Prednisone

[AndrewB]

About five months ago, after the onset of my illness last summer, my GP prescribed me with Prednisone, even though he saw no inflammtion markers in my bloodwork, he said it was worth a go.
I was given a dosage level of 60mg a day.
I took the first dosage, and i thought i was cured as within the first few hours my breathing was stable and my energy levels were back to normal.
However....
About 3 hours after taking the first dose, i got some extremely horrible psychiatric symptoms, paranoia, fear, panic, ect.
I called my GP the following day, and was advised to stop them straight away.
The psychiatric symptoms took a week to fully go away.
I wanted to ask if anybody else here has has any experiences with that drug, and if this kind of a reaction is commen in ppl with ME.

AndrewB

 

[ukxmrv]

I've never had a psychiatric reaction to Predisone. It was a pity high dose I think that your doc had you on. I have tried Pred and although it does have some sort term good effects they wear off and I am left worse off then before (with physical symptoms and immune / viral problems. I still use Pred to give me a short boost to get to very important events (i.e. the odd funeral/wedding etc) but very, very sparingly.

One theory is that steroids depress what you have left of an immune system and allow any chronic infections to bloom.

Some PWME are very sensitive to all medications. It pays to take very small does and work up.

You will learn what to do and what not to do for maximum functioning and your GP will have to learn through you (if they are willing)

 

[AndrewB]

I've never had a psychiatric reaction to Predisone. It was a pity high dose I think that your doc had you on. I have tried Pred and although it does have some sort term good effects they wear off and I am left worse off then before (with physical symptoms and immune / viral problems. I still use Pred to give me a short boost to get to very important events (i.e. the odd funeral/wedding etc) but very, very sparingly.

One theory is that steroids depress what you have left of an immune system and allow any chronic infections to bloom.

Some PWME are very sensitive to all medications. It pays to take very small does and work up.

You will learn what to do and what not to do for maximum functioning and your GP will have to learn through you (if they are willing)

The major problems for me is im allergic to NSAIDs, so this was his only option.
I wouldnt want to be put into that state of psychiatric disturbance again, it was really
awful and i was wondering if the mental reaction could have been brought on by M.E
but ive done some surfing on google and it seems that Prednisone is well know to effect
even fairly healthy people with extremely horrible psychiatric symptoms.
For me its not an option now, im phisically too ill to take a shake like that again.

Andrew

 

[Valentijn]

Prednisone is pretty well known for messing people up. Personally it put me a stabby/cranky/aggressive mood the entire time I was on it. Had to be very non-social

 

[ukxmrv]

Really sorry to hear that.

His only option to what Andrew?

Specifically which symptom was he trying to treat.

 

[liquid sky]

Prednisone just gives me energy, but also makes me hyper and anxious. I use it on occasion to get through something important, as ukxmrv stated. 60 mg. is a really large dose to start you on. A bit of overkill.

Do you feel inflamed? It is a long game of trying different meds and learning your limitations, when to push and when to let up, to get to some kind of balance. I still hope there will be real treatments soon.

 

[justy]

Hi Andrew, i was given steroids during my relapse 3 years ago with pneumonia, my dose was no where near that high and i also have other lung complications. After 2 courses of steroids and a super high dose of inhaled steroids which they forgot to take me off my immune system was shot to pieces, i had one infection after another and also started having horrible hormonal symptoms and feelings of anxiety panic etc.

As others have said, it is normal for some PWME to over react to normla dosages of drugs -i had a terrifying reaction to an SSRI class of antidepressant that took me over a year to recover from. Nowadays i research a drug before i take it and weigh up if i really need it or wether i can try a herbal/natural alternative. if i do need it i start with very very tiny doses to see if i react or not.

 

[AndrewB]

Really sorry to hear that.

His only option to what Andrew?

Specifically which symptom was he trying to treat.

My throat was very tight, and it felt swollen, swallowing was really hard for me, and i was really having difficulty breathing. Actually ive just woke up after about 2 hours sleep and i cant get any breath now, its as if there's no oxygen in the air.

Andrew

 

[AndrewB]

Hi Andrew, i was given steroids during my relapse 3 years ago with pneumonia, my dose was no where near that high and i also have other lung complications. After 2 courses of steroids and a super high dose of inhaled steroids which they forgot to take me off my immune system was shot to pieces, i had one infection after another and also started having horrible hormonal symptoms and feelings of anxiety panic etc.

As others have said, it is normal for some PWME to over react to normla dosages of drugs -i had a terrifying reaction to an SSRI class of antidepressant that took me over a year to recover from. Nowadays i research a drug before i take it and weigh up if i really need it or wether i can try a herbal/natural alternative. if i do need it i start with very very tiny doses to see if i react or not.

What SSRI was it you were given justy ? Was it Citalorpam ? I only ask as i was given that many years ago when my mother died. It didnt really help me but i didnt get any bad reaction, although i might if i were to take it now. I remember it caused me a slight headache sometimes, at the moment ive got more of a feeling of pressure in my head, not really the normal headache feeling.

Andrew

 

[AndrewB]

Prednisone just gives me energy, but also makes me hyper and anxious. I use it on occasion to get through something important, as ukxmrv stated. 60 mg. is a really large dose to start you on. A bit of overkill.

Do you feel inflamed? It is a long game of trying different meds and learning your limitations, when to push and when to let up, to get to some kind of balance. I still hope there will be real treatments soon.

Hi, he told me it was a high does, but at that stage id been badly ill for months and he thought if he could bring any swelling under control by way of a prednisone kosh it might work. Its funny you mention it gives you energy, i get the same kind of short term relief from the fatigue from zopiclone. I wonder if anyone else has experienced that ? i take 15mg (two 7.5mg tablets) and i sometimes sleep with it, but it does give me at least an hours respite from the constant onslaught of the crippling fatigue. Im just entering my fifth week of it and im so sick and tired of it, sometimes i could actually cry.

Andrew

 

[ukxmrv]

Andrew, patients call that symptom "air hunger" and I get it exactly the same today as I did decades ago. It's complicated for me as my throat / tonsils swell up as well and get infected. Antibiotics, antivirals and immune modulators help me with this but it keeps coming back.

The only ways I've ever found of making the air hunger better is to sit with a window open (if cool air outside) or by an air-conditioning unit if not. Sipping very cold water helps plus cold baths, ice packs and chillows. My body can't regulate temperature and I need to keep cold if warm outside.

 

[AndrewB]

Andrew, patients call that symptom "air hunger" and I get it exactly the same today as I did decades ago. It's complicated for me as my throat / tonsils swell up as well and get infected. Antibiotics, antivirals and immune modulators help me with this but it keeps coming back.

The only ways I've ever found of making the air hunger better is to sit with a window open (if cool air outside) or by an air-conditioning unit if not. Sipping very cold water helps plus cold baths, ice packs and chillows. My body can't regulate temperature and I need to keep cold if warm outside.

What is the cause of 'Air Hunger', is it the muscle that help you breathe being extremely fatigued like all my other muscles ?

Andrew

 

[Cindi]

This is terribly high dose.I think you went through steroid psychosis.
http://www.drrichardhall.com/steroid.htm

 

[AndrewB]

This is terribly high dose.I think you went through steroid psychosis.
http://www.drrichardhall.com/steroid.htm

hi Cindi,

i read the link, i completely concur with you, i think it was steroid psychosis. it actually took me weeks to recover from.
it would make any thought i had become frightening and i do mean extremely scary. i couldnt trust my own mind. horrible feeling
and totally unexpected as ive got an asthma inhaler so i didnt suspect id have a problem with prednisone.
i wouldnt take that again unless it was some kind of emergency.
the sad thing was, had i been able to tolerate it, it actually made me feel much better for the first few hours, i was eating
everything in sight, could breath well and was no longer fatigued. i wonder how long that would have lasted.

 

[SOC]

FWIW Andrew, in the early days of my illness when I was reacting to everything under the sun, a Medrol Dosepack (methlyprednisone) made me feel almost normal for months. I believe the Dosepack slowly increases the dosage of the steroid and then decreases it again over about 10 days, so it's supposed to be easier (and healthier) for your body to handle. It didn't give me any trouble and I could do it once or twice a year when rxns got intolerable.

I think your doctor must have been mad to give you the dosage of prednisone he did.

 

[aprilk1869]

I have no idea whether this relates to Prednisone however I did read this about steroids:-

It is also common to treat MS with steroids. Our supposition is that steroids work because they release any lingering B12 in your stores, even when your stores are so low that there's only a tiny drop left that the body can't get access to without the additional steroids. Steroids also make the cells use the B12 more "enthusiastically". If your GP wants to give you steroids at the same time as (or after) B12 injections, then this could boost the use of the B12 in the short term, which is a good thing as long as you are getting more B12 to restore your body stores. This may explain why the effects of steroid injections on their own wears off.
http://www.b12d.org/content/multiple_sclerosis

 

[Graham]

Hi Andrew

I don't know if this is of much use to you, but at least it will put the dose into perspective. I had a bout of polymyalgic rheumatica in 2005, which is pretty painful. It took me a while to realise that it wasn't just a bad ME bout, but when I saw my GP he put me on a high dose (25mg!!!) to start, and that solved the problem within a couple of days. The condition is long-lasting though. I was quickly reduced to 15mg within a week, then tapered slowly down to 10mg. I have been on that more or less since then, tapering down to below 7.5 mg when the symptoms return. But at those doses, I didn't get any mental effects at all. Quite the opposite - it even seemed to help the ME. I gather that there can be long-term side effects - putting on weight, losing calcium from the bones, thinning skin, man boobs etc. but none of them affect me, and I gather that it is only really for doses above 10mg. I have read reports of patients with ME going on low doses (around 5mg) just to help with the ME, but don't know of anyone in that position. A friend did have a large dose a few years ago as you did, to help her go on holiday (!), and she said that it took her well over a year to get back to her ME normality.

I have had a few months without any steroids - tapering off very very slowly, but the pains in the muscles came back along with the exhaustion (that is, in addition to, and rather different from the ME fatigue) - so that is why I am back on them at 10mg, and will start to taper off again in a couple of months. I can't get over what a big dose you were had, given that just 25 mg really sorted out the intense pain of my PMR. The best of luck with your recovery.

 

[Cindi]

I have no idea whether this relates to Prednisone however I did read this about steroids:-

I found your note very interesting. I am now thinking if one has high cortisol in the body,would that cause low serum b12 and if the reverse is also true? if person has low cortisol would he have high serum b12? I personally have low cortisol and high serum b12 and was searching for the cause of this for many years. Any inputs will be highly appreciated. thanks.

 

[Cindi]

Here is another article which mentions about relationship between high cortisol and low b12.

"The initial response to any stress is the hypersecretion of cortisol, but over time (approximately one year) there develops a negative feedback and a genuine "fatigue" causing reduced levels of DHEA-S and cortisol. The end result is an organism with reduced immunity, increased likelihood of autoimmune disease, heart attacks, elevated cholesterol and triglycerides, skin disorders, carbohydrate cravings, protein wasting, fatigue and depression (to name but a few). Physicians normally view these as separate events in a given organ and do not see that the symptoms represent a disease process (inflammation) that may occur in one or more organs simultaneously. Therefore everyone with any chronic disease, not just cardiovascular disease, should be screened using DHEA-S and a homocysteine level. As DHEA-S decreases, the level of homocysteine rises, with a concomitant decrease in most B-vitamins, but especially folate and B12. "
http://findarticles.com/p/articles/mi_m0ISW/is_262/ai_n13675760/

 

[aprilk1869]

Was just reading the latest articles on lef and noticed this in the article about lipoic acid and the mitochondria:-

Preventing steroid-induced osteonecrosis. Corticosteroids such as prednisone threaten bone health and increase fracture risk by impairing blood flow to bone.In an animal model, lipoic acid helped prevent steroid-induced osteonecrosis (bone death that increases fracture risk), possibly by reducing oxidative stress and/or by improving endothelial function.
http://www.lef.org/magazine/mag2011/aug2011_Lipoic-Acid-Reverses-Mitochondrial-Decay_01.htm