WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

[trails]

@Jonathan Edwards I appreciate and thank you for your frank sentiment. Forgive my lack of medical knowledge...I'm genuinely curious as to what you might attribute the remarkable results I've experienced with prednisone.

Is it common knowledge (and I've somehow missed it) that prescription steroids have a positive impact on many CFS symptoms? As you recall, were tests done that rule out long term benefits?

I'm perplexed in that I've been on this forum for a few years now and I don't recall ever having seen a slew of threads that run something like this: "Oh, it's well known that steroids offer near immediate and dramatic improvement to many CFS symptoms. However, we've covered this ad nauseum and you don't want to go down that route because..."

I have seen a few very short threads regarding prednisone, but with the symptom improvements I'm experiencing, you'd think it would warrant more attention than just the tiniest fraction of that devoted such topics as methylation, etc.

 

[Jonathan Edwards]

@Jonathan Edwards- could I ask the significance of age in the prescription of steroids. I am 69, and you commented that unless you are " over 65 5 mg three times a week is taking out a loan your body may never be able to repay".

I understand my local CFS service immunologist is willing to prescribe me low doses of hydrocortisone. My GP isn't keen but would probably agree if pushed. I haven't wanted to do this because of dependency issues when prescribed high doses of natural progesterone ( a precursor on the steroid pathway I understand) for PMS in the late 70s: it took years to reduce/ almost eliminate the dose. But if hydrocortisone is safe at low doses in the older patient, I could maybe reconsider.

Could you elaborate a little about the over 65 patient? Would be wonderful to get a 10-20% increase in functionality.

The toxic effects of steroids build up insidiously over 5-10 years. So my comment was intended to indicate that anyone less than 60 is likely to hit trouble one day. Those over 60 probably will too but perhaps more likely to get away with it. Effects on bone density make the person effectively 10-20 years older. I would not prescribe any form of corticosteroid (e.g. prednisolone or hydrocortisone) for ME/CFS to anyone to be honest. In simple terms if you give less than a toxic dose the adrenal gland simply resets itself to a lower level of production and you get no benefit. The main residual value of prednisolone in rheumatoid arthritis was to even out steroid levels by giving a 2.5-5mg dose at night to prevent a morning dip causing inflammation on waking. I d not see any comparable value in giving steroids in ME/CFS.

 

[trails]

I d not see any comparable value in giving steroids in ME/CFS.

It seems to me that "comparable value" would have to take into account the level of symptom relief experienced by the patient, yes?

 

[Jonathan Edwards]

@Jonathan Edwards I appreciate and thank you for your frank sentiment. Forgive my lack of medical knowledge...I'm genuinely curious as to what you might attribute the remarkable results I've experienced with prednisone.

Is it common knowledge (and I've somehow missed it) that prescription steroids have a positive impact on many CFS symptoms? As you recall, were tests done that rule out long term benefits?

I'm perplexed in that I've been on this forum for a few years now and I don't recall ever having seen a slew of threads that run something like this: "Oh, it's well known that steroids offer near immediate and dramatic improvement to many CFS symptoms. However, we've covered this ad nauseum and you don't want to go down that route because..."

I have seen a few very short threads regarding prednisone, but with the symptom improvements I'm experiencing, you'd think it would warrant more attention than just the tiniest fraction of that devoted such topics as methylation, etc.

The situation is complicated by the fact that in the short term steroids produce a 'high' and can mask all sorts of symptoms just by non-specific shutting off of injury response pathways. But the effect does not last. I have not looked at the literature on steroids in ME in detail but my understanding is that the evidence for benefit, if any, is limited. The few studies were some time ago as I understand it.

In rheumatoid arthritis the effect of steroids is dramatic and prolonged but even there the final verdict was that they should be avoided if at all possible. The only condition in which steroids are still the mainstay of treatment is polymyalgia rheumatica - lately because it responds to very small doses and tends to remit with time anyway.

 

[Jonathan Edwards]

It seems to me that "comparable value" would have to take into account the level of symptom relief experienced by the patient, yes?

As indicated above, even in RA where symptoms are terrible and respond well, the risk benefit analysis is negative - they are not used long term any more.

 

[trails]

As indicated above, even in RA where symptoms are terrible and respond well, the risk benefit analysis is negative - they are not used long term any more.

My symptoms are terrible and I'm responding well. Having said that, that does not mean that I intend to take this medication every day for the rest of my life, either. As you say, it is a risk-benefit analysis.

You indicate that the steroids produce a "high" that can mask all sorts of symptoms. I understand that. Is it also possible that the underlying cause of many of my symptoms is caused by an inflammatory process that the steroids are reducing? If so, is that at all revelatory as it relates to CFS, or is it common knowledge? Or are you suggesting that my response is not typical for most CFS patients?

I am hearing you loud and clear that steroids are dangerous and as a long-term treatment for anything should generally be avoided. However, while I have seen discussed on this forum (and others) numerous associations drawn between CFS and inflammation, I don't recall any previous discussion of studies or trials related to steroids to control that inflammation. I've only been on the forums for the last few years so perhaps it all happened "before my time".

 

[Chocolove]

Assuming you have low cortisol levels and your adrenal glands are no longer producing from high levels of stress throughout the years this would be a good treatment?

If I were you I would ask my doctor for alternatives to dangerous steroids. Your adrenals need to rest and recover and the corticosteroid will activate you pushing you past your limits, and for other reasons....

Check out Dr. Michael Lam's free website. (I have no affiliation with Lam.) Dr. Lam MD MPH, is one of very few doctors who specialize in adrenals. He specifically recommend things for adrenal recovery and provides a lot of that information on his website. If you are taking any stimulants like caffeine in coffee, tea, chocolate ... or even the stimulant sugar... you want to stop all... because they push your adrenals too far.

Think of your adrenals as 2 battalions once strong and ready .....now they are down to just 2 loyal battle weary soldiers. You can push them to far and they will loyally give their lives for what you demand. That can put you into an adrenal crisis which can quickly be fatal. Far better to nourish them and give them rest so that they, and you, can live to fight another day. Be forewarned that adrenals take a long time (infection free) to recover - months to a couple of years. Infections require a huge effort by the adrenals, so avoid them.

I purchased Dr. Lam's book, "Adrenal Fatigue Syndrome - Reclaim Your Energy and Vitality with Clinically Proven Natural Programs," and have found it very helpful in recovering my adrenal function. This book, published in 2012, is available through Amazon.com.

Make sure you cover this with your own doctor - and NEVER try to quit corticosteroids without a slow tape. Note that the lower the dose the harder it gets. Quitting cold turkey can kill.

https://www.drlam.com/about-af-syndrome.asp

 

[Binkie4]

@Jonathan Edwards- thank you for the explanation. Feel it's a bit of a gamble to choose to take the hydrocortisone, but at 69, maybe taking a risk might be worth it. Other comorbodities are involved now so quality of life has become very poor.
Am not really a risk taker however and I like to look after my adrenals. Good to know the reason why hydrocortisone is a problem.
Apologies for no yellow box. Am crashed after grandchildren have stayed and I need to concentrate to do that. No energy for concentration.

 

[slysaint]

As mentioned above, other big risks are cataracts and osteoporosis. From personal experience I would never go near Pred again even tho' I did have more energy; it completely messed me up for 2 years (am still getting over it now) and to say that I was almost glad the ME symptoms returned might give you some idea of how bad it can get.

The other scary thing is that although Pred is prescription only, topical steroids are freely available over the counter and cheap and being recommended by non-medically trained people for a plethora of skin conditions. Although these creams are low dose corticosteroid treatments, they are absorbed into the skin and the effect (as with orals) is cumulative. Drs are only just beginning to appreciate the dangers that long term use poses but it is the go to treatment and has been for decades.

Another thing is HPA axis suppression:
http://scholar.google.co.uk/scholar?q=hpa axis suppression corticosteroids&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&sqi=2&ved=0ahUKEwjRkvnVqpLSAhWKKcAKHf7xBEcQgQMIGDAA

Also there are a lot of drugs that can produce similar results that used to be considered 'safe':
http://www.medicaldaily.com/cocaine...youll-be-shocked-unhealthy-items-once-thought

Something you should also know is how strong Pred is in comparison to other corticosteroids. (Someone I know with Addisons takes 5mg of Hydrocortisone 3x a day.) 5mg of Pred equates to 20mg of Hydrocortisone:
http://www.nadf.us/downloads/adrenalhormone.pdf

 

[Sidereal]

Prednisone gave me 10% more energy while I was on it but completely messed me up otherwise. I get great energy and improvement in orthostatic intolerance from a hit of dexamethasone. But these things really aren't a viable treatment plan, they will shred your body.

 

[Chocolove]

@TedBakerBoy @trails Why not give your adrenals the ingredients to make cortisol? You may be deficient in key nutrients required by your adrenals to make cortisol That may be all you need to fix the problem - as well as many other problems your body has. Specifically:

According to adrenal expert Dr. Lam MD MPH, in the adrenals, "Magnesium works synergistically with vitamin C and pantothenic acid in steroid synthesis."

Yet in America, an estimated 70-80% of the population is deficient in Magnesium, they have been consuming less than the RDA for a long time. That has snowballing consequences in the body where magnesium is indispensable, required in a huge number of biochemical reactions. Thus magnesium deficiency is implicated in much of the chronic diseases of this country. Magnesium research is bearing this out and is readily available online.

Vitamin C is crucial and must be consumed daily like magnesium, as a water soluble vitamin much gets washed away in urine. Excess Magnesium is excreted in loosened bowels, a sign to spread the dosage out over time. By the way, that combo may also prevent painful kidney stones...

Know that it may take months to replete a magnesium deficiency and that your body will be using it in many long neglected processes, so you won't notice the dramatic false message that a pharmaceutical steroid sends. Instead you may actually recover - which is the real goal.

These are the ingredients to produce your own cortisol, as needed and safely.

 

[TedBakerBoy]

I appreciate all the advice but i'm no medical expert. We don't have time to give ourselves years of rest, I'm 23 and i want to live now i'm not being selfish i'm doing what anyone in my situation would do, Look at Big Arnold Schwarzenegger for instance he took high doses of Strong Anabolic Steroids all his life and he's still a walking machine, Most Drugs are made to help us and give us a better way of life.

 

[stridor]

As far as I know cortisol levels are to at least some extent controlled by a negative feedback loop like many other hormones. If someone stays within the perimeters of physiological doses there shouldn't be many problems. The adrenals would just produce and release less.

The problems start when doses exceed replacement levels. People in the 50s and 60s were being given therapeutic levels of steroids to treat all manner of inflammatory conditions and the long lists of warnings pertain to that.

Personally, I believe that hydrocortisone is better and before I found a Dr who would help me I stuck OTC ointment into capsules and swallowed that. It allowed me to stand up without being helped. Now I take it 5 mg x 5 daily. Frequent dosing allows me to spread it out and the smaller doses decrease peak blood levels with dosing.

If someone takes HC at levels that mimic what the body would normally be providing then risk is mitigated. Some of us do not have a choice. My biggest problem is not taking enough when I am stressed or sick. By the time I think about it I already have symptoms and it is hard to catch up again.

The one book that may interest you is Safe Uses of Cortisol by Jefferies

 

[Chocolove]

Arnold Schwarzenegger for instance he took high doses of Strong Anabolic Steroids

Corticosteroids cause muscle and bone wasting. Prednisone is not an anabolic steroid. Glucocorticoid-induced bone and muscle loss, osteoporosis and much more will be your sad life then. Your choice.

 

[Kati]

As much as you feel good today on steroids, it has a wide array of adverse events as discussed, including stomach ulcers, weight gain, osteoporosis and reduced ability to fight infections just to name a few. Imagine falling off on slippery ice and breaking your hip, at age 30. Not good.

Coming off them is horrible, I know because I have done it. You feel lethargic and depressed, really depressed with no way out. When times comes to get off the steroid, be sure to come off them very carefully with your physician advising.

One wants to feel good today and one wants to live life as much as possible, but the reality is we are sick and with this comes limitations. Ignoring the limitations and the cardinal rule of pacing (which implies living within your energy envelope) simply will catch up with you sooner rather than later.

Thread carefully.

Best wishes

 

[Binkie4]

@stridor

Not too sure about this.

As I said I took on prescription large doses of progesterone as a prescribed treatment for PMS in the 80s and 90s. It was taken for half the month then stopped for half a month. In the end, on the third day after stopping it every month, I "walked into a brick wall". No functionality at all. Had to give up my job.

Am not a scientist but it was hypothesised after seeing several gynaecologists that the progesterone, as a precursor to the corticosteroids, was being used as a steroid in my body. I felt great while on it but after 15 or so years, my body couldn't function without it. Had to be referred to a top endocrinologist who put me on it all the time and slowly, vv slowly reduced it. Each reduction led to muscle aches, fatigue etc, like ME. Took about 7/8 years, and I still take the tiniest dose of progesterone.

So am tempted by hydrocortisone but can't face possible difficulties. My adrenals didn't fail but were struggling when not taking progesterone.

I see that you are aiming to stay within physiological limits.
Hope that all stays well.

 

[TedBakerBoy]

I'm thinking of using a month of 5mg Monday Wednesday Friday then stop for a month then Use again Then stop for a month then use etc...

 

[Apple]

I'm thinking of using a month of 5mg Mon
day Wednesday Friday then stop for a month then Use again Then stop for a month then use etc...

Please listen to Prof Edwards. I have friends with crohn's who've been on steroids, they too get the 'high' of feeling better while on it, but it doesn't last - long term, the effects are not good at all. The long term harm to your body, outweighs any short term boost you may be getting. Especially as you are not being monitored by any doctor.

You'd be better off doing cocaine, quite frankly.

 

[TedBakerBoy]

Please listen to Prof Edwards. I have friends with crohn's who've been on steroids, they too get the 'high' of feeling better while on it, but it doesn't last - long term, the effects are not good at all. The long term harm to your body, outweighs any short term boost you may be getting. Especially as you are not being monitored by any doctor.

You'd be better off doing cocaine, quite frankly.

It's only 5mg not 80mg

 

[Sushi]

As much as you feel good today on steroids, it has a wide array of adverse events as discussed, including stomach ulcers, weight gain, osteoporosis and reduced ability to fight infections just to name a few.

Here is another: there is an association with developing atrial fibrillation--something that you really do not want to develop.