for small mercies I guess.

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Very helpful! Thank you for posting the article.

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Thanks DL very interesting!

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So useful: many thanks to the original poster and to DL.

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Thank you so much for this article. I took my last dose of prednisolone just over 4 weeks ago - after 8+ years of PMR. My rheumatologist advised reducing by 1mg every 12 weeks - so it was slow but steady and seems to have worked. However ... now I have aches and pains, including a badly swollen knee and I am sure this is due to my adrenals not working properly. So this article - especially the advice re food and drink is really helpful. Thank you.

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Hi, I found it took quite a few months to get back back to “normal” after Pred - I’d been on for 4.5years, and high doses to start - GCA. Some articles say it can take up to a year for the body to fully adjust to life with Pred.

Of course, as well, all the usual aches and pains of life come back after being masked partially or totally by the Pred, and we’ve all grown older! Unfortunately 🤔

Take care, and welcome to club zero!

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Thank you for your prompt response! Fortunately I have a very helpful rheumatologist. Rather than signing me off when I saw her 5 weeks ago she gave me a 3 month period to contact her if any major aches and pains occur - so I have an appointment to have my knee seen at the end of the month.

I am also trying to stay positive - and that includes being patient and not trying to do too much (that sounds familiar from PMR days!).

Hadn't thought of myself in a club - it's good - although I think I have been lucky especially when reading some posts.

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What a sensible lady your Rheumy is - she needs cloning!

From what I’ve read in here, some Rheumies seem to make the journey worse rather than better.

I only saw one once and he wasn’t very interested, think he was upset that my GCA had been diagnosed by an ophthalmologist rather than him!

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Very helpful, DorsetLady. Thank you! Aloha...

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Hi, Was looking through past discussions and saw something on 'total prednisolone load' (?) but now cant find it. How do you work out the total load and what is its significance (apologies if has already been posted, but I'm getting myself agitated about 2nd Total Knee Replacement on 17th.)

why when you go to pre admission clinics they (always) seem to find other problems? (lol....maybe because I'm getting old!) Regards, xD

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Hi,

Do you mean this post -

healthunlocked.com/pmrgcauk...

I’m not sure why Prof Dasgupta is particularly fixed on 20g. But unless you’ve been on it a very long time like PMRpro, or started at very high doses like me, most people are probably not going to reach that level.

To be able to work it out you need to have kept a record of all your doses etc, and probably most don’t. So don’t get stressed about it, it’s not worth it. Just concentrate on recovering from your op.

Good luck.

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I wonder if anyone could work it out!!!! I'm just working on a figure of x years at a dose in excess of y mg/day. So I have a suspicion that my 20g figure is rather underestimated!

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Yes, you probably have. The only way is to keep a record of dose every day - and life’s too short for that!

I think the new tapering plan that Sandra devised can do that for you, so new patients probably will have a better idea. But as for us veterans - too much water under the bridge etc.........

I worked mine out from something else I’d done, just as a matter of interest, but that was after the event ...don’t think my Pred-addled mind could have coped during, in fact I know it wouldn’t.

I’m not 100% convinced it matters anyway..as I said to another post yesterday...better the devil you know. Adding in another power drug just makes life more difficult surely.

I guess maybe in the far off future there may be better ways than Pred....but can’t see it in my lifetime.

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Well there does appear to be tocilizumab - at a price. But is it REALLY better than pred?

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Time will tell I guess. But at least with Pred we all know the long terms effects, whereas tocilizumab is in it’s infancy.

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Quite...

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Thank you Dorset Lady, what an interesting article. It suggests that taking your pred every other day will help stimulate the adrenal glands . Has anybody tried doing this and if so with what effects? Thanks, Toolmart.

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It very much depends why you are taking pred in the first place. Alternate Day Dosing is not recommended in GCA because it is felt there is inadequate management of the inflammation. If the dose is significantly above 15mg/day or for more than a couple of months then there will be adrenal suppression whatever pattern of dosing you try. It is mentioned somewhere that trials of using it in PMR didn't result in good symptom control. It depends a lot on how long the anti-inflammatory effect lasts for YOU. It varies from 12 to about 36 hours in various people. If you are a 36 hour person then you will find symptoms creeping back in in the second part of the second day and overnight, Morning stiffness will be a problem until the next dose kicks in. People for whom the effects lasts nearer to the 12 hour end will have returning symptoms far sooner although with double the dose maybe later than just 12 hours though it is difficult to say exactly how long. These patients often find 2x daily works better to manage their symptoms - they are definitely not candidates for ADD!

I used ADD quite early on in my PMR journey and for me it seemed to work well except I struggled to get below 17.5mg/2 days without a flare. Was that the effect of the ADD? Difficult to say, but I had no side effects I was aware of. Then I had some blurred vision which COULD have been due to GCA so I was told to go back to 15mg and daily dosing. It dealt with the double vision, I reduced again but I've never tried ADD again.

The majority of PMR patients will get to well below 10mg and adrenal function will start to return once they are below their physiological dose. It is actually recommended that ADD not be considered until the patient is at 10mg/day or lower.

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Dear PMRpro

This is 'bombshell' research material, and so important to many of Us Lot.

You really should Post this reply as a 'Headline Article' here, since so many of us with PMR and / or GCA feel like the proverbial rabbit in the headlights when confronted with the myriad of often confusing (and / or conflicting) options for how, when and why to take the Preds - and the rationale for choosing any of them. ;-)

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Many thanks PMR pro for a very swift and comprehensive answer.

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Thanks

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I missed this. I am going to print it out and take it to my rheumatologist. I tapered too fast and am back on 10mg. I had been down to 5mg but went from 10 to 7.5 to 5. I think it was too much of a decrease. I’m going to try again slower this time.

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Hi Lanakay,

Yes you’re right, too fast a reduction. Most patients when they get to 10mg reduce by 1mg a time. In fact most of the recommended plans from the Rheumy Associations state that. Plus below 5mg most on here would say 0.5mg is better. Your body needs smaller reductions to be able to cope.

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Thanks -Dorset Lady. A most helpful article. I think I am in the right place for getting on with reducing. I am sated with appropriate food and rattling with correct supplements. Have lost many stones in weight and am feeling better than I have for years. I exercise in the gym for at least an hour every day and walk alot. I eat more fat now than I have ever done in my life before and have rarely touched carbohydrates or alcohol in over a year and learned a great deal! Someone failed to recognise me in the supermarket the other day which amused me although my husband said he wasn't surprised! All in all am feeling very positive.

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Good! That’s what we like to hear!

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Thanks DL - very helpful especially now that I'm about to leap off the cliff. GCA was a nightmare, tapering has been quite an experience, understanding the mechanisms helped. Tuesday May 1 is D-Day, with a Coming-Off celebration (fatty pork chops to help cholesterol build up for me?) with friends. But, taken your advice - will be vigilant. Promise. xx

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Thanks for that DL. Had forgotten some of that. Think I will try the every other day approach to see if that will make a difference.

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