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margot34956

Wanting to know why, steroids

HI everyone, I have been wondering and probably should know but don't, why we take steroids for PMR?

What do they do? I know they stop inflammation, but how?

also the fact that the adrenal glands stop working while on steroids, Is this why they are taken and why do they need to stop working or is that just a side effect of steroids?

I started wondering while at the chemist waiting for a pescription and saw a supplement for adrenal support, should we take that as it seems that the slow tapering is because of the adrenals coming back to work, then shouldn't we help them? and thus be able to taper faster?

so many questions, I don't blame anyone if they don't have the time to answer.

thanks for all your help so far

27 Replies

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  • margot34956

    Hi, I have been taking steroids for about one and a half years now, started on 15mg and soon got down to 5mg. I have been able to do without for 4 days now but do have a few aches and pains. I too wonder how this all works, why some get down to a certain level and no further etc

    • brian75018

      I was steroids for just over 16months.

      Initially on 15, then up to 20, then saw consultant who suggested back to 15 then each month reduce. So finally finished the middle of May. I am not as stiff as when first diagnosed but I do have neck stiffness, which I never had before. I also have muscle pain in both my upper forearms and in my right leg inner groin. What didn't help is my consultant cancelled my appointment before I had finished the Pred. I am now back on a waiting list. My condition does not seem to have got worse since stopping. The pain felt is bearable at the moment. Time will tell if I have to resume, I was okay on a dosage of 3mg. I don't know if I should just resume at that stage, or wait for further advice. My doctors are very good, but our of their depth with PMR

    • david64576

      PMR has a median duration of 5.9 years - and less than 20% of patients are able to stop pred in under 2 years.

      https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

      On that basis it is not very likely that your PMR has gone into remission yet and what will probably happen if you don't go back on steroids is that the inflammation will slowly build up until it gets as bad as it was originally. Every morning a load of inflammatory substances are sed in the body and they cause more inflammation. The dose you are really looking for with the pred is the lowest dose that gives the same result as the starting dose did. It sounds as if yours would have been 3mg - or even lower. Even 1mg of pred can be enough to keep a return of symptoms at bay. You souldn't have been left with no pred, even at that low dose you need to taper to zero slowly because of the adrenal function factor. 

      If you mean the GPs are out of their depth they need to get their act together. PMR is the most common cause of rheumatic symptoms in over 65s - so they are likely to have plenty of patients with it and it is getting increasingly difficult to see a rheumaotlogist for care as there is a world-wide shortage. Normally in the UK it would be the GP who manages the patient and this paper was written to help GPs manage PMR and look after their GCA patients better:

      http://www.rcpe.ac.uk/sites/default/files/quick.pdf

      Perhaps providing your doctors with a bit of bedtime reading might improve your care too!

  • margot34956

    Corticosteroids are a group of very powerful antiinflammatory drugs - and that is why they are used for PMR. They don't cure anything, they just mop up the inflammation which is what leads to swelling and so pain and stiffness until the underlying cause of PMR, an autoimmune disorder that causes your immune system to be unable to recognise your body as self and so it attacks it in the same way it would attack viruses or bacteria in an infection. That leads to damaged cells and inflammation. In 95% of patients the autoimmune disorder burns out and goes into remission in up to something over 6 years - about half need 4 to 6 years. 

    Sorry - can't tell you how though. I doubt anyone really knows the mechanism that makes pred work! There are theories but no-one has proved how yet as far as I know.

    The adrenal glands stop working when you are taking pred at a dose above about 8mg. They normally produce the equivalent of that in the form of a natural corticosteroid called cortisol and it is essential for proper functioning of the body. But the body doesn't mind whether the steroid is natural or man-made - so since it knows there is plenty available in the form of prednisone/prednisolone it does make any more. Once your dose is below 8mg they have to wake up and start to top up the available pred to the right level.

    Think of it like having central heating with a thermostat in the living room where you also have a wood burning stove. The boiler produces heat as long as the temperature in the room is lower than the therrnostat is set at. Once it gets to temperature it switches off but maintains the temp as required. If you put the boiler on AND light the stove, the stove pumps out warmth and the thermostat senses that  - the boiler switches off but the stove keeps on pumping out warmth. Only when the stove burns down and goes out will the thermostat turn the boiler back on.

    The only benefit of the supplements is to the pocket of the company that sells them! Don't waste your money. The slow tapering is partly to identify the right dose for YOU - we are all different, the disease activity varies, the amount you absorb varies and we all react differntly. You start with a higher dose than you are likely to need and then taper down slowly to find the lowest dose that gives the same result as the starting dose. All sorts of things make that not very easy for many people - slowly with small steps makes it more comfortable and identifies the right dose more exactly. It is only once you are down to 7mg and less that your adrenal glands have to contribute - and it is a very complex feedback system which takes time to settle down and get it right, several organs and hormones are involved and they have to get into balance (the hypothalamus, adrenal glands, pituitary and thyroid are all involved). The smaller the reduction the less they have to swing around - and allowing the body to settle between reductions helps too so not reducing every week or two is a good idea!

    It is a lot more complicated than you would think!

    • EileenH

      It certainly is very complicated, I do understand a lot more now, thanks to you, and all your other help greatly appreciated.

      It is very interesting to discover it's not just the adrenal gland involved.

      I have already spent so much on supplements. Will not do that anymore either.

      Thanks again Eileen, for your time for everyone!

    • margot34956

      I read a couple of days ago that the one thing which may be worthwhile supplementing is DHEA, whatever that is.  Nothing else has been shown to have any benefit whatsoever to the adrenals.  Mainly we have to eat healthy, get plenty of rest, and appropriate exercise, outdoors if possible and, avoid bad stress..  

    • Anhaga

      DHEA Dehydroepiandrosterone, also known as androstenolone, is an endogenous steroid hormone!! I think I would check with a doctor or pharmacist before taking it.

    • ptolemy

      I wouldn't take it unless I needed to.  I was just saying this is what I read.  It is, apparently, the one substance that prednisone doesn't substitute for.

    • margot34956

      It's a precursor to male and female sex hormones.  Because of that, I suppose, supplements have been touted as an anti-aging substance.  It wouldn't seem wise to me to take it for any other reason than to restore whatever pred has taken away, and even at that I imagine the risks, there are some according to webmd, are important to take into consideration.  Now that I know this, which I didn't until like five minutes ago, I wonder if that's why PMR/pred makes most of us feel that we've aged years overnight.  I was in pain and slightly disabled before pred; after a few months on fairly low dose pred I felt I'd really aged.

  • margot34956

    As always, Eileen provides such excellent, understandable explanations. I will add that if the body is under constant or long term stress, be it physical or emotional, it puts a toll on the adrenal glands which produce the cortisol. To simplify, you can view Prednisone as a replacement for cortisol, that for whatever reason your body is not able to produce enough of to battle the PMR along with other causes of stress to the body. Often the adrenals work so hard long term trying to keep up with cortisol demand that they simply can't, that they "crash" or give up. They cannot produce enough cortisol to deal with our PMR inflammation (plus whatever may have caused it), and thus we need to provide artificial cortisol in the form of Prednisone. This makes sense when we look at the common idea that many AI diseases present after a significant event or stressor, or in people with long term stress, or in older people who have adrenal glands that are no longer functioning optimally. Here is a fairly simple link to how cortisol works in our bodies:

    http://www.yourhormones.info/hormones/cortisol/

    As you read through the symptoms of having too much cortisol in your body, they will sound familiar, as some will be the same as what people may experience as side effects from Prednisone. Side effects may or may not mean that your dose needs to be tweeked. People are very anxious to get off of Prednisone for these reasons, but remember that allowing the pain and inflammation back in and taking away the "fake cortisol" will seriously stress your body as it can't keep up with what it needs to fight the PMR cause. That's not good either, as cortisol is needed for other roles in the body. Often it's best to choose the devil we know (Prednisone) and can try to control.

    I am going to disagree with Eileen on the value of the adrenal supplements. I'm not going to say that they will help noticeably, but they may help, and they likely won't hurt. If they easily fit into your budget it won't hurt to add them in. If they are a strain to the budget leave them out. They certainly aren't going to have you waking up feeling better the next day. I do take adrenal support supplements myself, and both my naturopath and regular doctor encouraged me to do so.

    I know we talk about this often, but I think this may be where diet and lifestyle change can be important as well. The less we stress the body, with chemicals, artificial ingredients, too much sugar, etc. the less stress the adrenals have to deal with. We need to be sure we are getting enough sleep, don't "overdo", etc. to baby those adrenal glands so they can do their job. 

    I hope some of this helps. I always feel a great need to understand things myself and it empowers me to at least understand the process and why I am doing what I am doing.

     

    • doni89057

      Hello Doni, this really does help very much! thank you.

      I had not known that the adrenal glands no longer produce enough cortisol, that is very good to learn, and that is the reason for steroids!!! So good to know why!!

      I am also glad to hear that your natural Doc and naturopath have encouraged it.

      I am going to go ahead and try them, budget allows it, just.

      since diagnosis I have been learning about the anti-inflammatory diet and have been on that.

      yes I can understand stress, although I wasn't aware of how much, until I have made changes to do with not doing so much and taking time to rest, something I never did before.

      thanks so much for your very kind help.

      Wishing you a nice week!

    • david64576

      I suggest if you avoid manufactured foodlike substances, sweeteners of all kinds, some fats (mostly the seed fats like sunflower, safflower and canola), limit your intake of the basic grains (wheat, corn and white rice) and eat food you can recognize in its natural form, particularly fresh vegetables, grassfed animals and their products, oily wild caught fish, olive oil and fermented foods like yoghurt, kefir, kombucha, fermented vegetables (sauerkraut and its many cousins), you will be eating an anti-inflammatory diet.

    • margot34956

      Dear Margot, it is not that the adrenal glands no longer produce enough cortisol, it is just that as the pred is producing loads they decide it is not worth producing any more as it is redundant so they take a holiday until you reduce your pred to a point that they need to start working again, around 7.5mg pred dose. This is a reason a lot of people get very tired when they get to lower doses as the adrenal glands are leaping into action again. 

    • david64576

      David, I follow a diet protocol called The Plant Paradox. It has been life altering for me, and I believe has dramatically limited my PMR symptoms and Prednisone intake, although it didn't prevent me from getting the disease in the first place. The book is a NYT Best Seller, The Plant Paradox by Dr. Steven Gundry. Might be worth a read for you.  I have been eating this way for a year and a half with great results.

    • david64576

      Hi David, yes, I have cut out all gluten, sugar, red meat and processed food, it's taken a while and I am still not sure if I have it all right.

      I did buy gluten free bread, flour, pasta etc but found I was still feeling unwell after eating those products so reading the ingrediants, discovered they contained potato starch or corn, both cause inflammation. So now I buy paleo bread and only brown rice crackers and pasta made from beans. I was never into cooking but have now got some really nice recipes and quite enjoy cooking.

      Hope that is a bit helpful

    • margot34956

      Adrenal gland function probably has no role to play in PMR at all. Some patients, but by no means all, were found to have lower than average but not low cortisol production so the theory that it caused PMR was shelved. 

    • EileenH

      Hi Eileen, yes I do understand what you are saying about the adrenal function, low cortisol, does not cause PMR.

      What I wondered was if the steroids stop the adrenals functioning, then would we not support them to begin working again during tapering below 7.5mg, by taking adrenal support.

    • margot34956

      Because despite all the claims, nothing is proven to actually "support" the adrenal glands. And it is not just the adrenal gland production of cortisol that is involved - there are several organs and more hormones etc involved in a very complex feedback system, all of which have to establish their correct level to make the right amount. It is less that the steroid stop the adrenals functioning as that they know there is enough steroid present and so don't produce more - just as your heating boiler doesn't produce more heat when the room is warm enough. But because there are a lot of factors involved it takes time to get the balance right.

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