Corticosteroids, prednisone, dexamethasone, etc...
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"The most prominent symptom constellation to appear some time during the course of the illness consisted of emotional lability, anxiety, distractibility, pressured speech, sensory flooding, insomnia, depression, perplexity, agitation, auditory and visual hallucinations, intermittent memory impairment, mutism, disturbances of body image, delusions, apathy, and hypomania."
Having watched someone take megadoses of steroids, and from listening to my great aunt (chemo nurse), many of those symptoms are pare for the course... I think where it really differs is the hallucinations, mutism, delusions, disturbances of body image, memory impairment, etc. Almost everyone gets the emotional lability, anxiety, distractibility, pressured speech, agitation, and hypomania (but not full blown mania).
Interesting that they noted that all patients deteriorated when treated with tricyclic antidepressants. ME patients historically have done really poorly with TCA's in anything but microdoses. I cannot tolerate them at all, even when i only take a crumb of the smallest dose made. I have one family member who experienced extreme agitation (not psychosis or mania, and he didn't require treatment, but he found it very unpleasant and felt very agitated and aggressive/combative) on a very low dose of TCA's (he doesn't have ME though).
Having watched someone take megadoses of steroids, and from listening to my great aunt (chemo nurse), many of those symptoms are pare for the course... I think where it really differs is the hallucinations, mutism, delusions, disturbances of body image, memory impairment, etc. Almost everyone gets the emotional lability, anxiety, distractibility, pressured speech, agitation, and hypomania (but not full blown mania).
Interesting that they noted that all patients deteriorated when treated with tricyclic antidepressants. ME patients historically have done really poorly with TCA's in anything but microdoses. I cannot tolerate them at all, even when i only take a crumb of the smallest dose made. I have one family member who experienced extreme agitation (not psychosis or mania, and he didn't require treatment, but he found it very unpleasant and felt very agitated and aggressive/combative) on a very low dose of TCA's (he doesn't have ME though).
bertiedog
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Just wanted to say that I have never taken high dose steroids but I do take 6 mg Pred plus often 2.5 mg h/c last afternoon since 2002. It has helped me hugely because of severe adrenal issues.
I can always tell when I am running low, my body soon gives me symptoms like light headedness/dizziness/swimmy head with pressure and also pain in my body. All those symptoms disappear when I am topped up.
The only side effect I have experienced is very slight fluid retention in my ankles. I need it so that I can tolerate the dessicated thyroid meds I need because of Hashimotos. With these 2 meds and herbal treatment for Lyme disease since last September I am now regularly doing 8000-9000 steps daily and can feel very well.
I do have episodes on some days, especially if it is very warm when my heart will play up a bit but 20 mg Propananol will stop this after about 35 minutes. Its a form of POTS.
Looking back at my history I think I was born with small adrenals because even as a teenager I never had good stamina and I had a tendency to anxiety and fear for no good reason. My mother was the same and apart from our genetics we both experienced a very heavy blood loss either during childbirth or in my case immediately after. I was told they picked up 4 pints of blood from me after the birth of my 3 rd baby in 1975. I was never the same and from 1979 onwards had frequent attacks of vertigo that would leave me bedridden for days on end. Often there were horrendous migraines too. This pattern went on until 2002 when a private Endo told me that with my history and also my DHEA/cortisol saliva tests I needed to be on a steroid. I was started on 20 mg h/c and it was the first drug I had ever had that I didn't react badly to, in fact my body loved it .
After 6 months I was switched to 5 mg Prednisolone and this felt even more natural to me and it stopped the artificial highs and lows I got on the h/c. Also I started sleeping so much better and no longer woke at night with terrible panic attacks or needing to eat just to get my blood sugar up. Often I sleep deeply all night.
I realise I am not a typical ME/CFS sufferer because of my history but for me Prednisolone saved me from a life of hell that had no quality. At 67 I can do part time work and enjoy it and also I run the local support group for Fibromyalgia in addition to enjoying my life. Although the thyroid and adrenal meds gave me my life back I still had a very weak immune system but this is understandable because of the borrelia issue. Now that I am treating that with the Cowden herbal protocol I have made great progress. For instance my steps used to be around 5500 daily when I started treatment whereas today so gar its over 10000 (but the average is around 8500). In the past month I have managed over 10,000 steps on 4 occasions something I could never have imagined.
Finally when I had a DEXA scan 4 years ago I was told I had the bones of a young woman despite the fact I was 64 at the time but I do have a high calcium diet and take good supplements plus very low dose Estrogen so even the worry of osteoporosis hasn't turned out to be true for me. I exercise every day by walking my Beagle and on some days lifting gentle weights. Some days naturally I have a lot more energy than others but the amount I can do is becoming quite consistent. over the past couple of months. Its so encouraging.
Every day I am so grateful for the treatment I have.
Pam
I can always tell when I am running low, my body soon gives me symptoms like light headedness/dizziness/swimmy head with pressure and also pain in my body. All those symptoms disappear when I am topped up.
The only side effect I have experienced is very slight fluid retention in my ankles. I need it so that I can tolerate the dessicated thyroid meds I need because of Hashimotos. With these 2 meds and herbal treatment for Lyme disease since last September I am now regularly doing 8000-9000 steps daily and can feel very well.
I do have episodes on some days, especially if it is very warm when my heart will play up a bit but 20 mg Propananol will stop this after about 35 minutes. Its a form of POTS.
Looking back at my history I think I was born with small adrenals because even as a teenager I never had good stamina and I had a tendency to anxiety and fear for no good reason. My mother was the same and apart from our genetics we both experienced a very heavy blood loss either during childbirth or in my case immediately after. I was told they picked up 4 pints of blood from me after the birth of my 3 rd baby in 1975. I was never the same and from 1979 onwards had frequent attacks of vertigo that would leave me bedridden for days on end. Often there were horrendous migraines too. This pattern went on until 2002 when a private Endo told me that with my history and also my DHEA/cortisol saliva tests I needed to be on a steroid. I was started on 20 mg h/c and it was the first drug I had ever had that I didn't react badly to, in fact my body loved it .
After 6 months I was switched to 5 mg Prednisolone and this felt even more natural to me and it stopped the artificial highs and lows I got on the h/c. Also I started sleeping so much better and no longer woke at night with terrible panic attacks or needing to eat just to get my blood sugar up. Often I sleep deeply all night.
I realise I am not a typical ME/CFS sufferer because of my history but for me Prednisolone saved me from a life of hell that had no quality. At 67 I can do part time work and enjoy it and also I run the local support group for Fibromyalgia in addition to enjoying my life. Although the thyroid and adrenal meds gave me my life back I still had a very weak immune system but this is understandable because of the borrelia issue. Now that I am treating that with the Cowden herbal protocol I have made great progress. For instance my steps used to be around 5500 daily when I started treatment whereas today so gar its over 10000 (but the average is around 8500). In the past month I have managed over 10,000 steps on 4 occasions something I could never have imagined.
Finally when I had a DEXA scan 4 years ago I was told I had the bones of a young woman despite the fact I was 64 at the time but I do have a high calcium diet and take good supplements plus very low dose Estrogen so even the worry of osteoporosis hasn't turned out to be true for me. I exercise every day by walking my Beagle and on some days lifting gentle weights. Some days naturally I have a lot more energy than others but the amount I can do is becoming quite consistent. over the past couple of months. Its so encouraging.
Every day I am so grateful for the treatment I have.
Pam
bertiedog
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Forgot to say I no longer suffer with any anxiety or fear issues at all and haven't for many years. Its a minor miracle compared to what I suffered during the 80s and 90s.
Pam
Pam
I have heard other anecdotal reports of patients doing well on low dose continuous steroids, often just hydrocortisone. Doctors are often hesitant to prescribe this but in some cases it is justified. Also, sometimes immune activation and/or dysregulation can cause more bone density loss than a bit of hydrocortisone. It does increase risk of weight gain and impaired glucose tolerance (leading possibly to diabetes), but not in everyone, and if it makes you a lot more physically active, it might offset it. The problem here seems to be, at least in part, that docs don't usually consider ME a serious enough illness to treat with a drug that could have serious side effects. They are trained to believe they are now treating a psychiatric or hysterical illness with dangerous medications... it's the prejudice we all face daily in getting good care. I know we don't have a cure yet, but we do have the tools to treat patients a lot better than we do, even if it involves a fair bit of trial and error.
I doubt you were born with small adrenals, or at least that it's relevant. You can remove an entire adrenal gland surgically and patients are unaffected - the other one just makes more (the amount produced is regulated - it's not just producing whatever it can produce). The issue might be that your body, for whatever reason, might just need more. There are many possible reasons for this, but some people's immune systems are more indolent and others more aggressive, and various environmental and genetic factors can create varying amounts of inflammation. Also, there are genetic polymorphisms in the regulation of cortisol and in the receptors that respond to it - so the same amount of cortisol in one person may be insufficient, and in another it may be excessive.
My endo is unusually smart in this respect - he understands that you cannot just base all decisions off lab tests for hormones because different people react differently. You have to listen to your patients, take histories, try things, and have the patient report back as to whether symptoms are better, worse, or the same. Most docs are slaves to the lab test reference range.
I doubt you were born with small adrenals, or at least that it's relevant. You can remove an entire adrenal gland surgically and patients are unaffected - the other one just makes more (the amount produced is regulated - it's not just producing whatever it can produce). The issue might be that your body, for whatever reason, might just need more. There are many possible reasons for this, but some people's immune systems are more indolent and others more aggressive, and various environmental and genetic factors can create varying amounts of inflammation. Also, there are genetic polymorphisms in the regulation of cortisol and in the receptors that respond to it - so the same amount of cortisol in one person may be insufficient, and in another it may be excessive.
My endo is unusually smart in this respect - he understands that you cannot just base all decisions off lab tests for hormones because different people react differently. You have to listen to your patients, take histories, try things, and have the patient report back as to whether symptoms are better, worse, or the same. Most docs are slaves to the lab test reference range.
deleder2k
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I've tried 8 mg of dexamethasone (equates to rougly 53 mg of prednisolone) a few times. Can't say that I felt better. Haven't tried it multiple days in a row though.
On the contrary; I have heard patients saying that they felt symptom free for 1-2 days after receiving dexamethasone after being stung by a bee.
On the contrary; I have heard patients saying that they felt symptom free for 1-2 days after receiving dexamethasone after being stung by a bee.
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SOC
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Where is your endo and can I get an appointment, pretty please?
@SOC - I don't want to put his name up on the boards - I don't list docs unless they are willing to be listed (never asked him). He's not an ME expert or specialist, and doesn't treat ME outside of his normal scope of practice (diabetes, endocrinolgy, and metabolism - I think that's technically the specialty). So if you go in and want a script for something simple that is not endocrinology, the answer will be that he doesn't know enough about that branch of medicine to treat.
He does have a lot of ME patients though, and never once has made me feel crazy for having the diagnosis. He always writes it every visit on the form in the record. I actually met him at a conference on ME where he spoke on thyroid manifestations. He will treat patients for thyroid issues regardless of TSH - although he does look at it frequently. He listens to what his patients have to say about symptoms, and he does a good physical exam as well, and bases treatment decisions on that - but a lot of the time he'll ask you what you feel works better - he believes patients know their own bodies and should trust them. He used to teach the endocrinology course at one of the top US med schools - but now is only in private practice. He taught the standard stuff, but saw that patients, despite conventional wisdom, were not all optimized at the same TSH - and believes that some patients need to be treated to TSH below the reference range and others above.
Definitely very uncommon in how he understands things, but he's often decades ahead of everyone else. He was looking at things in me that mainstream docs look at now 10 yrs ago. All office visits run about an hour, where you sit across a table and speak to him face to face and he listens and offers suggestions. He's very interested in diet and nutrition and knows a lot about it.
Definitely smarter than the average bear. Very curious, but more than anything he always listens and believes his patients. He may not always think they are right - but he never thinks they are making stuff up, exaggerating, drug seeking, or hypochondriac.
He does expect his patients to do some work though - like if you want to eat a crappy diet and pop lots of pills to compensate, he is not your guy. He will not tell you to exercise if you have ME, but he will expect you to follow a healthy diet, allowing for food sensitivities. If you tell him that food x or med y makes you have reaction z, he will just believe you and write it down.
He does have a lot of ME patients though, and never once has made me feel crazy for having the diagnosis. He always writes it every visit on the form in the record. I actually met him at a conference on ME where he spoke on thyroid manifestations. He will treat patients for thyroid issues regardless of TSH - although he does look at it frequently. He listens to what his patients have to say about symptoms, and he does a good physical exam as well, and bases treatment decisions on that - but a lot of the time he'll ask you what you feel works better - he believes patients know their own bodies and should trust them. He used to teach the endocrinology course at one of the top US med schools - but now is only in private practice. He taught the standard stuff, but saw that patients, despite conventional wisdom, were not all optimized at the same TSH - and believes that some patients need to be treated to TSH below the reference range and others above.
Definitely very uncommon in how he understands things, but he's often decades ahead of everyone else. He was looking at things in me that mainstream docs look at now 10 yrs ago. All office visits run about an hour, where you sit across a table and speak to him face to face and he listens and offers suggestions. He's very interested in diet and nutrition and knows a lot about it.
Definitely smarter than the average bear. Very curious, but more than anything he always listens and believes his patients. He may not always think they are right - but he never thinks they are making stuff up, exaggerating, drug seeking, or hypochondriac.
He does expect his patients to do some work though - like if you want to eat a crappy diet and pop lots of pills to compensate, he is not your guy. He will not tell you to exercise if you have ME, but he will expect you to follow a healthy diet, allowing for food sensitivities. If you tell him that food x or med y makes you have reaction z, he will just believe you and write it down.
I have been taking HC at 25mg in divided doses for a few years it has helped alot- however last week i had to take predisone 20mg for a rash, and by the 4th day, i felt really good .. good energy good mood.. rash almost gone so i stopped the predi now low energy crash again- maybe i need an adjust to the HC?
Woolie
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Hi @cb2, the trick with pred is to complete the course, and drop down slowly. Usually, the doc or the phramacist will give you explicit instructions - often something like "Take 20mg for four days, then 10 mg for the next four days, etc...." Its very important to drop down slowly because you body needs to relearn to produce its own cortisol. Otherwise, you can end up with a sudden lack of cortisol.
Oh and 4 days might not be enough to get you out of the woods with the rash.
You might want to talk to your doc again, he/she might suggest you start at the top again with 20mg pred per day and drop slowly this time.
Woolie
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PS @cb2, forgot to say - interesting to hear the pred lifted your CFS symptoms. Although not all of us have had a good response, it seems a sizeable number of us do.
@Sidereal, maybe I'm not "atypical" on this - not a lot of people have tried good doses of pred, but from what I have seen on this thread and related ones, more have responded positively than not.
@Sidereal, maybe I'm not "atypical" on this - not a lot of people have tried good doses of pred, but from what I have seen on this thread and related ones, more have responded positively than not.
@Woolie someone told me that some folks do better with longer acting steriods so i guess that would attribute to the predi working for some. I know when i first started HC a few years ago it was a life saver- ! now i have no idea how to tell if i am on the right dose of HC ?
as far as the pred goes, i asked 2 drs about the taper and they said 20mgs a day wasn't enough to need a taper- but yesterday i only took 10..so i was kinda trying to taper myself...maybe i will take that 10 again tomorrow. they only gave me 7 tablets so not enough for the full dose plus taper-
as far as the pred goes, i asked 2 drs about the taper and they said 20mgs a day wasn't enough to need a taper- but yesterday i only took 10..so i was kinda trying to taper myself...maybe i will take that 10 again tomorrow. they only gave me 7 tablets so not enough for the full dose plus taper-
Woolie
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Sounds like you were going on good advice. My understanding was the opposite: that you could drop from, say 40mg to 20mg in one shot, but when you get to the 20mg and below, you need to taper (this is the high risk zone where your cortisol levels might end up dropping below normal baseline if you drop too fast). But that's only what my doc said, I know very little myself.
Pred may work better because its long acting, but also cos its four times as powerful (20mg pred = 80mg HC).
Woolie
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Yea, I hadn't thought of that. You're probably covered, and can afford to drop faster.
heapsreal
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Interesting ?
I was recently on 50mg of pred for a viral infection and felt pretty good also. Was only on this dose for 2 days and than tapered off, 25mg for 2 days , 12.5mg for 2 days and 6mgs for one. Felt a little sluggish when i finished.
but makes me wonder if theres something to these high doses, may we actually need these higher doses? Our body is suppose to increase it own cortisol levels in times of stress and i wonder if our bodies just cant do it any more.
I thought i would have sleep problems with high dose of pred but i slept well. Even though testingwe may have adadequate levels, during timez of stress we dont have the ability to make enough cortisol???